Friday, November 27, 2009

My Christmas Present?

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written November 27, 2007

The nurses seem to think Autumn will be home sometime before Christmas! I was just telling KJ that I thought she might be home within two weeks. I hope I'm right, but before Christmas is awesome too. She's still breastfeeding well but only drinks half of a bottle (they give the rest through her NG tube), I hope she gets more from my breast.

Wednesday, November 25, 2009

Breastfed

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written November 25, 2007

Don't have too much time but here's a quick update. I breastfed Autumn for the first time yesterday! It was sort of on a whim that the doctor let me. I breastfed her for 2 feedings at 3pm and again at 6pm. She hadn't even gotten a bottle yet. They're supposed to give her a bottle for the first time today. I'm going there tonight to give her a breastfeeding at 9pm. So hopefully once she gets up to 8 feedings a day by bottle or breast she can come home. They haven't said that is the only criteria but besides maintaining her body temperature well; which is what she is also currently working on, I don't know what else there is.

Wednesday, November 18, 2009

The waters are calm once again

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written November 18, 2007

Autumn has been doing great the past few days. She is on vancomycin and completed 3 days of gentamicin for the Staph Aureus infection she had. They're not sure if it was MRSA or not so they treated as if it were MRSA. (Methicillin-Resistant Staphylococcus Aureus). I guess there are many different Staphylococcus Aurei but MRSA is the one that does not respond to antibiotics like penicillin and ampicillin, that is why they used vancomycin. The only other medication she is on is caffeine for heartrate drops which is typical in preemies.

We had a scare the other night as she had a hemapositive stool (meaning they found blood in her stool by testing it, not blood you could see). So they stopped her feeds immediately and did x-rays on her belly. Everything looks good so they started her back on breastmilk yesterday. She was up to 25mL but since they stopped, they're starting up again at only 5mL. She was also up to 3lb 6oz but as of yesterday lost an ounce and is now 3lb 5oz. Hope she tolerates her feeds well so they can increase them quickly so she can gain weight again. Friday afternoon when I was there I got some great video of her, she was awake and alert and sucking on her pacifier with great vigor. I think she's ready to breastfeed but their guideline is that it's too soon until she's 34 weeks. She's 33 weeks as of yesterday so one more week and we can start learning to breastfeed together. I just started a prescription called Reglan yesterday. A friend of a friend recommended it and lactation also told me about it. It seems to be working already. I was down to pumping an ounce at most from both but now am up to 2-3 ounces per pump session. In the last week I've also increased my pumping during the day to every 2 hours. I can't wait until she's exclusively breastfeeding so we can feel somewhat normal and I can say goodbye to my much loathed breastpump! You pumping moms know what I mean.

I guess the next goal is her weight and feeding and then she can come home? We will see how it goes. They still won't give us any sort of "estimation" as to how long she'll be there. They have a canned statement, "it's all up to her, she's the boss".

Originally written November 18, 2007

Sunday, November 15, 2009

Bigger Paci

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Just wanted to share a picture of Autumn enjoying her bigger pacifier. Also attached an older pic of her with her teeny paci.

Originally written November 15, 2007

Saturday, November 14, 2009

Blindsided.......

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written Nov 14, 2007 09:27pm (EST)

So I've been thinking a lot about the "isolation" room that Autumn is in and how they will keep her there for the entire duration even if she eventually becomes MRSA negative. I asked the nurse what the results of her MRSA test were this week and she said, yesterday it was negative. So then I was working myself up to talk to the doctor about getting her out of there ASAP. I knew it was a long shot but the isolation room was full and if Autumn was now negative and there was a new baby that became positive, wouldn't they need the room?? I asked to talk to the doctor and started with some general questions about breastfeeding and her nasal canula. At some point, he indicated she was sick. I assumed he meant her UTI, but he went on to say she was "septic", and he said it like I knew what he was talking about. So I was like wait a minute, what do you mean septic? He said she had MRSA infection in her blood. I asked when they found this out and he looked in her chart and said it was Monday they found it. I told him that we didn't know that, and that we were only told she was MRSA colonized and not infected, and that the infection was a UTI. He said, well yes, it started as a UTI but the cultures came back that she was blood infected. He and the nurse showed no indication of surprise that I hadn't been informed of this and here it was Wednesday. On a good note, he said she was doing very well and seemed to be fighting off the infection. The last 3 days I've been holding her and she has seemed fine, I was ignorant to the fact that she was sick and I hadn't noticed anything except that she was having to be back on nasal canula and desatting a bit here and there.

How do you let the staff know that you're the "mom" without being a pain in the butt parent they don't want to deal with but letting them know that you want to be more involved and have some sense of control?

I'm still frustrated with the isolation room. One of the policies that goes along with being in this isolation room is that I cannot bring her anything from home. That means no blankies, no pacis, no hats, and no clothes for when she can start wearing clothes.

I know all these policies and actions of the nurses are in the best medical interest of Autumn but sometimes I think they forget that she's a baby who needs her mommy and I'm a mommy who needs her baby!

Friday, November 13, 2009

Just a UTI

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written Nov 13, 2007 12:06am (EST)

Turns out the infection they were looking for turned out to be a UTI. They're keeping her on the vancomycin for 10 days. Now that she's been "tagged" as positive for MRSA colonization, she has to be in isolation for the rest of her stay at the hospital even if she comes back negative for MRSA next week. Isolation means she's in a room with 5 other babies who are positive for MRSA colonization or even have MRSA infection. I sort of lost it tonight when we were there. I think I was just overwhelmed with stuff. When we went to her room, it was empty cause she had been moved. So then they show us to the "cooty" room as one of the nurses called it. I used to pump next to her isolette in our semi-private room but now I had to go pump in the pumping room which is in another area. So I left to do that while KJ visited with Autumn. My milk supply has been stressing me out cause it is dwindling and I only pumped about 3/4 of an ounce and as I was walking out of the pumping room I saw a nurse handle a baby pretty roughly as she changed his diaper, the baby was crying and red faced and the nurse seemed frustrated. So when I went back to see Autumn, I just started crying and KJ couldn't figure out what was wrong. I couldn't talk without crying harder and I didn't want the nurses to see me. I've been feeling real guilty about only being able to spend a couple hours a day with Autumn and now I was realizing she needs me more now. When she was in the semi private room, it was just her and one other baby with one nurse. Now she's in a room with 6 babies total and 2 nurses. It just made me realize that I'm her mom and she needs me. I know the nurses do a great job and take good care of her but they're not her mom. So I'm trying to figure out how to spend as much time as possible at the hospital but that means being away from my son who just turned 1. The guilt never ends.

Sunday, November 8, 2009

Back on CPAP, positive for MRSA, Spinal Tap for Meningitis. Can you say overwhelmed?

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written Nov 08, 2007 02:50pm (EST)

Yesterday KJ and I were driving to see Autumn and we got a call from her nurse. She said "it's not an emergency just want to update you. Autumn's been having some A's and B's (apnea-when she stops breathing and bradycardia- when her heartrate drops) so we put her back on CPAP, she's probably getting tired out." Ok, no problem we thought, we were kind of prepared for that possibly happening. At least she gave her lungs some exercise. So then when we get to the hospital after almost an hour drive, the nurse tells us I'm sorry but after we talked the Dr. came and told me she tested positive for MRSA. She's only positive for being colonized, not infected. So she's on contact isolation. The nurses/doctors have to wear a gown/gloves when they touch her. Ok, so we think still not a huge deal, MRSA colonization is very common, this doesn't mean she's infected. The Dr. spoke with us and said if she does become symptomatic of an infection, they're going to start her on heavy antibiotics right away. Apparently, as many of you have seen in the news, MRSA doesn't respond to penicillin so they would have to give her vancomycin, a very strong antibiotic. Then about an hour after we get home from the hospital the Dr. calls and says her CBC (complete blood count) came back and she had some elevated C-reactive proteins which is indicative of some sort of infection going on. They started her on the vancomycin right away in case it is MRSA. They said they'll know for sure if she has a blood infection on Fri morning. She also got a blood transfusion yesterday cause she was looking pretty pale and because of the A's and B's. This time, her transfusion was from my brother's donated blood. Pretty neat. I went to visit her again last night and she looked better but they didn't want me to hold her cause of all the poking and prodding all day. That was fine, I just put my hand on her back and read a book next to her isolette for 1 1/2 hrs.

Today we went to visit her and she looked about the same. We talked to the Dr. and he said most of the cultures came back negative for infections but he hasn't gotten them all back. He says even if there's nothing related to MRSA, she seems to have something going on. So she's going to get a spinal tap today to rule out meningitis. They also took an x-ray of her stomach to make sure everything's ok in there, I assume to rule out suspicion of NEC? The x-ray looked good but they're going to do another one today or tomorrow. Not sure why. I never think to ask the right questions when I'm in front of the Dr., probably cause I was a little overloaded. They also did an echocardiogram but the results of that aren't in yet. The nurse said the unofficial word from the ultrasound tech was that everything looked ok but we'll know for sure later today or tomorrow. The Dr. said if he finds no bacteria to treat, he's going to keep her on antibiotics for 10 days to be sure he rids her of whatever is bothering her. I guess we will be keeping our private room for a while longer, and after everything was looking so good. I'm sure she'll still be fine, but it is not fun that she has to have all these tests. And I can't be there a lot. I usually only get to go to the NICU about 2 hrs a day. I keep telling myself when I can breastfeed her, I'll figure out how I can stay there all day long. Between the hour drive to and from the hospital, gas money and Keaton (my 1 yr old son) at home, it's really hard to even get to the hospital every day.

Anyway, I think I covered everything, will keep you all updated. Please pray for her, she's such a tough little precious girl. I know the Lord is still watching over her, I guess we couldn't expect a completely uneventful stay in the NICU.

Thursday, November 5, 2009

No respiratory support........

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written Nov 05, 2007 09:43am (EST)

On Nov 3rd, they put Autumn on Nasal Canula. Not because they thought she was ready but because the CPAP apparatus was irritating her nose, it was all swollen and a little bloody. My poor baby. So they put her on nasal canula to give her nose a break and she stayed on that for the 3rd & 4th. Today, she was doing so well, they took out the nasal canula at 7:30 am. They're going to see how she does but if she gets worn out, they'll put her back on nasal canula or even CPAP. But gosh, we just keep getting surprised by her quick progression! The only medication she is currently on is caffeine for apnea and/or bradycardia spells. Last night, the charge nurse told us that Autumn may be moved out to the large area where there are more babies, she's currently in a semi private room with only one other baby. The nurse said she may be moved because she's doing so well and they like to reserve the semi private rooms for more unstable babies coming in. That's exciting except we will miss the privacy we have now. They still won't say how long she will need to be there but I'm beginning to think she's going to be home sooner than we thought! Praise the Lord.

Monday, November 2, 2009

Smooth sailing so far

PLEASE NOTE: This all happened 2 years ago, I'm simply copying it to my blog since I didn't have a blog back then.

Originally written Nov 02, 2007 01:13pm (EST)

Well, Autumn has been doing great. Everyday she progresses along with no bumps in the road so far. She had a Patent Ductus Arteriosis or PDA. They treated it with one course of Indocin/Indomethacin. And it is now as good as closed, not completely but they said good enough? We've been praying specifically for her PDA and I knew it would be taken care of with the first course of medication, they were talking about doing 3 courses but stopped after the first. She came off the ventilator after 10 days and is now on CPAP. I got to hold her for the first time on Halloween and that evening they weaned her down to room air oxygen (21%) and she's been on that since. I held her for 2 1/2 hours Wed and an hour last night, it was awesome and she loved it. She is getting my breastmilk through an OG tube in her mouth. She started at .5cc and is now taking 1.5cc every 3 hours and they will keep increasing the amount daily I think or every 6 feeds or something like that. She likes her pacifier and she also sucks on her knuckles. Things have been going way better than I expected and I am so thankful to the Lord for that. He is so awesome and just showing us the miracles He can do if we just ask and believe. I know there may still be some bumps here and there but I still feel content that overall Autumn will be just fine. She has been staying around her birth weight and has gained an ounce yesterday, 2 lb 12 oz.