Out of the hospital.. but still in limbo.

Out of the hospital_but still in limbo_1

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.

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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

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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

Our first week home.

Our Baby Jackson Bedingfield

Our Baby Jackson Bedingfield

So we’ve officially been home for more than a week now! And while the transition took a couple of days for us all to adjust, I think at the end of the week we’re all pretty happy to finally be home after moving around the different hospitals for so many days. 🙂

I mentioned before – I think in my letter to Jackson – that I wasn’t quite sure what to expect in bringing a little one into our home. Obviously Jackson’s surgery was completely unexpected, and for the first couple of weeks we were just focused on his health and getting him through the recovery without any problems. But now that we’re home, the focus has switched over to the more routine things like feeding, sleeping, diaper changes, and bath time. While in the hospital, we didn’t really have a chance to figure these things out on our own, since the nurses kind of took charge and instructed us on what to do, and when to do it. I knew we’d have to just figure these things out on the fly when we got home, and that’s exactly what we spent last week doing. We sort of made it through the week relying on trial and error, but I feel like by the end of the week I’ve learned so much more about my son. And hopefully Jackson’s learned some new things about his Mommy and Papi, as well!

In the meantime, I’m just soaking up the time Jackson and I get to spend together. I know that before we realize it, he’ll be sitting, then walking and talking, and I’ll look back on these quiet moments and really miss them!!

xo, Amanda

And we’re home!!

Our Baby Jackson Bedingfield

I apologize for the late update on the blog, but it’s been a crazy last couple of days. I just want you all to know that Jackson was dispatched on Sunday and we drove home to Midland that same night!! I can’t even begin to tell you all how great it is for us to FINALLY all to be home together, and well. 🙂

We found out on Friday that Jackson would be dispatched on Monday (yesterday), but then late in the day the doctors decided that he was well enough to leave on Sunday. We were absolutely thrilled with the news, but of course we spent the next day running around getting ready for the early departure.

Our Baby Jackson Bedingfield

Our Baby Jackson Bedingfield

{Our last morning at the hospital}

I was initially a bit nervous about the drive home. Midland is five hours away from San Antonio, and it’s a pretty desolate drive – only a couple of places to stop and there’s not a lot of cell reception along the way. But as it turns out, baby Jackson ended up doing really well! He slept the majority of the time, and we were able to find easy spots to stop when he needed to be fed and changed. I realized quickly that feeding and changing diapers in the middle of a gas station parking lot was a breeze compared to when he was hooked up to a bunch of monitors and IVs in the hospital. 😉

Our Baby Jackson Bedingfield

{All bundled up for the drive home}

Jose went back to work yesterday, and I spent the day getting into a routine with little Jackson. I also started organizing all the things we’ve acquired these past weeks. I even found time to take a nap during the afternoon, which was pure bliss. 😉 I tried napping at the hospital a couple of times, but honestly it was a bit difficult with nurses and doctors always coming and going. I’m sure Jackson appreciates the uninterrupted sleep here, as well (as you can see below, he already has two watchdogs keeping track of his every movement, noise, and breath). 😉

Our Baby Jackson Bedingfield

{Jackson and his big sisters}

So as far as Jackson’s health is concerned, everything is back to “normal” and we expect him to grow and develop without any problems going forward. We will start with his follow-up cardiologist appointments here in Midland next week. And then we also have a follow-up appointment with a developmental pediatrician in San Antonio in a couple of months. But for now, we’re really pleased with the way Jackson recovered from his surgery. We’re so relieved to be back in Midland, and ready to start our new life together as a family of five (five including the pups, of course). 😉

Thank you so much to everyone who has followed along with us these past weeks and sent us your prayers and love. Even if we didn’t get a chance to respond, I want you to know that Jose and I read every single message that was sent our way, whether it was here on this blog, on Instagram, Facebook, or text message. We are so, so blessed to have such caring and loving family and friends all over the world who took the time to reach out to us during this time of need. We cannot express enough how grateful we’ve been for your uplifting words and prayers.

So now that I have this blog space set up, I think I will continue posting updates on little Jackson as he grows. 🙂 It seems to be a good spot to share pictures and stories for family and friends who live far away. You can follow along if you want by signing up for email updates (in the right column). Or, you can just follow me on Instagram where I’m sure I’ll be posting lots of baby Jackson. 🙂

With love, xoxo – Jose & Amanda