Quick Updates:
I meant to publish this last night but didn't finish it.
Scarlett:
Yesterday evening Scarlett pulled her feeding tube out. I asked the nurse if we could leave it out unless it NEEDS to be put back in and after consulting with the practitioner, we moved forward with that plan. Scarlett took 2 full bottles and then all but 10 MLs of the last one. We hope that her hunger will take over next time (9am Thursday) and she will finish her bottle. As long as she gets most of her bottles they will leave the tube out.
The practitioner said she may be getting close to "ad lib" where they feed her when she wants and as much as she wants! We need to be somewhat cautious because the extra fluid may make her work harder.
EDIT: Just checked the webcam at 9:50am and it looks likes Scarlett slept through her 9am feeding so she has the tube back in. She went more than 12 hours without the irritant so I am extremely proud of her!
Grayson:
Grayson had a follow-up echo yesterday and he is still clear of Pulmonary Hypertension! At this point, he will get an echo in a month/before he leaves, whichever comes first, and then will be followed up by the cardio team as an outpatient. As long as he stays well oxygenated, this issue should not affect him too much.
The only thing they reported on the echo was an Atrial Septal Defect (ASD), which is a small hole in the wall that separates the two chambers in the heart. I think this was first seen on his echo that showed the Pulmonary Hypertension (PH), but an ASD by itself is not a big deal. This can lead to PH and parts of his heart getting larger from working too hard to get blood into his body (which could then lead to heart failure). ASDs are not uncommon and many people don't discover them until adult hood. The treatment plan right now is to watch for signs that he is having clinical issues such as needing more oxygen. We will continue to try and wean him off. The "hole" can close on its own at some point. Because the heart is a muscle it would basically "grow" until the hole is no longer visible. If it is still present when he is older and/or causing other issues, they would conduct heart surgery to try and patch it. If they did that now they would need to do it again when he grew more.
All good news! I was sharing the story of the twins with a friend yesterday. I told her that we have been witnessing miracles, watching God's plan for Grayson and Scarlett unfold, day by day, prayer by prayer. You hope and pray for miracles, sometimes doubting that they will occur. We are all witnesses to the miracle of these precious babies and God's constant care and love for them. Thank you, Mother in Heaven, for watching over these little ones.
ReplyDeleteI have to admit, I was a little nervous when I saw there was a Wednesday update. (I just went to the blog while my class is taking a test so I could get a "twin fix"). I hope Scarlett can get the tube back out soon. Maybe if you tell her she's getting Nana's meatballs she might be more inclined to wake up for her feeding (LOL). For all of you, I hope "before he leaves" comes before "in a month". Thank God for no Pulmonary Hypertension! Thank God also for the doctors who have discovered Grayson's ASD. God, give the doctors and nurses the wisdom they need to bring these babies to the next level closer to going home. And thank you for all the miracles you bring about each day as they serve to strengthen faith for all of us.
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