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


6 thoughts on “What’s next for baby Jackson…

  1. Oh Amanda! What a beautiful baby Jackson is. Every picture is just more stunning than the next. My heart breaks for you and your sweet family. I remember so well the waiting on the right time to do the surgery and the exact findings that would result. Again, Jeremiah 29:11 was so strong in my thoughts when I was frustrated with the doctors timing and trying to find patience, etc. Praying for your sweet family daily. Much love!!


  2. We are praying hard, Amanda & Jose! We love you very much! My heart breaks but I trust the Lord will see the doctors through this. He will stand over Jackson and keep him safe. xoxoxo


  3. Jose and Amada, baby Jackson is in my prayers!! He will be fine, I ‘m sure!!! Amanda, be strong a keep him breastfeeding as much as you can! Breast milk is the best for babies!! You probably know but if you don’t e-mail me and I can give you some tips to keep producing milk as much as possible!!! With lot of love Mary Manzano ( Los Manzanos de natacion)..Bendiciones!!!


  4. Pingback: Out of the hospital.. but still in limbo. | Our Baby Jackson Bedingfield

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