Saturday, June 6, 2009

Day 2 Post Op...

I am going to try to make this quick so if there are errors just forgive me. Her night of pain was ok, we didn't give any more morphine. She is still on catheter with epidural in her back. They say this will stay a few more days. She did begin her desats in the night on a fairly regular basis, the had to give some oxygen all during the night, but due to Leslie our wonderful night nurse, she handles everything.
They also realized this morning that her output was greater than her input so they had to begin saline bolus for a boost. But both Iv's site blew and the search for another one lasted until this evening about 4:30. We were also waiting for a BM as a sign that her gut is waking up. Well she just had her ninth one a few minutes ago. There is some thought that it is too much. It also has a very foul smell so mind can't help but wondering about c-diff. I just know that it can't be.
She still slept most of the day, but did have some really good eye contact for about 20 minutes. I really think tomorrow will be a good day of Annabel making some good progress.
Everyone has been so kind asking about me getting rest, but I do at this point feel rested. When she sleeps at times I crawl right up beside her and sleep. The nurse pointed out that her heart rate decreases when I do this. They are sure this is high due to the pain or just discomfort she is experiencing, also with some early dehydration.
Mel and my oldest son Derek came up today. The twins stayed, brought me lunch and they attended the Astro game. Tara went home to take care of her dogs and will return Monday. Tyler is off with his unit doing some training.
We also had a visit from Katie and Annie as they were returning from Galveston.
Some have asked when we would go home, and the thought was about a week. A lot is depending on when she is able to take feeds and tolerate them well. Also, I do think they are going to try to make some adjustments to her bi-pap. We need to be successful at this, if not it will continue to affect her heart.
So much for this being short, I love you all and am so thankful for your encouraging words and your PRAYERS!!!!!!!!!!!!!

Fresh after my bath...

Derek telling me about the Astros game..

Telling her g'nght before returning to the hotel ...

Good Night, and thank you for praying for me...

This is Leslie, our night nurse and this is a huge reason why I feel so rested...

Friday, June 5, 2009

Slow and steady wins the race...

One of the blessings of Trisomy 18... beautiful eyelashes!!!

I am becoming very anxious and wanting her to wake up and give me one of those priceless smiles..I continue to be very grateful for the epidural. I think it was after 1:30 a.m. when we requested some pain medicine. When you have an epidural, you are assigned a pain management team. They are the anesthesiologist that make up this team. Annabel doesn't cry very much and she endures much pain. You can tell by how she grimaces and furrows her eyebrows. So I would wait for this to happen, then she would cry out in pain and then the nurse would come in to check on her. We then would call the doctor to request pain medicine. Each time it took a bit for him to come up to the PCU unit. By this time Annabel had cried and was exhausted and I was able to snuggle with her in the bed and she would fall asleep. He would arrive and say "Well she doesn't appear to be in pain." The nurse and I would both verify that we had waited a while prior to calling him and then it took him a bit to arrive. He would refuse and be on his way. They have said with a child it is harder to know if the epidural is actually working because she can't respond and tell us. I do believe it is definitely working but I do think sometimes she becomes very uncomfortable that she needs just something to take the edge off. Well the doctor was not having any of this. So when pedi surgery made their rounds they notice her not being comfortable and ordered the morphine. The team came behind and cut the dose in half. That is just how it works here! We didn't give her the dose until around 3 p.m. today. It did really wipe her out and she did have some slight desats due to her sleeping much deeper. She then became nauseated and with the tube down her nose into her stomach she began to vomit. So we have let her lay and rest most of the afternoon. She is still in la la land...zzzzzzz...

We again are so lucky with great nurses. They are supportive and very informative in helping me understand what is going on. No only are they really good at their jobs but it is obvious that they have a huge heart for nursing.

Tara was the first one that got to hold Annabel today. I was a little nervous but the nurses encouraged me that she would be fine. Carly and Colette are also here for several days with Tara staying in the hotel across the street. They have been a huge help getting us food and snacks. Tara brings me Starbucks each morning for breakfast. I think I am becoming quite spoiled. Also, Colette has been standing by to give me neck rubs on several occasions to relieve my stress. Ahhhhhhhh....They have also been great company for me and keep things light. I know when Annabel is feeling better they will be a great source of entertainment.

We had a surprise visit from some friends of ours from home. Laura and Larry came to Houston to pick up furniture and stopped by with a Big Bird for Annabel and a bag of snacks for me. I can't imagine how much I will weigh when we are released.

Tara holding Annabel for the first time today and one of our

sweet nurses, Mary Ann

Sleeping or wakey???

Surprise visitors, Laura and Larry

Thursday, June 4, 2009

So far, so good...

According to the urologist and the pediatric surgeon she did well. The anesthesiologist also was very pleased with how she extubated. From what they said I don't think we could have expected anything better. Urology was not a big procedure and he says time will tell if this will work. Pediatric Surgeon describe as too much colon and that she was very cleaned out and that is important. He said we will need to watch over the next couple days to see how her tummy responds.

When I speak her name she tries to open her eyes and look at Tara or myself. She rest well if we just leave her alone but when we try to make her stir she seems to become nauseated. I will be updated probably daily but just wanted to let you know the prayers were heard and answer as of now! Thank you all very much!

We are on the PCU and the number is 832-826-0719. We are not suppose to use our cell phone in the room. I check my messages often is you wish to leave a message I can call you back or just email me.

They took her back...

They didn't take her until about 1:30 p.m. She was very happy and smiling at everyone. I have to say I love all of the doctors involved. They were so patient and willing to discuss everything. They are going to still do the general anesthesia but also an epidural for pain management. They want to lessen the amount of narcotics they give her since this will play a large part in her apnea episodes and post-op recovery. They anticipate the surgery to take about 3-4 hours then to recovery.

Admitting and prep work...

They didn't get a room until around 6 p.m. so everything is running quite late. They have just begun the bowel prep and it is 12:30 a.m. From what they explained it is what we would drink for a colonoscopy but hers is going straight into her g-tube. She will have to go well over 12 hrs. without any food or formula so tomorrow in the morning will probably be trying for her. Even though she isn't a big eater, she will be a little uncomfortable. Probably not as uncomfortable as after the surgery.
Tonight the girls brought me dinner and we all just laughed and hung out with Annabel watching her Veggie Tales. I will post the pictures from tonight since this maybe the last smiles for a couple days. Thank you for all your calls, text, email and comments on her blog. Not for one second do I doubt she is truly covered in prayer.

Tuesday, June 2, 2009

More surprises...

Let me start by saying it is never, I mean never fun to go to the hospital. But I guess if you have to go, then this is the way to go.

Last night I was going to knit night in honor of this sweet girl named Allie who is graduating. Most of the ladies in our group are just that ladies! But Allie is 18 years old and such a breath of fresh air. We will surely miss her sitting there in her corner of the couch with her sweet smile. We may have to take our knitting on the road to College Station. Ok, Allie we would ask first I am sure! After everyone gave Allie her gifts, then Rainy (owner of the shop) presented me with a gift. Actually, it was another gift for Annabel. The ladies in our knit group all knitted Annabel a square with a heart in the center of the square. Also, there is a butterfly sewn on the blanket on the corner of one of the squares. This blanket is so soft and snuggly! I bet I will be snuggled up right next to her under her sweet blanket that are made with so much love.

The Quilt...
Then remember my friend Lisa who has 6 little precious hospital gowns made for Annabel, then her seamstress who made Annabel a sweet rag doll with 2 pairs of matching P.J.'s and two matching hospital gowns??? Well today I received a call from Lisa saying there was one more surprise. So this evening Annabel, myself, and Tara went to Lisa's house. Gramma, a.k.a. Mrs. C, a.k.a. Lisa's neighbor, decided to make Annabel a quilt with the leftover fabric of her gowns. I was so glad I brought Annabel with me as Mrs. C had not seen her in a good while and couldn't believe how grown up she has become. The quilt is beautiful and so colorful. It touches me that they all chose something to do for Annabel. All of the children in the photo with Gramma, a.k.a. Mrs. C are not Lisa's. They are friends of her children and Annabel loved all the attention and activity. Also, for the record Lisa is not in any of the photos. She would not allow me to take her picture. I am going to research in my picture history and see if I have one. I'll show her!(JK)

With all this fun, the fact is that we will be leaving tomorrow to be admitted to the hospital. All these fun things have served as a great distraction, since I can tend to worry. I know it is totally out of my control and not in my hands, Thank you, Jesus!

Sunday, May 31, 2009

Annabel's new hospital gowns...

Well I think we all know that Annabel has many angels watching over her. Tonight a very sweet friend, Lisa called and said she had a surprise for Annabel. When we arrived she presented Annabel with six, yes six new hospital gowns. During Annabel's last hospital stay at our local hospital, I made the comment on the blog about how her yellow hospital gown made her look washed out. Lisa is always wanting to help us in anyway she can and jumped on this comment I made and came up with these precious, colorful gowns. She found a seamstress, picked up the fabric, requested the hospital gown to copy it (ties and snaps included for IV purposes), and even bought her matching bows for each one. I guess if we have to be in the hospital, we will sure be the cutest, most colorful patient in the house, right? I don't know the seamstress name so I can thank her and out of respect for Lisa' privacy I won't mention her last name. But a huge Thank You for this sweet gift for Annabel and myself. Can you see me each day giving her bath and then deciding on what precious gown we will be wearing?

Also, in one of the pictures Annabel is sitting on a beautiful blanket that Rainy (a friend and owner of our local knitting shop) made for Annabel. It is super soft and cozy for Annabel to have with her at the hospital. Again while I was at the knit shop knitting with friends I made the comment about how I love to make Annabel's hospital bed colorful and more like home. Rainy took off with this comment also. I have to watch what is coming out of my mouth. But a huge "thank you to Rainy for the time she took and the thoughtfulness that went into making this beautiful blankie.

I do know that Annabel touches many peoples lives and for this I am grateful. Also for all the friendships Annabel has brought into my life. There has been some names that I have not seen before, or that they have commented they have read the blog but not commented. They have said some very sweet things and I just wanted to make sure that they know how much their prayers and support are appreciated. We all continue to know that Annabel is still with us today because of God's mercy and love. I can tell you that I have done nothing to deserve this but she does make me want to be a better person and do better things each day. Do I fall short or right on my face, almost daily. It is also due to all of the prayers that are offered up on her behalf. I continue to say this because I don't want anyone to think that I take it for granted for one second. Annabel may not have a voice but I know if she could talk she would shout a huge "Thank You!" For now we will just look at her smile and let it speak a million words of Thanks to everyone.

Just wanted to add some pics of this weekend. Sunday evening we went out to watch my oldest son Derek play baseball. It is a men's league 25 and older hardball league. We enjoyed watching him play when he was younger and now get to watch him again. The biggest differenc is that all the parents are not yelling at the coach like when they were younger. So it is a relaxing way to spend a Sunday evening. He loves sports and it keeps him strong and healthy.

Tyler also came by and brought Annabel out to sit on his murdercycle, excuse me, I mean to say motorcyle. (Please don't take this personal to all the motorcyle enthusiast out there). Just as his mommy, I worry more about the other person than I do about him. He loves to ride so I will just pray that he be safe. Also, I promise Annabel was not and will not be riding any motorcyle ever! Her hair was not acceptable for photos, so therefore, the doo-rag (sp). Yes I know that it doesn't match, but I don't have doo-rags just sitting around.

Lastly, this weekend Annabel modeled for the organization called ARC. They had a dinner and syle show with all its memeber modeling or waiting on table. It was a very nice night and the food was excellent. She was not feeling so great (tummy) so we had to ask to be first so we could get off the stage and put our jammies on. Of course, the minute she saw her teacher she was all smiles. So guess what, next year her teacher get to walk her out unless Annabel decides to walk before then. The outfit in the picture was the one she modeled from Dillards. This is Mrs. Ann, her teacher in the first picture. The second is of myself and Annabel. She didn't smile the whole time unless she saw Ms. Ann.