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.