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.

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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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5 thoughts on “Out of the hospital.. but still in limbo.

  1. We are so happy that Jackson and you have left the hospital! I know that it must be a relief to see him growing every day and your pictures of that little face are heartwarming. I’m happy that your Dad will be with you and I know he is uber-excited to meet his little grandson! Love to you all, Aunt Mary Kay and Uncle Andy

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  2. Jack and I were reading this together this morning. I know how the ‘eat and grow’ waiting days can be. What a blessing that he is eating so well! We continue to think of you and your precious family daily. Much love from the Bowmans!

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  3. Amanda and Jose,
    Linda has been keeping me updated on your situation and I can only tell you as a new mom myself, how much I empathise with all that you have been through. I am so impressed with your strength and courage. You are so precious and have the cutest little guy!!! Oh my gosh, he is beautiful! We miss you here in Atlanta and we have been sending prayers and love especially during this holiday season. Continue to know where your strength comes from. Know we all love and support you. I’m sorry you are still in limbo, and our prayer is for healing and resolution. Love to you, your family and especially your new precious Jackson!
    Sara

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  4. Amanda, I’m so glad I followed up on Jose’s post New Year’s Eve and got caught up on the journey you and he and Jackson are on. While I’ve performed many weddings over the last 36 years, yours remains one of my favorites — because of who you and Jose are and because of the way you approached an unexpected situation. It appears to me you are bringing that same poise and equanimity and teamwork to this unexpected situation. I wish I were close by so I could come see the two of you and meet Jackson. But consider me part of your long distance team. Know that I will be following your updates. And be assured of my prayers. On Jan 9 it will have been 3 years since I had open heart surgery at Emory Hospital to replace my aortic valve. It was a “trip” I would just as soon have not had to take. But my prayer/mantra became words written by St. Julian of Norwich years ago. In the midst of severe personal medical problems she wrote, “All will be well, and all will be well, and all manner of thing will be well.” God bless you. David Jones

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