15 Days Later . . .

Two Minutes Old

15 Days Old

This picture of her just after she was born makes me cry, my poor starving baby. It really shows how far she has come.

15 days after she was born, Ellie has officially graduated from St. Lukes NICU. Hooray! Tonight will be our first night as real full time parents. Wish us luck.

2 Weeks Old

Her face and chest have really filled out. No more ribs poking out and she has the most kissable cheeks. Her arms and legs are still skinny whinny but we are working on that.

Ellie decided that she was done being fed through a tube and pulled out her feeding tube. She wasn't using it much anyway so we decided to let her just nurse and see if she is able to get enough. She has done great since. She is nursing just fine and waking up when she gets hungry. Such a good little girl.

Yesterday as I was talking to Dr. Coen, he told me that he has never seen a baby with glucose issues like Ellie. Her numbers have been so random and don't appear to correlate with her eating - very strange. Dr. Coen is definitely not a rookie either. He has been a Neonatologist for 40 years, and he started his career in academia as a professor and researcher. We have felt very confident with him. He knows most answers, but when he doesn't, he knows where to find them. So he has been working with an Endocrinologist on Ellie and thankfully this Doctor has heard of instances where babies like Ellie don't regulate their feedback mechanisms right when it comes to insulin. There is nothing you can do about it, they just grow out of it after a few weeks. That was good to hear.

However, Ellie is determined to keep us all on our toes and just as one problem is solved another pops up. Our next adventure: cortisol. You guessed it, her levels are just not quite right so we need to check the function of her adrenal glands before we can go home.

We finally got some results on some blood tests for her low platelet count. It came out inconclusive -- so we don't know why her platelet level dropped, but she is doing fine now and platelets should no longer be an issue.

For the Grandmas

Ellie's Big Girl Bed

Ellie moved into an open crib yesterday. She looks so cute all bundled up. She also had her last IV port removed. We are definitely making progress but we won't be going home today. Her glucose levels are still too variable and it has her doctor scratching his head. We will be talking to an Endocrinologist today to see if they can shed any light on this issue. Other than that she is doing great. She is gaining weight like a champ (4 lbs 10 oz today!) and nursing really well. She is still being supplemented with high-calorie formula just to keep her sugar levels high.

4lbs 9oz

Those little cheeks are filling in and as of this morning she tipped the scales at an impressive 4 lbs 9 oz. She is more and more alert and aware everyday and we are just loving her like crazy.

She is doing great. She needs to be able to get all her nutrients from nursing (while keeping her glucose level stable) and also be able to regulate her temperature in an open crib before we can take her home.

While nursing has continued to get better and better, her glucose levels have dipped a few times the past couple of days. They always rebound, but she needs to keep those numbers consistently high before she can go home.

She is really close to being moved into an open crib. Hopefully by tomorrow she will be out of her box.

Not yet two weeks old and she is already annoyed with her parents and the camera. She'll just have to deal with it.

Look Who's Wearing Clothes!

Apparently this is a very momentous occasion in the NICU, when a baby graduates to wearing clothes. All of her IV's (except the one in her head) were removed yesterday, so now she can be dressed. This is a really great thing. She is getting all of her nutrition from milk and is able to sustain her glucose levels.
Her platelet count has also remained high so no more transfusions!
When Dr. Coen (her Neonatalogist) came in to talk with me this morning, he said "She sure is a little peanut, threw us some good curve balls." I hadn't asked, or wanted to know how common some of her issues were. I just wanted to get past them and then they could tell me. Although I had a suspicion they don't see babies like her too often when one of the older nurses told me that she had never seen a baby have to get poked as much as Ellie. While all of her issues have been potentially very serious her body has handled them very well, and quickly. I am so grateful for that. She is such a trooper.
The best moment today was when Dr. Coen told me that he expects to be able to send her home near the end of this week. Wahoo! Happy day. I've been walking on air ever since. She just needs figure out how to nurse and then we can go home.

I got to give her a bath yesterday, that was fun; although I don't think she would agree.

Sunday morning when we went in to see Ellie, the nurses were on the phone with the neonatologist and a nurse practitioner from downtown was waiting for us . . . not a great sign. Ellie's PIC line had become infected and they were going to have to remove it and treat her with antibiotics. Her awesome nurse noticed the infection really early and it was pretty localized, so we expected it to clear out without any complications. However,PIC lines are pretty intensive to put in and we were unsure whether her gut would be able to handle enough milk to keep her glucose levels high enough.
They put in a feeding tube through her nose and we stopped breast feeding so they could monitor how well she was able to digest her milk. Another day of waiting and watching.
As usual, our little Ellie did everything we told her to. Her glucose level has remained high and her infection has steadily improved.

Her transfusion went really well. She does have antibodies in her blood that are attacking her platelets. As long as those antibodies are circulating in her, her platelet count will continue to decrease, but her spleen is functioning well and cleaning out the little buggers. The doctor expects to have to do another transfusion to keep her in the safe zone until her body takes care of the antibodies. We are waiting for some lab results that may give us some answers as to why she has these antibodies in her blood.

Some pictures from today

All kids love cell phones right? It may be a while before she can chuck this one around.
Moments like this make everything so worth it.
If you look closely you can see the results from all those heel pricks.
Emily's 5-star diggs.

Today's adventures

Ellie is a champ! She is changing in front of our eyes and we are falling deeper and deeper in love with her with every moment. For such a little girl she has had to put up with so much. Heel pricks every 4 hours, blood draws 2-3 times a day, not to mention new IV ports every day. We are really looking forward to the day when we can hold her without all of the wires and tubes to wrestle with.

Here is the latest 'accessory' that was added today. This IV was put in for her blood transfusion. We were hoping that we wouldn't have to do this, but her platelet count dropped below the critical level this morning. It is nothing too serious but if untreated any bleeding (especially internal) could quickly lead to serious problems. If all goes well we will only have to do this once. We will get lab results tomorrow morning to find out if the transfusion went well.I had to add this picture of our 'basking baby' under the Billi-lights. I think she looks so cute with her little glasses.

Little Ellie Jane

I would have never guessed this week would be as eventful as it has been. Our little Ellie was born early Tuesday morning and is the sweetest most wonderful thing that has ever happened to us. The delivery threw us some curve balls and there were some scary moments, but we all made it through okay. If you care to keep reading I'll expand the whole 'baby story' but for just the nuts and bolts Ellenore Jane White was born 3:38 am on 1.6.09, 3 lbs 14 oz, 17 1/2 inches.

Monday, I went to work as usual and then to my weekly doctor visit. My doctor (who I love by the way and am so grateful I found an OB as great as her) wanted to do an ultrasound since I was measuring a little small for the second week in a row. The ultrasound showed that she was behind in growth by about 2 weeks and she was showing signs of stress -- thus we needed to deliver our babe that night. I had planned to pack my hospital bag that night anyway, but never would have imagined I would be trying to do that while breathing through a contraction, I would not recommend doing this.

We drove to Meridian, which wasn't the original plan, but since our baby was possibly very small my doctor wanted a NICU readily available. It was a very pretty night with light snow flurries, but the roads were nasty. We got to the hospital and started the prep, laughing and joking with the nurses. Then things changed. My blood pressure was really high and continued to raise. The stuck me on oxygen and I was put on my side and not allowed to move -- no matter how uncomfortable I got. At that point any birth plan I had was thrown out the window and it was all about getting through this ordeal. Tests came back and confirmed that I was in full blown preeclampsia, a very rare (3-5% of pregnancies) but very serious condition that leads to seizures and is very dangerous for mothers and babies. So I spent the next few hours trying to stay calm, not move, and not complain too much (if you ask me I think I was very brave, but you'll have to ask Brian to get whole truth)

After they put me on some blood pressure medication, I started to stabilize, but then there were some scary moments as Ellie's heart rate dipped. I was pretty loopy when Dr. Hughes came in around 3:00 am, but I remember her saying the baby was pretty stressed and we needed to push. Since she was so small, the doctor felt I didn't need to be completely dilated in order to get her out. Things got ready and 3 contractions later Ellie slipped right out, with the cord wrapped around her neck twice. I was relieved to see her pink little body and hear her cry.

Although she made it to 37 weeks and technically full term, her size puts her at 33-35 weeks. She is tiny and has a few issues that come with being so little, but she is a fiesty little thing and is doing really well. We'll get to hang out at the hospital a little longer than expected, but the nurses are great and the food is . . . . well the nurses are great:)