The Journey Home

Happy Baby

As I am writing this I am sitting at home with my beautiful baby boy, and for the first time since Hudson was born it feels like we are a normal little family.  Hudson was discharged on Sunday afternoon and we were finally able to go home with our son after almost 4 weeks in the hospital.  I thought about the day that we would be able to bring Hudson home for months before he was even born.  There were times where I was scared we might not make it to that point, but I am just so thankful that we have.  Sunday was incredible to say the least.  Obviously you now know the latest information, but let me start back from the last blog post to give you a glimpse into the past two and a half weeks. 

After the scare that we had during the first week of Hudson’s life, things began to settle down and Hudson was consistently improving.  The doctors started removing various lines and tubes as he progressed.  After being intubated for numerous days, the doctors have to do swallowing studies and other tests to check for vocal cord damage.  In addition they are assessing if the baby is swallowing without aspirating in order to be able to start oral feeding.  Hudson passed his tests and we were able to start bottle-feeding him.  We eventually moved rooms to the other side of the cardiovascular intensive care unit, which is where they place the less critical patients.  Jamey and I were thrilled because obviously this was one step closer to going home.  The week of July 8^th, things were going so well that the doctors told us that we could start rooming-in which is where we basically take care of the baby just as we would at home but obviously still under the supervision of a highly-qualified medical team.  We started this on Thursday, July 11^th and we were supposed to do this for 2 days and then tentatively scheduled to go home on Saturday, July 13^th.  On Thursday afternoon after Hudson had a session with physical therapy his oxygen saturations dropped significantly and they had to put him back on oxygen to bring it back to the normal range.  This ended up happening several more times during that night and the following day, and therefore they realized Hudson was not stable enough to think about going home.  In addition, Hudson started eating less and they had to replace his feeding tube in order to try to get him to gain weight and take his feeding goal.  Needless to say, the end of that week and the weekend were pretty stressful.  When Hudson was having these periods of oxygen desaturation, they were pretty severe and I was constantly afraid that he might have to be put back on the ventilator.  Luckily they never had to reintubate him so that was such a blessing.  As a result of these issues as well as the pulmonary hypertension problems that he had at birth, Hudson is now on continuous oxygen at home.  The doctors think that this will be temporary and that he should be able to come off oxygen completely by the time of his second surgery.  Over last week Hudson’s oxygen sats stabilized with the oxygen he was receiving, and he began to gain weight and his feeding tube was removed.  We started the rooming-in process again on Friday July 19^th and this time we were actually able to go home as scheduled on Sunday, July 21^st.  Hudson will probably have his second surgery a little earlier (probably around 3 months) due to his pulmonary complications.  Typically the second surgery is performed anywhere from 3-6 months and the third surgery occurs around 2-3 years of age.  Due to his compromised immune system and the severe risk that even a cold could pose to Hudson's health, the doctors have asked that we limit his visitors.  As a result we are only able to have family members visit him until after his second surgery.

Thank you all for your prayers and constant, unwavering support for Hudson and our entire family.  Trust me when I say that we have felt your prayers and we know that God has spoken to us through so many of you.  We thank God every moment that we were able to bring our baby home.  I think before our 20-week ultrasound I was so naïve about how many children and babies are sick, and many are hospitalized for much longer than we have been.  Please pray for all of these children because I can tell you that it is heartbreaking to see families in the hospital with their children for months, especially when some outcomes are not as promising.  We know that God has a special place in his heart for all of these children, and I can tell you from personal experience there are miracles at work at Children's Hospital.  We are excited to see what God has in store for our little miracle baby!

Psalm 73:25-26  “Whom have I in heaven but you?  And earth has nothing I desire besides you.  My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”

My Heart

Hudson with Dr. Alten

Home at Last!

The First Week

I thought finding out about Hudson's heart early on would allow me to be as prepared for everything as possible.  I erroneously believed that the Norwood (Hudson's 1st open-heart surgery) surgery itself would be the most difficult part of the first hospital stay.  The Norwood was really just the beginning of an emotional roller coaster that I was not even close to being ready for.  Hudson's Norwood procedure was performed on June 27th at 2 days old.  After he was born, the doctors noticed that there was a narrowing between the right and left atrium which was was leading to an increased pressure in the pulmonary circulation.  We did not know about this prior to birth, and this was something that needed to be addressed as soon as possible after birth.  As a result, the physicians decided that it would be better to perform his Norwood procedure a few days earlier than we had originally anticipated so that they could also address this narrowing between the atria.  Jamey and I originally thought that the surgery would be around 5-6 days old and it was hard to think about your 2 day old baby having to go through so much, but it was the best option for his situation.  The surgery went very well and afterwards they have to leave the chest cavity open to allow for any swelling to subside, and then within a day or two they can close it.  On the night of June 28th they closed Hudson's chest and this ended up being the beginning of the worst  night of my life.  The chest closure itself went very well and we were able to see him as soon as they had completed the procedure.  The cardiac team seemed to be having a slightly difficult time maintaining his blood pressure and oxygen saturations however initially it didn't seem to be a dire situation.  I was still in the hospital at UAB recovering from the birth and was only allowed to be at Children's for 4 hours at a time.  After we were able to spend some time with him, I had to go back to UAB.  Jamey and I had decided prior to Hudson's birth that he would sleep in Hudson's room in the CVICU and my mom would stay with me.  It helped me feel better about not being able to be with him knowing that Jamey was there.  A few hours after I had gotten back Jamey called me around 2 AM and told me about what had been going on for the past couple of hours that I had been gone.  Apparently Hudson had gotten so bad during the night that they weren't sure he was going to make it.  At one point Jamey asked the doctors if he needed to call me so that I could come over and they said to wait so they could try one more thing to try to bring his numbers up.  Luckily their intervention was able to turn things around and Hudson came out of the crisis.  By the time Jamey called me, things were significantly improving.  I am so incredibly grateful to the team that saved Hudson's life that night (Dr. Alten, Dr. Law, Hudson's nurses Katie and Hannah, and the respiratory therapist Justin).

Within a period of 72 hours I had gone from the greatest to the worst moment of my life.  Luckily, since that night things have really gone well and Hudson has made incredible strides.  Today, July 2nd has been the best day that we have had since Hudson's surgery.  He has had almost all of his tubes and catheters removed and has been weaned off the majority of his medications.  The best thing of all is that he is now off the ventilator and doing great.  I am also going to be able to hold my baby again for the first time since the surgery.  This journey is only beginning and I now realize that every thing can change in a moment.  It might be difficult for most people to understand, but every small milestone seems like the greatest achievement ever.  Jamey and I are both eternally grateful for everyone's prayers and support for Hudson!  We can't wait to continue sharing Hudson's victories with all of you.

Hudson's Birthday

Hudson Day 5

Hudson Day 7