Tuesday, May 15, 2012

Update and Pictures

Hi! I am finding it hard to get to a computer these days. I had a chance Sunday evening after Lowell and Samuel left, but just wasn't up to it. The few times I come back to the RMH, I come to shower or sleep. A half hour nap here is better than a 3 hour one at the hospital. So, thanks for being patient with me and the blog writing!  :o)

Cayla is doing well and on the road to being discharged.  We got the discharge checklist (4 pages long) last night.  Her basic issue now is feeding.  Do we end up going home with being able to breast feed, with bottles or with the NG tube (the feeding tube in her nose, and yes, sending her home with the tube is an option), or combinations of them.  The cardiac doctors said I could try breast feeding.  I didn' realize how big that is until the nutritionist stayed after the doctors left to tell me that the cardiac docs don't usually give the option for a heart baby to breast feed.  I asked if it's just because she didn't have the major Norwood surgery and just the pulmonary banding, but she said no, that any baby with any kind of heart surgery has been included in this so they can control the numbers closely.  The cardiac nurse practitioner, Shanna, said that she believes it's because she really is doing well and has had such good numbers with very few drops out of the target range.  I have a feeling there will still be other bottles or whatever since I don't think she can eat enough from nursing.  She also said that they just want her to continue to gain weight before surgery in Sept., and if I can do that with just nursing, they won't even make me fortify my milk like they are doing now.  I don't think I have enough time to make this work completely, but they have let me breast feed every other 3 hour feeding.  They still do all her full feedings by the NG tube, but will let me work with her.  :o)  Yesterday afternoon and evening were successful, but this morning was not.  She was too sleepy.  This afternoon, the lactation nurse came and made sure I was doing everything right and giving suggestions to make it work better.  She said she's definitely getting milk and is sucking really strong!  Yay!  We will see... 

Shanna also said that she is sending in a specialist that will take her 10am feeding tomorrow and attempt to give Cayla the bottle for the first time in 2 weeks and since surgery.  She will evaluate her to see if she thinks Cayla will be able to learn how to suck, swallow and breathe without exerting too much energy.  So she will determine whether we work with the bottle to go home on, or go home with the NG tube.  I guess I should say that whatever is best for Cayla is what I want, but I really don't want to come home with the NG tube...  There's a prayer request for tomorrow.   :o) 

Well, Cayla got her first cast on this morning. It was pretty uneventful. We waited longer for transport to come take us back than the whole doctor's visit took. :o) Here's some pictures of week one's casting.  It will take 5-8 weeks of getting a new cast each week.  Then a brace with the bar between the feet.  Then the brace just while sleeping.  We'll see how all this goes.  :o)  She did great today.  For most of it just laid there and let them work.  By the end she was getting tired of it all and started crying, but overall she did great. 

Dr. Gurd and Dan positioning and wrapping.  Their goal today was to pull, flatten, and stretch the arch on her foot first. 

Dr. Gurd adjusting her foot before they finish wrapping above the knee and casting it.

Smoothing off the toes.

After the cast on week 1
Back in her bed with her cast...

Many of you are asking how I am doing.  I should start by saying that I know my husband is very concerned about me and my sleep deprivation. It is almost impossible for me to feel like I can leave her room. Many times I cry when I leave her, feeling like I'm being a bad mother for deserting her. I feel that if I'm going to go sit outside and read a book, why wouldn't I just sit next to the window in her room and read my book so I can be there if she needs me. I am definitely having a hard time relaxing and making myself sleep. Such as right now. I came over here to the RMH to sleep for 2 hours before I have to go back to nurse her later tonight, but I feel bad I haven't written anything on the blog, so I'm writing when I should be sleeping. Boy, I'm sounding like a whiner, but I feel bad because Lowell is so frustrated with me and my lack of taking care of myself before I get home when I will really have no choice but to be sleep deprived... Don't know what to do with myself.  He wants to be here to make me do these things while I have the help.  I am trying and will leave with others, but not on my own.  I am trying to be better. 

I am feeling good physically, except for being tired.  I've been walking the 4 and 1/2 blocks back and forth from the hospital to the RMH which feels great.  Today I did it 3 times.  I'll take the shuttle at night...  My incision is fine and I've not taken many pain pills in the last week and nothing since Saturday.  BIG NEWS...My sugar levels are completely in the normal range even after eating a McDonalds sundae and some fries.  :o)  I am still getting low carb meals because I want to keep a good trend going with weight loss during pregnancy.  I'm drinking water like crazy which is good for many things right now. So just pray that I can sleep and start feeling just a little more rested before going home.

Lowell and Samuel came up  Friday night and took me out to eat Saturday for Mother's Day and bought me 2 more books while we were out.  :o)  So I'm set for a couple more days.  Lowell realized we have a mail box here at the RMH and it was full!  A bunch of mother's day cards and thinking of you cards were in there!! Thanks for the wonderful encouragement!  I got a bunch of stuff from college sororities who pitched in and made up cards and gifts for all the moms at the RMH.  The Wed. night volunteers put together hand bags full of perfumes, shampoos, chocolate and more for each mom with the picture below! 

The hand bag from the volunteers and my cards from Lowell, Samuel and Cayla.  Below I've highlighted the 2 from my children........   Don't know why this picture went sideways, sorry.
So precious, from my children...  Don't you love the card they got me from Cayla?   It's "For my sweet Grandma..."  :o)   Keep reading....

And here's the insides of their cards.  :o)

The Bentley Samuel was drooling over...  :o)

Cayla giving Daddy a sweet, adoring look as he talks to her!  :o)

Her big girl crib in the Pediatric/Congenital Heart step-down unit.

Samuel and Little Miss Sis

Grandma came up on Monday to get her baby girl fix!  :o)

Sweet girl bundled up kind of crazy but cute.

Sarah Hopkins with Cayla...

Sarah and mom Kim Hunsicker and Cayla

Sarah, Kim and brother Jason with Cayla.  So, great to see them!  Haven't seen Sarah in a year since she moved away, and Jason's back from college, so a very nice treat!