Home Health came out on Friday and weighed Gracie, she had lost more weight and now weighs 10 lbs. 9 oz. Since then, I have started feeding her 45 mls every two hours for an hour with continuous feedings at night. She has seemed to tolerate that a little better. She is still throwing up but now does not have as much volume to throw up. For some reason, she has done really well today. She has slept most of the day and thrown up only once in the last 6 hours which is unheard of. Maybe it is all of your prayers!!
Other than that, she is doing well. She is kind of funny though. Every time you pick her up or move her, she fusses. I don't know if she thinks we are going to do something to her or what. Also, we noticed that she likes to hang out in her crib and not be bugged. This makes me a little sad because I attribute it to her laying in a bed for 11 weeks and not knowing any different. I think she likes to be alone because she is used to it.
I changed the dressing on her chest wound and it looks really good. I am shocked at how well this new 'aquasill' bandage has worked for her. I think it has done more healing in a week and a half then the wound vac did in a month. I will be interested to see what the plastic surgeon has to say when he sees it on Wednesday.
On a side note, I got a 'book' in the mail which was the hospital bill. Any guesses what a luxurious 11 week hospital vacation will set you back? $676,763.13!!!!!! And that does not even include the doctor's bills!!
25 comments:
Hey I just thought I'd check in. Glad to hear Gracie's doing "okay." I'll pray for her feedings to go better and for her to gain some weight. She's sure looking cute. Hang in there! I know things are rough right now!
Love, Kim
Oh my goodness! I hope you've got good insurance! Glad your little treasure is doing good today!
These are the days when we can say-Thank Goodness for insurance! Hopefully they won't give you too much trouble with your coverage or networks etc. so you won't have to dedicate too much time to that! Hope her feedings continue to get better and she can keep more food down. Let us know if we can help.
We call our son "Tiny." This is short for our tiny million dollar miracle!
Hope y'all had a wonderful Father's Day! Don't you love those bills? I have a collection although Gracie takes the cake with her "extended" stay.
SO gald to hear that her feeding has gone well today. She'll get there!
Hope the appointment goes great on Wednesday.
Heart hugs~ Rebecca
I think she just likes to chill in her crib because she's so happy to be home! My babies didn't have a luxurious hospital stay & they pretty much just liked to be left alone too. I just had my husband guess the dollar amount for 11 weeks in the hospital and he guessed $120,000.00. He was WAY off. WOW! We are keeping you all in our prayers, especially sweet Gracie:).
So now you are even busier with feeds every two hours, but I so hope that she continues to improve with her throwing up. That would be such a relief for you and for her. It's so good to hear that her chest scar is looking better. She sure has some battle wounds on her tiny little body, but what a little miraculous body she has. I hope you all had a great Father's day and that each day will get a little better and a little easier. Good luck on her check up Wednesday! See you Thursday...Leslie
I remember getting Ryker's "book". We spent 7 weeks in the PICU and he was a little over $550,500 dollars. Whenever anyone complains about insurance at work, I just shake my head and tell them that I will never complain, I definitely get my money worth! That is awesome that she is healing so well. And we hope that her feeding get better. I was talking to my best friend who is an RN on the PICU, and told her that Gracie was home. She said that she truly is a miracle, and that she had heard she was finally able to go home. Anyways, hope you guys had a peaceful Father's Day.
Emily and Mike
I'm glad that she's had a fairly good day today. Maybe it's just her way of wishing Tom a Happy Father's day...and what a great father he is. Love you all, Susan
Like everyone, I am glad she had a good day. I think you should copy and frame the page on her bill that totals it! :) What a priceless baby you have!
I keep praying the days will get easier for little Gracie and for you. Wow. SOOOOO glad for that insurance!
OUCH! That's a mean bill. I am glad to hear she is somewhat settling in and still healing. I hope her throw ups get better and therefore helping her to gain weight. I wish I had to gain weight and had a constant feed through the night...YUM!
wow!!! Yikes. That's more money than i'm worth! Glad your little angel is doing well!! We will continue to pray for her!!!
Tami
Holy cow that's one expensive vacation plan! Makes you grateful for insurance coverage huh? I'm glad her feedings are improving, even though it sounds like more work for you. I hope they continue to improve - she is such a special girl and we hate seeing her struggle. It must be hard having her prefer to lay down without being bothered but I'm sure that will change over time. For now when you are so busy, maybe it is a blessing that she isn't wanting to constantly be held and coddled. We're still here anytime you want some help!
Aren't those medical bills great? It makes me feel so blessed to have such amazing insurance!
I laughed when I read about Gracie liking to be left alone to be in her crib... Owen is the same way...and he only spent 4 weeks in the PICU. It's helpful when you want to get something done. But sad when all you want to do is play with them and they get all crabby.
Sounds like her feeds are getting a little better... and so HAPPY to hear the chest wound is healing up so nicely!
I'll continue to say many prayers for Gracie girl!! :)
Andrea
WOW that is one crazy bill!! I can't imagine. I hope that Gracie will do better this week, we will be praying for her!!
I check on you guys daily and love hearing your updates. Sounds like Gracie is just settling right in. Maddie was a little crabby for a while too...they finally "enjoy" all of the cuddling after a while! I agree with you that they totally feel bugged and give you the "scowl" like, "what do you think you're doing???" when you tend to them! Can we really blame them though? So happy to hear that her wound is healing nicely and we'll keep you in our prayers!
Love,
Katie Allred
(Maddie's mom)
it is so crazy how much I can relate!! Grace also does not like to be messed with. She hates being transferred from one person/thing to another. Doesn't like being moved. AT ALL. However, she has gotten a lot better since the first couple weeks she was home. It seems like she just needed to learn to trust that Mommy and Daddy weren't going to hurt her!!
And, we also got one of those 'books'!! Crazy isn't it?!! Thank goodness for Insurance and Medicaid!
I'm so glad that you guys are enjoying her and treasuring each day. she is a doll!
We'll keep the prayers coming!
love the andersens
For everyone's information - Gracie is even MORE precious in person! She is beautiful - Michele you're an awesome mom!
Maddie
I understand you COMPLETLEY reading these posts about feeding issues and throwing up...It can be sooo frustering to watch them throw up time after time when you know they need that food sooo bad! And then to see the numbers on the scale go the wrong direction! It's sooo frusterating! I hear you and I will be praying that things get better for you soon because we really don't need any more issues on top of the ones we already have!! :) Hope things keep going okay and you stay put at home!!
Hello! I found your blog through another heart family - Elaina & Hollie. My youngest daughter, Nevaeh, has TOF w/PA,MAPCA's & ASD. Amazing how we learn the lingo so fast!
I truly understand what you mean with the "book" of a hospital bill. Nevaeh just had her 3rd open heart & her bill was a little over $117,000 - this was for just 9 days, and like you said - no doc's bills! This was a "cheap" stay for her history (LOL).
Just wanted you to know that we'll be praying that Gracie makes a miraculous recovery! Please feel free to stop by our blog @ http://nevaehkaylenewalp.blogspot.com/
((Heart Hugs))
Tina & Vaeh (Jon & Gabby, too)
Doesn't it make insurance real easy to pay each month. Tyler's Norwood was 790,000 plus doctors which brought it to over 1 million. If you were in San Francisco it probably would have been 3 million. Ha!
We are praying for little Gracie. I know before long with your wonderful and unconditional love she will be crying to be in your arms. She is such a miracle and soo cute. Stick in there.
Glad to hear that Gracie is tolerating her feeds a little better this way. Something occurred to me that I wanted to mention. When I brought my daughter home she was on a pre-digested formula called Pregestimil. She didn't have any spit up problems and I contribute that mostly to the Pregestimil. They started her on it at Primary, and I kept her on it until a month after her Glenn. I don't know if you guys have already tried this, but I thought I would tell you just in case you wanted to. With continued prayers. Jen
HOLY COW! What a bill. I asked my husband to guess on the number and he said somewhere around 225K. He was floored when I told him. I hope the insurance company is good to you. We'll pray for her that she can keep down more of her food and tolerate it well! That is kinda sad that she prefers being on her own, but I'm sure she'll adjust to all the physical affection.
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