Thankful Thanksgiving

It has been quite a month since Henry's trip to the cath lab. 


On the one hand, it has been a rather stressful time as we are now dealing with a baby who no longer sleeps through the night. Shortly after the cath lab, we had a three week argument with our insurance company and his GI clinic trying to get his antacid medicine refilled. During this time, he was switched to a different (i.e., cheaper) medication because it was easier for all of them. Henry did not handle the switch well. Some nights, he was crying out every hour. We are back on his previous medication, but it will be about another week before it is built back up in his system. We have seen some improvement over the last couple of nights, but one side effect from all of the late nights is that Henry finds it much easier to fall asleep when he is being held. Once we feel his heartburn at night is better, we will have to re-teach him how to soothe himself.

In more exciting news - although equally stressful, in some regards - Henry has now discovered crawling. It is an odd crawl, with his right leg stuck out like a kickstand, but it sure is effective for him! We are still slowing baby proofing the house, with a few gates up and all the outlets covered. It is wonderful watching him make discoveries. We forgot just how hilarious door stoppers are! His laugh is fabulous and his smile will melt anyone's heart (especially with the two bottom-front teeth!)

Monday was a busy day for us up at Children's Mercy. We met with our Special Care doctor and OT first thing in the morning. Henry basically met his weight goal and finally reached 9 kg (19 lb, 13 oz), so the doctor was pleased with that. We were excited to see our former OT specialist from the PICU! She was floored at how well Henry has grown and changed since the spring, and she gave us some recommendations to help with eating solid foods. 

In the afternoon we went to cardiology. Henry had an EKG and an echo. The cardiologist was very pleased with how Henry has done since the angioplasty and coming off of the sildenafil. After the echo was read, they agreed that Henry's heart function is now "low-normal". This is the best his function has ever looked, and miles ahead of the moderate dysfunction he had back in March. The doctor is so pleased with it that she told us to leave and not come back for five whole months! We don't go back to cardiology until April!

On this Thanksgiving Day, we are grateful for so much. We are thankful for all of the doctors and nurses who cared for Henry and helped him become so strong. We are thankful that we have had each other to lean on during all of the difficult times this past year. We are thankful for all of you, our friends and family - for your thoughts, prayers, support, and for following us on this journey.

And most of all, we are thankful to have Henry in our lives. Despite all the fears, stress, and exhaustion, he has changed us so much for the better. Thank you, Henry!

Reason to Celebrate

Friday certainly provided plenty of drama and excitement, but the only news that mattered came early in the afternoon. 

The news from Henry's cath lab was excellent. The doctors did see narrowing of his left pulmonary artery, next to his Glenn shunt. It proved to be not as severe as the echo had indicated, but was still something to address. They performed an angioplasty, inflating a balloon in this artery (4 times) to stretch it out.

After the angioplasty, they decided they did not need to place a stent. Additionally, there were no significant extra blood vessels growing around his Glenn that needed to be closed off. This is excellent news, as it means Henry's own, reconstructed, anatomy can keep performing the amazing job it has been for the past four months. On top of this, they feel his lung pressures are strong enough for us to take him off the sildenafil. One less med!

I don't think Paige or I can express our full amazement at how Henry is doing. Hypoplastic babies do not do this well; they do not grow this fast; they do not have so few cardiac complications; they are not this strong. Henry may have had his setbacks, but he is doing better than we had any right to hope. 

Thank you, Henry!

(PS: #TakeTheCrown)

October milestones

Over the long weekend, Paige and I celebrated our third wedding anniversary, and 11 years that we have been together. Over the years, we have had our shares of ups and downs; we've been through trying times and also gotten to travel the world. For this anniversary, our plans were much quieter.

On Saturday, we had our first dinner out without Henry since we got home in June. It was certainly nice to enjoy a meal without trying to keep a nine-month old entertained. At the same time, we still cherish every one of those crazy dinners at home!

On Monday, the three of us went up to Lawrence to enjoy the nice weather and a day off of work. I was able to get a needed haircut, and Henry joined me for his first haircut! He did really great, sitting on mommy's lap. He never cried or got too squirmy, but did keep trying to turn around to see what was going on! While he does look sharp, it was a little hard to see the long shock of hair on top of his head cut off - hair he's had his whole life!

On Tuesday, we went up to Kansas City for some doctor's appointments. Henry continues to amaze all of us. He weighs over 19 lbs and is over 28" long; for his age, his size is up around the 35th - 40th percentile. Over the past few weeks, he has continued to increase the amount of his formula he takes by bottle, and is taking about 2/3 of it by mouth every day. He is sitting like a champ, and is stretching and reaching for everything. He is not crawling yet, although it is clear he is a butt-scooter.


Back in September, Paige received an unexpected call from Henry's cardiologist. She had shown Henry's echocardiogram at the weekly heart team meeting, and there was some discussion about the area of narrowing around the Glenn. The pulmonary artery that connects with the Glenn shunt passes behind the reconstructed aortic arch. In the echos, it appears that this artery has not grown much since his surgery in April. Our cardiologist was not originally recommending any intervention, but the consensus of the team is that Henry should get go to the cath lab. The risk, as explained to us, is that his body could create additional small blood vessels to compensate for this narrowing, which would complicate the third surgery. The only way to get a good picture of what is truly going on is to do the cath. 

So a cath lab has been ordered and scheduled for Henry on October 23rd. There is a chance that the artery is fine - although echos are helpful, they are not as clear or definitive. If they see the narrowing they suspect, they will likely put in a stent to open it up. If they end up putting in a stent, Henry will need to stay overnight (and we were told he should hopefully not be in the PICU). We were initially told doing a stent would be risky for the third surgery, but Henry's surgeon said he sees no problem with it, especially if Henry could benefit from it. We are a little shocked when we got the call and are nervous as we prepare for this. 

This is still an elective trip to the cath lab. It is clear Henry is still getting sufficient blood flow to his lungs, as his oxygen levels have been consistently in the mid-80s. And spending any time with him will show he has tons of energy! Still, we do not want to have to do this cath any later in the fall or winter, so Henry is going to be a little more of a hermit over these next couple of weeks.

Although Henry has still spent more time in the hospital than at home, we are ever so grateful and thankful for how much he has taken off. It is amazing to see the boy he is becoming!

We will keep everyone posted on the results of the cath lab. As always, we appreciate your continued thoughts and prayers!

American Heart Walk

This will be short and sweet, but we are signed up for the Topeka Heart Walk this Saturday! Please consider making a donation to the American Heart Association.

You may view Paige's site here:

http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1126713&lis=1&kntae1126713=5E09ED67394647BCAFEBF6EE990E0D03&supId=392713959

Here is Jason's site:

http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1126713&lis=1&kntae1126713=5E09ED67394647BCAFEBF6EE990E0D03&supId=425493825

Henry also is going to "participate". His site is here:
 http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1126713&lis=1&kntae1126713=5E09ED67394647BCAFEBF6EE990E0D03&supId=425278943

If the weather is decent, he may even be making an appearance out at the lake!

September is here!

Monday, we went up to Kansas City for a cardiology appointment. Henry had an EKG as well as his first echo in over two months. We are pleased to say that Henry is doing great! The regurgitation he had in his tricuspid valve is completely gone! We knew he might eventually grow enough that it could disappear, but we are elated it happened so soon. This probably explains why he seems to have so much energy! He also continues to put on weight, and is up over 18 pounds. He is now off of lasix, but will remain on the rest of his heart meds until his third surgery. 

The cardiologists are still keeping an eye on some narrowing in his Glenn (the area where the second heart surgery was done). There is also some scar tissue build up where they opened up the wall between the atria. They can tell plenty of blood is still passing through, so the goal is to take care of those areas during the third heart surgery.

We visited the Special Care clinic a couple of  weeks ago and they gave us the OK to offer Henry more of his bottles by mouth. We are now offering him five ounces four times a day, and he is typically taking half or more. We also give him two to three ounces at night to help him go to sleep. Eventually, we will add another feed and move the volume from his continuous night feed.

All in all, Henry is really doing great. We are half way into September, the time of year where we are both suffering from allergies. Henry, we are sorry that you have no way of getting out of that. He hasn't been too bad, but Zyrtec and staying indoors have helped control that. The doctors at Children's Mercy are thrilled that most of our struggles now - sleeping, crying, schedules, etc. - are just normal baby problems. It's still hard for us to not worry that his cries aren't something much more serious, but it gets a little easier each week.

Dog Days of August

It's been almost a month since our last post, and overall, Henry's doing OK. A lot of our focus this month has been on his feeds, as we try and get him to where he should be for his age, while being careful not to stress his body by doing too much, too quickly.

We started the month by introducing Henry to solid foods, as we worked on condensing his daytime feeds. After a week of some soy-free rice cereal, Henry also got to try pears and a little bit of apple. We tried to pace ourselves as we increased the rate of his feeds, and they are now running over an hour and a half every three hours. Most feeds run faster, as we are letting him take an ounce and a half by bottle at the start of the feed.

Henry is getting stronger every day. He is now over 17-1/2 pounds, and is up around the 25th percentile for his age. He is still a little behind on his milestones, but he is sitting up (mostly) unassisted for long stretches. He's not rolling over (except in his sleep), but he is getting close. 

We have begun regular visits from TARC's Tiny-K program, helping us learn how we can help Henry meet these milestones. We also continue to get weekly visits from a home-health nurse to help keep an eye on his vitals.

Over the past two weeks, Henry has been noticeably fussier. He isn't sleeping overnight as well as he had been. In some cases he is crying out four or five times a night after midnight. More concerning to us is that we feel his breathing rate has increased. We mentioned this last week to our nurse, and our consensus was that he may have some increased acid reflux with the introduction of bottles and solids. So, we had Henry's antacid increased to twice a day. On Tuesday, we mentioned to our nurse that we hadn't seen much of a change. She called up to our cardiologist's office at Children's Mercy, and they asked us to bring Henry in for a quick check.

This meant that Tuesday was our first trip to the ER! It was a quiet drive up as we were both anxious. They did chest and abdominal x-rays to make sure there was no fluid build up in his lungs and that there was no signs of pneumatosis. Both x-rays came back fine and we were told to follow up with Henry's pediatrician by the end of the week.

Just like the docs in the ER (and nearly every other doctor over the last seven months), Henry's pediatrician said he looks fine! She did think his nose looked puffy, and Henry had been rubbing his eyes a lot lately, too. On top of everything else, Henry might just be dealing with hay fever! He is now taking Zyrtec and we have backed off of the solid foods for now, hoping this helps him over the next week or so.

The past week has been very stressful on Paige and I. It is heartbreaking not being able to comfort Henry when he gets worked up. We want to help him grow and learn how to calm himself, and go to bed by himself, but watching the monitors last night only reminded us how fast his heart will beat and how low his O2 level drops when he gets upset. It is a reminder that no matter how well Henry looks, he still a fragile little boy.

Although it has been a little stressful lately, Henry really is doing well. And it sure helps all of us that he's at home! Our friend Mary helped us get some really nice portraits of Henry earlier this month and our favorites are posted in an album at the link below. Enjoy!

Henry at 7 months

Holding on

Henry is now seven months old! I'd say it went fast, but it depends on which month you're talking about! The past six weeks have flown by much faster here at home. 

Last week we had two checkup dates at Children's Mercy, and Henry keeps impressing all of his doctors. The cardiologist only requested an EKG this time - no echo. She was so amazed at how good he looks, how good his vitals are, and his continued weight gain, that we will not need to go back to see her until mid-September!

Two days later we were back at CMH to see an occupational therapist and gastroenterologist. OT fed Henry his first solid foods, and he ate about six spoonfuls of rice cereal - yum! GI was pleased with his progress and advised us it was okay to do solid foods. We will be able to advance past rice cereal, as long as we stay clear of soy and dairy, and introduce new foods slowly.

We are taking it slow, only feeding him once a day. We found a highchair Saturday and gave Henry some organic rice cereal with Elecare - his first real meal at home. He loved it!

Hot July

The last few weeks have flown by! We have been home for a month now, and while we are all still figuring out our routines, Henry is doing great!

We have obviously had a lot of follow up doctors visits. We currently have a home health care nurse coming out twice a week, unless we have a doctor's appointment that week. This has helped us transition from Henry being constantly hooked up to monitors and still finding out here and there that things are stable.

After two weeks, we went back to Children's Mercy for our first clinic visit with his cardiologist. Henry had an EKG and an echo. The EKG showed something a little off, but Henry was moving around a lot during it and his doctor wasn't concerned. The echo looked basically the same, but possibly even slightly better. His doctor was also pleased with his weight gain! Henry has a lot to catch up to, but he is now on the growth curve. Four weeks after leaving the hospital, Henry had gained just over two pounds (just over one kilogram) to come in over 15 pounds! 

After the Fourth of July, Henry had his six month pediatrician visit. He got his vaccines, so we are basically caught up for him on that - not an easy task since he was hospitalized for the first five and a half months. Henry is hitting all the four month markers, but only half the six month. We have been referrred to TARC Infant and Child Services, and their Tiny-K program for development. Unless necessary, we won't be back until his nine month appointment!

Last Monday brought our first panicked moments. Henry cried every 45-60 minutes over night. His g-tube was irritating him and causing him to scream every time we cleaned it. We had home health care come out to look him over, as we will always be concerned it could be his heart. The nurse removed some water from the ballon in the g-tube, and she agreed that she thought it was the g-tube irritating Henry. She said the doctors may want to change it to a bigger one when we went back to Children's Mercy in a few days. At our Thursday appointment, the surgeon did agree he needed a bigger size, and Henry has seemed happier. Although we are still working on tummy time, he seems less irritated by the g-tube now. We even submerged it some in his bathtub the other night.

On Thursday, we also met with Special Care Clinic for the first time. This is essentially a second pediatrician, specifically for kids with the sorts of issues Henry has, who will help us plan his feeds, and focus on development. The doctor was impressed by his babbling sounds as a good indicator he is developing good cognitive skills, and thought his weight and height were very proportional. We dropped his antibiotic, the flagyl (one medication officially gone!). We have also developed a plan to move Henry off continuous feeds during the day. We are to take it as slow as necessary, as no one has any desire to be back in the PICU until his next open heart surgery. We have also been given permission to introduce solids, in particular rice cereal with the Elecare formula, to him. We are waiting until after our appointment with OT for guidance on that here in a couple of weeks.

Although we feel more tired than we did before, it's more of an exhaustive tired than a worried tired. We are very thankful and blessed that Henry is home with us. We look back and see how far we have come. From having to get assistance to hold our son, to watching him recover from open heart surgery, thrown onto a ventilator for six weeks not knowing if we would make it to the next surgery or would need to go onto the transplant list, to watching another recovery of an open heart surgery, and several times battle bloody stools, it really is wonderful we are home. 

Being home has also allowed Henry to meet more members of his family who weren't able to visit him in the hospital. He has met his cousin, Gunner, a couple of times now, and Nana will actually be watching both boys for a few days this week. Good luck, Nana!

And this past Saturday, four generations of the Hatfield family were able to come together, as Henry got to meet his great-grandma Hatfield!

Henry is one tough little man. Thank you everyone for your continued support, thoughts and prayers.

Rules

Now that we are all home, we want to be able to share our joy with everyone, but we do have some rules. Some may be obvious, but it's better to outline

-For the first few months, visits will basically be "Invite Only" - please do not call or ask to come by. We are going to be selfish and keep him mostly to ourselves. We want this time to get used to having a baby at home, even more so a baby that will need extra care. 

-After this time, please reach out to either of us if you are interested in coming over - we would prefer no "Drop Ins".

-We ask that any visitor be illness free. If you - or anyone in your household - have not felt good in the previous 48 hours, we do not want you to come visit. It's not worth it, as Henry will have a hard time recovering from even a cold. This includes headaches.

-Please refrain from using tobacco products prior to visiting. 

-You will be asked to wash your hands prior to entering the room where Henry is at.

-Unfortunately if it's allergies you believe is the reason why you keep on sneezing, we still would rather you visit another day than risk the chance of it being a cold and exposing it to Henry 

-Please make sure you have a bandage or something similar around any cuts you may have

-We do ask that you and everyone in your household are reasonably up to date on your vaccinations.

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.

Delay

This has been a long and difficult week, and while we still have a few more long days ahead of us, Henry seems to be doing well.

Henry threw us a curveball last week with more blood in his stools. This was pretty devastating to us, as it delayed our homecoming. What made it even more frustrating is that we had seen some blood in his diapers the week before his surgery, and we asked several times if all the nurses and doctors were OK with that. At the time, the consensus seemed to be that the GI tests done ahead of his G-tube surgery, along with the surgery itself, could have caused some irritation and bleeding. Since then, however, we have not been able to get a straight answer - no one seems to know, or be willing to commit to a reason.

We have spent the past week trying to rebuild our confidence in the staff here. The fact that our concerns turned out to be valid after they were repeatedly brushed off made it difficult to trust what we hear from the doctors. It has been a struggle to regain that trust though, since no one can really tell us anything. We had one nurse tell us on Saturday that of her dozen years at Children's, she has never seen pneumatosis in a heart baby, post-Glenn - and Henry was the first of two babies with this scenario this week. We have been reassured by the team that they do not believe it is due to decreasing heart function. Their reasoning behind this is that his echocardiogram on Monday showed no change, and his BNP number remained low. 

As far as Henry goes, he has not eaten since Monday night/Tuesday early morning, and is rather upset about it. He does appear to be more comfortable now that at this time last week. Even though he is hungry, the pain from his surgery and his vaccines seems to have gone down. We did also backtrack a step this week on his methadone wean to try and help him be comfortable. We started on antibiotics the morning we transferred back to the PICU. He will continue on the antibiotics and no feeds for a full week. Henry will have another ultrasound to check for pneumatosis on Monday. This was how it was originally found last week, as all of his abdominal X-rays have been negative. If the ultrasound is negative, and the echo on Tuesday looks OK, then we will resume feeds on Tuesday.

It's so incredibly hard to listen to Henry's hungry cries and not being able to do anything for him. Our hope is that this was truly an artifact of his G-tube surgery, and we can get back on track this week for homecoming in June.

Two steps forward and three back

I write this while holding my dear Henry on my chest. Overnight he continued to have blood in his stools and the ultrasound this morning confirmed air, a sign of pneumatosis. We are waiting on antibiotics and will be heading down to the PICU.

Please continue to keep us in your thoughts and prayers. This has been incredibly hard to deal with as all we wanted was for Henry to finally come home.

Patience

This long weekend has been an anxious one for us. Henry has been very uncomfortable since his G-tube surgery. He was irritable Saturday after having to wait over 37 hours between meals, and his first one was only a half of feed at that. He downed the first bottle we gave him as well as his second one. Once we got to full 100 ml feeds, he started to only take half, which was about what he had been doing before surgery.

On Sunday the doctors gave the okay to give Henry his four month vaccinations. Shortly before we gave them, he started becoming very upset. He was crying - screaming at times - and it took us a long time to console him. We gave him some oxycodone and he handled his shots very well. We left to visit family, only to come back to an upset baby.

We took turns holding Henry until midnight. He had had some blood in his diaper, which we were warned may happen since he did have stomach surgery. Doctors at night seemed okay with it, and ordered a KUB (abdominal X-ray) to clear out pneumotosis. He didn't have any more blood in his stools the rest of the night and most of Monday.

On Monday, Henry was finally moved back up to the transitional floor. This was the first time he has been out of the PICU since the first week of February. Shortly after arriving, he had another diaper with flecks of blood in it. We saw several doctors coming in and out and were asked lots of questions. We reiterated the fact that we were warned this would happen. We even specifically asked about the blood in the diapers he had last week during the Care Conference on Friday, and no one was concerned. The doctors for now have decided to "do nothing". 

We are anxious to be home but so worried about having a setback. In the four days from Friday through Monday, Henry has had abdominal surgery, gone a day and a half without eating, started getting food through a hole in is stomach, received four vaccines in his two little legs, and had his daily amount of methadone cut in half. We have tried hard to remind ourselves that this is enough to make anyone upset, and on top of it all, he's not even five months old - for all we know, he could be starting to cut teeth!! We are still hopeful to bring Henry home this weekend, but always  appreciate your continued thoughts and prayers. 

Picking Up Speed

Henry has had a pretty rough Friday, but we hope that the cause has brought us closer to home. Henry had a G-tube put in this morning. The surgery to place it took probably 20 minutes, but it has made for a long day. Henry's feeds stopped at 9pm last night, and they want him to wait 24 hours after the surgery before feeds resume. The hunger, combined with pain from the surgery itself has made him quite cranky - but who wouldn't be!

For us, making the decision to get a G-tube was quite a rollercoaster this past week. It came out of a conversation we had with the team from the recovery floor last weekend. We were surprised and frustrated to learn that the PICU team felt Henry was doing so well (good!) that he was ready to move upstairs (not good!) Based on our experiences back in January, we had a lot of concerns about Henry going up to a unit that was unfamiliar with him, and that we felt couldn't handle making decisions if his condition changed. At the time, Henry was only one day off of oxygen and less than one week off of his milrinone. The PICU might have felt he was stable, but Paige and I were still worried.

Our main frustration that we conveyed to the floor team was that if Henry is stable enough to go upstairs, why not just send us home? And if he wasn't ready to go home, what was keeping him here. We had a long conversation with them on Saturday, during which the question of a G-tube was raised. Paige and I had a deep conversation about this. We had known for a long time that a G-tube was a possibility. Obviously the ideal would be to not need it - for Henry to take his full feeds by mouth, along with all of his meds. Henry was still averaging a little under half of his feeds by bottle, and we had not even started trying to give him his meds orally. The hospital was willing to give him time to learn, but there's no telling how long it might take him. Selfishly, we worried about the stress of going to the floor for a few weeks, only to come back down to the PICU so he could get a G-tube installed. Ultimately, we decided that if feeding was the only thing keeping him here, we would get the G-tube so we could take him home. When the floor team returned on Sunday, they told us the only part of Henry's overall condition keeping him in the hospital was his feeding. The decision was made.

That is when our rollercoaster ride began. The climbs came as we realized we were getting one big step closer to home. Then there were a number of loops caused by issues in communication. First, we were told there would be a study done to make sure there was no constriction through his GI tract, caused by his earlier bouts with NEC. Then the second half of the study was going to be delayed, either because he hadn't passed all of the dye, or because of concerns about his bowels - or because he had gas. As the timing of the study kept changing, so did our surgery date - first, Friday; then, Thursday, and not until after Memorial Day if it was delayed; and finally, Friday. And then came the drop. When Paige called in to check on Henry Thursday morning, the nurse nonchalantly mentioned that he had several bloody diapers overnight. Apparently, she was too busy to call us, and none of the doctors were concerned. This brought Paige back up a day early, and she spent the whole day trying to figure out how many bloody diapers he actually had, if this truly was a concern or not, and whether this would have any impact on his surgery. By the end of the day Thursday, the answers were: unknown, apparently not, and no, the surgery was on for first thing Friday.

So now, Henry has his G-tube in, and we will resume his feeds in the morning. Over the next week - assuming all is well with Henry - we will learn how to feed him, give him his meds through, and care for the G-tube. We will also get any other training the staff feels we still need to care for him, and show that we can take care of him on our own. The hope now - still cautious, but more realistic than merely optimistic at this point - is that we will bring Henry home next weekend. The car is hurtling along now, with the station in sight!

Sunny Days

Henry has had a great week! He has been off of his milrinone since last Monday afternoon, and he is looking better than ever. His BNP is staying low, and his echos show some slight improvement. This is likely the positive effect we were hoping the digoxin to have once it got into his system.


Over the past week we have also begun weaning him from his methadone. The doctors had indicated that this might be a long process, but he is already down to one-third of the level he was getting. If he keeps acting well, we hope to have him off of it by next next weekend!

More than the heart meds, it is likely the weaning of the methadone that has had the best effect on Henry. Over the past week, it is like he has woken up again. He has much more time where he is awake and alert, looking at people and smiling and laughing. It has been so great to see him again!

We continue to work on his feeds, and he is still only taking about half of his feeds by bottle. We can tell he is getting hungrier, as he typically wakes up and starts crying about a half hour before a feed, but he just loses interest after a while. We also get the impression he is getting hungry, as he has figured out how to throw his thumb into his mouth!

 For the first time in his life, we were able to take Henry outside. We visited a little garden attached to the ICU this afternoon, which Henry loved - even if he slept through it! Given we were at though, we are excited with how far we have come, and we are hopeful that the remaining road home is growing shorter.

Happy 1st Mother's Day

Thank you, Paige, for being a kind, beautiful and strong mother for our son. Henry and I are so lucky to have you in our lives.

Happy Mother's Day!

Two Steps Forward...

Well, the two weeks since our last update have been long and eventful, with a few victories but also a few concerns and worries. Henry is still doing OK, and is probably a little further along than he was, overall.

In the plus column, Henry has been fully off of his IV sedative, the dexmedetomidine, since the end of April! There were some rough spells during that last week on dex, but he has adjusted well since then. He is also getting oxycodone for pain less often now. Today, we even began to wean him off of his methadone. This will be a long process - possibly taking months - but is something we can continue weaning him from after we return home.

Henry has also been tolerating his feeds quite well. He dipped to about 4.8 kg (10 lb 9 oz) right after his surgery, but since then is up to about 5.4 kg (11 lb  14 oz)! We continue to work on his oral feeds, as he is still reliant on the feeding tube. He is now consistently taking about 15 - 20 ml (1/2 - 1 oz) each feed, which is a nice start. When we restarted giving him bottles, it had been over six weeks since he had been allowed to eat, so this is not an unexpected challenge. He still knows what to do, we just have a ways to go to get him to take his full 95 ml (3+ oz) feeds every three hours.

[And, last Sunday, we completed the "Run for Little Hearts" 5k - Jason's first! Thanks to everyone who came out, ran virtually, or donated to help raise awareness of CHDs!]

But for each couple of steps forward, we have a small step back. Last weekend, a couple of nurses (who have never had Henry before) were worried about his breathing. When we showed up last Saturday, Henry had on a nasal cannula. The doctors didn't seem concerned, saying they would keep an eye on him, and took Henry off oxygen the next day. Wednesday night, Henry had more problems with his breathing and his O2 levels were dropping. So, Henry went back on oxygen and is still wearing the cannula. He has been put on sildenafil to help promote the flow of oxygen in his lungs. If that helps through the weekend, we hope to come off of the oxygen on Monday. We're not really sure why his oxygen levels have been low at times. This could still be his body adapting to the new physiology after his Glenn. It could be that he does have a little bit of a "floppy airway" - he does breath a little squeekly at times - and sounds like his father when he sleeps! It could also be his heart.

There is still concern on his heart function. It currently isn't that great, even for a baby with hypoplastic left heart syndrome. Our primary cardiologist went over several of his echos with us, going all the way back to January. It helped us to see that the muscle squeeze is just not as vigorous as it has been in the past. Only time will tell if this function will improve. Some kids with similar function concerns need to be on ventilators, others are running around at home, and right now Henry is somewhere in between. The doctors have added a new medicine (digoxin) to help with the squeeze of his heart, but it takes about two weeks to see its effectiveness. The plus side is his BNP number (an indicator of heart failure) has been stable and very low the last few times it's been checked. We will be getting our weekly echo on Sunday, and will make a decision Monday on whether or not he is ready to come off of the milrinone.

The road goes ever onward, and we keep moving down it. Slow and steady is still progressing. If this oxygen issue is just a small blip, then we are still looking toward a June homecoming.