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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One week ago

Just one week ago at this time we were starting an IV on our precious little girl. Since then we've really been through the wringer.
When we called the pediatric office call service for the second time last weekend they told us to go on down to the ER and be seen. We thought we would spend the day there and go home... Funny how things work out. In the ER, they drew blood from her finger, attempted and IV two times before getting it the third and took her vitals several times. At around 8pm, after being in the ER since noon, we were moved up to the floor. That was one long night. She was hungry but couldn't eat and I'm sure her belly was killing her. Monday and Tuesday was a blur and Wednesday was a nightmare. But since then, she has steadily gotten better and for that we are so thankful.
Last night I went home. If I wasn't so exhausted I probably would've cried more. I cried a little, took to Unisom(generic is called Wal-som) watched Duck Dynasty and went to bed. I woke up at 1:10am and checked my phone and again at 4:10am and made sure M hadn't called. This morning I got back up here and she had done well through the night and miraculously hadn't pooped. She went about 36 hours without pooping! So this morning we celebrated with a bath, fresh new bandages, and clean linens.
She has been very restful and only a little fussy and we are going to dinner tonight at Tony's while Nana watches her. M went home to get caught up on some stuff at the house so me and AR are napping together.
Thanks for your prayers. Near and far. They mean so much.




I'm going to try and post more tonight. I wanted to share how much better she is doing:)
Dannis
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Lady CaCa

Sooooo somebody hasn't pooped in almost 24 hours.... Welcome to crazy town!!
Last night, AdaReece stooled around 9pm and then slept from 10ish until 5ish this morning! What the WHAT?!? Then, was in a fabulous mood or napped all day. Around 2:30 Michael and I left the hospital while his mom {nana} and her parents {grandma and grandpa} watched her.
We went and ate pizza on the patio at Mellow Mushroom and people watched. Let me tell you how bad I needed that margarita!


We decided to walk around a bit and saw these tents set up at Ross's Landing and I remembered a festival called Chatty Crafty was going on and there were a ton of hippy crafty people there selling jewelry, decor, tie dye, soaps etc. Well, this one tent had all these turds. Like felt stuffed cartoon turds. Hilarious. They had animated ones called Dolly Sharton and Spooper Man and Lady CaCa. And a sewing hoop with "there's no place to poop like home" in cross stitch. It was soo funny. Anyways. We got our GI dr a magnet. And it is currently on AR's crib.


When we left there, we stopped at Ben and Jerry's and I got my usual Cookie Dough cone and we went back to the hospital.
This is the happy girl we came back to:


She is the best.
So after a little while and a conversation with Michael I decided tonight was the night. I was actually going to come home and sleep in my bed. Michael has been begging me to come home and I had pretty much refused. But, tonight I'm going to try to catch up on some sorely missed sleep. This is the first night I have ever. Ever. Not slept in the same place as her. So tough. But here is what I left when I came home:


I know they are going to be fine and have the best night yet. Hopefully the two Wal-soms I just took will help me.
I'm counting my blessings tonight.
Sleep tight,
Dannis
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Losing it

There have been several times in my life where I lost my temper. Anybody who knows me knows I have a mouth and I know how to run it. I tend to have a flair for creating new words and they are words that when typed are censored with fancy symbols like this: !@#$%^&*!
Last night, AR slept in the bed with me and she did pretty good. [[[[I NEVER let her sleep in our bed when she was newborn because I was too scared she would suffocate and I myself never could sleep from the worry....she would sleep in her nap nanny next to me]]]] But since we have been admitted here she either slept in my arms or on me or she hasn't really slept. So she cried a whole lot less last night. And you know how hospitals are, they are in every hour to do some check or beep something so you never really sleep anyways.
Well, this morning, they were in at 4:26am to check her vitals{{which is totally redic taking her blood pressure every 4 hours but thats another story}}and I was like well I have one more nap then we will have a steady stream of people in and so I better go back to sleep, well i was woken again and looked at my iPhone and it was 4:07am....WTF? I thought I must've been delirious earlier but about 30mins later the phlebotomists came in and I knew my phone must be wrong. So that irritated me. Then, the stream of nurses getting vitals, starting meds, and doctors come in until 8:30a. So finally we all climb back in bed and decide to try to catch one more nap for the morning, it was cloudy outside, clean diapers, a fairly quiet hall and we all fall asleep, probably about 9am.... 9:31am some female{not a lady} comes in and starts changing the trash bags, yes the trash bags. there are three, none of which are 1/10th full and they are NOISY. and it was RIDICULOUSLY loud and obnoxious and completely unnecessary. So, I guess you could say I woke up on the wrong side of the bed. I have never wanted to stab somebody so bad in my life.
Until 12:36pm.
Michael was in a conference call with a guy about his practice and my dad was here and he suggested I go out for a walk to get out of the room for a bit. So I didn't make it far and my dad called me saying they wanted to take AR for a X-ray to recheck the placement of her feeding tube. They took one after they placed it and said the line was a little coiled in the stomach and wasn't as far as they liked in the jejunum but that they thought it would straighten out. Did they want to take this X-ray before starting the feeds- nah, that was not necessary. For whatever reason, they wanted it now....2 hours of drama and no changes later we still have the same tube and a mamma with some high blood pressure. Appearantly as long as she is not throwing up the feeding tube is fine. WHATEVS.
After that, my dad and I drove to my house where I haven't been since Sunday afternoon. And I got some of her button front sleepers and a few other things for me. Then, we picked up some take out from Tazikis....omg...so deeelish and came back to the hospital.
Michael's mom {Debbie} has a friend {Stormy} that has made several dresses and rompers and she made AR a hospital gown. ITS SOOO CUTE. So she modeled that and smiled a ton. Then was a little fussy but she's snoring as I type this. Hopefully, I can catch some z's pretty soon. Here are some of my pics from today:

This is actually from last night right before they took her IV out of her arm...her don't mess with my Mamma face...

Such a smiley girl :0)

Then these are from today::

Playing with PaPa and mini Carter

Too cute homemade card we got today

Modeling her new handsmocked gown with lace trim and ribbon tie back...

Practicing her pitiful face for the doctors

her blue steel

balloon attached to mug of flowers

All in all today was a good day, but I really wanted to drop kick about 5 people and didn't. Part if me wishes I would have and part of me realizes that I need to bite my tongue, watch my mouth and calm down. Thanks for the prayers. You will never know how much I appreciate the kind words and prayers. 

Good night, 

Dannis

New Day

Yesterday was probably the most stressful day of my life. Thank you so much for all the prayers.
We are going to have to wait to hear back from the cultures and the biopsy but the GI doctor (Dr. Devoid) said from the EGD scope the areas of her digestive tract (duodenum) that were supposed to be smooth were rough/injured and the areas that were supposed to be corrugated and bumpy (intestines)were slick/injured. She is getting the Total Nutrition thru her Central line (in chest- delivers fluids into blood stream). After the surgery, they moved us from a tiny closet room into a big nice suite with a crib, a hospital bed AND a couch bed. So fancy. It really is amazing how much better you feel in a bigger room. We were a nervous wreck yesterday and all camped out in this tiny room being a big ball of stress. Then it was like a weight lifted off my shoulder when we went back up to recovery and picked her up. She was a little fussy last night and had a slight temperature but she has been resting and doing good. Michael did good holding her and snuggling her and helping the nurses get her vitals and medicines going last night. I will try to keep updating as things change. They have not started any feeding yet but making sure she reacts well to the TPN before adding anything else.
Here is pic of our old room and then new room:

and here is a picture of our little angel and Daddy this morning:

More soon:)
Dannis