Here we go – surgery, again.

Here we go - surgery, again // Our Baby Jackson Bedingfield_1

(Jackson, eight weeks old)

Hello there. Just wanted to share some news on Jackson this week.

In my previous post, I talked about our last cardiology visit with Dr. Londono in San Antonio. At that appointment, the doctor raised some concern regarding the condition of Jackson’s left mitral valve. Jackson’s heart scans indicated that the problems associated with his valve are continuing to cause extra pressure and constraint on the right side of his heart. Dr. Londono consulted with the group of cardiologists and surgeons at Methodist Hospital to see what next steps we will take to fix these issues. A mitral valve repair surgery is not particularly common for babies Jackson’s age, and while Methodist Hospital in San Antonio has taken care of mitral valve repairs in the past, it is not necessarily a routine procedure that the surgeons see on a regular basis. There are essentially three programs in the United States that specialize in this type of heart repair in babies, and Texas Children’s Hospital in Houston is one of them. Dr. Londono consulted with Dr. Charles Fraser, a surgeon at TCH who specializes in this type of surgery (you can read his bio here). Dr. Fraser agreed to take on Jackson’s case and perform whatever surgery will be necessary to fix the valve. That being said, Jose and I have made the decision to proceed with Jackson’s care at TCH in Houston. While Jackson is not necessarily in critical condition at this point, both doctors believe that waiting any longer may potentially cause severe damage to his heart.

We have known for a couple of weeks that we’d be headed to Houston soon. A little over a week ago, we spoke with the surgery consultant at TCH who asked that we bring Jackson in for some preliminary appointments this past week. She scheduled an appointment at the cardiology outpatient clinic this past Monday, and then another appointment for us to meet with Dr. Fraser yesterday (Friday) to discuss details about the surgery. So last Sunday, my dad and I packed up the hotel room in San Antonio, and we drove Jackson to Houston to be ready for his appointments this week. On Monday at the cardiology clinic, they did some routine procedures, including a new echo scan, X-rays, and blood pressure tests. We then spoke with the cardiologist, Dr. Liou, who will be Jackson’s dedicated cardiologist while here at TCH. We talked to her about Jackson’s condition, and she seems to be in agreement that we need to proceed with the mitral valve repair as soon as possible.

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(The view of downtown Houston from TCH cardiology clinic)

Jose had this weekend off, and was able to drive to Houston on Wednesday in time for our appointment with the surgeon, Dr. Fraser, yesterday. He was very honest with us, and explained that Jackson’s condition is a serious one that needs to be addressed quickly. He told us that the left mitral valve is putting a lot of pressure on Jackson’s heart, lungs, and associated vessels, and that it needs to be surgically repaired as soon as possible.

Based on the imaging he has seen, Dr. Fraser hopes to be able to repair the valve, and also get rid of the small tissue that’s obstructing the valve. The repair will not make Jackson’s mitral valve perfect, but simply “good enough” for the pressures to alleviate, relieving the risk of damage to the associated vessels and lungs. A mitral valve repair will be the “best case scenario” for this surgery. In this case, Jackson’s repaired valve will be able to grow with him over the years, and hopefully even improve a bit as his heart grows and develops.

Of course, it is difficult for Dr. Fraser to know exactly what the problem inside of the heart looks like until he is able to see it with his own eyes. Also, a mitral valve repair is very difficult. The doctor must be able to balance the repair so that there is just enough pressure left on each side of the valve. If, during the surgery, Dr. Fraser realizes that it is impossible to fix the valve, then he will need to replace the valve completely with a mechanical valve. This is not really ideal at Jackson’s age, since there is essentially just one type of mechanical valve that will fit in his tiny heart. Also, a mechanical valve will not grow as Jackson’s heart grows, so this means that we will need to do multiple heart surgeries over his lifetime to change out the size of the valve. A mechanical valve also means that Jackson will need to be on blood thinner medication for the first several years of his life to accommodate appropriate pressures inside the heart. Again, this is not the ideal situation, but it is a big possibility, so we must be prepared for this to happen as well.

Like I mentioned before, Dr. Fraser does not want to wait any longer than necessary to proceed with the repair. That being said, the surgery is scheduled for this coming Tuesday, February 3rd. Dr. Fraser went ahead and ordered blood work yesterday, to make sure that Jackson does not have any infections that will interfere with the anesthesia. If you follow me on Facebook or Instagram, you may have seen my post that Jackson contracted Rhinovirus last week (a very small virus that is common in children his age). However, if the virus is still present in his system, they will need to postpone the surgery for another week or so.

I mentioned this before, but it will be open-heart bypass surgery this time (meaning they will stop Jackson’s heart and connect him to a heart-lung bypass machine, which will circulate his blood throughout the body during surgery). The surgery will last for at least 5 – 6 hours, or possibly longer, depending on any complications or extra steps they may encounter during the procedure. The plan is for us to check Jackson into the hospital early Tuesday morning, and they will start prepping him for surgery around 6am. We will learn by tomorrow whether or not the virus scans came back negative. If so, the surgery is set for Tuesday, and we will begin by taking Jackson in to meet with anesthesiology on Monday morning.

While everything depends on how well Jackson responds to the surgery, we can tentatively expect for him to be in recovery at the hospital for 2 to 3 weeks. After that, we will need to stay in Houston for at least 2 or 3 more weeks after that for follow-ups with the doctors at TCH. The good news is that Jose’s sisters both live in Houston, and we can stay at one of their houses until we’re ready to go back home after Jackson has fully recovered.

During our meeting with Dr. Fraser yesterday, Jose and I asked about statistics associated with the mitral valve repair (such as, what is the likelihood of success with this surgery?). Unfortunately, Jackson’s case is so rare that they only see 2 or 3 similar cases at TCH each year (this says a lot about the rarity of his condition – TCH is one of the leading heart programs in the country, and patients travel from all over the U.S. to receive heart care here). The sample size is so small that it is impossible to assign a statistic with the outcome. However, Dr. Fraser said that he is confident this procedure will improve the condition of Jackson’s heart, which is all we can hope for.

Truthfully, it has been a very difficult few weeks for me. Even though Jackson has been through heart surgery before, it was a lot harder for me to emotionally prepare this time around. Mostly because I know this is a much more complex surgery than what he had in November – it is scary for me to think that Jackson will undergo bypass surgery at such a small age. Also, no one is certain of the outcome at this point. We won’t know for sure which path we will take (mitral valve repair or replacement) until they are in the surgery room with him on Tuesday.

I knew the day would come when Jackson would need to go through heart surgery again, but it makes me sad to think that this day has come so soon. I’m finding it hard to gather the strength to put on a brave face this time. I feel as though I’ve used up all my energy since his last surgery two months ago, and I wonder how we are going to be able to do it all over again. But, now is the time for me to put all my faith in the Lord. I pray that He will give me the courage to stay strong for baby Jackson throughout the whole ordeal. I pray that He will be present with Dr. Fraser to make the right decision for our baby in the operating room. And most of all, I pray that He will comfort sweet Jackson the day of the surgery, and bring peace to him in the coming weeks as he faces recovery.

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(My dad, and his little JB)

Here we go - surgery, again // Our Baby Jackson Bedingfield_4

(Jose’s Dad cooked the most delicious lunch for us this week)

On a different note, thank you so much to everyone who continues to send your love and prayers these days. Jose and I are especially grateful for the help we’ve received from our family during this time. My dad has stayed with me for the past six weeks, as Jose travels back and forth from Midland to work. I personally don’t know what I would do without him to help me through all the doctors and hospital visits (we’ve had up to 4 doctors appointments each week, and two hospital visits since he arrived in December). He has also helped tremendously with midnight feedings, diaper changes, bath time – you name it, he’s done it. I would not have been able to manage all of it by myself. I will forever be grateful for the time we’ve spent together this past month and a half. Also, we are truly thankful for Jose’s sister, Cristina, who has opened her home up to us this past week, and has offered to do so as long as we are here in Houston. Ani, who is working abroad in Singapore for the next several months, has offered up her home for our dogs to stay at until Jackson recovers and is back home (Blanca and Canela have been staying between her house and Cristina’s house since we checked into Methodist Hospital on December 13th). Jose’s dad primarily takes care of our pups, and we don’t know what we would do without his help. Thank you so much – we love you all more than words can describe.

xo, Jose & Amanda

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Updates for the New Year

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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).

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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.

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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