Tuesday, December 8, 2009

Wahoo!

Olivia is 10# today! Not bad for starting off at 3# 2 oz. She's right on target for weight according to the doctor. And she is over 22" long.

And I am too tired to write anything else. :)

Thursday, November 12, 2009

Olivia is home!

It is SO nice to be back at home! All of us feel so much better just being together in one house again.

Olivia was able to come home this past Monday. We hit the house around 5 pm and it's been a whirlwind around here. We've had two visits at home from a nurse and one visit out to her pediatrician. I love her pediatrician - he's got a well child entrance that is separate from the sick child entrance and waiting area. We were able to go when no one else was in the office so she was not exposed to anything. He spent an hour and a half with us learning about her and looking at her. I was very impressed. He used to work in the same hospital we just left, and is still remembered by the staff that works there with an enormous amount of respect. We have two more nursing visits at home and one more doctor visit between now and next Wednesday - hopefully it will dwindle down after that.

I know our updates have been spotty and they might continue to be so for a while. But to pull it all together with everything she went through, I thought I would list some of the things put on her "unofficial" discharge diagnoses. This is a short synopsis of what she has been through the past two plus months. Lots of medical terminology; hope it makes sense. While I lived through it with her, I'm not exactly sure what some of these are in plain English - I'm just copying off the paper. We have a few more appointments coming up that might add some information to this - hopefully not!

Former preterm infant now 42 4/7 weeks PMA
RDS (resolved)
Left Pneumothorax (resolved)
Respiratory Acidosis (resolved)
Seizures
Anemia
Pneumopericardium (resolved)
Bigeminy
Grade 2 IVH bilaterally (brain bleed)
NEC
Pneumoperitoneum (resolved)
Hypotension (resolved)
Coagulopathy (resolved)
Thrombocytopenia (resolved)
Bowel perforation s/p illeostomy placement
BPD
hypotonia
Bowel reanastamosis
G-tube placement
Gastroesophageal reflux

Monday, November 2, 2009

still early, the day after

I was so overwhelmed in the beginning and still in such a state of shock that when I look at these pictures, I am noticing for the first time some of the seperate wires. So many were going in different directions that she just looked tangled up in them to me.



Jet ventilator


The ventilator she's on was connected to a huge stationary machine by the side of her bed. She couldn't really be held until she went to the next step down on ventilators, and her head had to be positioned very carefully. You can see the original chest tube scar on her right side; the one in there at this point was the second or third one.

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.



Bilirubin

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.

video video

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.

Friday, September 11, 2009

Olivia's story - part 1

Warning: If you have kids, you should read this post for appropriateness before letting them read it. Also, if it seems like an annoying amount of detail, please forgive me. This post is as much for myself and Rafe as it is for everyone else.

My belly seemed to grow quickly the weeks before I had Olivia. My belly was as large as it was when I had Amelia, and I still had over 2 months left before she was due (October 22). Rafe and I kept joking about going into labor; I was exhausted and had really bad back pain all week. I kept telling him I was probably going to have back labor if this was how bad I felt at 7 months pregnant. I couldn't bend over to tie my shoes, I could barely get dressed and I had a woman gently poke me in the belly one week before she was born to tell me that I looked like I was about to pop.

The Sunday she was born (has it already been 3 weeks this Sunday?!?!), I went to church feeling back pains and cramping. I had been feeling exhausted all week - only able to do about three hours of real work each day without lying down. After church, I was too tired to do anything but take a nap after lunch and so I slept till around 4. I was still cramping lightly, but after going to the hospital twice before that month and being dismissed by the staff with sheets of paper that they highlighted with reasons to come back (cramps weren't highlighted), I felt silly calling the doctor. Every time I had mentioned pain or other issues, they were explained away. Now I wish I had taken them a little less seriously and myself a little more.

We'd promised to take Amelia swimming that Sunday, so while Rafe was getting her ready to go after my nap I went to the bathroom before leaving - only to wipe away two tissues of my mucous plug. Immediately our plans changed and we scrambled to find someone to watch Amelia as we headed to the hospital. Unfortunately, no one was available and Amelia was crying hysterically - scared about the suddenness of change in plans and mommy and daddy rushing to the hospital. We had to throw her into the car screaming, but luckily by the time we made it to the hospital she was quiet again.

Once at the hospital, I was rushed to the Antepartum in a wheelchair - only to find no one there. We went to the nurses desk and had to get a nurses attention (the only one there apparently, and it was her dinner break since she had her back to us eating) in order to be seen. After that, no one seemed in a hurry for anything. I was on a monitor for two hours with Rafe trying to keep Amelia entertained in the chair.... she was remarkably well behaved, quiet and obedient.

As a military family, the government supplies our health care. (Anyone who wants the government to run their health care should ask a military family how managed care is working for them when they need anything out of the ordinary). So even though we went to a civilian hospital, my doctor that evening was a military doctor on call. He never came in the first time, and never ordered a vaginal check or an ultrasound. I have no idea what the nurse conveyed to the doctor, so I have no idea where the system broke down - whether she failed to communicate everything to him or if he failed to diagnose properly. During those two hours, my "cramps" registered as "irritations" on the monitor, according to the nurse. I told her my belly had been going numb for two weeks and that I couldn't feel my baby move in the middle of my belly and only felt slight movements along the outer edges. She didn't seem concerned and apparently neither was my doctor. She did mention that if I had any more mucous incidents to show her.

During this time, I mentioned several times about my belly being numb and not being able to feel the baby move. She pointed out the sounds on the monitor as baby movements, but each time she pointed out the sounds, I felt nothing and told her that. There was no explanation as to why that was or even a mention that it was out of the ordinary.

After about two hours, I was told that nothing was wrong and I could leave. All my concerns were explained away - cramping was probably gas or needing to defecate; I was probably dehydrated, the bloody mucous was probably from intercourse. I still felt uneasy; I mentioned that I was diligent in drinking water, eating fiber, having prunes with meals, wasn't stopped up (although it felt like it), and ok, cervix can sometimes get bloody with intercourse but THAT bloody? And what was the mucous about? She told me it was semen, but it wasn't even possible and I told her that. I was too uncomfortable physically to finish an intimate encounter the night before. But each symptom was systematically checked off the list and explained away; and once again I felt silly for going to the hospital concerned about this baby. I went to the bathroom again and wiped away more bloody mucous and showed it to her. She said it didn't seem to be anything to be concerned about.

Right before leaving, as she was once again at a desk eating with her back to me (only this time it was in the antepartum room and there was another nurse there next to her), I asked a question - If I was fine, then what were the cramps all about? I told her that when I had stood up to go to the bathroom (and mentioned that once there, I couldn't go at all and just felt pressure), I had a very strong cramp, like a really really horrible period cramp right before going in. She said she didn't really know but to go home and call back if they became worse. During my visit, she was also monitoring another woman who had come in twice for false labor and told me that sometimes that just happens - I had a feeling that she thought my body was sending me false signals also.

However... a simple vaginal check or ultrasound at that point would have made all the difference in the world to the health of my sweet Olivia Grace. They would have discovered that I was already in labor and I would have had enough time to get to MUSC or at least have a steroid shot or drugs to slow labor down. It was getting late, and we needed to get Amelia back home and into bed. I was stressed out and wanted to trust that the medical professionals knew what they were talking about so I didn't press the issue.

"Now would be a good time to pray..."

When you've just suddenly given birth to a baby at 31 weeks, watched her whisked out of the room in seconds after being born and then not seen or heard ANYONE or ANYTHING else in your room for over an hour except the whirr of a helicopter landing on the roof of the hospital, those words are not the first words you want to hear.

You especially don't want to hear them from your husband, who tells you they were the first words he heard when he left the room to ask a nurse what was going on with our baby.

It's taken me a while to write this post. Every time I start to sit down and explain every thing that happened the night Olivia was born, I just feel so much anger and sadness at all the tiny mishaps along the way that added up to an extremely dangerous situation for our little baby. I don't know if I can write this coherently in any semblance of order, but I will try. What happened that day and the days that followed came so very quickly that we have had little time to talk to the people we love, our family and friends and neighbors, and tell them all that transpired. They happened so quickly that the experience seemed surreal and we were left spinning like toy tops on the sidewalk. I may not be able to write this all at one time. This post and the ones that follow are as much for us as it is for you.

"Now would be a good time to pray..."

Saturday, September 5, 2009

Emergency Surgery

Today Olivia needed surgery on short notice for "nec" - necrotizing colitis. She had 3 surgeons working on her and the surgery went far faster than they anticipated going in - about half an hour less. She had a perforation that wasn't seen on the xrays; but luckily they caught it in the early stages. She has 2 colostomys and will have them for about 2 months and then more surgery to connect them again. She's recovering well - as they told us, she is a very sick little baby but doing well considering the circumstances. She will get a bit worse over the next 48 hours as her body fights to heal itself after the "controlled trauma event", but then much better after that.

We are extremely lucky to be at MUSC in Charleston. It's one of the top ten NNICU hospitals in the country and she could not be in better hands. Livvie is a bit high maintenance, so tonight she has her own nurse all to herself. Surgeons and nurse practitioners and nurses are checking on her constantly and we are grateful, very grateful to them.

It's after midnight - I think we'll try to get some sleep.

Friday, September 4, 2009

Update

When I last posted, Olivia had been steadily doing better and we had started to breathe a sigh of relief. She was taken off the ventilator and the jet, medications were being dialed back and stopped and she kept looking better and better.

Soon after that at the beginning of this week, she began having some roadblocks to her progress. She's had seizures and was put back on a ventilator. She has continued to get slowly worse again and developed necrotizing colitis yesterday (not sure on the spelling). Her intestines are not processing any of the breast milk and a surgeon has looked at her. Please pray for our sweet little baby - she is just really struggling right now.

Friday, August 28, 2009

Welcome to the World, Olivia Grace!


She zipped into the world after MAYBE 5 minutes of pushing at 10:28, Sunday August 23rd, weighing 3 lbs and 2 oz; 17 inches long and was born at 31 1/2 weeks old.

We have a lot to share about her birth story, both horrendous and miraculous. But for now, we want to thank everyone SO MUCH for all the support and prayers. We just took a deep breath today, coming up for air for the first time in 5 days. I didn't even know it was going to be Friday until last night when Rafe told me.

Olivia looks 100% better then she did when the life flight crew wheeled her away Sunday night. She was flat, yellow, and bruised and completely limp. We have a picture the crew gave us right before they took off and it is shocking in it's intensity. If we have time tomorrow or the next day, we will begin to update with more details.

Tuesday, August 4, 2009

Walking in the Woods











" Hurry UP, Daddy!"
She loves being outside. I look forward to the days when Rafe takes her camping and hiking.



Aquarium in NC
















The first few days home

She didn't want to be more than a few inches away from him... she picked out the hats :)





Pure Joy


Anything Daddy does is fascinating






Friday, July 31, 2009

Daddy Doll

video

I should have left the light on, but the room didn't look that dark when I was filming. :(

"My Daddy's Home!"

video

This was just about 30 minutes after he arrived. We just walked in the BOQ and he was unloading gear from the car into the room.

Together at last!

I can't get enough of these two faces!



And more gear!

That gear is extremely heavy - even the lightest piece of it. He made carrying it look easy, so back at the BOQ I tried to lift it. BAD IDEA. I could barely pick it up. I was actually surprised at how much it weighed.

Getting the Gear

I love it - the only Marine carrying a backpack, a little girl and a pink blanket!















Pure Hotness!




I sure did miss that man!!!!!!!!!!

Birthday Party

video

I love this one also, because that particular smiling expression is so unusual to see. She is just so happy to see him and yet bashful at the same time.

Shy, Happy and Excited

I took this right after she ran to him and he picked her up... I love that look on her face; it's one I hardly ever see.

"Daddy have a present for me!"

This can't top the first one I posted, but it is still cute. He just told her he brought back a present for her. It's only a minute or two after he came home.

video

Saturday, July 25, 2009

Reunion

video

This video says it better than I could.

HERE THEY ARE!

You can see the buses starting to come down the road. There were 3 of them all together, he was in the first one. Amelia and I had actually gone to the car and called my mom to pass the time when we heard a loud roar and cheering begin from the crowd. I hung up and ran out with Amelia as quickly as I could - poor thing, she fell and I had to scoop her up and carry her the rest of the way.

The Gear is Here!

This was a beautiful sight - rows of gear, just waiting to be claimed.


Amelia and I started strolling by it to see if we could read the tags.


Is that....???



IT IS!!!!
This is when it finally started to feel real;
that it was actually going to come to an end and he would be with us soon.




Still waiting...

She had two flags she wanted to wave for Daddy...
This one made the cut

Getting a little restless


Finally!! Signs of life!
Their gear arrives!!



Forlorn and starting to get a bit sad