Ok. I am full of restless energy tonight and I thought I would take it out on you guys. Yes, all three of you! ;-) I don't even know who reads my entries but, you are in for a humdinger tonight!! Maybe.
So, this "heart world" sure can take you for a ride. One minute, you are celebrating a victory and the next, you're trying to figure out what hit you b/c things change like *snaps* that.
Rest easy- Ethan is 100% A-ok. He is presently snoozing on the futon. YES, the futon (in his room). He has decided his crib is meant for WWF type moves and not for sleeping! I don't have to worry about him falling off the futon b/c it slopes toward the back so he's as snug as a bug in a rug. I love that kid so much. I got to spend all day with him (We were out all afternoon, just he and I and then Dillon is not feeling well, so once he got home from work, Ethan and I had more adventures on our own) and it was so much fun just watching him. We went to Chick-fil-a and after getting a few pieces of chicken and fruit into him, we headed into the play area. There were some older kids in there (the eldest being 6) and he had a BLAST! Someone was looking at our house today, so we had to be out for 2 hours. Usually, on days like this, we end up at good ol CFA (I'm surprised they don't have a booth named after us) and that means plenty of playmates for Ethan. We actually met a little boy who is a day younger than him! He was a firecracker and loved doing what the big boys were doing. I'm kinda thankful Ethan is a bit more reserved (now, if he were alone, he would have been jumping all over the place). I was a tad nervous that someone was going to get hurt, but they all did well. After that, we took a break to "eat more chikin" and then more playing. This time, his playmates were little girls. He LOVES little girls! I rested a bit easier b/c they weren't anywhere near as wild as those boys were! He had a great time. He had such a good time that he fell asleep while we were shopping at Target! Yup. Leaned right over on the handlebar of the shopping cart and nodded right off into dreamland. Poor kid! Once we got home, though, it was full-speed ahead and we played outside the rest of the afternoon.
Ok- back to what spurred me to write. I just wanted to make sure you guys knew Ethan was good.
"My" heart babies. They are mine because I pray for them, think about them, worry about them, weep for them, get excited when I see their pictures and want to buy stuff for them, just like a mom. Of course, I have NO WAY of knowing exactly what their mommies and daddies are going through, so don't get me wrong there! I just want you to realize how much I love these precious ones. Yes, even ones I have not met. I rejoice when things go well and cry and rail when they do not. Today hasn't been a day of rejoicing for at least two of "my" kiddos.
Little Bowen had been doing pretty well, heart-wise but just hasn't been able to have a good, steady blood sugar reading. His is waaaaay too low. Doctors are trying to figure out the cause and have even mentioned possibly transferring him to another hospital, which sent his parents reeling b/c they never imagined being in the hospital for as long as they have. Something I have realized is that, even though the "heart stuff" works itself out (for the most part), something else seems to crop up whether it's feeding issues or something else. It kind of waylays you (is that the proper spelling?). I know that Matt and Sarah are missing their daughters a lot and don't want to spend more time away from them than they have to. They had asked for prayers to that end and then today, Bowen started having seizures :-(. At the time Matt updated, he was acting normal but they think he could have had a stroke. I did some reading about hypoglycemia in infants and saw that seizures and other issues are part of the "side effects." Oh please, won't you pray with me that this was a one-time thing and that there are no lingering effects from what happened today? Pray that the doctors will figure out why his blood sugar is so low and find a remedy for it. Pray that Matt and Sarah will feel the peace that passes all understanding and that they would feel God holding them close.
Nathan has been doing fairly well. He continued to battle fluid build up and some other things (had to have a couple heart caths and a stent placed) but was able to feed from a bottle nipple a few times (even drank 40ccs of formula out of one! That is half of one of his feeds!!! Otherwise, he gets his nutrition via his g-button) Well, he was grouchy and fussy the past couple of days and ended up needing a blood transfusion today. He also had a bit more fluid than they'd like so they gave him an extra dose of IV diuretics. The IV is something he needs to get off of in order to go home, as well as learn to breathe using the home vent (different settings than the hospital vent). He was able to practice 4 hours yesterday but tuckered out. Because of how rough he had it today, they didn't want to push him. Please pray that things go back on the upswing for him. He's been in the hospital every day of his 4 months of life. He also has only had one of the three stages of surgery to restructure his heart (both he and Bowen were born with Hypoplastic Left Heart Syndrome), and the 2nd stage usually happens around 6 months of age. His parents would like to have him home for a little bit prior to that, if possible.
UPSWING ALERT! Greta has been having a great couple of days!! If you recall (I think I wrote about it), she was having a terrible time, post-Fontan, with fluid issues. I mean, they were pulling up to 600cc's of fluid off her little body! She had a couple of procedures (and heart caths) and something finally worked! She's starting to eat again and has no chest tubes and even removed her oxygen (yes, SHE removed it) last night. Her sats stayed where they need to be, so she's officially tube-free! They are hoping she gets to go home in the next couple of days. That would be WONDERFUL!!
So, after writing all that, I don't feel as jittery as I did when I started. I just feel like shouting from the rooftops for everyone to stop what they are doing and pray for these babies. 1 in 100 babies is born with a heart defect. It's estimated that 9 die per day. NINE babies. Every day. I just think about this and it slays me. One thing that has been plaguing me lately is this. Think about your child being born- maybe he/she was diagnosed prior to, maybe not- and then going through surgery and fighting through so many things and then not making it. How in the world do these parents cope? I know two very strong women who experienced this recently. I'm not sure I'll ever be brave enough to ask. I mean, it ripped my heart inside out when we found out about Ethan- both for his first surgery and his second. His second was so hard for us b/c he was 4 months old and we'd really bonded with him. We were terrified of losing him. Praise God that it wasn't his time and he made it through everything and is still with us. I am praying the same for the babies mentioned above. There are also several others that I've "met" via prayer requests online, whether it be Facebook, a blog or Twitter. Annabelle is having her Glenn procedure tomorrow morning. Another little one, Logan, is being transferred to another hospital to undergo a procedure soon, as his heart isn't in good shape right now.
Please pray for these and for the others out there yet to be diagnosed.
Thank you!!!
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