4 of a Kind

Isabelle

As of last night Isabelle weighs 4lbs 14ozs. She is doing well (knock on wood). Over the weekend they put her back in a crib and have put her on micro flow for her oxygen needs. She could come home on this if she needs it. She is taking some of her milk from a bottle. We are working on getting her to take more. Last night she took half of her feeding from the bottle. Isabelle is beginning to stay awake for longer time periods. She has the most beautiful eyes. I will work on getting more pictures of her.

Lily

On Sunday Lily turned 2. She had a good time, we did a little party for her and Brooke. Lily is such a sweet little girl. She wants to do everything her brother and sister do. I find myself letting her do things I would never have let Brooke do. It is hard to stop her sometimes. She began sleeping in a toddler bed Sunday. Her and Brooke are sharing a room for now. Lily didn't get out of the bed yesterday morning because Brookie was still sleeping and she didn't want to wake her.

Nolan

He turned 5 back in February. Nolan loves to be outside and likes to wrestle his sisters. He is so much like Dave and wants to do everything his Daddy does. If I need help doing anything Nolan is usually the one to help.

Brooke

She has become such a beautiful girl. Brooke loves to read and play school. She wants to be a teacher when she grows up. This year she has lost her two front and bottom teeth. It is so hard to believe that she will be 7 on June 1st.

We have been very busy with t-ball, field trips, field day, birthdays and visiting Isabelle. I hope you enjoy the pictures.

Taking rides in the wheelbarrow.

Isabelle does have Mersa. She has started a new antibiotic. Yesterday she gained a lot of weight so they did a chest x-ray to check her lungs. There was no big change in her lung condition so she is getting a diuretic to get rid of the extra fluid. There are not feeding her from a bottle because they want her to save her energy. Her nurse last night seems to think she wants her bottle. Isabelle is really sucking on her binky. Her respiratory flow level had to go up to 4 but her oxygen level is usually at 21%. I was told that it will take about a week to get her back on track.

Roller Coaster

We have been on a roller coaster ride for the last week and a half. Before we left UVA I thought Isabelle might need blood. She has had a number of transfusions and by looking at her I felt she looked like she needed one. The doctors were keeping an eye on her red blood cell count. It has been low for weeks but she was making her own red blood cells, slowly. She began to have more episodes so the doctors decided to draw blood to check different things. In order to check her levels this meant they had to draw blood. This was t0 much and she needed a blood transfusion. On Thursday she received blood. This brought her levels up but not high enough, so she got her second transfusion Friday morning. Isabelle seemed to be doing ok on Friday, but Saturday was a different story.



On Saturday the doctors stopped Isabelle's feedings. She had blood in her stool and had a red, warm spot on her leg. The area infected was the IV spot from her two blood transfusions. I was told that it could be an infection or belly issues (not tolerating her feedings-NEC). A blood culture and urine culture were started Saturday. Dr. Clawson informed me today that her blood culture has grown something. She isn't positive but they seem to think it is mersa (skin infection). Isabelle was tested for mersa when we came back to Winchester and the results were negative. It seems that she may have gotten it at Winchester. So as a precaution she will be put in an isolation room and will begin a different antibiotic. On the positive side they don't feel that it is her feedings that are the problem. They will begin increaseing her feedings again. Once again Isabelle has another obstacle to overcome.

Welcome Back Princess Isabelle

We are back in Winchester and I'm so glad. Isabelle is doing good. Her primary nurse was so glad to see her. When Dave and I returned Wednesday night she had already made Isabelle a sign. It said Welcome Back Princess Isabelle--how sweet. Dr. Clawson is making adjustments on vitamins and calories. She has started Isabelle on some different medicines. Isabelle has a little jaundice, so she is taking medicine to help her liver get rid of it. Since she was getting nutrition from an IV for awhile this sometimes happens when they begin eating. Isabelle is getting lots of things added into her milk. She doesn't really care for them but she needs it. Please pray that her little tummy can handle the feedings. She had some trouble with spitting up last night. Her temperature is also being a problem. She has been a little cooler since we can from UVa. The nurse said that sometimes it takes a little while to adjust or she could have a infection brewing. We really hope this is not the case. Isabelle has a few more hurdles to get over and then it should be all about growing. She continues to be a little fighter.

Winchester Here We Come

Isabelle is scheduled to go back to Winchester tomorrow morning. I decided it was time to check out of the Ronald McDonald house. It has been my home for 47 days (minus a few quick trips home). We figured we would owe around 650 to 700 dollars. When I went to the office to pay for my stay, I was told it was already taken care of. Once again we have truly been blessed. I thank those of you who have helped pay for our stay.

Isabelle update--She continues to go up on her feedings. They have added calories to the breast milk and some vitamins. She did lose a little weight. This should be from the adjustments of her TPN and lipids, that she is no longer getting. Not a concern right now. She has been a little fighter and continues to do well.

Since I will be going home I will not be posting everyday. I will try my best.

On Our Way Soon

The doctors gave me some wonderful news during rounds today. We should be able to go back to Winchester in a day or two. The plan is in place, Isabelle just needs to continue to do well. I was told that if Isabelle continues to do well there is no reason we cannot go back to Winchester. So hopefully we are on our way.

Isabelle had a great day. We had a very good nurse today. She had no problems with me doing what I wanted. I changed Isabelle into a cute little outfit that her Nana bought her. It is pink with frogs on it and the feet are frog faces.

Isabelle's face is clear of the tape that went across her forehead. She is beginning to really look like her siblings. As you can see she is just so darn cute. She still has the double chin from her lipids and her hair has a little reddish tint to it. I wanted to show a picture of her now and two months ago. It is amazing how much she has grown and changed.

May 4 around 4lbs

March 4 1lb 13 ozs

Praise GOD!!!!!!!!!

Two Months Old

Isabelle had a great weekend. She weighs 4lbs 9ozs. Her IV came out, so she is no longer getting lipids and her TPN. She will only be getting breast milk and caffeine. Isabelle is only hooked up to her leads for the monitor, her feeding tube and her nasal cannula. Dave and I gave Isabelle her first sponge bath. She did very well. Her feedings are up to 28 mls. Since she is no longer getting her TNP and lipids her full feeding number is around 40 mls. I have included some pictures from today.

Hope you enjoy.

Relaxing after her bath

The tape on her forehead was from the CPAP, it will come off soon.

Resting in Daddy's arms

Dave did this while I was pumpng and it was a little dark. Still thought you might enjoy.