We're home!

Wanted to post that we got to come home today! It was a huge surprise!! I'll tell you all about it tomorrow. I've got to get some sleep!
Love,
Dannis


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Hiiiiieeeee

Hey guys! Just wanted to post that yesterday AR did really good and they have really been impressed with how well she has tolerated the oral feedings. (she had 3 10cc bottles) Then she had 1 15cc bottle. And then this morning the GI dr. upped it to 20cc every 4 hours! So far she has done great and not stooling!!! So we should be off the TPN by Sunday! Holllllaaaaa. More soon!
XOXO
Dannis


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Pop a bottle!

We had almost 10cc's. Which is almost 2 teaspoons of neocate. I'm not sure if she
1.) didn't like the taste
2.) didn't like the nipple
3.) was already full
4.) scared for her tummy to hurt
5.) any of the above
{that's for the standardized testers}
Anyways after that she didn't take but maybe one more sip, cried to let me know that was it, sat up and stared at her daddy, sweat a little and fell asleep. I changed her peepee diaper wrapped her up and laid her in her nap nanny and hopefully I can get a wink or two tonight.
More tomorrow. Maybe 3 bottle feedings if all goes well tmrw!!
XxOo
Dannis
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better late than never...

We finally took little miss priss's 4 month shots, we meant to take them earlier but we were in Mississippi for Easter and then we were busy and then we were sick... I should've brought her anywhere chair up here but oh well, we made do. She is also sporting some fancy pants leg warmers from our friend KerryAnne.










She had a good day today. Only pooped a little bit!! They are upped her feeding again at 4pm and now we are about to give her 10cc's in her mouth thru a bottle! I'm so excited and nervous!!





MORE LATER!
Dannis

Baby steps

Today was a pretty awesome day, as awesome as it can be anyway...
It started off kinda scary because she pooped sometime between midnight and 2am while I had her in the bed with me. At 2:30am I finally decided i needed to just wrap her up and put her in her bed, thats when I saw she pooped...So i was soooo nervous and couldn't sleep for a while after I put her in her nap nanny because I kept wondering if I should tell the attending and wondering if she was going to start crapping every hour. So , I went to sleep and at 5:55am they were in to weigh her and take her vitals and get the party started. She had another poopie diaper, then we were up for a while and she had a much smaller but another poop. Thats when I really started getting scared. But at 10am we bumped her feed up another 1mL per hour. and I held my breath... I don't know why I held it but until about 2pm I did. Then, I realized. I HAVE to "let go and let God" cliche? yes. Truth? yes. I have been in this 'survival mode' and instead of relying on God and TRUSTING in Him, I SAY "I trust Him" but I don't. I worry and cry and I don't trust. About this time last year, I found out I was pregnant. About a month before we were cleaning out photos at Michael's grandmother Ada's house after she passed and I found a wallet with a card in it that said "Those who worry do not trust and those who trust do not worry." How I wish I could live by that. Truly, actually, live it and not just repeat it. I guess in Him all things are possible...definitely something i need to work on.
Anyways, my angel baby doll was feeling so good today, she sat up strong, sat in her bumbo, smiled at all the people on the floor when we went for our walk, played a looong time when I was talking to the doctor...She is really feeling better.
At home, I would hold her for her afternoon nap and usually I would watch a show or two on dvr and the show ellen. Well today I held her while she napped and watched ellen and one guest was the mayor from Newark, New Jersey...Cory Booker. Ellen was prodding him to run for a higher office and he said something that really struck me. He said, "The best way to make God laugh is to make plans for yourself." I thought, AMEN. We had a trip planned to Hawaii...we were going to go for an orthodontic conference and stay for an extra week. May 4-16th. Oh well, we will have to try to get any money back and maybe we can go at the end of the year...We spent about a year looking forward to it, countless hours online researching, reading the book Maui Revealed, making reservations, etc. It's heartbreaking that we can't go, but there is a reason everything happens and I need to go ahead and build a big ol' bridge and get over it...
The doctor is going to increase her feeds a mL every 8 hours(where it had been every 12) and we are stopping the albumin in her TPN and see if her levels stay the same. They are now taking her vitals only once every 12 hours when awake and drawing blood every other day instead of everyday. So, we have a lot less interruptions and prodding which equals less crying and less stress! We just know that the more we increase her feedings she will eventually reach 'threshold' and start 'dumping' and we will have to back off and start lower and work up again as her gut heals it can only process so much. We just have to take it day by day.
Here are some pics of my baby doll....




















Sweet dreams!
Dannis

Milestones

Well, yesterday was a great day for many reasons. One of them was that I got a little rest so my eyes uncrossed and stopped twitching a bit...another was that we reached an awesome milestone! AdaReece rolled over for the first time. She turned left from her belly to her back! I asked the nurse if she could lay on her tummy or if it would hurt with her central line and tubes and they said no, she should be fine. So I laid her down and picked up my phone to film her and my phone's memory was too full and so it stopped and I set it down and at that same time she rolled right on over! I was so surprised and excited! She hadn't been on her tummy since a week or more before and even then, she was not a fan of tummy time. So, I picked up the iPad and tried to set it up and see if she wanted to show off again and here's what happened:

So that was her second roll over ever! She got mad when she got to her back and I think its because she wants to sit up. Here at the hospital she gets laid down when they stick and prod her so she's kinda over that.
It was just so exciting to be able to have her accomplish a milestone like this after all her little body has been through. It just reassured me that the Lord is with us and eased my fears about this affecting her longterm.
Also, I wanted to try to convey how much all of the sweet comments, messages, visits, cards, gift baskets, toys, hugs, love and prayers have meant to us. Truly. It takes my breath away when I think of how cared for we are. I know I'm on Facebook a lot. and I probably could take a break from all my 'social networking' but without that outlet and all the supportive feedback I got during this time, I probably would have lost my mind. I guess we would've been on the phone or something else I'm not sure. But even though we don't have 'in person' contact with many of you reading this, i still feel like it's very personal and it has made a big difference in my sanity. It really is the little things that make such a big difference. When I went home, I took a few pictures of things that brightened my outlook.
The sweetest card ever from a complete stranger. I have read and reread it several times and I tear up each time because it is soooo heartfelt and kind. Thank you Amanda...

 This is still one of my favorite pictures of all time, AdaReece's ultrasound when she smiled and posed, even in the womb...she loves the camera:)

 This song came on as I was pulling into the hospital. A perfect reminder, a great song...

this video is from this morning.... Such a happy girl.

Welp. Today is halfway over and she hasn't pooped! We are still waiting on GI doc to come by...he called this morning and said he'd be by around 1...it's 1:43pm....
I'll keep ya posted!!
Dannis

Wakey Wakey

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