Monday, April 20, 2009

Staying hopeful.

SO I hope everyone is doing great tonight. We are still hangin’ out here at the University of Iowa Hospital. Ava is really getting tired of being here already. We just got done going on a very long stroller ride. I wait until late so that no one is in the halls. She is happy to see other scenery.

This morning they took another x ray of her abdomen. There was no change from the one the other day. Ava was very upset and cried the whole time. She is just very scared and leary of everything that gets put her way. She’s been through too much. They also took blood from her ring finger this morning. I asked if it was necessary since they had just drawn blood the day before. She cried through that as well. It took about 5 minutes to get the amount they needed. Normally they just took blood through her Hickmann line.

She hated her bath this morning. She was worried about getting her line wet and that totally distracted her. Plus she got cold. I was a small tub she is used to the white one and she want comfortable. Poor Ava.


She was super hungry today and was mad at me for not letting her eat. I couldn’t eat by her so it was a sad, sad day. I waited until she napped and then heated up some of my Dad’s chicken rice soup. “Uhhh-Uhhh good!” She found comfort in brushing her teeth for about an hour. Enjoying the tooth paste.


The x ray lady let her pick out “a” sticker she grabbed 2 whole piles. I snickered to myself. She deserves it. We came back to the room and she made this with all 50 Thomas the Train stickers.


This afternoon Emily and Bree from Child Life came in and did a project with Ava. She loves to glue so she had a blast making this beautiful purse! Give Ava glue and watch out!


Her belly is distended today. I didn’t notice it really until today. I measured her on Friday and she was 51 cm’s. I’m not sure what she is today. I need to ask them for a tape measurer.


I was so sad that no one can find a potty chair around here. I find that odd that this is a major/huge hospital well a university and they only have ONE potty chair and it is in use. WHAT? She hates to wear diapers and I don’t want her great skills to be lost because of a hospital stay. I guess next time I will bring my own. I can’t seem to remember everything, especially my own bathroom! ;0(

So back to her being mad at me. She wanted food badly. So finally they decided to put her on a liquid diet. When the food guy came she was really excited. It was short lived when she realized it was just liquids. She did like the chicken broth. I had to feed her with a spoon since it was more like eating then swallowing!


See since now she has been on straight drain since we came here on Saturday. So we clamped her tube and let her see what she could handle. She took about 10 ounces of fluid by mouth. She was so hungry. She drank  broth and tea and Italian ice. She was fine for about 20 minutes, then I smelled poop. I checked her diaper (as they still can't find a potty chair) and she had pooped. I asked her to bend forward. When she did she screeched in pain and started crying in pain. I've never seen her like this. I called for the nurse and she thought she was having cramps. Without asking I vented her again. ( Hooking her feeds out a tube to relieve the pressure in her tummy. Don’t we all wish we could do this after a Thanksgiving meal?) See they wanted to see if she could tolerate feeds clamped.

The other surgeon came in and he said they were treating her as though she had a bacterial overgrowth in her intestines and they were hoping that would solve the problem, if not they will do a swallow study in a few days. If she doesn't improve they will have to do surgery. ALL other options exhausted. They will move slow and only do surgery if absolutely necessary. Oh I knew this was the case but I just can't go there in my head. I don't know how many surgeries I can watch her go through. It tares me up each time. I hate this......just hate it. I'll be praying God helps her through this one with no surgery.  On a positive note she is pooping and passing gas. That makes them less suspicious  of an obstruction.

She was very unhappy tonight and I snuck her 4 Cheese Nips crackers. She found them in my bag and she looked so sad. As soon as I seen them come out the tube I drained them out. I don’t want to hinder anything they are doing for her. She is now on Flagyl (antibiotic)this will help if she does have the bacterial overgrowth. I wish we could test to make certain it is this and we are not just guessing.

See her tears? I hate to see my baby cry. This has only happened a few times in her life. I could probably count on one hand how many times I have seen her cry out of frustration.


Her she is with a popsicle. Our nurse Christine got it for her. You should have seen her eyes light up!! The tears disappeared and out came that Ava smile!


Please ask God to fix this with medicine and not with a scalpel. I don’t know how many times I can watch her go through surgery and end up in the PICU. I cried today at the thought of her going through another operation. It just can’t be…so pray this antibiotic is exactly what her body needs to get past this hurdle. Mommy can’t take too much more.

The good thing about this stay is that God has given me a peace and I don’t feel at home somehow. I love sleeping next to Ava…being able to comfort and hold her. She is my precious. Thanks again for your messages of support and love. I need you all just as much as Ava needs me!



Maxton's Mommy said...

We have been sending many prayers up for Ava and will continue to do so. I hate to hear that she is having some miserable moments but pray that this will all be behind her soon. My heart goes out to you all.


Beto and Emily Huamani said...

No more operations allowed! Ava WILL get better with the meds and be eating like crazy!!! Praying for her!

My Three Sons said...

WE will keep praying for Ava. I'm so sorry she is going through all of this again.

Bryan said...

I am praying with you that it is just the BO. Even that is terrible but much better than the surgery alternative. The picture of her belly is just like my little girl has been lately. And she would have tummy pain. She did sometimes get relief after stooling but not always. We changed things up a bit and she got relief but then it comes back. I am still learning the signs myself. I know others can just tell right away when their child has BO. For us it was the distended tummy and tummy pain and lots of gas. If you ever need to talk or compare notes, please call 865-585-3697. Your baby is often on my mind and heart.

Pam Winter

Walker Family said...

We are praying for Ava's quick recovery. I can't believe she has to go through so much, and I pray she does not need another surgery. You are doing a great job!

Fer said...

Dear Terri, I am praying so hard for Ava! I am here for you if you need anything hun! (((HUGS)))

Marion said...

I am prayiong that the antibiotics will work and little Ava will not have to endure another surgery.

Lacey said...

Praying surgery is not needed. I hate bowell stuff, it can be so nasty and unforgiving. Email me sometime, I tried to leave a message on your private blog and it wouldn't let me. I can give good advice because we just went through all that stuff.

Aep said...

Many prayers for you and sweet Ava. I pray that God continues to give you the strength you need to help your little sweet miracle.
Hugs from Pena Family!!!

CureSMA4Stella said...

Thinking of your sweet family and praying for strength and understanding . . . and of course patience (is there such a thing??). I'm sorry to hear you are back in the hospital though . . . we are hoping we don't join you there, even though it would be nice to see you.
Sarah and Stella

CureSMA4Stella said...

Thinking of your sweet family and praying for strength and understanding . . . and of course patience (is there such a thing??). I'm sorry to hear you are back in the hospital though . . . we are hoping we don't join you there, even though it would be nice to see you.
Sarah and Stella