Best day yet...

We are so thankful and grateful for today. Annabel seems to be tolerating her feeding right now. I don't want to get too excited as she has tolerated before then her tummy has rebelled. She is having 35mls of breast milk and 35 mls. of Pediatric Compleat mixed together. Today is the first day to have 5 feeds beginning at 6 a.m. and every 3 hours until she has had 5 feeds. We are feeding these by pump over a 30 minute time frame. Then we rest her tummy for 3 hours. She will then be fed on continuous feedings from 8p.m.until 4p.m. at 40mls. per hour. This is really a big jump for Annabel. Her tummy is larger (of course) but she isn't retching/gagging as of yet. They were able to turn down her iv drip today because she is having enough liquids. Yea!
Next, if today's cultures come back clean then she will be able to get off the amphro-B, that is the antibiotic that is very hard on her body. Her blood pressure begin dropping shortly after being placed on it. They are monitoring her continuously while on the amphro-b. If tomorrow the cultures are clean she will go back on the diflucan (antibiotic) and we can go home on this by IV antibiotic. YEA! She will have to be on this until the 29th of February.
Also, she will have to be on the vancamycin until February 25th. They have great concerns that Annabel can become vanc resistant. This bug is not responding to anything else, except furodantin but Annabel cannot tolerate this at all.
Annabel's echo that was done yesterday show no yeast growing on the valves in her heart. Yea!
She will have to have an eye exam before going home but they said they will round and do that by Tuesday, this is just precautionary.
The hope is that she will get her PICC line by Monday, latest Tuesday. OK, I wanted to go home with no line. This is probably not realistic, my goal now is to only do TPN at night. I am praying that she will be able to get enough calories via g-tube during the day. I am also praying that eventually she will be able to tolerate the volume to drop the TPN in the next few months. YEA!


According to the infection disease doctor the yeast that is getting Annabel each time is a whimpy bug. She said we all have it but it just gets a hold of Annabel due to her being on so many antibiotic for UTI's. One of the reason I am wanting the PICC line is that she didn't have any infections with this type of line and also that she won't have to undergo surgery again at this time.
I have to begin cathing her religiously again. I struggle with this because when her bladder works I want her to go by herself. The reality is that anything (even tiny amounts) left in her bladder is not good. There is good reason in both ways of thinking according to the doctor but not for Annabel's body.
I am really excited because word is getting out about Annabel and how well breast milk works for her. She hasn't needed any type of help via laxative, enema,etc. I feel due to the breastmilk. Our milkbank in Austin is so low they haven't been able to supply Annabel and I want to be patient and wait but I feel I can't if we are to be off this TPN. Also, I have always felt that there are so many benefits to the healing properties in breastmilk. So I will close with many praises for all this is being done for Annabel. Thank you so much to all for their thoughts and prayers for Annabel.
The plan is that if all goes perfectly, nothing unexpected, we will probably be home by Wednesday. When we first arrived when had some issues that made it seem like this admission was possibly going to be like the one in December. After maybe the 3rd day and us almost getting bumped from surgery to remove her line, due to a residents communication with another resident, I decided to get brave and call a meeting. I told them I wanted everything to run smoothly and that none of us wanted conflict. I felt if we all communicated with each other clearly, also I wanted copies of all labs and test results, and to respect each others thoughts and concerns. This has been a much nicer hospital stay. We will continue to use our home hospital and they will do all they can to treat us there, but when we have to be transferred for more serious issues I probably won't dread it quite as much. Another thing to add Praise for is all the doctors here. YEA!

New Look on the Blog...

A big thank you to Tara for giving Annabel's blog its new look. I loved the old one but it has almost 3 years so with her spare time here at the hospital so gave Annabel a new look.
Not much else to say. The amphro-B began this morning. We are praying for only a couple days of this terrible antibiotic. They are pushing her feeds and I am having to let Annabel's tummy show her what she can tolerate. She threw up during the early morning hours and missed two feeds. They are all about volume which is hard for me since Bella hasn't had volume before. One day at a time. Thank you for your comments and prayers.

Amphotericin B

Today has been good. We have seen more happy smiles more often and her dancing feet when she is happy. She has mostly tolerated three feedings today so far. Right now I am giving thanks for this day.
I asked the GI team today if they thought we were going to be able to bypass the terrible antibiotic Amphro B and they said they thought we would. They also said that was Infectious Diseases call. Well they have made rounds and Annabel cannot escape this antibiotic. I am so sick to my stomach because I remember all to well what happened to her just this past December. It is extremely hard on her veins. But it is overall hard on her body. As I said I am glad for today and how responsive she was. My prayer is that God will carry her through this treatment that will begin tonight and protect her sweet little body from head to toe, from inside to outside. Thank you for continued prayers.

A picture that says so much from today....

Today was the day I decided to say even though you are the doctor, I am the mother and sometimes I feel I know what is best for Annabel. They came in with their plan and I listened. I told them I understood that was their plan for the long term but that I wanted to focus on getting Annabel well in the short term and healing her gut the best way possible with the long term in mind. They kept telling me their ultimate goal was to see if she could come off TPN/Lipids and again I understood. But then I ask to speak and started with the fact that I am not medically trained or educated but that my gut is feeling like we need to stop TPN today, as in now. Before when Annabel was sick they would put her on IV's for hydration and she would be on that till she was well enough to eat. Sometimes she wouldn't eat very much, but she survived and eventually ate more. So yesterday after surgery again they began the feeds (20mls. breastmilk and 20 mls. pediatric compleat) every 3 hours including through the night. She shows some signs of discomfort but I am interpreting them as just fullness maybe that she isn't use to. She has not begun the retching/gagging that lead us to not feed and began the TPN dependant phase of her life. Now Annabel has been vomiting until yesterday but felt that was the infection/after surgery thing. So all night no gagging/retching and nothing when she is vented. So every 3 hrs. we give her a feed over a 20 minute time frame. Today they upped this to 30 mls. breastmilk/30 mls pediatric compleat over 30 minute period every three hours. Her tummy is obviously bigger than before but she doesn't seem that uncomfortable. Her fevers today are 100.4 and now down to 99.0.
There still are no sensitivities to the yeast as of yet. She has one clear culture but they can't really call it clear til there is no growth for like 72 hours or more, but I am going with it and calling this one day closer to going home.
My thinking about the TPN dependant vs. the feeds are that yes, she may have some issues with being comfortable with the feedings but with the central line she may not survive another infection according to the doctors. I realize yeast is serious but she pulls through each time. She may continue to fight these infections but I don't want to risk it any longer. Also her in the hospital they can't put her a central/PICC line as long as yeast is growing in her body. The TPN/lipids is eating away at every IV they put in so for now I requested take her off, just give regular IV liquids and push through with the feedings.
She slept forever this morning and we were a little concerned could she be getting sicker, but she awoke we bathed and then we took her to the playroom. We took her for a few spins in the car and she smiled so much (maybe not for the picture, but trust me she is so much better than this past week.
Thank you, thank you for your prayers. So many people are pulling for Bella and sending prayers her way. Thank you isn't enough but please don't stop for the new plan to really not go back on TPN. My thinking is that if this doesn't work and we have to then we can put a central line back in. But for now I am not saying we are TPN depandant and it feels so good.

Out of surgery...

The doctor just came by and said she did ok and they were taking her to recovery. We are waiting to go back to see her. Will update later when possible.

Take it out...

We have got to take the line out soon. They have her scheduled for tomorrow to remove the line. Tonight her fever is rising. T this point it is 104. They are allowing one more dose of Tylenol then nothing else. The can't give motrin due to bleeding. She is vomiting continuously since 6:00 and liver levels rising. They are fairly sure this is all due to yeast.
Thank you to those that have commented, the many text and emails. There have also been calls but I couldn't answer most of them due to doctors in and out and taking care of Bella.
Your words and prayers carry us through. God continue to take care of her for that we are sure. Will try to post more later about today's game plan.

Cultures back...septic again

We have been transferred to Houston and I must say it has been a long day. I am so frustrated and this is only day one in Houston. I am lucky that my daughter is here with me and will heip for a few days. We knew last night that her line tested very quick for yeast. Today the yeast is growing in her precious body. I am not crazy about this central line but in just two months we have had 2 yeast infections growing in the blood/line. My crazy head wants this pulled and not another one put in. But realistically she couldn't get enough nutrition to survive. So now we wait for the 3rd group of people to come try for blood for the 10th stick.

What is happening here?

No one is really sure what is happening. Annabel has basically been infected with something showing up in her urine since the beginning of January. She has been on IV's a few times and one on two antibiotic in tube then this past Thursday finished another one. So this past Tuesday when we were doing her labs we did a urine culture just to be sure. We thought she was fine. So Friday we got her urine culture back and here was the same bacteria as bad as it had been. By Saturday she didn't look well. She looked weak, vomiting little amounts of bile and with a fever that just grew as the day passed. We continued the Vanc. I was up all night watching due to the fever, vomiting, low oxygen levels. I knew we should have come during the night but since on Vanamycin felt we could try to manage at home. The vomiting worsened and the fevers were harder to keep down so I called the ER and was told a good time to bring her in. When she was placed in a room immediately she wasn't responding at all and you could only see the whites of her eyes. No matter how many times I called her name she didn't respond. As soon as the fevers came down she began to open her eyes. We on occasion were able to get a weak smile. So tonight she continues to shake when her fevers began going up and she vomits what little that is in her belly. They have switched to suppositories for fever and also for nausea. At this point the doctor (ER) is suspicious of the central line. They tested for flu, pneumonia, UTI, and her blood. They did ultrasound for some type of peri (something)abscess. This would be where the kidney is nestled in her abdomen. They say this would be rare if found to have it. If she is found to have this type of absess or if the central line is the issue we would have to transfer to Houston. We are praying that this new added antibiotic will do the trick. As she lays here with her eyes closed she squeezes them tight as if in pain but is silent. Her breathing is fast as is her heart rate as I am sure due to fevers. Please continue offering her up in prayer and that something will soon be know.

UPDATE: Her central line blood culture that was just drawn 10 hours ago is already growing YEAST. If anyone remembers back in December this is what happened and we were transferred to Houston. They are calling doctor now. Please, please pray!!!! The bug (fungus) is terrible and the antibiotic is considered lethal.

Fever 104.6

Annabel went to the ER this morning. She has been fighting a fever since yesterday. Late in the night she began throwing up and shaking. Mom thought that she could fight the fever off but it shot back up this morning. They are at the hospital right now so please keep her in your prayers.
Tara