Finally home in San Antonio.

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{Jackson before his pediatrician appointment last week}

Hello!! I’m so sorry for my absence online lately. I’ve been writing this really detailed post on what’s been going on here for a week now, so today I just decided to scratch it all and do my best to give a quick summary* to let everyone know how we’re doing these days.

*After proof reading this post, I realized it’s totally not what you would call a “quick summary”. I actually got a little long-winded here so please proceed with caution, and maybe an extra cup of coffee. 😉

It’s been 5 weeks already since Jackson’s surgery. He recovered very quickly and was released from the hospital just six days after surgery!! I’m still amazed at how fast he bounced back. His surgery was on a Tuesday, and by the weekend his vital signs were excellent, and he was back to eating like normal again. There were no complications in the days following his surgery, which we are so very thankful for. The doctors requested that we stay close in Houston for several weeks in order to come back for some out-patient appointments, but they told us on Sunday there was no need for us to stay overnight in the hospital any longer.

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{photos from the hospital, post-surgery}

Jose had to drive back to Midland to return to work on Sunday, and my Dad had flown back to Tennessee the week of Jackson’s surgery. So on Monday when Jackson was discharged from the hospital, he and I went back to stay at my sister-in-law’s house in Sugar Land, where we would stay for the remainder of our time in Houston for follow-up appointments.

I’m not going to lie, these next few weeks at home were probably some of the toughest I’ve experienced in motherhood to date (and I feel like we’ve had our fair share of difficult weeks). The first week was tough because of the care and attention he needed after surgery. Jackson was released from the hospital on about five different medications a day (just one heart medicine, but also medicine for pain, reflux, and gas). He also started acting like a brand new baby. This is a good thing – his fixed heart meant he had a new appetite, new energy levels, and new sleep schedule. But, all of this I had to navigate on my own, which was really really tough for me. So, it was that same week I decided to switch him from breast milk to formula. We’d been giving him bottles of breast milk supplemented with formula since before Christmas, to help with weight gain, but pumping at each feeding was getting to be too much, emotionally. It was a really difficult decision, but I knew at that point it was the right decision in order to keep my own sanity.

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{Jackson had a major increase in appetite the week after surgery}

So two weeks after his surgery I started weaning him off of breast milk, and increasing the amount of formula in each bottle. I thought he would do well with the formula, since we’d been mixing in formula with his breast milk for so many weeks without any problems. But after just a couple of days, he starting having a lot of trouble with his feedings. I could tell he was hungry, but it was a struggle to get him to keep down anything. At first I thought he was reacting negatively to the increase in formula, so I went back to just the supplemented breast milk, thinking this would solve the problem. But the problem persisted. So finally that Friday, I called the nurse practitioner at TCH to ask what we should do. Since we don’t have a pediatrician in Houston, the only thing we could do that day was take him in to the emergency room. That way the cardiologist on-call could come down and take a look at him.

Luckily, the problem had nothing to do with his heart – his vital signs and blood pressure all still looked good. So the doctors determined it was severe acid reflux, and they increased his current reflux medicine and also prescribed him a stronger medicine to take as well. Unfortunately, the new medicine had to be specially compounded (not really sure what this means, but basically it took a couple of days for the pharmacy to have the medicine ready). And then the medicine took another 3 to 4 days to take effect. So we struggled with his feedings for another week, but luckily, after that, his feedings became a lot easier – for both us. 😉

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{Smiling and giggling the morning after our visit to the ER}

By the time Jackson’s reflux got better, it was time for us to (finally!!) move to San Antonio!! We announced in February that Jose’s work approved a transfer to San Antonio, so that we can be closer to the team of cardiologists that have taken care of Jackson since he was born. After the approval went through, the moving company had to get in touch with us to coordinate a moving date, and they were able to move our stuff to San Antonio on Monday, February 23rd. Luckily we found a house to rent before Jackson’s surgery (we requested the move in December, after his first surgery, so we knew we’d be moving to San Antonio, but didn’t have a date finalized until February). We decided it would be easiest for Jose to coordinate the movers, and then spend a couple of days in the new house organizing. That way things would be somewhat settled before Jackson and I made the move down from Houston.

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{Ready for our trip home to San Antonio}

So finally… on Wednesday, February 25th – after living out of a suitcase since December – Jackson and I headed home to San Antonio. I sort of had a feeling when we left Midland on December 13th that I would never be back, and I was right. It is still a little sad to think about. We bought our first home in Midland, our first child was born at the hospital there, and we will never go back. But… we know this was the best decision for our family. I feel so much better knowing that if anything were to happen to Jackson, there is excellent care waiting at the hospital just down the street. That emergency flight we took when Jackson was 3 days old was the scariest thing I’ve ever had to live through, and I hope to never have to go through that again.

Since then, we’ve been busy unpacking boxes, sorting out bills, and spending quality time as a family of five (that includes our two dog-daughters, of course). 😉 Moving is always stressful – I realized this is the sixth time we’ve moved since we’ve been married (not counting the extended stay hotels and company apartments we’ve lived in, for months at a time!). But, no matter how many times we do it, the unpacking is still the worst. I know it will take some time before we’re finally “settled”, but we’re finally at a place this week where I feel like things are looking up. These past few months have taken a toll on us all, and I can finally feel my shoulders relaxing again.

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{Jackson’s older sisters, Blanca and Canela, becoming acquainted with their new backyard}

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{New bouncy chair}

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{Hanging out with his older sisters}

Thank you so much to everyone who has messaged and texted me these past weeks to check on Jackson. He is doing really well, thank God, and we’re just happy to all be back together again so we can enjoy this happy, growing baby. He has been progressing so much these past few weeks – he’s started laughing and giggling, which of course makes my heart melt. He’s starting to sit up a lot more – we bought him this Bumbo chair that’s helped a lot. Because of his surgery, we still have to scoop him up from behind, and still no tummy time until next week, not until his sternum is completely healed. So he hasn’t really had the chance to practice rolling over yet, but I know that he’ll catch up in no time. 🙂

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{Jackson and his Papi}

With all that we’ve been going through lately, springtime definitely took me by surprise this past week. Between the time change and beautiful weather here in Texas, I can definitely feel a change in the air. Same thing with our little family – we’re feeling just a little bit lighter these days, fresh and ready to move forward. It has been a long, cold journey these past months, but I feel like that season in our life has finally passed, and we’re ready to start anew.

With love, xo – Jose & Amanda

Out of surgery, now ready for recovery.

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I hope many of you heard by now that Jackson’s surgery yesterday was a success!! Just to follow-up on my Instagram and Facebook updates yesterday, here are some more details about the surgery – what Dr. Fraser found, and how he was able to fix the problem.

So the surgery itself was fairly quick (relatively, of course). The first three hours or so were spent on anesthesia, hooking him up to his IVs, and opening up the chest and starting him on bypass. Once the doctor determined he was stable on the bypass machine, he started to look around at the problem surrounding the mitral valve. What he found was something he’d never seen throughout his career – which says a lot (Dr. Fraser told us he’s been present for more than 15,000 cardiac surgeries during his time as a surgeon).

Basically, the little tissue that the doctors found during his catheter scan in December turned out to be an extra valve situated on top of his normal valve. Dr. Fraser was certain that this is what’s causing the imbalance of pressures throughout his lungs and right side of the heart. After removing this extra tissue, he “tested” the heart to see how his original valve would work on its own, and miraculously, the valve is now practically perfect!!

This is the absolute best news we could have received yesterday. Dr. Fraser himself called it a “miracle”. Like I said Friday, repairing a baby’s valve is very delicate work, and to not have to make any alterations to Jackson’s original valve itself is ideal. We were so afraid that the doctor would not be able to make the repair, and that he’d have to resort to replacing the valve with a mechanical one. But by  removing the tissue, and leaving his valve nearly untouched, we are extremely hopeful that Jackson’s heart will be able to grow and develop without any major problems in the future.

There was also one more thing the doctor addressed during the surgery, which I haven’t actually talked about here before. When Jackson was released from the hospital back in November, after his first surgery, the doctors discovered a tiny hole in his heart, called a VSD, or a ventricular septal defect. The hole was very tiny, and the doctors told us that unless they eventually did open heart surgery, it was not really necessary to open his heart just to fix the VSD. Basically, it was the least of our worries at the time, and it would be something they could monitor over time. But since he did end up having open-heart surgery, Dr. Fraser was able to go ahead and fix up the hole yesterday. He was able to just stitch it together – rather than having to use a patch – which is preferable. So that’s good news, as well – one less thing to worry about!

Jose and I are are just overjoyed with the news. We hope that this will be the final step in his journey to having a more healthy heart and “normal” childhood (one that’s spent out of the hospital!). Of course, he’ll need to stay closely monitored by a team of cardiologists throughout his childhood, but we think this surgery has fixed the major problem that he was born with. While Jose and I were both scared that the surgery took place this young, we’re now relieved that everything went well and even better than planned. Also, by doing it this young, we’re not worried that he’ll remember any of this, and he (hopefully!) won’t have any bad memories associated with doctors or hospitals. 😉

So now that the surgery is over with, we’re focused on Jackson’s recovery. It will be a long recovery (compared to his last surgery) so we’re just taking it day by day and hoping for little improvements along the way. Jackson is still on a breathing tube and line to his heart this morning. Among all the lines, IVs, and tubes that are monitoring his progress, these are the two things we want taken out first. Our goal is to take them both out today, which will make him more comfortable.

Jackson is still pretty sedated, but has been waking up some since early this morning and is agitated with all the things that are poking him right now (which is understandable!). The doctors don’t want him moving too much, so his little hands are restrained to the bed. It’s a little hard to see my baby this way, but I know that these things are temporary and he’ll be out of the ICU soon.

Thank you so much for everyone who sent up prayers for baby Jackson yesterday. We know the Lord had a hand in the surgery room yesterday, and we’re certain He will continue to comfort this sweet child as he goes through recovery these next few weeks.

We’ll continue to write little updates on my Instagram and Facebook, and I’ll post again here in another day or two to keep you all informed!!

Much love – xo, Jose & Amanda

Here we go – surgery, again.

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(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)

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(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

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

Out of the hospital.. but still in limbo.

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Hello!!

Just wanted to let you all know that we’ve been discharged from the hospital this afternoon! So we are still not sure of what the doctors will do in order to fix Jackson’s left mitral valve. But he is doing well enough they decided he can leave the hospital while they’re still debating and making the decision. Let me back up a little to explain what has happened since yesterday morning…

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As I mentioned Tuesday, the doctors met yesterday to debate on the best possible solution for Jackson’s condition at this time. They came by his bedside yesterday and took a 3D echocardiogram in hopes of getting a better picture of what’s going on around the left mitral valve. After reviewing the 3D images, the doctors decided that it is difficult to pinpoint the exact cause of increased pressure around the valve. However, they have identified the main problem areas, which I’ve mentioned here before. These include the extra tissue resting above the mitral valve, and also the papillary muscles that work to open the valve. Because Jackson is still so small, they believe it would be difficult and a bit complicated to try and surgically fix these issues now.

The good news is, Jackson has been doing very well this week. The doctors started him on a medication called Lasix on Wednesday to help flush out any extra fluid that may be building up and contributing to the high pressure in his heart and lungs. The medicine has really helped out with his breathing levels since then, which is a good sign. Because he has reacted well to the medicine, and because he’s not been on any sort of oxygen or IVs of any sort this week, the doctors believe that Jackson is able to maintain steady levels on his own outside of the hospital. They decided to discharge him this afternoon, so long as they can keep a close eye on him these coming weeks with follow-up appointments.

So, as far as surgery goes.. if Jackson continues to do well on the Lasix, the doctors would like to see him grow bigger before they go in to surgically fix the problems with the mitral valve. We’re not sure if that will be in a few weeks, a few months, or even years. It is something we will just have to continue to monitor, starting with weekly cardiologist appointments here in San Antonio. We are hopeful that Jackson can maintain the levels he’s at right now, so that when they do decide to perform surgery, he will be old enough and big enough to fix the problem completely. Unfortunately, we will be playing it by ear for now. Basically, his future care will depend on how well Jackson does on his Lasix medication.

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Aside from the problems with his mitral valve, Jackson has been progressing very well this week. The doctors say that Jackson is “eating like a champ”, and he is gaining weight like he should (just like any normal newborn). This makes me happy since I know many heart babies have trouble eating and gaining weight, especially in those first few weeks of life. I can tell he is getting a little more plump every day. 😉 The nurses are also impressed with how well Jackson makes eye contact with people. He’s very social – I think he really likes having so many visits from all the different nurses and doctors. Everyone comments on how long his legs are, and his big feet!! His little feet are always sticking out of whatever swaddle we’ve put him in, it is the cutest thing. 🙂

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So as far as our plan these next few weeks… Jose still plans to return to Midland on Sunday, and return to work on Monday. I will stay here with Jackson, and my dad is flying in to San Antonio Sunday to stay with us and help, especially with all of our follow-up appointments these next weeks. Jose and I were lucky enough to get a room at the Ronald McDonald house this past Wednesday, which I think will be much more accommodating than a hotel in the coming weeks. Jose will return to San Antonio on his next days off, unless, for whatever reason, Jackson needs to return to the hospital before then.

Even though it feels like we’re sort of stuck in a stage of limbo, I am still relieved that we’re taking this route. Of course anything can change in an instant (we learned that last Friday when we returned here to San Antonio!). But for now we’re happy that Jackson is at least out of the hospital – that’s progress. It has been pretty exhausting spending every day there at Jackson’s bedside – especially this second time around.

Out of the hospital_but still in limbo_7

Out of the hospital_but still in limbo_8

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We will be sure and post updates here on the blog these next few weeks, and let you know what the doctors say at Jackson’s follow-ups.

Thank you, as always, to everyone who has sent us love and encouragement this past month!! Jose and I are forever grateful for the support we’ve received from family and friends.

xo, Jose & Amanda

What’s next for baby Jackson…

What's next for baby Jackson...

What's next for baby Jackson...

What's next for baby Jackson...

Good morning.

Just wanted to let you all know that everything went well with Jackson’s catheter procedure yesterday. We walked along his bedside to the procedure room, and were able to be with him as they sedated him. Jackson cried a little as they put him to sleep, and so of course I cried with him, too. He was a little upset when he woke up – but I think it’s because he was just hungry from not eating all morning, and agitated from the sedatives. We were able to feed him shortly after (he took a bottle of pedialyte before they allowed him to take breast milk), and were allowed to hold him the rest of the day, which made us all pretty happy.

As far as the results from the procedure go…

The cardiologist, Dr. Londono, came in the waiting room to talk to us about their findings before they even brought Jackson out from his procedure. Unfortunately, it was not the good news we were hoping for. Basically, the doctors determined that the problem has to do with the mitral (left) valve, and not the small tissue ring that they originally suspected was causing the buildup (based on the echo findings Saturday). Last time we were in the hospital, the doctors mentioned that the structure of Jackson’s mitral valve might end up being a potential problem in the future, so it’s not something that was completely unexpected. Basically, the doctors originally suspected that the little papillary muscles that open and close the mitral valve are not working properly. Normally, there are two papillary muscles that do the work in opening the mitral valve (the little doors that allow blood to flow from the top to the bottom of the left side of the heart). But in Jackson’s case, there is only one papillary muscle doing all the work the open the valve, which is causing the difference in pressure in his heart. Because only one muscle is doing the work, the valve is not able to open all the way. This is something that will need to be fixed with open heart surgery, though the decision to do surgery will not be as simple and straightforward as last time we were here.

First, Dr. Londono will have to discuss her findings with both heart surgeons here in the hospital (along with the other 9 cardiologists) to determine if the valve is something that can be fixed at this time. If the surgeons believe they have the ability to fix the papillary muscle, then they will schedule surgery within the next couple of weeks. If the surgeons do not believe they can fix it at this time, then they will go back in with a catheter and open up a little hole between the left and right chambers to release the pressure for the time being – in order to relieve the pressure in his lungs. The main reason for the doctors not being able to fix the papillary muscles with surgery now is because Jackson is still very tiny, and the papillary muscles are very small and can be delicate to fix at this age. So, the hole would not be a permanent fix – it will only resolve things for the time being. Once Jackson grows, cardiologists will re-evaluate the mitral valve and will consider doing one of two things:

  1. The doctors will decide they can fix the papillary muscles, or…
  2. They will insert a mechanical mitral valve to replace the one he has now.

Just like before, Dr. Londono wants to really take her time with this decision, so we probably won’t know anything until Thursday when the doctors have their weekly conference meeting. This is where they present and discuss cases to one another, in order to have more than one set of eyes looking and analyzing a problem. Until then, we will just spend time with Jackson at the hospital and wait until they tell us what’s next.

It was a very hard day for me yesterday after hearing the news from the doctor. This outcome is one of the worse case scenarios that the doctors had presented to us last time we were at the hospital (though not the absolute worst case), so it was a difficult for me to come to terms with the fact that this is the problem we are facing now. I am confident that Jackson will be strong and make it through whatever procedure they decide is best for him. He is eating well, and grows bigger and stronger each day. The truth is I’m just very sad that he has to go through with all of this in the first place. He is still so little and fragile, and it’s a bit heartbreaking for me to see him have to endure so much this early on in life.

What's next for baby Jackson...

Thank you so much to everyone who has sent their love to us since we’ve returned to San Antonio this weekend, letting us know you’re thinking and praying for our little one. Jose and I have read every message that we’ve received, and we can’t tell you how much we appreciate all the love and support.

What's next for baby Jackson...

We will certainly keep you posted here on the blog, and on Instagram, what we find out on Thursday.

Love – xo, Jose & Amanda

Back in San Antonio.

Our Baby Jackson Bedingfield

Hello all.

If you follow me on Instagram, you may know by now that our sweet baby Jackson was re-admitted to Methodist Hospital yesterday morning. We had our first cardiologist appointment in Midland Friday, and unfortunately, the doctor discovered that Jackson’s heart size and pressure have both changed since he was discharged from the hospital two weeks ago. Our Midland cardiologist called the team of doctors in San Antonio with his findings, and they decided it would be best for Jackson to return to the hospital yesterday to be monitored for the next several days, in order to find out what is causing the sudden change.

Our Baby Jackson Bedingfield

Our Baby Jackson Bedingfield

We left the house early yesterday at 5am, and made it to the hospital by about 10:45am. As soon as we arrived, Jackson was admitted to the NICU where our cardiologist, Dr. Camila Londono, was waiting to start another echo scan immediately. She wanted to compare what our local cardiologist told her Friday on the phone.

Here’s what she found:

First off, Jackson’s heart is functioning properly, which is good news. However, Dr. Londono agrees with our Midland cardiologist in that the right side of Jackson’s heart is dilated compared to what it looked like a couple of weeks ago when he was discharged (i.e. the right side of the heart is now larger than the left). She noticed that Jackson has high pressure on the left side of his heart, which is creating a traffic jam of sorts where the left valve is located (the valve acts like little doors that allow the blood to flow from the top to the bottom of the left side of the heart).

One additional thing Dr. Londono noticed is that there is a small tissue (shaped like a ring) which is situated right above Jackson’s left valve, which is possibly causing the pressure build up. Now that the coarctation has healed properly, blood is able to flow smoothly through the left side of his heart. This is something the doctors here brought up before his surgery – that the left side of the heart would be “tested” more or less after surgery to see how it handles a regular flow of blood. This is most likely what is causing the right side of his heart to be dilated, and it’s also likely creating pulmonary hypertension (he’s not able to breathe very easily – his breathing is a little high right now).

So here’s what they are going to do. First, Dr. Londono is going to consult with another cardiologist who administers catheters into the heart to probe around a little bit without doing surgery. This will allow the doctors to see if the pressure difference (between the right and left side of the heart) is being caused by that extra tissue above the valve, or not. If what the catheter reveals is different than what Dr. Londono suspects, then they assume Jackson has hypertension in his lungs and they can resolve that with medication. This is something that he would outgrow as his lungs develop over time (by 8 years of age).

If the catheter reveals that Dr. Londono is correct – that the buildup is being caused by the tissue above his valve – then they will have to do surgery again to remove it. Unfortunately, it will have to be open heart surgery this time (rather than doing the incision under his arm, which they did in his last surgery). Dr. Londono says this is the most likely of cases with Jackson, based on her assessment yesterday. Of course, this could change once she consults with the other cardiologists – and also the heart surgeon (Dr. Kuperschmidt).

Then lastly, another possibility (in addition to the tissue she found above the valves) – is that they may find that the little muscles that are working to open Jackson’s left valves are not working properly, which they will have to fix with surgery, as well. This is the least likely of all possible cases, but unfortunately the doctors will not be able to determine if this is something that needs to be fixed until they go into surgery to remove the tissue ring above his valve. Dr. Londono will be present during the surgery with a probe and she will decide at the time if this is something that needs to be fixed. The decision will be made with the surgeon at that time, based on his assessment too.

So here’s the tentative timeline for everything. The doctors will most likely do the catheter probe tomorrow, on Monday. Jackson will undergo general anesthesia for this procedure. This is a fairly safe procedure – the biggest risk may be that Jackson could possibly get a blood clot where they insert the catheter (and that’s only if they put the catheter in an artery – if they insert it through a vein, this is less likely to happen).

Once the doctors get the results back from the catheter probe, then we’ll know whether they still need to do surgery, or if he will be diagnosed with pulmonary hypertension (in which they just need to administer medication to resolve). If Jackson needs to have surgery, then the doctors would like for it to happen by the end of this coming week – possibly Thursday or Friday.

Jose is going to stay here with me in San Antonio through Sunday of next week. He technically is going to work these next couple of days from his computer, but his counterpart is on call to take care of any emergencies that happen in Midland while he’s here. Jose has days off starting Thursday through Sunday next weekend. He’ll then need to fly back to Midland on Sunday, since he’s scheduled to work Christmas this year. I’ll stay here until Jackson is discharged from the hospital.

Our Baby Jackson Bedingfield

So that’s about it. Baby Jackson is doing really well, just like last time. He is sleeping and eating very well, which we’re happy about. Today we are just spending as much time with him as possible – the nurses have left us to do his feedings and diaper changes, which I’m glad. I want to be as involved as possible with everything while I’m here. Unfortunately, we can’t sleep in the room with him here in the NICU, so we’re staying in a hotel right across the street. But we’re here as much as we can with Jackson during the day.

While I know we’re under the best care and attention here at Methodist Hospital, I have been pretty sad since we learned the news on Friday night. Jackson did so well in his recovery from his last surgery, and it is just disheartening to learn that he may have to endure it all over again. It took a lot of strength and courage for me to make it through the last ordeal, and quite honestly, I’m having a hard time this go around maintaining the same high spirits we had last time we were at the hospital. Looking back, the whole experience was a bit surreal for me as a new mom. And for us to be back in the same place, it’s even more strange and a bit difficult for me to comprehend why this all happened in the first place.

I walked to the chapel this morning, and read through some of the prayer books they have there. I found one in particular that seems to be an answer to my struggles these past days, which I want to share here.

ASKING WHY

I wait for the Lord, my soul waits, and in his word I hope.

-Psalm 130:5 

The wilderness is never a comfortable place to be. It is a place of despair, loneliness, and abandonment. Sometimes we are in the wilderness as a result of our own actions, sometimes because of what others have done. Either way, it is always full of questions and doubts and fears.

My own wilderness in the past months has been my struggle as I try to understand why my brother has Alzheimer’s disease. I keep asking, ‘Why, Lord?’ To live by faith is to lean on God as we face life with its sometimes agonizing seriousness. I do not understand why my brother has this disease. But I am learning that all I love and cherish is the Lord’s. When I wait for the Lord, I learn many things. Most of all, I learn hope – hope for what God can do in my life and the lives of those I love, hope for what God can do with any situation.

Prayer: Lord, teach us to wait and put our hope in you, that we may give you the glory. Amen.

I’ll keep everyone posted what we hear these next few days, either big updates here on the blog, or small updates via Instagram. We ask, again, that you please keep our little family in your prayers these next few days as we learn more about Jackson’s condition.

Love to all – xoxo, Jose & Amanda