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Kevin was discharged from the hospital on Wednesday Nov 29 and is happy to be home. He came home on antibiotics, breathing treatments, and steroids - but most of those he will end by the weekend. He is almost back to his normal self, crawling around, getting into things, babbling up a storm, and generally being happy.

One difference is that the steroids are seeming to make him really hungry! We’ve never seen this kid each so much in his life. He cries for his bottle and even eats lots of his baby food. Hopefully this will put some weight back on him. It feels like he’s already gained a bunch back, which is good. He sees his doctor for a follow-up visit on Monday Jan 4, so we’ll find out then how much he weighs.

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In The Hospital

Almost two weeks ago, Kevin caught the stomach virus that is going around everywhere and ended up in the hospital overnight so they could watch for dehydration. He did fine and was released the next day (this was before thanksgiving). We thought we were done with sickness once he started feeling better, but just as that was ending he caught a respiratory bug that has been going around also. They put him on breathing treatments and eventually antibiotics, but he just didn’t seem to be getting better. Finally Dawn thought he just didn’t look right and brought him into the doctor for the 4th time in a week, and it turns out that he had developed pneumonia!

So, he ended up in the hospital once again on monday. This is his second night there and he is improving with the help of IV fluids, breathing treatments, and steroids. His oxygen saturation levels were low last night, so he also had a little oxygen to help him (so he needed those patches on his face to hold it). We thought he would get by without it tonight, but they ended up giving him some more tonight just to keep his sats up.

He seems to be getting better, but it’s slow. He was really listless and not himself earlier, but his attitude has come back a bit today and he is not happy in the hospital crib. He wants to crawl and play, but of course he can’t with his IV in and being in the hospital room. He hates the board they taped his IV hand to and is constantly wanting to pull his line out, grab at the equipment, shake the crib bars, etc. He stares at each nurse who comes in to do something, refusing to smile or laugh no matter how hard they try to make him. He looks so serious and untrusting of everyone, but then watches around the corner as they leave the room and turns to us and smiles. Dawn is staying with him, and of course doing a fantastic job taking care of him.

Going to the hospital isn’t fun for any parent, and it makes us especially nervous because we don’t want anything more serious to come of it. But we take comfort in the fact that he’s at Genesis rather than Iowa City, so it’s not that bad. He also seems to be getting better slowly and responding to the treatment, so he should be fine.

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Thanksgiving

Thanksgiving will always be an emotional time for us. It was this time last year that we were in the midst of Kevin’s medical crisis.

Matt and I came home from the Hospital last Thanksgiving for a short visit. I remember telling myself not to go into the room that we had made into Kevin’s nursery but I could not stop myself. I sat in the chair in his room and just sobbed for the baby boy that I thought I would never be able to bring home.

Later that day we went back to the hospital and spent more time with Kevin, reading books and singing to him. It was so difficult to watch my tiny baby boy fighting so hard and knowing that we were running out of options. The next day we knew we were going to have to make some serious decisions regarding Kevin’s care. I will never forget when Dr. Burkhart, Kevin’s surgeon, came into our room. He had a pink sheet off paper in his hand, which I knew was a consent form.

It was at that moment I knew they had a plan. Even though no one was certain whether or not another heart repair would help Kevin, something inside me knew this was our only hope. I will always be grateful to Dr. Burkhart for everything he did for Kevin.

The next day our very sick little boy went to surgery. Before he went I had a moment alone with him. I felt that I needed to tell him that if he was tired and needed to leave us it was ok, but if he could, I really needed him to keep fighting. I told him how much we all loved him and wanted him to come home. I had hope that everything was going to be ok, but it was hard to let myself think that way.

Kevin’s nurse that day was Bob. For those of you who met Bob, you know how great he is. He came in after we had been waiting for what seemed like an eternity and told us that Kevin was stable and not on ECMO (heart bypass). This was huge for Kevin, and honestly it took me a moment to process what he was saying. I made him repeat it, just so I knew I was hearing him correctly.

A few hours later Kevin was brought back into intensive care, and I was not prepared for what I saw. Kevin did not look real to me - he had tubes everywhere and his chest was still open. It didn’t matter though. I went over to him and kissed his forehead and told him I was so proud of him for being so strong.

This Thanksgiving is so different. I am so thankful that we have Kevin with us and his health is stable. He is a beautiful child inside and out and he brings true happiness and joy to our lives. I hope all of you had a great Thanksgiving.

Matt made a video for Kevin showing pictures of him over the past year. The link is in the menu bar on the left, we hope you enjoy it!

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Happy Birthday!

Kevin turned one today! It’s hard to believe that it has been a year since we arrived in Iowa City, expecting a short stay for a pacemaker installation and instead getting a 6-week stay with lots of complications. It’s amazing to be where we are today, with a little boy who is healthy, growing, and doing well. We still take one day at a time, but we feel so lucky and blessed to have him with us. Although his health is still on our minds on a daily basis, we have been able to truly enjoy him as any parent would their child. Last year around this time, the thought of us living a normal daily life with a healthy and energetic 1-year-old seemed so foreign and impossible. To be here just feels so, so good.

A lot has happened since the last entry (due to our busy schedule and procrastination in updating this site). Kevin is now over 18 1/2 pounds, which is getting bigger but still hanging down around the 5th percentile for weight. He’s small and thin, but not oddly so by any means. He just seems like a smaller boy who could stand to gain a couple pounds. We would like to see him gain more weight than he is, but so far the doctors haven’t expressed much concern or mentioned anything drastic that we need to do to try to get him to gain weight. So I think he’s fine where he is. He still takes 3 different medicines twice a day and fights it every time. When he sees the syringes he shakes his head “no” and makes noises at us, so he definitely knows what they are and that he doesn’t like them.

He has become an expert in crawling and can dart into the most dangerous of places in a split second. He loves to crawl down the hallway and into the bathroom, where he gets into trouble for unrolling the toilet paper and opening the drawers. Unlike Emily, Kevin is quite the trouble maker. He is fascinated with outlets, cables, wires, drawers, cabinets, our carbon monoxide tester, etc. He listens when we tell him no, but he’ll often give us a grunt and go right back to doing it. Correcting him and moving him away from something doesn’t do much good, because he just bull-dozes right back to where he was as if we didn’t even matter. We like to call him Godzilla because he’ll just put his head down and plow through anything to get to something he wants to destroy.

He isn’t walking yet, but he pulls up on 2 feet on his own and lets go with one hand. He scoots along the couch at a slow pace, often in an attempt to grab Emily’s Gameboy. He loves the gameboy! He has three teeth now, all on the bottom. It gives him a cute little grin. His hair is getting pretty long also, and he may be in need of a haircut before too long. His hair is wispy and he’s got some cowlicks, so we call him Trump Hair because he looks like Donald Trump sometimes. He kind of says mama but it’s usually included along with some babble. He loves to scream and make lots of noise, so the concern over his vocal cords is really gone for us now.

Eating is still the #1 challenge for us. The boy just doesn’t like to eat. He welcomes his bottle most of the time and has been holding it himself for quite a while, but he seems to hate eating solid foods. He does alright, but doesn’t eat nearly as much as most kids his age. We still need to sing him songs and distract him while he eats, and he sometimes cries out of frustration. He’ll hit the spoon like it’s his enemy, and do his best to knock the food jars and bottle off his highchair. He has such determination when he’s trying to knock food away, we have to at least give him some credit for that. He tends to gag on solid food like goldfish and crackers, and every so often he’ll do it enough that he pukes up his food. No fun. So feeding is probably our most stressful problem that remains. And if that’s the worst thing we have, we can’t complain!

He sleeps pretty well for us, going to bed about 6:30 or 7:00 and sometimes needing a bottle at night and sometimes just waking up hungry at 6:00. We don’t want to make him not eat in the night, just because he can always use the extra calories. Especially now that he’s so active! He hates to take naps and refuses to sleep in his crib during the day. Dawn has tried letting him cry it out, but it makes us nervous to have him cry for so long and get worked up since we aren’t sure if that’s okay with his heart. We will ask the doctors next time. It’s hard enough as it is to let your child cry it out, but it’s even harder when you worry that his heart can’t handle it. He goes to bed at night okay and has no problems sleeping in his crib. He sure fights going to sleep during the day, though - even if we are holding him. He will move around and grunt and wave his arms, all in an attempt to stay awake. He’s got quite the attitude!

Our next doctor visit is his 1-year checkup with the pediatrician on thursday nov 9th. We expect everything to go fine. Then next monday the 13th we visit Iowa City for a pacemaker check and sedated echo, where they will do a detailed followup look at how everything is going. It’s always hard to go back. Although we know his congenital heart disease is there and always will be, he’s living such a “normal” life that we can almost forget all of that for a while. But then the Iowa City visits come up and we’re snapped back into reality and worry that they will tell us bad news. We always stay positive, but the fear or being blindsided by terrible news is still there, having faced exactly that a few times before. So we kind of dread making that visit, even though we really think things are going very well.

We made more blankets again this year to take up to the PICU when we visit. Dawn also got one of her favorite blanket-making companies to donate a few blankets, so we have a total of 18 to bring to them. The quilt-making day was a long one - 5 hours - but there was Matt, Dawn, Kristel, Brent, Joanna, Jeni, and Joanna’s friend Julie there to help us so it was fun. It’s something we can do every year as a way to give back to the hospital when we visit to say hi. We went to the Heart Friends picnic several months ago, which is a gathering of people with children who have gone through heart problems, and some of the doctors were there and remembered Kevin. One said that his picture is up in their break room, so he has not been forgotten We think of the team of doctors and nurses often, and how much they did for Kevin and us. They are an amazing group of people.

So, one year down and many more decades to go. All is well and Kevin is doing great, and we are having a great time with him. As I’ve done with Emily every year, I made a video of Kevin’s first year. I plan to put it online somehow so if anyone wants to watch it they can. Thank you all for continuing to care about Kevin and his progress!

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