The first days

This has been an exhausting week, but we are thrilled that it's not from driving to and from Kansas City and having our little guy in the PICU. Babies wear you out!

We introduced Henry to Lily as soon as we got home. Lily seems unimpressed, but is glad Jason and I are home. She has not hissed or attacked Henry, so we consider that a win! When we are playing on the floor, she will walk by acting like she isn't checking Henry out, but we know she is. Lily does seem annoyed when he cries, since she is unable to sleep peacefully whenever she wants to.

We walked Henry around the house, and there were lots of fun things to look at! Henry seems to be very fascinated by ceiling fans (like a fast moving mobile). Henry barely slept during the day on Thursday, there were just too many awesome things to look at. He slept in the Pack-N-Play in our room that first night, and woke up a few times, but nothing terrible. I slept with my head at the foot of the bed so I could just put my arm in to settle him back down.

We had a good weekend - the first weekend this year that both Jason and I spent together in our own house! Friday night we took him out for a walk around the neighborhood. It was so nice to do something "normal". Friday was also Henry's first night in his room, and in his own crib. He did wake up a few more times during the night, but again, nothing I would not have expected from a five and a half month old. The last couple of nights, he has done even better, sleeping for six to eight hours in a single stretch!

On Friday we had home health care come by. They will be coming by twice a week for four weeks to check on Henry's heart rate, blood oxygen level, and weight. The nurse also put in a referral to TARC so that we can get some extra assistance on Henry's development. So far Henry seems to be developing very well, but is about a month behind. He basically lost that month while he was intubated. Already though, we have seen such a change in Henry since we got home. There are so many more things to see and so much more space to play that we have seen Henry making excellent progress. He has started reaching for things and can get himself up on his side (his head still seems too heavy to let him roll!)

On Monday, Henry's pediatrician finally got to meet him in person, after having read about him for five and a half months! Henry is tolerating his continuous feeds and continues to grow. Since we left the hospital, he has gained nearly 11 ounces! We will have many follow up appointments over the next few months with our pediatrician and the various clinics at Children's Mercy. By the end of July, we hope to have a plan in place to move him off of the continuous feeds, so we can reintroduce bottles.

We are so glad and thankful we have finally made it home! As we move forward, the updates may come less frequently, as we adjust to our new family life. Remember, no news is good news! We are grateful for everyone who has followed us along this journey and appreciate everyone's continued thoughts and prayers! 

Home

At long last, Henry is home! We arrived at our house the very minute that Henry turned 24 weeks old.We are so happy to finally all be together, including Lily. We are planning on spending the next several days getting used to each other in a nice, more comfortable environment. In fact, this will be the first weekend this year that both Paige & I will be together in our own house.

For now, we ask for some alone time as we adjust to this new phase of our lives. We greatly appreciate everything that has been done for us, and all the offers of help and support. Thank you for following us on our journey over these past 24 weeks. We have a long, difficult road ahead of us, but we know we will make thanks to your love and support.

It's the Final Countdown

We have made it to the 24-hour Parent Care Unit! We have been responsible for Henry's care since 7pm yesterday. The nurses only did one assessment per shift and cleared out his PICC line. The two of us got little sleep last night, but that was not really Henry's fault. Unfortunately, we had a loud neighbor, and the two times the nurse did come in woke him from a deep sleep. That, and the room is not exactly a four-star accommodation.

G-tube training is done. Medication training is done. All we have left today is the little party the nurses are throwing for him.

If all continues to go well, we will be home Thursday!  

Another week

This past week has been a long, frustrating week, full of tears, anger, and just about every other emotion as we just want Henry to come home. As we sit today, Henry is happy, getting fed, and on track to leave the hospital as early as Thursday.

Henry spent last weekend not eating again. By our count, we've probably spent at least a third of all of his weekends with Henry upset because we won't feed him. The doctors and radiologists felt he did not have pneumatosis, so we were able to resume feeds on Monday. Before the all clear, we had a gastroenterologist come by to discuss his thoughts on what we could do. We had asked for this consult repeatedly, and even asked back in the winter during the first few bloody stools, but none were ever consulted, to our knowledge. We knew the likely plan would start with Elecare formula only, and on a continuous drip. It was obvious, however, that the doctor had spent all of 15 minutes reading up on Henry and coming up with something he did that worked for two kids with very different congenital (non-heart) problems. He suggested feeding Henry slowly at 3 ml/hr working up to a full continuous feeds in 2-3 months. During that time, he would need to remain on IV fluids for most of his nutrition, likely keeping us here that whole time. Meanwhile, he suggested that if we really want to continue on providing breastmilk, Paige would need to eliminate dairy, soy, egg, nuts, seafood and wheat.

That did not go over well. By then, I had had enough. Luckily I was holding Henry at the time, so I couldn't do anything I would really regret. And, luckily our PACT nurse was there and I could tell her exactly what I was thinking. They left and she returned with the nurse practitioner and we had a long talk. It was an exhausting, emotional talk, but in the end we came up with a realistic plan. We resumed Henry's feeds at a continuous rate of 10 ml/hr and went up by 10 ml each day until Henry got to 40. We all felt we would be comfortable saying Henry is "tolerating his feeds" after a week at 40 ml/hr, continuous feeds of Elecare. As long nothing else happens, Henry would then be cleared to come home. Hopefully, at our first follow-up appointment, we can discuss the plan to slowly transition Henry back to bolus feeds, so that he will not need to have the feeding tube hooked up 24 hours a day. 

We did discuss our concerns with Henry being on Elecare only. As parents, we don't want Henry to develop some intolerance or allergy that he never had, as well as making sure he is getting the proper nutrition he needs. We also expressed concerns about Paige staying healthy while eliminating all of that from her diet. Paige spoke with a dietician, who was only informed of the need to eliminate "only" milk, eggs, and soy. She was going to look into the rest, but we never heard back (such as it has been with many things). It is going to be quite a while (probably at least two months) before we would be cleared to begin reintroducing breastmilk, so Paige is not going to change anything for now.

This has been a good weekend. Henry has been much more content and happy, smiling and cooing and playing with us. He passed his carseat test yesterday, so CMH feels he is safe to sit in a carseat for the drive home. Paige and I are getting checked off on as many aspects of his care as we can while we are still in the PICU. The hospital is planning on moving us back to the floor tomorrow. Hopefully the fifth time is the charm. We haven't talked to anyone about specifics though, because no one can make decisions or answer questions on a weekend. Hopefully we will know more soon.

Right now Paige and I are enjoying a good weekend with Henry. The last two drops on this rollercoaster have been very hard on us, so we are trying to temper our excitement, but we are very hopeful this next leap will be the leap home.

...Different Day

It's difficult for us to say where we are at right now. Henry began the week still on bowel rest. An ultrasound Monday showed the pneumatosis had cleared, and an echo on Tuesday showed there was no negative change in his heart function. So, we restarted feeds on Tuesday. Henry had a pretty good week, since he was eating, but he started getting a bit fussy Thursday afternoon. This morning, he had another spot of blood in his stool. The X-ray was negative for pneumatosis, and after some confusion, the doctors decided the ultrasound was negative, too. To be safe, Henry is being put back on antibiotics and bowel rest through the weekend. After that...

The PICU doctors and nurse practitioners are working with some gastroenterologists on a feeding plan. There are two initial thoughts: that we need to remove any possible allergens (dairy, soy, eggs) from his milk, i.e. Paige's diet; we stretch his feeds over a longer period of time. It's likely that we will restart his feeds by running formula continuously. 

For now though, we wait.