kristaphillips Some days I have to just pinch myself. It’s been a heck-of-a-nine-months, let me tell you!
But there are GOOD things on the horizon!
First, we made it to the floor!!! We moved up late Monday around 5 p.m. It was a whirlwind of a day, as was yesterday, as she got another PICC in yesterday morning (they have to take her down and give her anesthesia to get one… she is not an easy one to get a PICC into!)
Second, we have a tentative “go home” date, which is EXCITING!!! I am not counting on the date though. There are still a lot of things that have to come together between now and then, and a few issues Annabelle is still having that must be resolved before then.
LUNGS: This is the biggest concern. She is still pretty junky much of the time and desats into the 80’s sometimes (no more 75/85 sats for her… she needs to be >93 now!) They had to suction her out 3 times overnight, and have added some specific treatments to try and help clear her out. The good news is that her cough is progressively getting stronger, so this should help!
VOICE: She still has a weak cry though, so they have asked ENT to evaluate her. They just came in and said they are going to do a scope early this afternoon to evaluate her vocal chords. This will tell us what exactly is going on… if it’s just swelling or if there is something damaged.
FOOD: This is a FUN ONE! I am SO SO SO SUPER excited I can hardly contain myself! Annabelle has pretty much NEVER eaten by mouth. She was feed through an NG tube (tube down her nose into her gut…) then an NJ tube (tube down nose into intestine) then finally a G-tube, tube directly into her stomach.
BUT!!!!!! Speech evaluated her again today, and Annabelle ATE with a BOTTLE! She ate 4cc’s of milk… which is just a smidgen (one ounce equals 30cc’s) but it’s something! And when the therapist took the bottle from her mouth, she got mad and wanted it back! I LOVE IT! So… we are going to try some “food” this afternoon, just to taste it, and then hopefully have a swallow study done tomorrow or Friday.
TRAINING: Scott and I are spending a lot of time talking with nurses, giving meds, and going over all the things we’ll need for “home.” They will be teaching us how to listen to her heart with a stethoscope so we can count her heart beat, how to take her temp (think I can handle that one by now) and just generally how to take care of her.
TRANSITION:
I’m kinda gonna miss the hospital. I know, it’s weird. But it has been my home for 9 months. It’s where my daughter’s life has been saved. The people here have worked tirelessly to keep my baby safe and healthy, and I’ve become dependent upon it, upon them.
I’m so excited to go home, but it’s a little scary and overwhelming too. Everyone tells me “You must be SO SO SO excited and ready to leave” and while I AM… I’m also nervous and trying not to feel guilty about not being as excited as everyone thinks I should be. (I know that doesn’t make a lot of sense… but it’s how I’m feeling!)
So while we ARE excited and want nothing more than to bring our little Annabelle home, we are doing this carefully and trying to make it the best transition possible. Your prayers to this end are GREATLY appreciated.
FUN TIMES:
Melissa (Anna Reese’s mom) and I have gotten into a bit of a routine. We stop by each other rooms to see how things are going (I’ve missed that this week since we are upstairs!) and on Monday nights, we got watch a movie and eat pizza in the hospital theater with all the kiddos.
And every 3rd Tuesday of the month, we go to the hospital’s pizza/bingo night! It’s little things that we count on and make us smile, and give us a routine of sorts.
So… yesterday was our last pizza bingo night together. It was bittersweet, and we had them take a picture to commemorate the occasion! (I don’t think I ever realized our great height difference until seeing that picture! ha!)
Anna Reese is also doing MUCH better by the way… so we are praying that this is Melissa’s last pizza bingo night as well, although she still has quite a few step before home, so please keep them in your prayers!
A SPECIAL thanks to all the child life volunteers and Friend’s of Children’s hospital that put on these events. If you are looking for a way to volunteer, your local Children’s hospital is a GREAT PLACE to do so. While I worked during the afternoon, a few times a week a volunteer would come in and just sit with Annabelle and play with her. It really is a HUGE thing, and while it’s hard to be around sick children, it is the most rewarding thing I can think of!
Okay, so this is a LONG happy-birthday blog, my apologies!
And here is a Happy Birthday Picture of Annabelle!!
I can't believe how much better she looks!
Your mixed feelings are so understandable. I don't know what I'd be thinking/feeling after all you've been through.
I'm so excited for you! Happy Birthday, Annabelle!
She is looking much better Krista! We will keep praying that things fall in place for you guys to leave soon. I'd love to type more but i'm running a bit short on time unfortunately, Happy Birthday Annabelle!
Jennifer
Happy, Happy birthday, Miss Annabelle! Praying for you all!
Happy Birthday, Annabelle! I keep forgetting our babies are only a month apart! Like Erica said, she is looking so much better!
My mom said your feelings are completely normal. She and my dad felt the same way when they took me home after four months–and I still had a feeding tube in my stomach for another three months, they had to learn to do all that. But you're strong and your love for Annabelle will enable you to handle things far better than you know. Not to mention, a load of help from the man upstairs! God bless you guys!
What a wild ride this last nine months must have been for you, I know it was for those of us who have grown to love you guys so much! Congratulations on our 9 month birthday Miss Annabelle, and I am praying for many many more. I hope we will all be around to celebrate your 18th YEAR birthday, your 21st and your other milestones in years to come. Krista, please tell Anna Reese's mom we will not stop praying for them until they are safely at home and healthy as well. Our prayers to both families for happy healthy futures!
Happy 9 month Birthday, dearest Annabelle!!
Krista, I so understand your "anxiety" about going home. On a whole different level I felt the same when it looked like my mom would be coming home (she was diagnosed with a brain tumor but looked to be stable). I was so happy she was stable but so nervous about how it all would work out, taking care for her at home. Everyone expected me to be over the moon … but I wasn't.
It's a good thing you're learning how to do things now. It will all go well of course. As parents you also have an "instinct" to do the right things at the right time. And God's helping hand is always there!
God bless you all!
HAPPY 9-MONTH BIRTHDAY, ANNABELLE!!!
She looks amazing, Krista!!! Seeing her take a bottle was AWESOME!
I hope she gets all these little (not really little, but little in comparison to what she has already been through) things taken care of so she can go to the next step.
I can definitely see how you'd have mixed feelings about going home. You have all this support there and having to do everything and make all the judgment calls yourself has to be daunting. Plus, just being there for nine months, you have your own routine and your own "normal." It's going to change, and while it's a good change, it's change, and that's hard.
I love you, my sweet friend, and I'm still praying for you, Annabelle, Scott, Karalynn, Lacy, and Gabby.
Happy 9 months, Annabelle!!
Like others have said, I think the not being as excited as maybe some expect of you is really understandable and probably pretty common. I haven't been in your situation but it makes sense to me anyway!
I love these happy updates lately! Things had gotten so grim there for awhile. I'm so thankful Annabelle is on the up and up! Thank you for the recommendation to volunteer at a Children's hospital. I've never thought of that before because I didn't really know it was needed, but I love kids and would love to hang out with them! Even if they are sick.
Happy birthday! So excited about the tentative homecoming date, and I will keep praying that all goes well. I remember feeing my heart baby, Preston, a bottle after surgery. It was the same situation where they only gave me something like 4ccs (and most of it stayed stuck in the rim). He sucked it down like a champ and was MAD that he couldn't have more. Hated to hear him cry for more, but so glad he wanted it (and could have it).
Krista, I literally gasped out loud when I saw the bottle in her mouth! I know how excited you are about that. I am so glad to hear how well she is doing.
Happy birthday, Annabelle! You are a girl after my own heart. I get mad when someone takes my food away too. 🙂
Krista, I got tears in my eyes seeing that picture of her smile. It's just the first of many for her. I know it won't be an easy road as you adjust to home life…and not just any home life, but one with a baby who will need a lot of one-on-one attention. I pray that God slows you down to enjoy those little moments each day.
I can't believe how many things have happened since I was there yesterday afternoon – including the ENT evaluation and the BOTTLE! One step at a time, and don't apologize for any of your feelings. Taking her home and caring for her all by yourselves is going to be a HUGE adjustment, and I have a feeling you will need our prayers just as much then. What a blessing that your have built up such an army of prayer warriors duting the nine months in the hospital! Love you!
There is such a huge difference in how she looks! Her skin is so bright and pink now. She looks so incredibly happy.