I hope you all enjoyed the holidays!! We certainly have much to be thankful for this season. Baby Jackson is doing well these days. I want to update you all on his health progress these past two weeks, along with the news from his latest cardiologist appointment (below).
After being released from the hospital, we went ahead and established a relationship with a local pediatrician here in town, so that Jackson can continue with his regular check-ups while we’re in San Antonio. We were lucky enough to find one that we really like – Dr. Linda Parsi – who has seen Jackson on a weekly basis since Jackson was discharged from the hospital on the 19th. On our first visit, she told us that Jackson looks very healthy. Her only concern was that his weight was a little behind for his age. This was not a surprise, though, considering all the setbacks he’s had since he was born. Between the heart surgery and his Lasix medication, Jackson was barely back at his birth weight at one month old (most babies return to their birth weight at two weeks). However, Jackson is a very good eater, and she is confident that he’ll catch up to his expected weight by supplementing his breast milk with a little formula. So for the past two weeks, we’ve been adding about a teaspoon of formula for every two ounces of breast milk, for 50% of his feedings. This increase in calories has helped a lot, and Jackson has already gained 1 pound, 5 ounces since he was discharged from the hospital in December. I can tell he’s gaining more weight each week, without having to put him on the scale – his little cheeks are rounder, and he’s started to grow out of his newborn clothing!! This is one of the things I worried about the most since his surgery, so I’m very pleased with the way he’s been growing these days.
Jackson had his first follow-up appointment with our cardiologist the Monday after being discharged from the hospital. Dr. Londono was pleased with the way Jackson’s heart was responding to the Lasix medicine. She noted that the left side of the heart looked better in size, compared to when we checked him into the hospital the week before. However, Jackson’s hemoglobin levels were a little low that day, and the doctor wanted to go ahead and do a blood transfusion to boost his blood count. Normal babies typically take a dip in their hemoglobin levels around two months, so the blood transfusion was more preventative than anything at that point. We ended up checking into the hospital that same day and spending the night together in the pediatric surgery ward. For some reason, that night was tougher than any night we’d spent in the hospital – neither Jackson nor I slept very much at all. I think it’s because with a blood transfusion there is more nurse interaction, and every 15 minutes or so there was a nurse poking or prodding at him, which kept us both from falling into a deep sleep. Luckily, things went well with the transfusion, and we were discharged from the hospital at about 11:00 the next morning.
We had our second cardiologist follow-up appointment this morning, to see how Jackson’s heart has progressed after being on the Lasix medicine for a couple of weeks. The good news is the coarctation repair still looks good (this is what was fixed during his first surgery). However, after doing a heart scan, Dr. Londono told us that there is still significant mitral stenosis, meaning she still sees a problem with his left mitral valve. She is encouraged, though, that the right side of the heart is still functioning correctly. That means that even though the left mitral valve is not working like it should, the strain is not causing too much pressure buildup on the right side of the heart. The fact that Jackson’s vital signs look good, and because there’s not too much pressure in the right side of his heart mean that we have time to consult the group of cardiologists to decide what we’ll do next to fix the valve.
The first thing Dr. Londono would like to address is the papillary muscle that opens up the mitral valve. There are tiny threads – similar to the threads that attach to a parachute – that attach the papillary muscles to the mitral valve. Normally, these threads are very small and thin. However, on Jackson, the threads are thick, more like a small muscle. And because they are so big, they sort of prevent the mitral valve from opening properly. The doctor thinks we can go in and fix this problem with a catheter balloon, which we will likely take care of in the next couple of months. Depending on how well this works, it may buy us more time before we have to go in to surgically fix or replace the mitral valve.
We do not have a definite timeline at this point – it’s all kind of touch and go for now. However, the good news is Jackson is very stable and is gaining weight. As long as his vitals are steady, we are hoping to wait until his second birthday before he has to undergo heart surgery again.
Aside from Jackson’s medical updates, we’ve moved since the last time I updated everyone here. The week of Christmas, we decided it would be best to move into an extended stay hotel. The Ronald McDonald House is an excellent facility, and we really enjoyed our time there, but I think it is best suited for families with school-aged children. I’m breast-feeding and mixing formula into bottles, and this became difficult with a shared kitchen and limited counter space in our room. Aside from that, there are many families who are on a waiting list to get a room at RMH, and we wanted to give those families an opportunity to stay there, as well. So, the day after Christmas, we packed up and moved into an extended stay hotel close to the hospital. After the move I realized – we have slept in 7 different places with Jackson since he was born (that’s counting the three times we were checked into the hospital)!! To think, I used to be scared of how I would manage grocery trips with a baby this small!!
Also, Jose returned to Midland to go back to work the Monday after we were released from the hospital. My dad was kind enough to offer to come and help out while Jose is gone – and he’s been a tremendous help with everything from changing diapers to grocery shopping. I don’t know what I’d do without him here!! Jose works a schedule of 10 days on, 4 days off, so every other weekend he’s able to travel to San Antonio to be with us. With such a young baby, this is a little hard on both of us – Jackson is at the age where he’s progressing so much in just a few days. But we know it’s best for our family right now, and thank goodness for FaceTime – we talk on video at least once a day, so he’s able to see his son and get updates on his progress. 😉 The pictures below were taken last weekend during his visit.
I want to thank everyone who’s reading this update, and for all the kind support we’ve received during this “waiting” period. I’ve come to learn that it’s sometimes more difficult during the downtime, especially when we don’t know what Jackson’s timeline of care will be like at this point. Jose and I are so very appreciate of everyone’s encouragement these days!! We will certainly keep you all updated as we learn more news in the coming weeks.
A couple more things I wanted to mention…
I post little updates on Jackson, almost daily, on my Instagram account if you want to follow me there (although I’m warning you – it is a constant feed of baby Jackson’s sweet face!!). I also just re-opened a Facebook account last week, for those of you who are not on Instagram. Hopefully I’ll be able to connect with everyone who’s reading between those two sites!! Also, I know some people have sent us mail to the Ronald McDonald House in the past weeks. Even though we have recently moved, the RMH staff have been kind enough to call me each time we’ve received mail there. So please don’t worry if you recently sent something to that address!! I will definitely still get the mail from them, if I haven’t already. We also just opened a local PO Box here in San Antonio, so if you would like that address please feel free to text me or Jose (or send us a Facebook message).
With love, xoxo – Jose & Amanda