Wednesday, October 28, 2009

More Good News!

She has started taking breast milk through her feeding tube. 4 cc's every 3 hours for the last 24 hours, this morning it was 8 cc's for 3 feedings, then up to 12 after that! We're hoping she'll be up to full feeds in 3-5 days so they can stop the IV nutrition. They didn't put a PICC line in after surgery because they had trouble finding veins.

All that was for the nurses in my family who will know what it means! For the rest of us, 80 cc is a little over 2.5 fluid ounces or 5 tablespoons of liquid. Basically, her intestines look like they are working fine and healing well.

Mental Health Day

Yesterday I told our nurse that I didn't want any bad news, and if they had any for me it would have to wait until today. Olivia has been improving radically in the past week since the surgery. The surgeries were for the feeding tube in her belly and to reconnect her intestines and should not really make a difference to her ability to move. Rafe said he felt like her body was like, "HEY! That hurt! Is that attached to me? Wait... I have legs.... I have arms.... I have a body! lets see if I can move them around!"

So it has been wonderful to see her making movements similar to what a newborn would make. She can curl her hands, bring her arms to midline, move her head slightly on occasion and flex her legs and bring them in. She is still floppy, but her muscle tone has improved significantly. They told us that after her surgery she would be intubated and back on a ventilator (she had been weaned to a nasal cannula). However, less than a few hours after her surgery, she was fighting the intubation so they took it out and put her back on the cannula (this was a week ago). Sunday she was breathing room air and has been ever since. Her O2 levels range from 86 to 100, but have mostly been high 90s. She is breathing ON HER OWN!

Things were going so well that I really did not want to hear anything negative yesterday. I just wanted to savor the moment and watch her and snuggle with her.

We still have a long ways to go, but she looks great. I will post more pictures and updates tonight. Off to the hospital.

Tuesday, October 27, 2009

Floppy Baby

Olivia was born at 10:28 pm. An hour into it, we were told it was a good time to pray after my husband left the room to ask about her. Three and a half hours later, the first people we saw were the two people from the emergency flight crew from MUSC. They wheeled her incubator in the room next to the bed so that I could reach up and touch her leg through the round window before they took off with her. They also gave me a polaroid picture of her - when I can find a way to scan it, I'll post it. She was yellow, bruised, and flat. They had worked on her for that entire time trying to stabilize her and there were some oxygen deprivation issues.

You can see how floppy her tone is in this picture. Any semblance of positioning was done by the nurses in all of the pictures I've posted so far. They would move her in different positions, taking into account the tubes, wires and lines coming out of her but also trying to keep her muscles stretched. In her right arm is a PICC line for direct nutrition.

It was excruciating to watch her lay so still. At the time, the doctors were telling us that it could be from the tremendous amount of trauma she suffered after birth and the medications for pain and seizures. It was a time to just wait and watch.


Three days into this, Olivia's bilirubin levels were very high and she was
put under lights with a little blindfold on.

At the bottom right of the picture is a breast pad - compare that to the size of her head for an idea of how little she was.

She has had three chest tubes in her side all together (the slender white tube at the bottom)
to help her lungs.

Sweet big sister

I can only imagine what is going through Amelia's mind by the look on her face. One thing that sort of surprized me was how attached she was to Olivia already and what a sad or concerned look was on her face for some of these pictures. She's such a sweet and empathetic child.

August 25

Looking through the incubator - it's covered with a cloth so she was
shielded from the lights and just lifted up when she had visitors.

Double click this picture and compare the size of Rafe's finger with the size of her leg.

Due Date

Olivia was due October 25 - this past Thursday. Sunday she weighed 6#12oz. and was 21.5 inches long. In two months she has gained almost four pounds and 4.5 inches. Amazing to think that she would have still been in my belly; she looks huge now compared to when she was born.

First Look, First Touch

This was taken 2 days after Olivia was born. We were blessed by 2 families who watched Amelia for us - one the night of Olivia's birth, and the other during the following days until my parents could arrive from Kansas City.

When I saw Amelia show up at the door of the NICU that day to meet her sister, my heart melted. She was decked out in every single piece of play jewelry she had... Necklace upon necklace, and all the bracelets she owned. My mom told me that putting her jewelry on was Amelia's idea. Since she wears her play jewelry infrequently, and never in quantities, it really touched me to think she was dressing up for her first meeting with her baby sister.

Unfortunately, she had to take it all off to go into the NICU. I haven't worn my wedding rings or necklace since the day she was born. A single solid wedding band is all that is allowed because it is easy to wash and sanitize. There is a large sign when you enter the NICU ordering you to take your jewelry off because it harbors bacteria that could be lethal to the babies. You wash your hands at a big sink using your knees to press a piece of metal so you can get some soap, then wave your hands under an automatic water faucet. All this AFTER you sign in so that once your hands are clean, the only other thing you touch is your baby. Cell phones off and purses away.

Amelia's touch is so gentle with her sister.
If you double click on any of the pictures, you can see them close up.
It was amazing to see how perfectly formed Olivia was at 7 months gestation
with 2 months to go.

Hello, Sister...

The slight rapidly thumping sound you hear in the background is the jet ventilator that is doing the breathing for Olivia. It was breathing rapidly (over 400 times a minute) but extremely shallowly so it wouldn't expand her lungs too far. She had chest tubes in at this point from a collapsed lung. It sounds far fainter on this video than it does when you are sitting next to it and it's drowning out conversation but not the endless beeps and alarms going off for every dip in her vitals.

In the second video, Amelia is holding Olivia's diaper in her hand. That tiny diaper was actually too big for Olivia when she was first born!

I don't think we caught it on video, but it broke my heart to have Amelia talk to Olivia and then turn to me and say, "Why she not talking, Momma?" Even though I know babies can't talk at that point, it made me so sad to even think about the fact that she couldn't make any noise at all and she was so limp.

And the first of many lessons - be very careful of touching/tapping/talking on the incubator. It magnifies sound in the decibel range the equivalent to the decibel level of a jet. It finally occurred to me why they tell you not to tap on the glass in fish tanks. At this very early stage, her nervous system is so raw, her skin literally so translucent you could see the veins and through her skin if you were to shine a light on the other side of her body that you have to be very hushed, very quiet, very gentle. A stroking or patting touch is irritating to your preemie and they prefer a firm touch that mimics the containment of the womb.

Tuesday, October 20, 2009

Olivia's Story...

of what happened directly during/after the birth will be postponed for now per legal advice. Suffice it to say that there were some major medical decisions that could have been made differently with an ultimately better outcome.

I have meant to update this blog in the past two months, but by the time I would come home from the hospital at night, I simply would be too tired and overwhelmed to write down what was happening.

Things seemed to have evened out a bit. She has been at the NICU in Charleston (at MUSC) since August 24th, and we anticipate she will be there for another 2-3 weeks at least... Hopefully home after that. We are staying at the Ronald McDonald house in Charleston - I stay here Sunday night through Friday morning, and Rafe stays here Thursday night through Sunday evening. Sometimes my mom will come out and stay so that Rafe, Amelia and I can have a day or two together as a family back in Beaufort. It seems strange to be in a city for 2 months and never have seen more than a 2 block radius of it. In order to save gas, we switch out the cars on the trip so whoever stays in Charleston doesn't have a vehicle. We are lucky to be at the RM house - it's only 10$ a night to stay here, and we are able to eat dinner for free most nights here.

Tomorrow she will have another surgery - she had necrotizing colitis very early on and had to have some intestines cut out and a colostomy and mucous fistula. They will be reconnecting that and putting in a g-tube in order to continue feeding her through her stomach when she comes home. She is unable to eat enough to survive by mouth at this time. Right now they are telling us she will come home on oxygen, caffeine, and with a g-tube; monitors will be able to help us watch her oxygen levels carefully. Not sure how it all works yet, sometime this week we'll find out.

There have been some improvements. She has slightly better muscle tone. More info to come.

Thank you to everyone for your prayers and cards. We can not tell you enough how much they have helped.