Thursday, April 8, 2010

Latest hospital stay

Abigail had been admitted to the hospital on Tuesday, April 6. She wasn't gaining weight and for a baby her age, that is considered loosing. She weighed ony 7lbs 13oz. She was admitted for observation. I had to continue to feed her every 3 hours, 95 ml. She gained 5 oz the first night and then 7oz the next night. We were able to go home today, Thursday. The doctor said she was gaining weight and was doing fine so there wasn't much for them to do. She was sent home on a pump for night. She gets the pump from 8pm to 8am. So I only feed her at 11, 2, and 5. This will help her gain weight. I've been having trouble waking up at 2, 5, and 8 in the morning for her feedings. She's so full of smiles and giggles :) She is the love of my life, along with her brother, and my amazing boyfriend :) It's time for bed for me. Hopefully soon, Abigail's ssi will come through and I will be able to afford a car to get around.

The beginning

So I'm just starting this blog so I will have to back pedal a bit.

Everything started when my beautiful baby girl, Abigail, was born.

December 14, 2009:
I had a c section this morning at 7:30, my baby girl was born at 7:55 weighing 5lbs 15oz and she was 39w2d. They took her to the nicu for observation because her oxygen was low. She has been admitted to the nicu and is on a ventilator to help her breath. She has low blood pressure so they're giving her dopamine. She has pneumonia, which just means she has a lot of fluid in her lungs. They noticed that she may have water on the brain, her arms are short for her body, and her ears are lower than they should be. All of those have led them to believe she may have a chromosomal abnormality. I saw her in the nicu earlier and it was horrible, I couldn't help but cry seeing my baby girl like that ... she has hoses coming out everywhere. My mom has been so insensitive about the whole situation. I didn't want to see Abigail just yet because I know how upset I would be, and my mother told me I have to see her. When we saw her and the nurse was mentioning she may have down syndrome and my mom had the nerve to say that if she is special needs, at least she'll get ssi ... sorry but I'm more worried if my baby girl is ok. I feel horrible. She won't be out of the hospital for at least 7 days. I have to go home empty handed :( and somehow, explain to my son that his baby sister won't be coming home just yet. Sorry, mostly had to vent.

I had thought she would only be there for a couple days, but that changed.

December 15, 2009:
She got the breathing tube taken out today. She's looking much better but her blood pressure is still low. There will be a geneticist in in a few days to see her, her tests will be back in a few days. She wont be able to come home for a couple weeks :( but she's getting better.

December 16, 2009:
I just got home from the hospital today and she's still doing good. She needed more oxygen so she's in an oxygen tent and has a breathing tube on her nose. She is slowly weaning off the dopamine so her blood pressure is up a bit. She's my little fighter.

Update: She's doing so much better!! Her blood count was low and she had to have a blood transfusion. That helped her blood pressure go up and they are hoping to get her off the dopamine tonight. They are taking the nose prongs out so she can breath on her own, she will stay in the oxygen tent though. She had two small tubes in her belly button but now she only has one. She had a head ultrasound that came back normal so that's good. Her respirations have been staying at 60 which is where the doctor wants it to be. They're going to try and feed her tomorrow so I'm so glad :) I've been pumping for her since my milk already came in and that is going great, only had her Monday and I'm already getting 2oz per breasts each pumping. I got some picture today and her face doesn't look as swollen.

She's under the photo therapy lamp for jaundice, they just started that last night.
ETA: Her name is Abigail Nicole. Her weight is now 5lbs 12oz as of yesterday.

Update: Not much new just yet. She had a second head ultrasound that came back normal. She has a valve in her heart the is suppose to close but hasn't just yet so they're watching that. The tube in her belly button is now out so that's great. None of the chromosomal tests have come back yet. They tested her thyroid and she has hypothyroidism so they started her on medication for that. Still haven't held her, but hopefully soon. They've taken her off the dopamine twice but her blood pressure drops so she's still on it, they're just slowly weaning her. I don't have an estimate of when she can come home, I just know she needs to be off the dopamine, taking a bottle, in an open crib, and off all oxygen. She'll be a week old tomorrow and I have yet to hold her :( I did hear her cry a little today, first time since she was born. I couldn't help but laugh at her today, she kept making faces and smiling :) I noticed that on her upper lip, it's flat instead of having the little indention.. not sure if that means anything. Hopefully her test results will be back soon. I was hoping to have her home before Christmas but I'm sure that's unlikely. We see her every day we can. I'm so proud of her :) She's doing great and improving faster than we thought she would. Even her doctor thought she would be on the ventilator for a couple days longer than she was. I haven't taken any new pictures, she's in the oxygen tent still. I'll keep you all updated and thank you so much for the support.

UPDATE: She's off the dopamine and doing good. She is on her last dose of antibiotics, and she has an iv in her head. I would have been able to hold her but the nurse took too long and we had to leave before I could :( But I'll be going back up Thursday and holding her then :) At least I get what I want for Christmas, I get to hold my baby girl :) They got some really good pictures with her eyes open and a cute little bow in her hair. We talked to the genetic counselor today and she said she doesn't think she has down syndrome, but there is something.

UDATE: I've been so busy with Christmas. Which was the best by the way :) Except for not having Abigail there, it was still awesome. I didn't get to hold her until yesterday. I went up there on Christmas Eve and just about all the nurses were at a Christmas party across the hall and then I couldn't make it on Christmas. We went to my sister's apartment for Christmas, and it snowed and her apartment's driveway/parking lot was covered in ice and she lived at the bottom of a hill so we got stuck there for a few hours until enough of the ice melted. But I got to hold her yesterday finally and it was great :) She is so tiny. She fell asleep and started snoring :) I held her for an hour and didn't want to put her down. She's being fed through a feeding tube, she was choking and coughing when they tried to feed her through a bottle but they were going to try again last night. She's also in an incubator now, which her nurse said is a step up so that's good. She's still on oxygen, not as much and it's just through a nasal cannula now so no more oxygen tent. She's getting better and will hopefully be home soon :)

Latest Update: So Abigail has been moved to an open crib! She can regulate her own body temperature now. She's finally off oxygen too! She's improving so much :) The next step is for her to be taking all her feedings by bottle and she has an occupational therapist that sees her and works with her on the bottle so hopefully she'll be taking bottles soon. :) I'm so happy, she's so close to coming home. The valve in her heart closed and the doctor thinks that was what was causing her blood pressure and oxygen problems, because once it closed she was able to control them both on her own :) She's always asleep when we go see her so it's great that I caught her with her eyes open :) She doesn't even look like the same baby when she was born :)

Update: I got a call from the Doctor today, her chromosome test came back and it was normal so Monday they will be doing a more detailed test of her genes. They are also going to test her other hormone levels to see is any of them are low like her thyroid hormone. They did an x ray while she was taking a bottle and it was abnormal. It starts to go down the wrong pipe into her lungs. So the occupational therapist is working with her on bottle feedings and they're going to do the x ray again in a week. Other than that, everything else is good. Hopefully we'll know what's wrong with her soon. Anyway, I'll be going to see her again tomorrow :) Gotta let her daddy hold her, he's been letting me hold her so that we can bond but I know he wants to hold her too.

Update: Sort of an update. We have a meeting Thursday with the neonatologist, social worker, and therapist to discuss plans for Abigail and all the tests they've done. Nothing new really. She's still on the feeding tube but they are working with her on taking a bottle, she does fine for the first 10 minutes then gets tired and it ends up going down wrong. We saw her yesterday and the occupational therapist was there and was showing us how she works with her. She lays her on her side and gets her to take a pacifier and when she sucks on it she uses a syringe to put just a tiny bit of formula in the corner of her mouth. She said she has high muscle tone in her face so her mouth is real tight and her tongue sits far back.

UPDATE 1/13: Just a small update. She still isn't taking a bottle well, she isn't able to coordinate suck, breath, swallow so they are considering surgery next week to put a feeding tube in her stomach that is a little more permanent so hopefully she'll be able to come home. But for the bad news, I'm having to take care of her alone now, my SO decided to leave today.

UPDATE 1/14: We had the meeting today. I don't really remember everything. The main thing is they will be scheduling surgery either Tuesday or Wednesday to put in a G Tube and they will start feedings about 24 hours after and she will be able to come home about a week after her surgery :)
Okay, so I remembered some more stuff lol. She has a defect with her first chromosome, we're just waiting on the results of the genetic test to know what specifically. One of her optic nerves is smaller than it should be, she has a lesion on her heart but it isn't causing any problems yet. I'm so forgetful.. let's see... Well that's all I can think of for now, maybe more later lol
Update 1/16: So surgery is scheduled for Tuesday mid-morning, no time yet. She weighs 7lbs 6oz now so she's putting on weight finally :)

UPDATE 1/19: She had her surgery this morning. I got to the hospital at 7:30 and got to hold her for a bit and she went down for her surgery at about 9:20. It didn't take long. It went great. They have already started feeding her with it. They will be starting out with 32ml every 4 hours and increasing by 2ccs every feeding until they reach 75ml. If she tolerates the feedings well, they will increase faster to get to the 75ml. Her genetic test came back while she was in surgery.
I can try to make sense. We all have 46 chromosome, 2 of each. Each chromosome has two parts, the top half, p, and the bottom half, q. On Abigail's first chromosome, she has partial trisomy. A small portion of part q is duplicated and on part p. On Abigail, 31.1q to 32.3q are duplicated and are on part p.
The genetic counselor was searching to see if she could find any other cases of this or similar to this. So far all she has found is where the whole part q is duplicated, and those children don't do so well.
Back to feedings, if she is tolerating them well and still gaining weight and keeping her vitals up, she will be able to come home in a few days :) I have to go up tomorrow to learn how to do her feedings and to get more comfortable with it and then Friday morning I have to go up there early and learn how to do her medicine. I think I covered everything :) If you know more about the whole chromosome thing or the g tube feedings, I would love to know because I am clueless lol.

UPDATE 1/24: She's doing really good. They will be doing another barium swallow study Tuesday, and then we will get a day for discharge :) They said the end of this week or early next week. I got to do one of her feedings last night, it was really easy. It was only hard trying to figure out where to hold her tube so that the formula wasn't going in too fast or too slow. I will update once I know when she will be coming home :) I need to do a CPR class and then CBP for 2 nights. CBP is care by parent, if you didn't know that. I stay at the hospital for 2 nights and do all of Abigail's care and feedings so that I can get comfortable with it and the NICU nurses will help anytime I need it :)

UPDATE 1/25: She will come home Friday! I did 2 feedings today and it was really easy! The first time I did it with the nurses help, and the second time I did it all by myself :) I got to clean her button, it was easy. I'm going up in the morning for her feeding at 8 and to do her medicine and I will stay for her feeding at 12 and most likely the one at 4. Then I go back Wednesday morning for CPR class and then another feeding at 12. Then Wednesday and Thursday night I will stay up at the hospital and take over her care :) And she will come home Friday :) I'm so excited!
Here's her feeding today :)
She gets 75 ml total. I give it to her over a 20-30 minute period, so I give her 10ml then let her tummy rest, so that's why it's laying by her head lol. She loves her pacifier :)

Just a little update, I went for my CPR class earlier and stopped by to see Abigail. Her swallow study went great! She is still aspirating, but not as much. Before she could only get about 5-10ml by bottle and I was only allowed to give her bottle for 10 minutes, now, she takes 30ml by bottle and I'm allowed to do it for 20 minutes. :) That's a great improvement.
On another note, my sister's MIL stopped breathing and is being rushed to the hospital by helicopter. Her husband, Jesse, is currently in Iraq so he doesn't know yet :( She had surgery on her eye last week and the dr hit a nerve and caused her to be in extreme pain so she was on several different pain meds to control it, that may have caused her to stop breathing but we don't know.

We got to come home today :) She's been doing really good. My apartment will be ready next week and I couldn't be happier, the nurse wouldn't let me use my car seat because it smelled badly of smoke :( It's embarassing. (She gave me a new one) It's my mom who smokes and I'm used to it so I don't smell it. What can I use to get the smell out of all of our clothes?

She's doing really good :) She loves to be held and my son gives her kisses :) She's doing really good.
She's now taking between 50 and 75 ml by bottle, so she's doing a lot better :) I've been having fun dressing her up and making her little tutus :)

Update 3/20: I've been busy with the move. Abigail is doing great! She hasn't gained any weight so we've had to change around her feedings. Her thyroid has been acting up but it's fine. She's grown an inch lol She's still in newborn clothes. I don't have internet so I'm never on anymore. Just thought I would update everyone on Abigail.

This was taken from my Cafemom post so I have to search for exact dates. I will be slowly working on this blog to help my emotions out :) Even if no one reads it