Here is their journey told in blog updates from friends, family, and Hannah's parents.
May 18th 2012
"Hello everyone....As most of you probably know, Hannah Mae Campbell was born this morning at 2:22am, weighing in at 8lbs, 15 ounces. Jen did very well. Unfortunately, Hannah had a bit of trouble with her heart. It's rate was too fast and after an x ray it was discovered that her heart was enlarged. Jon and Jen are distraught, but Hannah is in the best care, and hopefully they will know more soon.To this end, they want to extend their gratitude to all of those who have been praying for them and for Hannah; they truly feel very supported. But with emotion so high and uncertain they are asking for privacy at this time. They are only admitting family visitors for now. If you would like to offer to prepare a meal or something, please contact Kathy Ostlund at Our Saviors Lutheran Church (425-252-0413); she would be more than happy to get together a list through our Care Team. If and when there is more to tell, I will update the note.Thank you, Kelly."
"So, further update.... Hannah is stable enough that they are going to be transporting her down to Childrens to be nearer to the experts, but stable is good. Both Jon and Jen are able to go down to be with her, and their family is covered for now. Kathy is office at the church until Monday, but I know where she is otherwise, and will be in contact with her before Monday. I don't believe that they will have any need for dinners or anything until they get home, and we don't know exactly when that will be. Maybe if you have something that you could make, or do, dinners, transportation, play dates for the boys when they get home, you could leave your name, a way to be reached, and what you would be willing to assist with attached to this note, or leave me an e-mail at email@example.com so that I could pass that info off to Jen and Jon and they can decide what would best help them in the coming days and weeks. I know they appreciate your prayers and thoughts!"
"This morning: Message from Jon last night; docs say the thickening of her heart is not affecting her ornal (?) heart function and that they typically see kids outgrow this. They want to monitor and do more tests, but it's a positive. Hopefully today will be a bit more peaceful for them and they will get to spend some good quality time with their new girl!
May19th 2012 "As most of you may know, yesterday we welcomed into this world our baby girl Hannah Mae at 2:22 am. These past 24 hours have been the hardest in my life. I cannot bring myself to explain all that happened but wanted to let those of you that are praying and thinking about me and my family how much I truly appreciate you. Providence in Everett was absolutely amazing and the doctors and nurses did everything they could but after 12 long hours they decided it would be best for us if they transported her to Childrens Hospital in Seattle. Jon and I followed her here last night and they have given us a place to sleep. I don't know actually how much sleep I got but all I know is when we got here questions are starting to get answered and they let me hold my baby girl for the first time. I cannot express to you how amazing that felt! Love the ones you have and please do not take any relationship you have for granted. Thank you again for all the support everyone is showing to us." ~Jennifer Campbell
May 20th 2012
"Things continue to look up.... Jon says that the doctors have been positive, and that they think that the thickening of Hannah's heart is something that can by typically outgrown, they just need more tests to check for sure, and that her rapid heartbeat can also be outgrown and managed with medications at home. The thickening of her heart will need to be monitored for awhile, but things continue to look brighter instead of darker!! I hope that you were all able to see the new pics that Jen posted of the boys getting to hold their baby sister; they are absolutely precious!"
"Jen and Jon are amazed by all the wonderfully supportive people at Children's, they are in the best place possible. I will start compiling a list today of all of those who want and are able to assist Jon and Jen with things they might need once they return home, dinners, transportation, help with the boys, etc. My e-mail again is firstname.lastname@example.org; if you can send me an e-mail with what you could contribute and the times that you are available that would be best. Thank you!"
May 21st 2012
"Things still continue to look up!! Hannah is off her IV meds, and handling her oral meds well. She is eating well and mom has gotten to bottle feed her a few times. In short, she's acting pretty normal for a baby with an enlarged heart... so much so that they were able to leave the intensive care unit today for a regular room!! Thank God that each day is getting better and brighter!!"
May 24th 2012
"Hannah is coming home tomorrow! She has been 48 hours without episode!!!! She is doing well on her meds and acting just as a baby should. Jon and Jen have been asked by their doctor to make sure that they stay quiet for the next three weeks, no going out, no large crowds, and no real visitors other than family... just quiet time as they adjust to Hannah and her issues and try to figure out life with this new, awesome baby. Congratulations, Jon and Jen. I am truly awed by the strength and courage you have shown over this last difficult week. You have a beautiful family. God is good!" ~Jennifer Campbell
"So our life took a horrible turn yesterday. After heading to a routine cardio appt for our sweet little Hannah, the doctors found her heart has grown rapidly since they let us go home. They admitted us back into Seattle Children's and I have never been so scared in my life. I am asking for your thoughts and prayers. Hannah is so strong and god created her for something great!" ~Jennifer Campbell
"This morning we got news that Hannah was starting to gain weight and she was loving her Aunt Jalaine. Then her little body could not handle the changes and she went into 2 severe SVT episodes. The doctors have moved us back to CICU. She is hanging on but please continue to pray for my sweetie pie. Thank you to everyone for your continued support." ~Jennifer Campbell
"Thank you from the bottom of my heart to everyone that has shown us support during this time in our lives. I know I have not been the best of friend or family member lately, it has been hard for me to return calls and reply to all the messages but know that I am so thankful for all the kind words and prayers Hannah Mae and our family is receiving. I am completely broken. I feel like we are on a never ending roller coaster ride. I pray we soon find direction, it is so hard to know that the doctors aren't sure which way to go with this. Every option that they are giving now seems to come with it's own challenges. I know that every moment I have with Hannah is such a blessing and I am so thankful for the impact she is having on my life. Love your little ones, kiss them and hug them." ~Jennifer Campbell
"So here we go again. Hannah was moved out of the ICU on Wed of this week. She continues to have at least one attack of SVT every day. Today she suffered a very persistent attack and was moved back into ICU. Tomorrow she will go under sedation to install a permanent IV in her arm. Because of her heart condition this poses some risks. Later on this week she has been referred for a heart catheter operation that could solve some of our problems... or leave her with a pace maker for the rest of her life. We ask that our friends join us tomorrow and every day next week and take a minute to remember Hannah Mae Campbell in their prayers. Thank you in advance." ~Jennifer Campbell
"Hannah has been SVT free for the past 15 hours. I hope this combination of drugs will finally work. She went in for a picc line today because all the IV's they have been putting in have been collapsing her veins. Originally they were going to have to put her under anesthesia and because of her heart condition there was a ton of risks but once in the operating room the doctors were able to use local anesthesia instead and she came out smiling and ready to eat. Thank you for your prayers!" ~Jennifer Campbell
"One step forward, 2 steps back. We found out this week that the doctor's saw no obstruction in Hannah's heart which means the blood flow is good. They think her heart might be remodeling itself. We were a little over 48 hours with no SVT and now for whatever reason she had break through and has experienced 3 in less than 24 hours. The team of doctor's decided to change her dose again and hopefully we can see improvement soon. My sweet little girl can not come home until we are sure she is not having the fast heart rates because it can be fatal with her cardiomyopathy. 29 days spent at Seattle children's hospital with no end in sight. Lord help us!" ~Jennifer Campbell
July 4th 2012
"Jonathan Campbell and I had been together for 3 and 1/2 years when we got married. We have had full custody of his boys for quite some time but we always knew we wanted to try for another child together. He dreamed of another boy but I prayed and prayed for a girl. I always knew if I were to have a girl I would name her after the strongest woman I knew, my grandmother, who had passed away 2 years prior. The middle of August came and we found out we were expecting. A couple of months later we found out we were going to have a girl in May and her name was going to be Hannah. Blood tests and ultrasounds all came back normal and time was passing so quickly. The due date came and went and we all were anxiously awaiting Hannah's arrival. In the early morning hours of May 18th Hannah Mae Campbell finally made her debut. I gave birth at 2:22am and instantly felt an indescribable love. She was placed on my chest for a minute or two before she was whisked away to be "cleaned up". Jon and I were overwhelmed with joy, tears streaming down our faces we sent texts and made calls. Our little girl was finally here! It seemed like seconds later our hospital room that was just filled with so much love was now filled with ICU doctors and nurses. I was then told Hannah's heart was beating 257 bpm and to kiss my girl because they were taking her to the ICU. I have never felt so empty in my life as my husband and my newborn baby girl left the room. I laid in bed paralyzed from the epidural, waiting for every text from my husband to find out what was going on. No one had answers. 15 hours later the hospital was transferring us to Seattle Children's hospital because they felt they could help us better. So 35 days later countless blood tests, urine tests, echocardiograms, and ekg's we sit with this.... our newborn baby girl Hannah Mae Campbell has been diagnosed with hypertrophic cardiomyopathy which is the thicked and enlarged ventricles in the heart. She has also been diagnosed with Supra ventricular tachycardia (SVT). The combination together is very rare and can be fatal. After numerous tries with medications we have been told that as long as Hannah has SVT's we will not be able to bring her home. So it leaves us to one of the toughest decisions Jon and I have ever had to make. We were approached by a doctor willing to try an oblation surgery. It is a very risky procedure and it has never been done on someone as small as Hannah before at Seattle Children's. We are finding that if this surgery is successful the benefits outway the risks and since we are backed into a corner we need to trust and have faith. An overwhelming amount of people have asked us what they can do and this is what we ask... this Thursday, July 5th at 10am pacific time, Hannah Mae is heading for surgery. If you could take that time to send good thoughts and pray for the anesthesia to be successful, to give the doctor a steady hand and to let the procedure be effective we would greatly appreciate the support. Please share this message and encourage others to pray as well. Jon and I believe there is nothing greater than our god and the power of prayer. Thank you!" ~Jennifer Campbell
July 5th 2012
"So, little Miss Hannah Mae held her own through surgery today. It was hoped that it would be a four hour surgery; however, it turned into a seven and a half hour surgery. Things didn't go badly, but didn't go quite as expected, either. The doctor has Hannah on a temporary pace maker, and will be watching her for the next couple of days to see if they will need to install a permanent one. Jon said ...that she was starting to wake up and wiggle around a bit, and Jen said that ...she looked quite swollen. Obviously, the hope was that they would get in, get rid of the extra pathways that were causing her heart to beat too quickly, and get out without a pacemaker, but that didn't happen. Jon and Jen have had an amazingly long day, and are very tired.... they appreciate all the prayers and thoughts today more than you all will know, and will update more in detail soon, but are overwhelmed and tired, and I hope and pray that they can get some rest tonight. The best thing we can give them is to continue praying and to continue holding this family in our hearts as they navigate this insane road they are on. We love you, Jon and Jen, you, your family, and this little scrappy princess that many of us haven't even met yet. Hugs."
July 8th 2012
"I would like to start off by saying thank you all so much for the wonderful support you have shown to my family these past couple of weeks. It is so touching to read all of the messages and comments from friends new and old. Hannah has to be one of the strongest little girls. The ablation surgery she had on Thursday that was supposed to last about 4 hours turned into 8. That was the longest 8 hours of my life. The doctors had very high hopes they would have been able to take care of the SVT for good and we needed to take the risk. In doing so her AV pathway was also taken out. In result she is in heart block. We have waited 4 days but the ability for her heart to function correctly does not seem to be coming back. They have installed a temporary pace maker and we find out tomorrow if she will need a permanent one. It has been very hard because I have not been able to hold her since thursday morning but today I was able to hold and feed her. Also, because of the heart block Hannah Mae is no longer able to have SVT's which means we hopefully will be able to bring her home in the next couple of weeks if everything goes okay. Again, I say thank you for your thoughts and prayers."
July 9th 2012
" It's official... my baby girl is going to get a little help with her ticker. The surgery is scheduled for noon tomorrow and hopefully we will have her home within 2 weeks or so. I think when that day comes it will be one of my happiest! Things have not gone the way we have planned but we are not in charge. I have been brought to tears so many times through all of this, not just because of the emotional roller coaster we are on but the fact that people (some we have never even met) have taken time to make us meals, help with our boys, sent us messages or comments on facebook, and donated hard earned money to help our family. I write this through teary eyes to say thank you from the bottom of my heart. Hannah Mae will know some day how much she is truly loved and I can't wait until I can show and tell her."
July 10th 2012
"I just want to shout from the rooftops!! Hannah Mae's surgery went very well today. She ended up getting a late start because the surgery prior was running behind but her surgery was very successful. All of the leads were attached very well to her heart and the doctor was able to install a pacer that should last her for the next 8-10 years. H...e was a little concerned her chest cavity was going to be to small but it worked in our favor. The doctors and nurses are going to be watching her for the next 24 hours in the ICU and then she should be moved to the general floor. After that we will spend the next 4-6 days there to observe her and then we should be heading home. This is if everything goes well. Again thank you for the prayers, Jon and I are so blessed to have the worlds most amazing friends and family. I can not thank you enough for the support. We truly believe through this experience our family has grown leaps and bounds. It is so good to have amazing news! — " ~Jennifer Campbell
July 13th 2012
"After what we thought was a successful pacemaker surgery we got some bad news on Wednesday night. About 10 pm our hearts dropped when the ICU pager went off. We quickly called the doctors back and got the news that Hannah's heart had experienced cardiac arrest. They tried to put her on a ventilator and Jon and I have never driven so fast to Children's Hospital. When we arrived they had sent the at...tending doctor out to talk to us. As we cried and held each other we listened to the team of doctors explain to us about a life support, the ventilator machine was not working and they needed to do something more. The doctor's voice started to sound like the teacher from Charlie Brown and I could not think of anything else, all I wanted to do was see my baby. Jon and I were lead back to her room and I walked into something I would never wish upon anyone. I moved my way to the bed and all I could do was kiss my baby girl. I just kept thinking about how we were supposed to go home this week. After a very long night we were left to make this decision, to put her on life support or let her go to heaven. We felt like we could not let her go without giving her one more fighting chance. Tomorrow we will be listed for heart transplant. I say this with tears streaming down my face because with this we are hoping for a heart to save my sweet baby Hannah but in turn means someone will lose a child. This is what we are left with...Hannah will only be able to be on life support for up to 3 weeks before blood clotting or blood thinning will start to happen so we need a heart by then or we will have to say goodbye and I am not ready to do that yet. We are leaving this in God's hands and we need to do what is best for our daughter. Thank you to everyone who has supported us."
July 18th 2012
"Happy 2 month birthday to my sweet baby girl Hannah Mae! It has been a trying 2 months but god has made Hannah for something much greater than this. Today is also the 50th day we have been at Seattle Children's, I joke and say we have been here so long the doctor's and nurse's are like family. I hope for the day when I don't have to make the drive into the city. When I can just sit at home and hold my baby. Every day that's passes without a heart is one day closer to having to let her go. I cry and pray to not take her, I don't believe it is her time."
July 18th 2012
"Today has been a hard day. Her lungs since the cardiac arrest have collapsed and the doctors are trying to get them to recover but since they cannot transplant with other organs not working properly she is not able to be up for transplant until her lungs are able to work on a conventional ventilator. So we have 48 hours to be able to see improvement before we need to make hard decisions. 48 hours is nothing! I know God has a plan and we need to follow his path but I am angry. My sister tells me "you can't be angry with something if you don't believe in it". I am putting my faith in the lord. Hannah is such an amazing little girl, I know every parent thinks this about their child but truly she has me in awe everyday I go to the hospital. Her ability to make these doctors and nurses love, her way to test them and keep them on their toes, her spirit and stubbornness, her furrowed brow and of course her big blue eyes. Thank you all for the support, kind messages and prayers but most of all thank you for loving my daughter." ~ Jennifer Campbell
July 21, 2012
As most of you have read I refer to this situation as a rollercoaster, this is not quite the rollercoaster I would like to be on. I do feel as though Jon and I are in the front seat and there are so many of you in the seats behind us, I think this is the longest rollercoaster in history. We have felt so much support and love and it is so amazing and sometimes overwhelming to witness. The last couple of days have been emotional. Last time I wrote the doctors were giving us about 48 hours before we were needing to make some hard decisions. The next morning my little fighter decided she wanted to start improving her lungs and we continued on our journey. The next day was even a little bit better. All Jon and I could pray for is small improvements, we knew if there were just small improvements we would not have to have "the talk" and it continued until this morning. They found a sign of bacteria growing in her blood stream. The doctors and nurses got her on an antibiotic right away and they are already seeing a little improvement but we are holding on because with the infection her lungs have stopped progressing. We are praying for more improvement tomorrow. The average time to be on ECMO is 2-3 weeks and we are coming up on 2. Along with the doctors we are hoping for progress with the infection and lungs and if that happens and her heart seems to be beating/pumping well they could talk about her coming off life support. It is such a stretch but we need to have goals. As most of you know Hannah has always had her own agenda. Please continue to pray and keep not only my daughter in your prayers but all the children at Seattle Children's hospital. Thank you!~ Jennifer Campbell
July 23rd, 2012
We areso truly blessed! Today is Jon and my 1st year wedding anniversary and so much has happened in a year. The night before our wedding I will never forget staying up all night and ironing countless chair covers, setting tables and finishing place cards with the most wonderful friends any girl could ask for. The next day was such a whirlwind and time flew by. As I walked down the aisle I wll always remember the smile on my dad's face that day and the bagpipes playing in the background. We always knew we would try right away for a little one and boy did it happen right away. 1 month later we knew we were expecting and our newlywed life was about to change. Morning sickness, backaches, and swollen feet were only the beginning. We are so truly blessed! With all the odds stacked againist her, Hannah Mae is holding her own. On the way to the hospital this morning I grabbed a fortune cookie on my way out the door and this is what my fortune told me - A pleasant surprise is in store for you tonight. I arrived at the hospital and sat in my car and prayed like I have done countless times before. I walked up to Hannah's room and the nurses were giving me report. Nothing had really changed but I could not get disappointed because if things hadn't changed it means it was not getting worse. During rounds with the doctors this morning they talked about trying to see how she was breathing today, her lungs weren't looking bad but they weren't great either. This afternoon they hooked up the conventional vent and she was hanging in there. The doctors and nurses are holding hope for the next 24 hours. Tomorrow we will know so much more but this could be the chance for us to get on the transplant list. The infection also seems to be getting better, they have not seen a sign of it in a couple of days but will keep her on the antibiotic to ensure that it doesn't come back. What an amazing anniversary gift from our daughter. Thank you for your prayers. We are so truly blessed! ~ Jennifer Campbell
July 25, 2012
"Your daughter is the strongest little girl". I met this doctor about a month and a half ago now and his bedside manner was not the greatest but if I could only get into his head. He is probably the smartest man I have ever met but it very rare you see a smile. Yesterday the doctors decided to trial Hannah off life support for a short time to see how see would react. My strong stubborn little girl decided to surprise them all and hold her own for the short amount of time. As the doctors left her room I will never forget the said doctors face and how he told me what I already knew. They decided yesterday that they would let her trial longer today. So when me phone rang at 8am this morning I didn't realize it would start so early and I hadn't even left the house yet. I hurried to leave and as I got on I-5 to head into Seattle I hit traffic right away. Of course this happens on the day they are trying to withdraw Hannah from life support. How could I have been so irresponsible? I was in traffic for about a hour and a half longer than it usually takes me to get there. This is when I was asking for prayers and I used this time for a ton of windshield praying. I arrived at the hospital and finally got to her room. The nurses on duty were familiar and comforting faces. I got report and she was holding her own once again. After the 2 hour trial the doctors were very pleased but still wanting more time because her little lungs are not getting rid of the CO2 how they should be. We as a team decided to keep her on life support for the time being and giving her a little more time to get better. She is looking great, moving her arms and legs like crazy and flashing me those baby blues. She is the strongest little girl and so thankful god gave her to us. ~ Jennifer Campbell
July 28, 2012
Today marks day 60 of this journey that we are on. I remember arrivng at Children's and being so scared and not knowing what to expect and getting on the elevator. There stood a lady and her daughter that shared with us that there were going home for the first time, Jon asked "how long have you been here?" and she replied "58 days". We left the elevator and I remember saying to Jon "what if that is us?"
60 days later we have learned so much. We have learned about a horrible thing called heart disease in infants, we have learned about arrythmia, we have learned to trust in people that we have never met with the most precious gift we have, we have learned that organ donation is not just needed for adults, we have learned that blood donations are extremely needed, we have learned that when times get tough and I mean really tough people rally together to support, we have learned every moment you have with someone should be cherished, we have learned that you need to pick your battles and we have learned to take nothing for granted.
What we know is GOD is GREAT and he has a plan for us. We know that there is light at the end of this tunnel.
The doctors decided to trial Hannah off life support again yesterday and it lasted 4 and a half hours. Even though she has made great strides they were still on the fence about taking her off. So again they have decided to keep her on ECMO and wait 2 more days to see if she will get stronger. As we all know Hannah will do things in her own time. She has been having dance parties in her room though. Her little legs and arms have been moving like crazy. The nurses have been having a hard time with the medicine and fnding a combo to help keep her more still. She has been opening her eyes for us and Hannah got to see her brothers yesterday. She loves them so much! Cavan and Bryce have gotten used to the machines and I think we were scared more than they were. They talk to her and bring her toys to look at. They are amazing kids and so proud of how they are handling this situation. Jon and I look forward to the day when we get out of the hospital and we can share our amazing little daughter with everyone. We are so comforted in knowing that so many people care for our family and love our little Hannah. ~ Jennifer Campbell
July 31, 2012
Our little angel has surprised all. At one point we weren't sure if she would come off ECMO without a new heart but Sunday the 29th of July she did just that. After a couple days of trialing her to come off the doctors made the decision that the risk of clotting and stroke were to great to keep her on life support. So with her vital signs looking good surgery started around 10 am to remove life support and give her a chance to live on her own. After the 2 hour wait Jon and I were able to go into Hannah's room to love on her. We were so happy that her numbers were staying good but knew the next 24 hours was going to be crucial. Before we took the boys back to Jon's parents we stopped by the hospital again to see her and the boys got to give kisses and "fake hugs" as Bryce likes to call it. The rest of the night went well and we were very hopeful.
The next morning I called before I left the house and was informed her numbers didn't look great but were okay and with that I headed to Children's. Thank goodness Monday morning traffic was actually moving. When I got to Hannah's room her numbers on the monitor were declining and that started a whirlwind day for us. I thought about this moment many times before and what I would do if it ever came to this point. What would I say? What would I do? How would I act? But at this point all I could do was pray. Putting it in God's hands,I tried to stay out of the way of all of the doctor's, nurse's and RT's that were trying to keep my daughter alive. Hours seemed like minutes. So much happening and so many people wanting to talk to us. Even though Jon and I are at peace with the decisions we have made for us and our daughter it did not make this day any easier. After a 11 hour day we decided the best thing to do was to head home to try and get some rest. She was at a stable place but knew the risks of her not making it through the night was great. We fell asleep with the pager and cell phones next to our heads and bags packed knowing we might have to head to the hospital with short notice. I finally fell asleep and slept hard. Jon and I woke at around 5 am and realized this morning we did not get a call, the pager never went off. We called he hospital to make sure everything was okay and the words "she is stable for now" were amazing to hear. Hannah's vitals improved over night and once again my daughter's strength amazes me. I now don't allow myself to get to excited about steps she makes because Hannah does things her own way but I do need to give credit where credit is do. She is so strong and has alot more room for improvement but she is not done impacting this world.
It is so crazy how day to day things change. A couple of weeks ago I shared a story with my very supportive and amazing friend Jennifer about how a nurse was changing Hannah's bedding and all she could find was a blue and red blanket to put on Hannah's bed. I remember her apologizing for not finding something pink or purple but in all honesty I was just happy my daughter was getting clean sheets. I recall telling Jen how I wished I could make blankets for children staying in the hospital because it might sound silly but new bedding is always an exciting thing for me as a parent. I knew Jen and when you give her an idea she runs with it. I have met Carol a couple of times and knew of this lady who loves to sew. Jen and I always say "everyone needs a Carol" but boy we are not kidding. Jennifer shared the story with her a couple weeks ago and to my surprise Jennifer and her daughter arrive at Children's today bearing blankets and I mean boxes of them. I write this with tears in my eyes because if you could have seen the looks on the children's, parents and nurses faces you would know what I mean when these simple gifts of blankets made such a difference in the ICU. I am so taken back by the detail and love that was put into each and everyone of the quilts. She went as far to put quilt labels on each quilt that said "Made with love by friends of Hannah Mae Campbell". This day was amazing and I am so thankful on the impact that these blankets made even if they only brought smiles for a short amount of time. We are spreading love one blanket at a time. Thank you Jennifer and Carol for making this day spectacular and thank you Taylor for the special blanket you made for Hannah. We continue to hope for small miracles and have faith in God's will.
August 1, 2012
One day my world came crashing down, I'll never be the same. They told me that my child was sick. ... I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking, I have loved her for so long. I will...
not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child to thrive. I'll even use that feeding tube. My child must survive! Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate. When the monitors beep at night, it serves as a reminder. How many parents would love that sound. Tomorrow I will be kinder. As another angel earns their wings. I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try. And yet, I trust you hold her life, and guide us through each day. My mind says savour each moment she is here, But my heart begs, "PLEASE let her stay"! From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "Will she be alright?" to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands. For all who see that Faded line. I look to them and smile. You see my child is loved so much. I would face ANY trial. The scar I trace with my finger (It's the door to her beautiful heart). God must have known how much I'd love her (Just as he loved her from the start). A heart mum is always a heart mum. Now wise beyond her years. For those who have angels in Heaven, Our hearts share in all our tears. Everyday I will try and remember, I was chosen for her. I will always embrace that beautiful day..... When I became a "Heart Mother". ~ Author Unknown
Today marks the 65 day mark. Today was very disappointing! Hannah's vitals are not looking good and have seemed to plateau. We are very limited on what is left to treat her. The doctors, Jon and I had the talk today. No parent should ever have this talk. My boys came home today from Grandma and Grandpa's, they got to see sister. Kisses and "fake hugs" were a must. I love my kids! My life has been forever changed.
A couple of years ago while my Grandma (who Hannah is named after) was getting ready to pass I spent the week before with her in her hospital room, holding her hand and talking to her. The caregivers that watched over my grandma encouraged me to speak to her. At first it was very hard for me to talk and not have her respond. My grandma and I had a very dear relationship, I was the first granddaughter and we just always had such a close bond. We had spent alot of time talking. I loved her stories of growing up in Ireland and hearing about when my dad, her wee little Norman, was a little boy. So having her there and not being able to hear her voice with the slight Irish accent was very hard for me at first. As the days passed I talked. I told her about what was happening in my life in Seattle and how I was going to marry the wonderful man she had just met one year prior. I told her how we would have bagpipes at our wedding, she had played the drums in a bagpipe band and had always loved the sound. I told her how much I appreciated her and always admired her for her strength and courage. I thanked her for loving my dad and loving me. There was absolutely nothing that I wouldn't do for her. Hannah reminds me so much of my grandma. Her strength and courage is amazing. I tell Hannah everyday how much I appreciate her and love her and we talk. We talk about life before her. We talk about what an amazing father she has and how much her brothers love her. I tell her about how many people care for her and the beautiful woman she is named after. Even though she does not answer me or can even tell what I am saying she hears me. I know she hears my voice!
After our very emotional talk with the doctors on Thursday, we were not sure how long we going to have Hannah in our lives. This past weekend has been very emotional and very busy. We have been trying to take things day to day and not to get to far ahead of ourselves but everyday we arrived at the hospital things were slightly getting better. She continues to hang on! She is still on the oscillating vent but moving slowly towards convential vent. Once we are able to be on the convential she will need to be checked to make sure she can be listed for transplant. The surgeons can perform the transplant while she is on the convential vent but not the oscillator, so this determines everything. The surgeons need to be confident that she will make it through the very long and risky surgery. I would rather take things slow and I am very thankful for such caring doctors. The medical team is going to see how see does overnight tonight and maybe they will trial her off the oscillating vent tomorrow. The day we get listed will be such a burden that will be lifted. We have been waiting so long for this step. Between ECMO, and her lungs being so sick it is such a nice feeling to hopefully be moving in the right direction but as I have said all along "Hannah will do things in her own time".
So for now we trust in the Lord, we pray for his will and we talk to our Hannah!
~ Jennifer Campbell
I pulled into the parking lot at Seattle Children's today and began searching for a spot. I hate when the gargage is this full, it means there are more children being helped and I could never imagine anyone in my shoes. It breaks my heart. I finally found a spot all the way in the back row, put my car in park and even though I was running late I could not forget about god. I folded my hands and began to pray like I have done for the last 70 days. Today I had so much to pray for. They had to turn up the settings on her ventilator last night when Jon and I called to check on her and my fear was that Hannah was not tolerating the new vent. To my surprise this morning when I got to her room she was doing great! Her lungs were clearing the CO2. Rounds with the doctors were about to start so I kissed my baby girl and joined the team in the hall. I stood there listening to the report and all I could think about was transplant. They talked about the settings on the vent and talked about the dosage of medications she is on and before I knew it the transplant cardiologist was due to talk. What I have been waiting for, for so long was finally said. Hannah Mae Campbell was listed today for transplant! I could not help it, tears were streaming down my face, I have wanted this for so long. I cannot even describe in words how happy, relieved and scared I felt at this time. I was presented the official letter around noon today and instantly called my husband in hopes I would be able to meet him for lunch. We set the meeting spot and I never have wanted to drive so fast in my life to get to him. I pulled into the parking lot and saw him right away. I walked up and handed him the envelope and he knew. We kissed and hugged and kissed and hugged!
So now we start to wait, this wait could be a long one. It could take days, weeks or even months to be able to recieve a heart. So today we start to pray a little bit different. We pray for the angel that will save my daughters life and we pray for the family that will say goodbye to a life that impacted theirs but is made to live on through my daughter. I have said from the beginning that God made Hannah for something special. She was made to impact lives! I am so proud to call her my daughter.
Because of Hannah Mae and the planner I am I decided to take on a project with help from my beautiful, amazing, selfless friends, Erin Simmons, Kelly Conrad, Nancy Gilmore and Jennifer Marsall. Hope for Hannah 2012 Blood Drive is being set up to make awareness for blood donation. The blood drive will be held at Our Savior's Lutheran Church in Everett, WA. We have set the dates for Friday, August 17th from 10am-7pm and then again Friday, August 24th from 1pm-7pm. We recieved such an overwhelming response we needed to schedule two days of donations. I will post more info on the blood drive under the blog section of this webpage. Hannah has recieved 49 blood transfusions to date and because of people that took the time to donate blood my daughter is still with us today. Please help to make a difference in peoples lives. Each blood donation saves 3 lives!
Thank you for your prayers and support we are forever grateful.~ Jennifer Campbell
August 10, 2012
POOP!!! I never thought I would be so excited to hear the sounds of toots! You have to understand it has been me living in a house with 3 males for the last 3 years and when I found out I was pregnant you wouldn't believe how many prayers I said and stars I wished upon to get my girl. Between dirty clothes on the floor, toliet seats being left up and the burps and toots in this house I needed a little more estrogen in this household. Today was a great day! This week has been a great week. Rounds started around 10:30am and as we ironed out the plan for the day. Chest tube was to come out, ART line was to be removed, and peripheral IV was to also be taken out and started breastmilk feeds through her NG tube. It was going to be a busy day but so exciting. With all of the pain medications Hannah has been on she has not had a bowel movement in about a month so you can imagine my excitement about half way through the day when I heard toots coming from her area of the room. I rushed to her bed and before long she had a full diaper. Now most parents would complain about the messes their children make in their pants and I've heard the stories of the horrible blow outs up the back but in my case I have wanted to change a diaper for so long. When a child does not have dirty diapers in our situation it can be very scary. Not digesting food and kidney failure are very real diagnosis for how sick Hannah has been. So with the plan for today being accomplished it was so great to add poop to the day as well. Like I have said during this life experience you need to be grateful for the small things in life.
Last week was very hard but very real for Jon and I. We had to have some very difficult discussions with doctors and together. We are very grateful for the solid christian beliefs and values our parents instilled in us. Our faith is carrying us through this. We have had so many who love us and know us to complete strangers (but brothers and sisters in christ) who pray for us daily and we could not do this without all of you. I know people pray for peace and I have to tell you as I held my daughter for the first time in so long today, I looked into her big blue eyes and felt that peace. Thank you for your prayers! We understand this ride we are on is a rollercoaster and we understand there are ups and downs and we have been on a very steep downward slope for so long now but this week our rollercoaster is heading in the upward direction. We know this can change at a drop of a hat but for now we cherish it and love everyday we have with Hannah Mae even if it does mean we need to change poop filled diapers.
~ Jennifer Campbell
August 16, 2012
1. an effect or extraordinary event in the physical word that surpasses all known human or natural powers and is ascribed to a supernatural cause.
2. such an effect or event manifesting or considered as a work of God.
3. a wonder; marvel.
This past week has been a pretty good week. My best friend came to visit from Michigan and got to meet and hold Hannah, Hannah was making progress, and the blood drive in my babies honor is all coming together. I knew the rollercoaster had it's up and downs but was really hoping for the upward climb to continue much longer. This morning at rounds our principle cardiologist talked to me about the latest ECHO. He has seen that her cardiomyopathy has gotten much worse. It now has progressed to Hypertrophic AND Dilated Cardiomyopathy. This is very rare to see this in an infant heart. We still continue to be listed for transplant but the average wait time is 2-6 months and to tell you the truth I am not sure if we have that long to wait. Her temp has been climbing and the doctors have been changing her medications to keep her comfortable and until 2 days ago it seemed as though she was improving. Calm before the storm maybe?? They are talking about giving her more blood product today and that will be 50 transfusions. I am looking forward to the blood drive tomorrow in honor of Hannah and cannot believe how much support Jon and I have received. As of today we have had 37,075 visits to our website and I am so glad we are creating awareness in both organ and blood donation. I could not do this without the support from my amazing friends and family. We are hoping for a miracle, we are praying to received a heart in time and we are wishing peace for the family that has to make the most unselfish decision. God created Hannah for something great and her journey is not over yet.
~ Jennifer Campbell
August 17, 2012
Happy Blood Drive Day!! There are not nearly enough thank you's for the gratitude I have to every one who donated, volunteered and just came to support my sweet baby girl Hannah Mae today. I could not have done this without the most amazing girlfriends ever and you know who you are (even the very special godmother that could not make it but was there in spirit). It was absolutely amazing to witness the generosity of people and the way everyone pulled together to give back. I do have to say even though the weather today was beautiful, it was not ideal for a blood drive and even with all of the A/C units, fans and prayers we were not able to beat the heat. Thank you Mother Nature :( Even though the blood drive was scheduled until 7pm we ended up throwing in the towel at 5pm. It was not without a fight, believe me! I do know shutting the doors was the best thing to do with the circumstances given but as many of you know when I put my mind to something I can be very driven. So today marked 80 days at Seattle Children's and for those many days in a hospital room (thats about the size of my bathroom) I have wondered of ways I could give back. It is such a helpless feeling to be in a situation like we are in and know there is really nothing we can do as parents. We talk, hold hands (really she just holds my finger) and kiss as much as we can but really Hannah has to heal and that takes time. So when I had the idea of giving back I instantly thought of blood donation. Did you realize that only 5% - 8% of the US population donates blood? Implementing the idea was spectacular with the team I had and in no time it was coming together. It was the first day in 80 days that I was not at the hospital first thing in the morning. That was hard for me but I knew she was in good hands and the reason I wasn't there was for such a great cause. I am so thankful for our dear friend Dave who opened the day with prayer. So much of my heart has been poured into this day. It was so important to me that I took the time to thank everyone for their time at the blood drive so if I missed you I do apologize and I do appreciate you. Thank you for making a difference. When I got the news today that we needed to shut down because of the heat I was heart broken. I understand some things are just out of our control but I was heart broken.
After all was cleaned up at the church and my boys were settled in at home. I was able to sneak away with a dear friend to see my little beauty queen. We talked about all the people who love her and how lucky we are to have so much support, we held fingers and we kissed. I checked the monitors and played 20 questions with our nurse just like I do every morning. She is hanging in there and she is holding her own. Her numbers look great and there has been no big changes. She just really needs a new heart. I gave the nurses the banner we made for them today and it was so nice to see the smiles on their faces. Thank you all for sharing in our story and thank you for supporting us. This is God's will and I have to remember this life experience is his plan for me. There will be days when the plan you have does not go as pictured but you need to remember it truely is not your plan, it is his.
~ Jennifer Campbell
August 18, 2012
Happy 3 month Birthday to my little beauty queen! There have been so many times we did not think we were going to make it to this point. We are so fortunate for evey day we have with Hannah. I have been so taken by her and the strength she shows us. Jon and I spent the majority of the day with Hannah and she is dancing. Thats what her nurses call it because she moves so much. Her eyes are as big as ever. She sleeps alot but no more than a regular baby. The nurses have hung toys above her bed to give her something to look at. She is so aware and she looks right at us. I love okay days!
August 19, 2012
Hannah is becoming a star! I wish it was for better reasons. It was nice to wake up to this wonderful story about her in the Everett Herald. I am so proud that my family has made this devastating life experience a positve one. I am so happy that we are helping to bring awareness to people about blood and organ donation and Hannah is making an impact. It is so amazing for me as a mother to teach my boys that making a difference in peoples lives is important. What am mazing life lesson this is for them.
For the last 3 months I have been searching for my daughters delivery nurses, Lissa and Tiffany and because of the story in the Herald this morning I received a wonderful email from Lissa. With Hippa laws and being busy at Seattle Children's I did not know how to find them so I will be forever grateful that this publication has brought us in contact. I would never forget their faces and what wonderful girls they are. Without their dedication and awareness of the situation they both were absolutely wonderful in how they handled that morning and did not alarm me. If it wasn't for the two of them I probably would not have my baby girl today.
Today was a hard day for my 8 year old. He was going to go to his first Mariners game today but has not been feeling well so he gave the tickets to his little brother and Jon took him to the game. That means mommy got to play doctor today. I have been tired as well so I think it was good for both of us to snuggle and watch some movies. After the Mariners game today Jon and Bryce got to see sister for a while. Jon said she is doing well. Hannah was really settled today and not getting agitated while he was there. Hannah's pacemaker is set to a steady 95 beats so this means if she is mad it beats 95, if she is sleeping it is beating 95. So this can be hard for her. They were going to maybe adjust this today to see if it will settle her. As much as I realize I need to take time it has been really hard for me not to see her today. This is the first day since she was born that I have not seen her but I am glad I got to rest. I will be at it again tomorrow and am so thankful for the support we have. ~ Jennifer Campbell
August 26, 2012
Have you ever wondered why life happens the way it does? Why certain people entered your life at certain times? Jon and I have spent alot of time lately talking about this.
As most of you may know this week has been a very busy one for us. My boys had not been feeling very well, Jon's sister was visiting from Haiti and of course there was the Hope for Hannah Mae blood drive this past friday. Even though it was a very tough decision I knew I had to be a mom and stay home with the boys and take care of them. It was very emotionally draining to not see Hannah as much as I would have liked this week. The hospital tells me I can call to check in as much as I would like but I have to tell you I think they were gettng a little sick of me. The boys are feeling better now and they are as busy as ever. Hannah has also been very busy this week. Positive things first, she made her T.V. debut! Friday morning during the blood drive my very dear friends went to work. They have stood by us during this time and decided as many people as possible need to hear Hannah's story so before I knew it KOMO 4 news was at Our Savior's Lutheran church wanting to interview Jon and I. Our story aired that night at 5pm, 11pm and Saturday morning at 8am. When I decided it would be great to hold a blood drive in honor of my daughter I never expected the response we recieved. Within hours of posting a notice on Facebook we recieved so many comments of people wanting to donate we needed to hold 2 blood drives. With both friday blood drives combined we had 152 registered donors, 90 first time donors, 118 units of blood collected and with that 354 lives saved or were dramatically improved! I am speechless! Imagine what an impact that has made to the Puget Sound Area. I could have never had done this without Nancy Gilmore, Erin Simmons, Jennifer Marsall, Kelly Conrad and of course the husbands and many others. Hannah during all this doesn't quite understand what an impact she is making but I can't wait until she is older and I can share all of the kind messages, emails and letters we have recieved with her. While I was home with the boys this week Hannah underwent a pacemaker test. The doctors did this by watching her ECHO while they moved the rate on the pacer up and down to see what worked best for her. They officially decded to change her rate to 100. Hannah was seeming to do really well with this change and as her nurses say "she was dancing". The doctors also decided it would be best for her if they moved her vent tube to her nose instead of her mouth. This was so she could maybe relax herself with a pacifier and comforting her would be easier. Everything seemed to be going well until last night when we called to check-in and our sweet baby girl started to have arrythmia's again. Her heart has developed another electrical pathway that is now trying to over power the pacer. Last time this happened it sent her into cardiac arrest and resulted in life support. The doctors do not believe this is the same type of arrythmia but we are very worried. There is really nothing we can do but hope the medications she is on for her heart can make a difference long enough until we can recieve a heart transplant.
Since May 18, 2012 the support we have been given from family, friends and people we have never even have met before has been overwhelming. We have recieved words of encouragement, donations for Hannah's medical fund, gifts for Hannah to snuggle (thank you Sue for the dog and teddy and Hannah Mae for the Angel pillow) and countless hugs. Most of all we have recieved the gift of friendship from so many. I believe Hannah's story has not only stengthed us but so many others. If her story reminds you to be a little kinder and love a little longer we have made an improvement in the world.
Today in between hospital visits, my 8 year old son had a soccer tournament at Magnuson Park which is right down the road from the hospital. The James Riley soccer tournament was to help raise money for the Boys and Girls Club. We had taken a call last night from his coach asking if he would be able to play. We decided to take the summer off from soccer because we had been to busy with sister and could not travel as far as the team needed to go. Because the team was short one player we thought it would be great for our son to play. We would make it work. He was so excited! Jon had dropped me at the hospital and they went to the first game. The Blackhawks had won and trhey had come to get me so I would not miss the next game. I had not seen my son play all summer and I was looking forward to seeing him play and the other moms from the team that I had missed dearly. I know sometimes I can nag my poor husband but when we entered the tournament my son was given a shirt a little to small so I encouraged Jon to exchange it for a larger size. I understand that was probably not what her wanted to do at that moment but I think there is a reason for everything. While at the table to exchange shirts my husband saw a piece of paper and on it was a life story about a sweet little girl named Sadie. On that table my husband saw pictures of Sadie with her parents and also James Riley who used to play with the Sounders. We knew James Riley was at the tournament today. Jon had brought the paper to me and with tears in his eyes asked me to read this story. As I read I felt for Sadie's parents, even though Hannah is not diagnosed with the same illness it really hit home. All of a sudden my husband was approaching a man I had never seen before and it didn't take long to realize that the man my husband was hugging was Sadie's dad. It didn't take long before my husband was pointing to me and I then was hugging a man I had never formally met but felt the ache in his heart. See the paper I read was about a beautiful 4 year old girl who had lost her life to cancer.
Jon and I know that our life has purpose. Hannah's story is far from over. It is up to us to make a difference in her name. We know that God has a plan fo us.We know that we were meant to be at that soccer tournament today to meet Scott and learn about his families story. We know that all the people that Hannah Mae has impacted will never truely be known but I do remember the people that have impacted my life through this experience and it is so great. God has a plan for us.
A very special lady gave me something on friday and it says...
For I know the plans I have for you...plans to give you hope and a future.
Hope for Hannah Mae is not over...God has made her for something great!
~ Jennifer Campbell
September 3, 2012
I hope on this Labor day everyone is relaxing and enjoying time with friends and family before the summer is officially over. We have had a steady week with not to many changes for sweet Hannah Mae. She continues to do well with the vent tube in her nose and we are trying to get her oral functions back. She has lost the ability to suck, so a paci is not quite working for her at the moment but she is working hard to get it back. She does love having her mouth free and she loves putting her fingers to mouth. She has been smiling so much! It is so wonderful to see her smile again. I have missed that. The nurses and I have been reading her books and she absolutely loves Moo, Baa, LaLaLa. It is such a cute children's book about animal sounds. I think she will love books like her daddy. We have been reading alot. She is also starting to sit up (with help, of course) and playing with her toys the nurses have hung above her bed. The Occupational Therapist Keren said she is doing very well and hopefully will not be to far behind children her age. The doctors have seen improvement with her vent settings so those have come down. Hannah is still on high settings but not as high as they were. The problem we are having is that her own heart has taken over for the pacer. Hannah's heart has developed a new electical pathway and it is conducting on it's own. It's a little scary for us but the principle cardiologist says that her heart is functioning better with her heart doing it's own thing. We are just a little worried because her heart is so big. It is about the size of an orange and it takes up about 2/3 of Hannah's chest. We are just not sure how long her own heart can function well with it's size.
Last week during my son's soccer tournament in Seattle a group of the parents approached Jon and I and told us how they wanted to hold a car wash in honor of Hannah Mae. We were very honored that they would take time out of their Labor Day weekend to do something for us. This past Saturday they held the car wash at the El Paraiso Restaurant in Silver Lake from noon to 4 pm. Jon and I headed to the hospital in the morning to see Hannah and then headed back north in the early afternoon. We drove straight to the car wash and as we pulled up we were amazed by what we saw. My son's teammates and some parents were standing by the road with signs for the wash. As I saw these young kids with so much energy to do good, my eyes welled up with tears. We were amazed by the support from people we just met 2 years prior. The line of cars wanting to be washed put me in awe. So Jon and I joined in. We held signs, we washed cars, and we shared our story. The amount of support left me speechless. I know it was a tiring 4 hours for these boys but I heard no complaints. For these parents to take the time to explain to their children what a teammate of theirs is going through and then to take positive action to help was amazing. I am so proud of these parents and children for what they have done for my daughter. I am proud that my son plays with these boys and what kind young men these parents are raising. I know most of them would have rather been playing video games or soccer but to teach them to give back leaves me speechless. Thank you Orlando and Mario for your kindness! Way to go Blackhawks!!
~ Jennifer Campbell
September 5, 2012
I was told this morning by her nurse that Hannah had the best night last night. She has been improving so much wth her lungs that the doctors had turned her vent settings down twice today. They did order for her to have an ECHO today and her heart is not relaxing very well which means her ventricles do not have as much time to fill with blood. The only way to help this is to slow her heart rate down so the doctors might increase her dose of beta blocker for her heart. This would allow the squeeze on her heart to slow as well. By the xray it appears her heart is a little larger than before. I like to compare it to the size of an orange (a normal infant heart is the size of a walnut). I cannot wait until the day comes when I can see this abnormal organ that kept my daugter alive but gave her so many problems.
Today was a very busy day, the first day of school for the year. I left the hospital a little early today so I could be there when the boys got out. It was so good to see how excited they were and how they loved their day. My 8 year old has sharing tomorrow. He has decided to share his sister. He is bringing a picture with him and he gets to wear his Hannah needs a heart t-shirt. This is a big step because he has had a hard time talking about things this summer. The boys have not had the most ideal summer. He is getting better about it now and I am very proud of him.
Let's hope for another great night tonight, tomorrow is a big day!
~ Jennifer Campbell
September 6, 2012
Today marks 100 days at Seattle Children's Hospital! Who would have thought. It is absolutely amazing the relationships I have formed in 100 days. I wish these friendships were formed for a different reason but they would have never come about if it wasn't for this life experience. One of our social workers was joking today and said "Do you know everyone in this ICU". I thought to myself I try to but I just smiled. Hannah has forever changed me. She has made me appreciate life and the people in it (even if it is hard to love my 6 year old when he has days like today.)
Hannah's day was a good one. Not quite sure if she was celebrating her 100 days but it seemed like it. The doctors weaned her vent this morning and even tried to trial her off. It didn't workout exactly like we wanted but we are making progress. I also met with her Electro Physiologist and he believes her AV node which was taken out in her ablation surgery is now coming back. This could result in SVT's again but he changed her pacemaker to help her heart beat the most efficiently until we can receive a heart. Hannah did have another ECHO today and her heart seems to be working a little better. She also received 3 of her vaccines. Over all a busy day. With her shots, Hannah still on the vent and the fact she might have SVT's again you wonder why I would think today was a great day...well today while talking to a VIP I was reminded of this. A couple weeks ago Hannah went into cardiac arrest. Chest compressions were performed for a little over an hour and she was on full body life support with not a very good chance of surviving. Today was a great day! I am so grateful for everyday I can spend with her and I miss her like crazy everytime I am away from her. She is such an amazing little girl. I know every parent thinks this about their child but I am so proud of Hannah and the will she has to survive.
So tomorrow will be a new day and they will be trialing her off the vent again. Hannah will do things in her own time but I hope she is ready because I can't wait until I can see her beautiful face with less tubes. Prayers are being answered and we cannot thank you enough for the continued support.
~ Jennifer Campbell
September 19, 2012
Old and new friends have been telling me how much Hannah's story has impacted them but so many of you don't realize how much this experience has impacted me. We have had some pretty amazing but very busy days lately, with school starting, soccer 5 days a week and spending my days in the hospital it has been a little overwhelming. Up until the end of last week the only excitement we had was trying to find a routine with daily life and Hannah time. She was so stable and vent settings were at an all time low. The bacteria she had in her vent tube was taken care of with meds. Friday came around but that day was different, it was my 35th birthday and I bet you all know what I wished for. I arrived at the hospital and blessings were about to happen (no it wasn't a heart) but the ventilator was no longer needed and before I knew it I was able to see my sweet babies face. She did need a little help to breathe so they put her on a CPAP machine. As much as she hated it, she liked it so much better and she even started to find her voice. It was so amazing to hear her squeaks! I had not heard her voice in over a month and a half. It was so cute to watch her make a sound and look around to see what that was. We got quite a few laughs over her reaction. My 35th birthday is one for the memory books. It was a great day!
The next day Jon and I arrived at the hospital like we have so many Saturdays before but this one was amazing. As we walked into Hannah's room we were greeted by a happy baby. Hannah had done so well for 24 hours on the CPAP she was transitioned over to a high flow oxygen canula. The doctors could not believe the positive steps she has made. They are so taken by her. She looked wonderful! She is happy and smiling. This week we have been trying to get used to a routine with her now. She was not able to be held for long periods of time before so now we are trying to hold her just a little longer everyday. They have increased her feeds to 31 ml's a hour and she has been gaining weight. The nurses have finally been able to weigh her without the vent in and she is 12 lbs - 9 oz and she is measuring 24 inches long. The bigger and stronger she is the better that she will do during her transplant, so bring on the weight!
This life experience has been very humbling to me and today I had an amazing surprise. So during this time I have been contacted by many people, some very close friends and some I have never met. They give me words of encouragment and strength, they tell me about their children who are also or have been in the ICU, the messages all seem to have a similar ending. Prayers and well wishes are given. I want you all to know I read every single message and have even started a folder in my email to some day read those messages to Hannah Mae. I hope you know I wish I could write back and tell you all how much I appreciate your kind words but know I do get them and charish them. A couple of months ago I received and email that hit home. As I read it I knew this woman knew exactly how I felt because she had walked in my shoes. She had taken steps that I had taken, down the same halls, waited in line at the same starbucks, developed relationships with the same nurses and she waited for that perfect heart to save her daughter. I had wanted to contact her but time had slipped away. She did not give up on me. A couple of weeks after the first message I recieved another and this time I answered. We had brief contact with emails and then again life took over. Then yesterday I recieved another email saying she would be at clinic at Children's. So today I went on with my business, I went through rounds and held Hannah while she slept, we played with toys and I gave her about 1000 kisses. Then Jim from the front desk called back to my room to inform me I had a visitor. Who did I forget? Did someone tell me they were coming to visit and I didn't remember? I have been losing my mind lately. As I walked out to the waiting area I knew exactly who it was. There stood a very petite woman with a smile on her face to greet me. She was standing next to a stroller that was occupied, bottles and a diaper bag hanging and we hugged. We talked for a short minute before she pushed back the shield on the car seat. Then I saw her! This sweet baby girl with big brown eyes, long wavy brown hair and a heart that beats with life. We cried, talked and hugged. Then it happened, I got to hold this beautiful girl and it gave me more hope and more strength than I have felt. This baby was saved because of the most unselfish desicion made by another and she has life. As we walked back to see Hannah, I felt for my new friend. The last time she had walked that hallway was a hard time in her life, she was so brave to do it again to meet my daughter. Hannah had just awoke from her nap on her tummy and she was ready to meet her new friends. This sweet little girls story is amazing and I just pray for strength to be able to make it through this wait. To be able to see that people do survive this journey and even though it might be a crazy rollercoaster at times, people do survive.
Hannah has so many of you praying for her but our family is focusing our prayers towards Hannah's angel (this is what our boys call Hannah's donor) and this child's family. We soon will be connected forever to a family that my not know what God's plan is for them. We pray for peace for them. If you would like to join us in our prayers we would be grateful. Thank you for being apart of Hannah's story.~ Jennifer Campbell
September 24, 2012
Yesterday was such a busy hectic day, trying to get ready for Cavan's birthday and surprise him with his Seahawks package. We had been so excited to give him a new hat, and his MNF tickets to see the Seahawks play. So instead of baking a cake what better than Trophy Cupcakes. Last night after dinner we had his cupcakes and I told him it was a day early so his birthday wish had time to come true. He had no idea he wasn't going to be home the following night because he would be so busy cheering on his favorite football team. After the boys went to bed we decorated the dining room with streamers and had his presents wrapped and ready on the table when he woke up, just like my parents did for me growing up. Birthdays are always a big deal in our house. So today I woke up to the happiest 9 year old in the planet and he hadn't even opened his presents yet. I told him I would make him a special breakfast but all he wanted was cereal. We had our cereal and then the time came to open presents. I am so glad I can still hear, I don't think I have even heard a little girl scream so loud. We continued on our morning and headed out the door to school. I dropped them off and headed back home. I had so many things to get done today I called the hospital to let our nurse know I would not be in. Hannah has been so stable and I need so bad to get my house in order. I hung up the phone from report and was on the phone with a dear friend when I had another incoming call. I looked to see who it was and noticed it was the hospital. I hung up with my friend and answered the call. I cannot explain in words how it feels to get a phone call from Children's hospital but my heart sank. It was our nurse Maree with the calmest of voices. "Jen- you need to change your plans today". I did not know what to think. Then it happened! The words I have been waiting for for 118 days. I will never forget that moment as I feel to the hard wood floors beneath me and cryed. HANNAH MAE IS GETTING HER HEART TODAY!! I could not move I was paralysed. I always wondered what I would do, what I would say. As I hung up the phone I just wanted to get to the hospital but have you ever been so shaken up you couldn't even move or think. I tried to call my husband but NO answer. I finally had to call his boss to have a co-worker find him. My dear friend Nancy made it to my house in time to help me put myself together and without a drop of a hat Hannah's Godparents (Chris and Kelly) stepped to the plate. Kelly is helping me with the boys and Chris is taking Cavan to the MNF game so he can have his 9th birthday present. Before we headed to the hospital I did stop to share the news with the boys. My 9 year old instantly knew I was crying and he is always so worried about me. As my boys stood there I got to give them news of their sister getting her heart, many tears were shed and hugs were given and then we prayed. I am so blessed! I have now made it to the hospital and I am updating from here, Hannah will be heading into the OR within the next hour. I hope during this time you can join me in prayer for Hannah, the nurses, doctors and our course for Hannah's angel and her angels parents. I am so thankful to these people I my never know for giving my daughter life. For making such an unselfish decision. Thank you dear people in Christ for giving my daughter life.
September 25, 2012
Where do I even begin? How do I put into words the feelings I have experienced in the last 36 hours. Today I will pour my heart out like I have done with all the posts before but I make no promises for order. Stick with me I will try my best!
After my post yesterday, my friend and I arrived at Hannah's room long enough to talk to Hannah a little and then everyone was asked to leave but Jon and I. They checked and doubled checked everything. Of course they knew it was Hannah in the hospital bed but numbers and medications were checked just to make sure. Jon and I were able to walk down the hall with her until we hit the "Do Not Enter Zone". We have never had to much luck with this zone but we kissed our baby and shed some tears and watched as the doctors wheeled her back. As we made our way back to the waiting room where friends and family were waitting I have never been so scared in my life. We have been through so much to lose her now. It could not happen! Shortly after being in the waiting room our Pastor Mark came to see us. Prayer was strong! Time seemed to drag but at the same time it helped so much to check Facebook. To know so many of you were praying for Hannah, our family, the doctors and nurses but also the child and family that made all of this possible was such an amazing feeling. I could not keep up, at one point I had 106 new posts on facebook. I have to tell you I felt it! The feeling of strength and peace was undescribable. It helped to have my family and friends there and at times laughter to get us through. 5:30 pm came quickly and we turned the MNF game on to see if my 9 year old, his birthday sign and his blue hair would be on TV. Watching the football game helped the time to pass. We were getting updates every so often from the surgeons and that helped alot too. About 2 and a half hours in we recieved report that Hannah was ready, bypass was set but we needed to now wait for the heart. The organ that was going to determine my daughters life was in route on ice and lifeless to save her and this was the hardest wait of the night. The sight of her transplant nurse and the news that the heart had arrived was such a relief. More waiting, more football and of course more waiting was the way our evening was going. Even though my husband would have never missed this night for the world it did help that the one waiting room with the TV opened up so we could stay occupied with the football game. He was supposed to be at the game with our son for his birthday and I think he felt better by watching the craziness. As many of you might know the game was a nail biter and it was coming down to the last couple plays of the game. We truely did not think Seattle had a chance and then I opened my mouth. I really should have bought a lottery ticket! I said " with Hannah getting her heart there is no way 2 miracles can happen it one night". Then it happened! With 8 seconds left on the clock the hail mary was thrown, Golden Tate had two hands on the ball and he was down in the end zone. As the play was up for review I noticed our transplant nurse heading down the hallway. The play stands as called and the Seattle Seahawks won. Hannah's new heart as beating! They told us she came off bypass well and the moment the blood filled the heart it was beating on its own. Like it never stopped! Praise the LORD!!! We joke and say Hannah will probably be a Seattle Seahawks football fan. They were cleaning Hannah up and then we were able to go back and see her. Shortly after the end of the game Hannah's transplant surgeon made his way out to talk with us. Dr. Permut is amazing! As he came into the room he handed me a little baggy, at first it took me a minute to realize the thing I was holding in my hand was the same tool that saved my daughters life but then less than 24 hours later almost killed her. The pacemaker was no longer needed. A little after 11 pm Hannah was safe and sound in her room and in amazing condition. The first thing I noticed was the pink tone in her skin that I have never seen before. Then I saw that dreaded monitor, the same type of monitor that awoke me numerous nights and that rhythm I had never seen before. It was a normal heart beat! Thank you God!! It was so amazing to see her sweet little face. We talked to the doctors and hugged the night nurses with excitement, the day was finally here. Out with the old and in with the new. Then we got to see it. The xray I had been waiting to see. As Dr. Lewis- Newby pulled it up on the screen and I was shocked. Her heart was not to much smaller then the previous heart but this is what we learned. Hannah's old heart was large and stiff and did not squeeze well. The new heart looked spectacular! It was pumping and squeezing great and everyone was very happy with the results. Hannah's new heart was not from an infant but it was from a little larger child, we are guessing a 1-3 years old. Because Hannah was so used to having a larger heart in her chest and her chest cavity had enough room, she was able to accept a larger heart. We are not sure where the heart came from or even what happened to the child and even though someday I might want to know those facts really don't matter. What matters is someone is grieving and even with that grief they made the decision to save a life. So many people tell me I am strong but the person who made the decision to donate this heart yesterday will be one of the strongest people I will ever be associated with. I hope someday Jon and I get the chance to meet the people who saved Hannah.
After a night of tossing and turning in the ICU beds upstairs we were greeted with the news of a wonderful evening. She is doing very well and the doctors are trying to get the medications introduced to her little body. We were made aware today that we will no longer be able to have visitors unless it is immediate family. Our world has taken an amazing turn and we are only embarking on the second half of this journey. Once we get Hannah home I will no longer be able to pack my baby in the car and go shopping, I will not be able to pick my boys up from school, and church will be out of the question for a while until we can get settled. The list of medications will be scary. I am up for the challenge but I am also very scared. We have worked so hard and been through some much for this heart to reject. Our journey is not over but for now my 9 year olds birthday wish has come true. Thank you from the bottom of my heart!~ Jennifer Campbell
October 9, 2012
These past couple of weeks we have been very overwhelmed and so much has been going on. I am going to try and update everyone as best I can in this entry. I am sorry it has taken me so long to get here.
4 days after Hannah's heart transplant Jon and I were surprised by the doctors to find out Hannah's heart never had Cardiomyopathy. The word I tried for weeks to pronounce correctly was never even invading my daughters body. After spending 118 days learning about a condition I was certain I was a pro at, it was never even there. We were now introduced to a new diease. So here we go again. Diffuse Rhabdomyomatosis. It took me even longer to say this one but now I can say it ten times fast. I'm not sure I will ever be a pro at this diease because as far as we know the doctors are not even sure what this diease even entails. After a study of the heart and placing it under a microscope to see the cells, this is what we know. This is an extremely rare condition. There has only been 3 documented cases in the world (hopefully Hannah's will be the fourth). The cells in the heart were similar to a benign tumor but instead of attacking one spot and forming a tumor, the cells invaded the entire heart muscle which caused rapid growth. This is why after 2 weeks her heart had doubled in size, this is why none of the medicaions were working and this is why her heart was remodeling at such a rapid pace. I will never forget the day our electrophysiologist showed me a diagram of 7 different changes Hannah's heart had made in the couple of months we had been there. This has been a very emotional couple of weeks for us because we had received the heart that was meant for Hannah, it was a perfect match and as we are dealing with our emotions of happiness that our daughter has been saved and our grief that a family has lost a child, now we had a new diagnosis and one of the risks is having other tumors throughout the brain, liver and the kidneys. I know many of you joined this rollercoaster ride with my family but this couple of weeks have been too much. I could not bear to get anymore bad news and to have you all go through this with us again. The only way to tell if this had affected her further was to do an MRI. Which means placement of another breathing tube, anesthesia, and very strong drugs (which we have been trying to get off so we can be moved to the general floor). Yesterday was the day. The cardiac anesthiologist took her back about 11am. It helped to pass time that another heart mom and I got together to visit and before I knew it the clock hit 1:15pm and I headed back to the room. It was a good thing I did not receive a call but I wasn't sure if she would still be intubated or not. It almost felt like 2 steps back. As I walked into her room I was pleasantly surprised by what I saw. A happy, alert, and kicking baby, and this was the Hannah I knew. I was then told we would not receive any results until the next morning so I held her and kissed her a while and then made my way home to the boys. Jon would be at the hospital a little after 4pm to be with her so that always helps to know her daddy would be there soon. A couple of hours later my phone rang and it was the hospital. They had the results of the MRI and it was NORMAL!!! Hannah had something that was normal!! Praise the Lord!
For the past couple of weeks Hannah has also gone through a very horrible withdrawal period from all of the narcotics. I have never been exposed to what somone has to go through in withdrawal, so to see my 4 month old baby girl throwing up profusely, having massive amounts of diarrhea, temps in the 100's, screaming/crying, shakes and thrashing I had seen enough. The doctors and nurses have since started to wean her slower because she is obviously very sensitive. It will just take us a little while longer to get off of some of the medications.
I arrived rather early to the hospital this morning, boys only reading started today for the boys and so I got a 15 minute early head start. I arrived at the hospital and said my prayer and made my way to Hannah's room. As I walked in it was great to see my baby. The Hannah I knew before all these procedures and crazy medications was starting to come back. Today I saw a smile. This is something I haven't seen in weeks and it was amazing! She has now discovered her tongue again and she loves sticking it out at me as I clap and encourage. Now when she is 5 years old I will not be so happy about the tongue but today it was amazing! I held her and she didn't fuss and her nap in my arms was priceless, even if my arm was asleep and felt like it was going to fall off, I didn't dare move. I waited too long for this moment.
Even with the new heart I was not sure I would get to see the baby I knew before. With healthy children or sick children you are never sure when your life might change and you could lose your child. There is not a day that goes by since the transplant that I do not think about Hannah's angel. That family made a decision in time of pain to save my little beauty queen because of them I have the opportunity to hug, kiss and love Hannah. I will forever be grateful to these people I have never met.
Thank you dear family for giving me my baby back. For letting me see her smile again, for giving me the chance to hold her. We will be forever connected. I can't wait to raise my daughter and tell her about her angel and the family that allowed her to survive because without you my daughters heart would have continued to grow and eventually would have killed her. Thank you for giving life in your time of pain. I think about you everyday and the sadness you must feel. I pray for you to find peace with your donation. I will never be able to say thank you enough for the chance you have given me to be the best mother I can be to Hannah Mae.
October 11, 2012
Everyday keeps getting a little bit better. Hannah is doing well with a schedule lately and it is very nice to have a routine. Since after her withdrawl period she has been sleeping about the same time everyday and she has been having really great awake time. Today during rounds she was able to do well enough to get off of 2 different IV meds so she is only down to 1 medication that is IV and she is able to go to the general floor on that. The doctors have not told us when we will be able to move to the general floor but we are hoping it will happen next week sometime. Because of some of her delays we are hoping she will be home now by Thanksgiving. What a great thing to be thankful for this year! The doctors are still trying to work out her issues with acid reflux. They are telling me alot of heart patients have acid issues so on Monday they are going to have GI come in and do an acid probe in her tummy to see how bad it truely is. Hoping all will go well with this study. We are so excited because one of our nurses is a wound nurse and she says Hannah's scar is one of he best she has ever seen. She mentioned that it is a very clean cut and it is healing well. She also encouraged us to cover the scar because it is healing and starting to itch so this means, Hannah is wearing clothes! It's the small things in life to be grateful for, who would have thought wearing clothes would be so exciting.
~ Jennifer Campbell
October 28, 2012
This post is long overdue. So much has happened in the past couple of weeks and I really have had no time to sit down and write. On the morning of the 13th of October, Jon and I were getting ready to head out the door when the phone rang. It was the hospitals number and even though we have receieved a new heart, every time I see that number on my phone my skin crawls and my heart races a mile a minute. It was Suzanne the charge nurse on duty to let us know they were moving Hannah to the general floor. This was such an exciting day but so many mixed emotions came with the move. We have been in the CICU for so long and so many of the people there are like family to us it was hard to leave but I did get my own bathroom and now I am able to eat in the room which is such a convenience. The only hard part was that now I was going to be living at the hospital again in preparation of bringing my daughter home. Even though I was very excited about it I had developed a schedule. I was able to sleep at home and see my boys and spend time with my husband in the evening, but I did what I had to do and as of Oct. 15th I had a room with a view. I was so happy to be taking care of my daughter, I was changing diapers again and learning to give the 18 different medications that Hannah is on. That Monday morning my classes started. Pharmacy would come and then the transplant nurses, there are so many meds to learn and details about a child with a transplant that will become my new normal. Six months of isolation, no visitors but immediate family, I can't just run to the store for milk with her, or go to my 9 year olds soccer games, Thanksgiving and Christmas will not include family or friends this year, no grapefruit or pomegranate, and we are going to be investing in stock of Purell. I am not complaining and I am so thankful for everyday that I have my sweet baby girl but for those of you that don't know me I am a social person and I am scared I will go crazy.
The past couple of weeks on the general floor have gone by rather quickly, I have been keeping very busy and have been holding Hannah as much as possible. She has still been dealing with the withdrawal issues from the pain medication that she is getting by IV and the acid reflux issues. The doctors did do an acid study and they found that her probe had acid touch it 171 times in 24 hours. With having acid reflux that severe the doctors have had to add 2 more medications to help her and they seem to be working okay. She still has reflux which is causing her to gag quite a bit but it is better than it was. They have been talking about doing a surgery to help but Jon and I do not want to go there yet. Hannah has been through so much and I can't bring myself to have her go through any more anytime soon.
Since the diagnosis of Diffuse Rhabdomyomatosis the doctors, nurses and ourselves have been trying to find as much info as possible. Our principle Cardiologist did receive the 3 documented case studies and is going to be giving me copies sometime this week to read. I did find out that the 3 documented cases are no longer living. This has been a shock to us that Hannah Mae is the only living person that Seattle Children's Hospital knows of that has been diagnosed with Diffuse Rhadmomyomatosis. I knew Hannah was special! With trying to find out more about the diease Jon and I were given the oppurtunity of a lifetime...to see Hannah's birth heart. So on the 19th Jon and I with our team of doctors made our way to the Pathology Dept. and met with the Pathologist that has studied Hannah's old heart. When we walked into the room there was a tray in the center of the table that was draped with a cloth. We knew what was under that material but it was so hard to believe what we were about to see. As the pathologist uncovered the organ I couldn't beleive my eyes. Jon and I sat there in amazement and then it happened, I picked up the old heart and held it in my hand. There I sat with my daughters heart in my hand, the thing that almost killed my daughter 4 different times but yet the malformed organ that held on long enough to save her life. It was such an emotional time I will never forget. I could not believe the size. Our pathologist even said with over 20 years of experience he has never seen anything like it. He could not beleive she is living. Jon and I took pictures, asked questions and got to see the slides of the cells that over took my child's heart. The doctors did notice the cells went right to the edge of where the new heart is connected. This means that in the tiny bit of the old heart that stayed to sew the new heart to, there are still Rhabdomyoma cells. They do not think the cells will cross the suture line but because this is so rare they are really not sure. The doctors also do not think this is hereditary or genetic which is good news since we are not sure if someday we will try again.
This past week I finished my pharmacy teaching on her meds and the pharmacist told me I was the smartest mom she had worked with, I told her I was born with the genes of a pharmacist and could not take all the credit. Needless to say my classes on Hannah's medications are now over. I will finish my transplant classes this week and hopefully by the end of the week Jon and I will be able to do our 24 hour care study. This is where we need to administer all of her meds and do all of her care for the 24 hours so we can go home. We are hoping we will be home with Hannah Mae by Friday or Saturday.
November 22, 2012
Ever since I found out I was pregnant I have been thankful for my child. The last 6 months of my life has forever changed me. I sat here last night and thought about everything my family has been through and how we all fought and prayed to save Hannah Mae. Today I am thankful for Hannah Mae Campbell. I am so thankful that she is a fighter! I am thankful that she fought through ablati... on and pacemaker surgery, I am thankful that when she was going through cardiac arrest she fought for over a hour of chest compressions until Jon and I could make it to the hospital to put her on full body life support (ECMO) and then the dreaded day came when she lost all oxygen, her levels were so low the respiratory team was not getting her back. Then it happened, out of no where she began breathing. I was so scared I was going to lose my daughter that night but she surprised us all. The doctors and nurses have called her a miracle. Something that we have known all along. Then the day we hoped for, her heart had arrived and she kicked ass! Since she has been diagnosed with a disease that has only had 4 reported cases in the world. Diffuse Rhabdomyomatosis did not get her. She is the only survivor reported!! Hannah Mae is a true work of God and I am so blessed to be her mom. Today I am thankful for my complete family. I am thankful for Hannah Mae's smile. I am thankful for her big blue eyes and her sweet little laugh. Today I am thankful for the strongest little girl I know, my daughter. Happy Thanksgiving everyone! Thank you.
I have been writing on my facebook page the things I was thankful for leading up to the holiday. I saved writing about Hannah until Thanksgiving day and what I wrote above is what came out. This year Thanksgiving took on a whole new meaning. Yes my stuffing came out of a box and the cranberries came from a can but we all sat down together and after prayer we said what we were thankful for. My 6 year old was thankful for the pilgrams but he was most thankful for his sister and we all agreed. We worked hard as a family to get to this point and at times it has been a struggle but making it through has made us stronger and I don't believe there is anything that will get between The Campbells'.
~ Jennifer Campbell
November 28, 2012
169 and 23 is our magic numbers. 23 is the number of medications Hannah Mae is currently on and we ended up with 169 days at Seattle Children's so far. As of November 13, 2012 we were able to take our daughter home. The first week of November was very stressful. I was continuing to live at the hospital and Jon's dad came to help us out with the boys. There were alot of things to finalize with our stay and what took the longest was to get Hannah off of her IV narcotics so we could take her home. Programs and in home nurses were being set up so I knew at this point it was going to happen soon. We were notified on November 11 that we would start our 24 hour trial the following morning at 8 am. Jon had the day off for Veterns Day and since he is running a little short on paid time off this was going to work out perfect. So first thing on Monday morning we met with the pharmacist and he brought in 21 different medications that we would be administering during the trial. So during that day we gave up to 12 different meds at one time 8 times a day. I always promised myself when I got to this point I would stay up and write thank you notes to the doctors and nurses that impacted our life. Thats what we did. By the morning rounds we were glad the night was over but it was great practice at what was to come.It was a little nerve racking but we managed to do it with only one little hiccup. On the morning of the 13th it was known this was going to be the day we got to bring our daughter home. So many people came to see us that day.It was so wonderful to see how quickly word had spread through the hospital that Hannah Mae was going home. It was a little emotional as well. Tears were shed and there were lots of hugs but we packed up the car and left the place that we had called home for 169 days. We made our way to I-5 and a drive that should have taken us 30-45 minutes to get home, ended up being about a hour and 30 minutes. Other drivers were probably not to impressed with us but we had precious cargo. Needless to say we made it home safe to our extremely excited and happy boys. They had waited so long for this day as well. Baby sister was home and they were able to be big brothers. We unloaded the car and we officially began a new path on this rollercoaster.
So we have been home now for 16 days and I have learned a few things about myself. I am not a morning person. I don't do well on little to no sleep. I always knew I could multitask but boy I AM a multitasker. I cannot hear what my husband or anyone has to say over 2 very talkative boys and a baby crying. I can take care of a feeding tube. I can insert a tube ND (in the intestine) and get in there the first time, TWICE! I can be doing laundry, making dinner, homework with my boys, rocking my baby in my arms and be giving meds all at the same time and I have learned I can be a stay at home mom with a heart baby. I never thought I could do this and don't get me wrong I have been in tears a couple of times in the past 2 weeks but we will make it. My family has been blessed by so many people that want us to succeed. They have helped with the boys, brought dinner to our house, and stayed on the phone with me until I no longer felt like I was going to lose my mind. I will be forever grateful to our amazing support system.
Since we have been home we have been going down to clinic at Seattle Children's twice a week to have labs drawn, an Echo done on her new heart and then a meeting with the doctors to see if we need to make any changes. I am happy to report that Hannah Mae has shown NO signs of rejection to her new heart at all. She has been gaining weight and is now a reported 17 lbs. All of her numbers have looked good and her Echo's have also looked great. The doctors tell us that her heart is right where she is supposed to be. It is still absolutely amazing to me that she no longer has the heart she was born with. This new heart is perfect for Hannah and I am so grateful that I am getting to know my daughter because of Hannah's angel.
~ Jennifer Campbell
December 9, 2012
I am so ready for this year to be over. We have been staying really busy at home and our twice a week visits to Children's have now turned into once a week because Hannah Mae is doing so well. At last weeks clinic visit all of her tests looked really good but Hannah's doctor did notice some higher score numbers they use to determine rejection. He did say all of her other tests looked great, so we are just going to watch her scores and they are going to keep a close eye on her for now. So my plan was to stay confined to the house and see how next week appointment went. Well that did not quite happen how it was planned.
So on my way home from clinic last week I received a call from my husband letting me know that our youngest was going to be suspended from school the following day for his 3rd time being to aggresive to others on the playground. I instantly felt smoke come from my ears. Since my little 6 year knows I cannot leave sister he would have never thought I would show up to school but he was wrong. My helper on clinic days, Janet, was with me and we both decided if she stayed in the car to watch sister it would be a good idea to go talk with the principle. So that is what I did. You should have seen the look on his face when he saw me! The meeting turned into a long one but we had things figured out on how to move forward. He would be missing the next day of school and I was not about to let him stay home with Hannah and I because that is what he wanted. So one of my dear friends and I came up with a plan that he was to go to work with her. He would be doing LOTS of homework, cleaning her office and writting letters of apology. The day started just as planned. Nancy picked him up a little after 9am and he made his way out the door. Hannah was sleeping so what a great chance to take a shower. As I went to get out I heard my phone ringing and my day was about to change.
Nancy was on the phone and with the calmest of voices one can have when something tramatic happens she said. "Bryce severed his pinky finger in the car door. I have called 911". My heart sank. I have a daughter who cannot be in public and my son is taking an ambulance ride. I could not get a hold of my husband and panic was starting to set in. My phone rang again and it was Nancy, the firemen were there and the ambulance was on it's way. The fire chief told me it was a minor injury and the tip of the finger was cut but it was still sttached by a little skin. All I could think about was getting to him. So thank goodness for great friends that work in hospitals. My friend Cookie just got off working third shift at the hospital I was now trying to get to. I knew she had not slept all night but did not know who else I would trust to give sister her medications. It was worth a try. I called her and within minutes she was here to help. Thank you God for giving me amazing people in my life. I made my way to the hospital and was able to be there with him. I finally was able to get a hold of Jon and he quickly made his way to the hospital as well. Bryce ended up with 9 stitches and his pinky finger is now a little shorter but he is a strong little boy. He will never forget the day he got suspended from school. All I know is I need a vacation!
~ Jennifer Campbell
December 12, 2012
Well today it officially happened Hannah Mae is sick. So last night I came down with a horrible headache and not 15 minutes later Hannah had a fever. I knew that since her immune system is compromised from her anti-rejection drugs we would not go through a winter without her getting sick but this is horrible. Jon was up all night with our sweet little girl trying to rock her and comfort her but nothing was working. I wasn't much help because everytime I would stand up I thought I was going to pass out so Jon was a one man band. The night was long but my husbad pulled through and took sister to her scheduled clinic visit today at Children's. Thank goodness for Nana because she dropped everything and canceled appointments to go with Jon. The Echocardiogram went well and during clinic alot of questions were answered and more drugs disappeared. Hannah is currently on 17 medications. They did a chest x-ray to see if she has developed pneumonia or if she has developed a bad cold. We will find out more tomorrow when they call with the lab and x-ray results. Until then we leave it in the hands of God. He has done amazing things with our daughter. Good news is my headache is gone and I can be more of a help to my very tired husband.
I know there are so many of you that want to see and meet Hannah and I hope you understand that things have happened when some of you have been able to see or take care of her. Please know Hannah Mae's health is way more important now than ever. I want the world to meet her and when the doctors give me the okay to have her exposed to people (other than her immediate family) I will be showing her off to everyone I can, until then you need to understand she is still very fragile.
I want to say thank you so much to all of the wonderful people that are supporting us. Whether it be through prayer, meals for the family, helping with my boys, monetary donations, and even gdiapers donated their product to us. (gdiapers is amazing if you are not familiar with their product please take the time to search for them online.They have saved my life!- NO MORE BLOWOUTS!!!) I am so grateful for each and everyone of you. Thank you!
January 20, 2013
This past month has been very difficult for me personally. I will try and update everyone the best I can.
Last time I wrote Hannah was very sick and tests were being run. Well the whole start of me not being able to handle things was when she was admitted back into the hospital the week before Christmas. The tests came back from clinic on the 13th reassuring us what we already knew, Hannah had a common cold but in 2 days, the night of the 15th of December we found ourselves in a panic. Hannah was sleeping the majority of the day and at first we thought she was just trying to get back to herself but that evening after dinner I went in to check her heart rate and temp, like I had done 15 times already that day. It was not good. She was burning up with a temp of 104.8 and her HR was 194. We instantly called SCH and told us to bring her to the ER. I decided to stay with the boys and Jon rushed her into Seattle. So many scary thoughts were going through my mind. Where had I brought her to get exposed to this? Did we not wash our hands enough? As I waited what seemed like forever to hear from Jon a dear friend came over to keep me company. I had put the boys down for the night and we waited. Finally by midnight they had told us she was being admitted back into the CICU. Jon was going to stay with her. We had worked so hard to get her out of the hospital and now she was going back in. We were looking forward to our Christmas together. My body had deflated.
The following day was the Christmas preformance at our church and even though the last thing I wanted to do was to try and look presentable the boys had practiced so hard and we got ready and put smiles on our faces. While the boys were off at class I attended the service and could not hold it together. It seemed that every bible verse and every hymn we sang spoke to me. Jon was always by my side and now I sat alone (I had the whole pew to myself). I felt like everyone was staring at me but I could not stop crying.Then I felt a hand on my shoulder and my dear friend Jennifer had left her family to sit by me. I will never forget that act of kindness as my heart ached. After tests were run all night, Jon called to let me know she had developed bacterial pneumonia in the lungs. He also decided it would be best since I was now coughing to stay with her. So again we divide and conquer. Hannah had to stay in the CICU for 3 days. During her stay she was showing great improvement. I think it was because she had her daddy by her side. This is the week I really started to have a hard time. I didn't see my husband for days, I was trying to get ready for Christmas and I was worrying about the health of Hannah. Well after the 3 day stay in the ICU they moved her to the general floor where she spent 4 days getting healthier. She was improving so well she ended up being able to come home 3 days before Christmas.
This Christmas was absolutely amazing! I will never forget the kindness shown to us by complete strangers. Jon and I were not sure how this Christmas would be this year and we had been saving for the boys to get one nice present. Well a couple of weeks before Christmas I received a call from a dear friend and local firefighter, letting us know that his department had adopted us this holiday season. So on the night of the 21st of December the firetruck lights shown bright through our neighborhood. At first the boys thought something was wrong until they saw Santa get out of the truck. To see those men in uniform bring in boxes of food, presents for the boys and a much needed back door that was damaged and our landlord would not replace, I was brought to tears. Thank you Snohomish Co. Fire District 1.
Christmas Eve service has always been a favorite. There is just something about a congregation of hundreds of people singing Silent Night by candle light. My heart filled with love and tears in my eyes. At that moment everything was right in the world.
Christmas morning arrived and I cannot even begin to explain the joy that I felt. The day was filled with excited but tired boys, happy but tired parents and a little sister that smiled all day long. We enjoyed a quiet morning at home and then we all bundled up to head to Nana and Papa's house to enjoy family and a marvelous prime rib dinner prepared by Papa himself. I am blessed!!
Since the scare before Christmas I have trying to do my best by keeping Hannah secluded. The flu this year scares me.We are of course going to labs every week for blood work and clinic visits every other week now because her heart has been doing so well. We have changed her medication a little bit but other than that we are holding strong. Besides Hannah and her acid and mucus emisis she is doing really well. Since the new year we have been having therapists come to the house for OT/PT, feeding and family counseling as well. It is going to be a long road to get her off the feeding tube but we are working on it. She has taken up to a tablespoon of baby food at a time now and we are making small steps. She really likes squash but I think carrots are her favorite.
This new year has had a promising start for The Campbell Family but it is a work in progress. Having a child with heart issues has to be the hardest thing I have ever been tested with in my life. Within the past month this has really hit me hard as a mother, wife and a person. I was trying to be everything. I couldn't do it anymore. I was trying to save my marriage, be a good mother to 2 boys and be a good mother to a heart baby. Somewhere along the way I began losing myself and I wasn't good for anyone including myself. I had not really been out in public much in 2 months (which is so hard since I am such a social person), I had one pair of pants that fit and as much as people tell me how strong I am, I felt like the weakest person in the world. I never really had time to slow down after I gave birth. I hope noone is getting this confused with how grateful I am for my daughter because I would not trade it for the world. This just happens to be another part of this rollercoaster ride I am trying to deal with. I have been working on myself while doing everything else with the help from my husband, therapist and God. I also have to say I am so blessed to have the support system I do because I could not do this without these people.
On January 11, I received a letter from the bravest person who is so dear to my heart. After a long day of Echo and clinic visits my mom (who was here visiting last week) and I made our way home from SCH. Only after being in the home a hour, my phone rang and it was Jason one of the transplant coordinator's. He informed me a letter from Hannah's angel's mommy arrived for me. I was so excited but so nervous and then without even thinking about it tears were streaming down my face. Jason was in the process of emailing me a scanned copy while I refreshed my email every second or two. Jon and I always thought we would be the first to write the letter. We are so happy to have our daughter but from the beginning as most of you know Hannah's angel and it's family has always been on my mind. We have prayed for them countless times. To give them peace and help with their grief. We have also promised to raise Hannah with the understanding of how important this child's life was and how her life would not be possible without this angel baby. I have thought numerous times about how I would thank this selfless person for saving my daughter. What words would I use? Was this child a boy or girl? How old? How did they die? Did the child like to smile? The nurses always said Hannah was going to be a dancer, she loves to move her legs and dance parties are a must after our noon nap. Did this child like music? Did this child like to dance? Some of our questions were finally answered and the mother sent a picture so I could see his beautiful face. As much as I have wondered about this the day it was finally here and I wasn't sure now if I wanted to know.
He was 13 months old. He died an accidental death. He was loved by his 2 big sisters. He had big beautiful eyes. He had a huge smile. He was happy. He loved music. He loved to dance.
The heart I believe is what holds the passion, love and determination for a persons body. When someone talks about having heart they are not talking about having functionality of the organ. How much of this little boys heart is in Hannah. She loves to smile, she is so happy, Hannah loves music and of course dance parties. I now have a face to my daughters heart. This amazing woman took a part of her deceased son and decided to save my daughter. There are no words that I can use to say thank you enough. Another piece of this puzzle has been added and there are so many more to go. Through this life experience I am learning to be a better wife and a better mom, I am learning about medical procedures and medical terms I never thought I would need to know (and I like it) , and I am also learning I can do it and I am important too.
January 25, 2013
This week has been a good one. Very busy and lots of appointments. Sunday afternoon we took time as a family and all went on a walk. It was only 2 blocks because of the cold but we bundled Hannah up and the boys rode their bikes and it was quality family time spent. All of us out of the house at the same time together, AMAZING!! I loved every minute of it!! Monday morning we all headed out to the doctor's appointments. Bryce had allergy testing done and Hannah had her check up with the pediatrician. Everything went really well but her poor little legs. We needed to update her shots. Needless to say it was a rough night and following day. Her Occupational and Phsyical Therapist was here this week and gave us great news on her development. Even though Hannah Mae was in a bed for so long, she is not concerned with her ability to catch up. Hannah is working on rolling over like a pro and she sits up with such a straight back, it is beautiful! This week Jon and I have really put energy into working on us and it has made quite the dfference. Always a work in progress but I believe this family can get through anything. Hannah Mae had an Echo and Clinic appointment on Wednesday and we are still dealing with all of her emisis but other than that her heart is looking great. Because the doctors have never seen a heart transplant after Diffuse Rhabdomyomatosis they have decided to do a biopsy mid Febuary to make sure the cells are doing well and not crossing over the suture line. We are a little nervous but it is for the best and we know that. We are just praying that everything goes well. It's in God's hands.
~ Jennifer Campbell
March 15, 2013
It has been a while since I have written anything and thank you to those that have been patient with me. Life has been a struggle lately and like I have said before it is a work in progress. So much has happened the past couple of months for the better.
Hannah Mae is doing really well. She is making progress constantly. Last month we had the biopsy on her heart which was an out-patient procedure. We received the test results a couple of days later and we were told her heart does show a little sign of rejection, which is listed as a 1R but not enough that medication can't control it. The doctors said that within the first year that a little rejection is expected. Because Hannah has been doing so well the cardiologists have now moved her to once a month check-ups and she is currently on only 6 medications. Way to go sister!! We are so proud of the hurdles she is over-coming.
Last month while at a routine check-up her feeding tube was still inserted into her intestine. They were having to bypass her stomach because it was to weak to handle food. In order for her to progress in her feeding therapy, her tube needed to be in her stomach so the doctors could know if she could handle it. The outcome did not look good. We were on the verge of having a feeding tube surgically implanted into her stomach but at this appointment the doctor on duty encouraged me to try having her tube inserted into her stomach. I was a little hesitant becuse she had just been throwing up that week when the tube was in her tummy. I ended up giving in and to my surprise she did not throw up at all. In fact it has been very rare that she even throws up today. by the grace od God. The feeding therapists and the doctors have decided to hold off on the surgery for now and give her time to work on eating. They are again amazed by her improvement. Jon and I are so encouraged by this and we are working with her.
This past month has been very busy for us. I entered Hannah Mae into a photo contest through Parents magazine that she won. YEAH Hannah!! So we will finally be able to buy her a new carseat. The Hope for Hannah Mae facebook page is off and running and in 1 month time we hit over 1000 likes and supporters (please like her page on facebook if you can, more friends the merrier). Life Center NW put together a bulletin board at Seattle Children's about receiving and donating organs that featured Hannah Mae and her 1st birthday is coming up and boy are we planning that. Busy! Busy! Busy!
Hannah Mae needs absolutely nothing for her birthday so what a better way to celebrate a 1st birthday than to celebrate with a blood drive. It seems to me that 1st birthday's are more for the parents anyway so in our case why not save some lives. We have partnered with The Pudget Sound Blood Center and we are planning to celebrate on the 17th of May (so please mark your calendars) at Our Savior's Lutheran Church in Everett. The day will begin at 10am and end around 7pm. With Hannah in the hospital for 169 days we have set a target goal of 169 donors for that day and would love for you to be one of those donors. If Hannah did not have people take the time to donate she would not have made it to her 1st birthday. To date my daughter has had 59 blood transfusions. I am so grateful for those donors and would love to give back. I understand that not everyone can be a donor but there will be other activities (bouncy house, balloons, face painting etc) for this special day. I hope as many of you can be there as possible. We have appreciated the support so much and would love to have you celebrate with us. Let's face it my family would not be where we are today without all of your kind thoughts and prayers through this rollercoaster of a ride that we have been on.
March 20, 2013
This week has been a hard one for me and it's only half over. My 7 year hates me, my 9 year old is playing baseball 4 days a week and my husband helps coach the team, so I haven't spent a lot of time with them and Hannah Mae is refusing to eat. I am tired, haven't showered in 3 days and I feel that the house walls are closing in on me. Probably because I haven't left my house in little over a week. I miss my friends, I miss my alone time and I miss the relationship my husband and I used to have. Everything in this house is a work in progress.
We have been working with Hannah on many different areas. Physical, speech, and feeding therapy are our top priorities. We are improving on all levels and up until last week I thought for sure Hannah would be off of her feeding tube in time for her 1st birthday but honestly I really don't think this goal is obtainable. As of last week she is not interested in food at all. I am happy when she can get down 2 tablespoons of food. I know my daughter will not always have to have a tube and I know someday she will love chocolate, crab and spicy Thai food too. Jon and I have a couple of options to consider and we are putting much thought into it. I truely believe this feeding issue is harder than anything we have gone through yet.
Hannah Mae always has and will continue to do things in her own time. I need to remember my patience and lots of prayer.