Getting hugs from Pete the Puppy
Today Elijah is four months old! Old man. So apparently the docs don't think a whole lot of his rapid breathing and slight decline in eating. It's not "acute" enough to be of concern right now. There are two things that can be going on: 1) His body is still recovering from surgery and healing up, or 2) He is getting too much bloodflow to his lungs, which is making his body work extra hard. This option is entirely possible because he does have those extra collaterals that are supplying extra blood to his lungs. We just have to wait it out for a while and keep a very close eye on him. If option number two is what's going on, we'll most likely have to do an angiogram sooner rather than later to see what is going on and possibly correct it.
The sleeping is getting SLIGHTLY better. I've noticed tiny amounts of improvement these past two days. We'll take tiny. Today Elijah napped on my chest for TWO HOURS! This has never happened. Granted, I didn't get a thing done this morning and I had to soothe him back to sleep about five times, but at least he slept for two hours!
6 comments:
I hope you were able to snooze while he was sleeping on you! Our little guy goes in for another heart cath next week, and the cardiologist said they would probably have to balloon the stent in his pulmonary artery...thereby, creating more blood flow to the lungs. This, he said, would cause him to go into "heart failure"...sounds bad..but, that's what has to happen in the short term to get the job done! So, your option 2 is probably is what is exactly happening to Eli. His body is adjusting to the extra blood flow. You're doing everything right...everything our doc has told us to expect and do...so, just hang in there!!! He'll be running around your house soon enough..and you'll be begging him to take a nap on your chest!!!
Take care...you have so many people praying for you!
Kathy
I'm so glad Kathy got in touch with you ... she's going thru the same roller coaster ride as you.
Isn't she sooo sweet...
she's this cute tiny little thing with the cutest southern accent...
she's from the Carolinas..
They have a blog for their little guy.. but I think it's "private".. I'm trying to talk her into making it public... I bet she's invite you if you ask!! ;-)
We're all keeping you guys in our prayers...
We know it's tough.
Hugs!
Amen for that - sleep is precious. Our Evan has NEVER been a good sleeper - I remember being happy that he had spent 5 minutes alone in his bed. He does sleep alone in his room now at 3 but, if he wakes up he wants us in there immediately.
Ahh, who needs to get things down when you are holding a sleeping babe - that is the best thing you could be doing anyway. :) I remember when we finally got our little man home after surgery and everything I would sit and hold him for hours. One great lesson he taught me was to not take the baby stage for granted - the dishes can wait. :)
I am glad there isn't a major concern with Elijah right now, and we'll pray that everything is taken care of and turns out fine. :)
I came across your website about your sweet baby boy. I wanted to let you know that Dr. Moga repaired our baby boys heart defects too. He was repaired at 9 days old and is now 19 months old and doing great. He has different defects from Elijah. God Bless you three strong people. Isn't the nursing staff amazing at Children's ICU? We will add Elijah to our prayers. Elijah is very blessed to have such amazing parents.
Tiffany Hartgraves
I noticed you left a comment on my blog page (work in progress). My email is tiffany.hartgraves@gmail.com. Harrison was born with interrupted aortic arch, large VSD, and a narrow aorta, as well as 1 functioning kidney. I read Elijah's story about the genetic testing. Harrison does have DiGeorge Syndrome. He had his left kidney removed a year ago this month. After his heart repair he had strokes which caused some brain damage. His left vocal cord was paralyzed from either surgery or intubation or extubation. His brain recovered some and he has mild Cerebral Palsy as a result. It all sounds worse than it is. His cognitive is fine. The CP is on his right side. He eats by mouth and had his feeding tube removed this year. He is amazing, as are all of these little babies. We moved back to Texas a year ago in August for family support. Thank you for sharing your story on this blog site.
Post a Comment