Saturday, June 13, 2009

How I love boring...

Just to let everyone know it is still boring around here. For all out there who are not frequent readers, boring in my life is incredible. When I say boring in this sense I mean that nothing eventful is happening with Annabel. We are staying in, resting, playing and eating to put on the much needed pounds she has lost over the last few months.

I will post just a quick thought here. Remember this is only a thought, not educated or medically based at all. Since we have been home Annabel has not needed any oxygen or her bi-pap at all. I have hooked her to the pulse ox machine for most nights. She is having no desats in her levels. We noticed in the hospital she was not needed the machine and I attributted this to the fact that she wasn't sleeping soundly with all the noises from PCU. Since we have returned home she is sleeping 11-12 hours nightly, not waking unless her diaper is wet. (Oh, how I love wet diapers) She only makes a small squeak and I run to change her so she really never wakes fully. Here is the uneducated, not medically based thought. Could Annabel have been so full of gas that this was pressing on her lungs, that was compromising her airflow or how much her lungs could have expanded. We have to remember her diagnosis was way too much bowel that just stayed full of air and lots of food that couldn't move through it.
On a couple ER visits the doctor commented on that she was so full of gas that her lungs could not fully expand. I had mentioned this to pulmonary and GI but it was always shot down with a no way! If you could see the size of her flat little belly now, it might make more sense. So for whatever the reason, I am so very grateful and thankful that the surgery has done well on her gut and that if this is contributing in anyway to her not needing oxygen or her bi-pap machine I am so happy.

If this pattern continues I will do research and see if anyone else has experienced this. It is a shame to place a child on bi-pap if it would not truly be needed. I guess a great measure would be to have a sleep study done again but since we can't get the follow up until Aug 26th, I guess we will just wait. I will try to follow up with some pictures today.

Disclaimer: Please don't base my intelligence totally on this post. While being so bored my mind thinks way too much about why some things are happening or not happening. She I told you I was bored!!!!

Wednesday, June 10, 2009

We are home...

See no pictures and not much to report! Oh how I love BORING!!!!!!!!!!! We all know the Great Physician took care of Annabel, but it was not without all the prayers that were sent up on her behalf! Thank you from the bottom of my heart!

Tuesday, June 9, 2009

Day 5 Post Op...

Ride in her wagon...

Well Annabel partied until 5:15 a.m. this morning. Due to the epidural being removed due to swollen and red at the point of insertion it had to be removed. I think the pain medicine had the opposite effect on her. She also began urinating with the catheter in, so this was removed today. She became tube, wire and line free today. She was also allowed to have baby food for supper today. I am trying not to get my hope up, but I would love to go home tomorrow.

As you can see Annabel went for a walk on the floor today in the wagon. Tara came and brought me breakfast and allowed me to take my shower. So then Annabel got her bath and freshened up. She loved walking or riding should I say in the wagon.

Around lunch a very good friend, Rita, who was our neighbor at our beach house came to visit. We sat and talked and you can see Annabel took to her right away. She works right down the street and she may come back at lunch tomorrow.

Just a good day free to hold Annabel and not worry about pulling anything out. All functions seem to be working well. I would be lying if I were to say I am excited at the prospect of not cathing 5-7 times daily. I do pray this procedure (even though somewhat temporary will work for longer than expected). Also her tummy has been fairly flat for several days now. Longer than I can remember in a good while.
Kathy thank you for the call this evening. It is great when you comment but so good to hear your voice and get to talk with you.

Visiting with mommy's friend, Ms. Rita...

Monday, June 8, 2009

Day 4 Post Op...

Fresh after her bath, winding down with a movie... (ha, ha)

Heena, another one of our sweet nurses... Lost IV #3...
Michele, my milk mommy and me sharing some love...

Don't think I just looked at their beauty...

Today was a fairly good day. She had a few tummy aches but probably the addition of more milk. She was getting only 2 1/2 oz. every 8 hrs. and now they have increased it to 4 oz. every 6 hrs. The IV was not good any longer this evening so we are going to try to give her pedialyte in between feedings to give her liquids. They will probably make a decision when the c-diff results are back. Hopefully tonight or in the morning.

They will probably turn the epidural off tomorrow but leave the catheter in her back until later tomorrow or Wednesday. I am thinking that maybe by tomorrow afternoon she maybe allowed some baby food. The doctor mentioned a chance of going home Wednesday if everything went right.

We have also been moved out of PCU, which we loved all the nurses there! But we already have very sweet nurse here on the 11th floor tonight. I think there will be less noise at night and maybe we can make the room a little darker. She has been sleeping very lightly. Last night she wanted to party until 3 a.m. I began to give out around 1:30, so I slept in this morning til around 8 a.m. She didn't wake until around 10 a.m.

There is a sweet picture of Michele and Annabel, she is Annabel's milk mommy from this area. Not only did she bring Annabel some goodies (breastmilk) but she brought myself and the girls some beautiful cupcakes from Ooh La La. No, of course, I didn't just eat them for my lunch, no way! Michele give this beautiful gift of her milk to Annabel. She lost her precious, sweet Vivian in August. She also asked if there was anything she could do, or pick up for me or just run me around the block to get out. (This was tempting!) Thank you Michele for coming to the medical center and taking most of your day to keep us company.

I know I get tired sometime of getting on the internet, or just making a post. But I know it is everyones prayers that have carried Annabel thus far. Also, if Annabel's story give anyone hope then it is reason to keep on. But all of you out there, who comment, text, email, call or just read and pray, thank you! I probably have not responded back to you as I should and for this I am sorry, but know that you not only have carried Annabel this far but also you have carried me!

Sunday, June 7, 2009

Day 3 Post Op...

Is her smile contagious????

Today has been a really good day for Annabel! I am so thankful that she is more awake and smiles whenever we ask. She interacts with the nurses when they come in to take care of her. So as far as the praise go, she has less BM's, they removed her ng tube that was allowing anything in her tummy to come out, they began 1/2 of her amounts of breastmilk three times daily. She is smiling, clapping with her hand that is without an IV, watching movies, and reaching for bubbles.

Praying that she will continue to heal in good time, that she will be able to tolerate her feedings, the temp that she had today will be of no concequence, that when the foley cath is removed she will be able to urinate fully on her own.

I think her progress is everything that has been expected thus far. Besides her healing from the bowel surgery, hopefully we will master this bi-pap issue and be on our way home. Thank you for your continued faithfulness and the love you send our way

Surprise Visit from Ms. Edie...