Day 41

As I was standing there listening to the doctors make their rounds today I heard them say, "Jolianne Clayton, 41 days old." It kind of hit me like a ton of bricks. She has been in the hospital for 41 days. Forty-one days of x-rays, PICC lines, IV's (she has a new one today), blood transfusions, needle sticks, temperature checks, throwing-up, desaturations, ventilators, puffy eyes and Lord knows what else. Forty-one days of funny faces, sweet smiles, squeezing my hand tightly, seeing Jeremy's face while he holds his sweet baby girl, Andy holding his sister for the first time, feeling her chest rise and fall as I snuggle her close to me. Have you every missed someone so much it is hard to breathe? Have you ever cried so hard that it was impossible to see? Have you ever wanted something so bad, but you know that it is not in your power to make it happen? Sometimes I feel so helpless.. It feels like a piece of my heart is missing. Every time I walk out of that hospital I leave a part of me behind. I wish I could make her better, I wish I could hold her in my arms and make all of her pain go away. When I get home and I see my family, my heart is overjoyed. I find that I listen more closely to what they have to say. I linger a little longer at night when saying good night. Seeing your child fighting for every breath and every heart beat makes you very aware of how fragile life really can be. Jeremy and I have become very aware of this. What an adventure this has been. I use the word adventure because you never know what is coming around the bend. We make plans, Jo Jo says "No, I don't think so, I do what I want to!!!" They are talking about doing one of her surgeries next week. We are going to try to do a Heart Catheterization at the end of this week to see exactly what her heart is doing. They always told us that the way her heart made a way to work would be temporary. As she gets bigger it struggles more and more to keep up with what her body needs. It seems like they are wanting to get her heart surgery done before she reaches 10 lbs. We will just have to wait and see. She is doing better today, she is all puffy from the ventilator and extra fluid retainage. She doesn't look like herself to me. She looks like she hurts. She sleeps most of the time and when she wakes up she is very unhappy. I hope that she will not be this unhappy for a long time. I HATE SEEING HER THIS WAY!

As always, thank you so much for all of your love and support. We will make it through this with God at our side.

Fussy Friday

Well little Jo Jo still doesn't like her breathing tube. This morning she pulled it out and they had to bag her while they got it readjusted in her nose this time. They have moved her feeding tube to her mouth for the time being. She throws such a fit in protest of the breathing tube that they have had to sedate her with a continuous drip of pain meds. Thank you so much for all of your prayers. She is hanging in there and definitely lets us know when she is unhappy about not getting her way. =)
Love,
Jeremy and Crystal

Back on the breathing tube

Yesterday they put Jo Jo back on the breathing tube. The condition that she has is called Sepsis. It is where the body has gone into overdrive trying to fight the infection in her bloodstream. This is why she has had trouble breathing and keeping her heart rate up. It has become more difficult for her to keep her main functions going because her body is working so hard to get over her illness. She is on two antibiotics right now to treat the infection. They are also giving her pain medication to ease her discomfort. She is very unhappy with the breathing tube. When she is awake she gets very angry and arches her back and moves her body all around. They have her in arm restraints that are tied down to her bed in an effort to keep her from pulling the breathing tube out. It has been a very scary past few days. We are praying that she will make a full recovery from the Sepsis. It can develop into a very serious fatal condition if not treated correctly. We are glad that they were able to catch it and start her on medication so quickly, this increases her chances of getting better sooner.

Please keep Jolianne in your prayers while she is fighting of this infection.
Love,
Jeremy and Crystal

Halloween Pics

Halloween Rattle the Hospital gave Jo Jo.

Jo Jo and her pumpkin outfit from Nana.

Happy Halloween Jolianne!!!!

Fighting off another infection

Sorry about no update in a while. I have been pretty busy this past week. Jolianne started having apnea's and high heart rate on Sunday evening. On Monday they took some blood cultures to check for infection. They did find that she has a bacterial infection present in her blood. Unfortunately this is something that comes with the territory when you have IV's and PICC lines all the time. They are not sure what she is fighting just yet but they do have her on antibiotics for two weeks. She is still on continuous feeds at 14 cc's an hour. They will do another Lumbar Puncture soon to see if the bacterial infection is present in her spinal fluid. If she does then they will extend her antibiotics to three weeks. I do have some really cute pictures of her at Halloween to post soon. Please keep Jo Jo in your prayers.

Still doing good.

Jolianne is having a pretty good day today. She weighs 5.5 lbs and they have increased her feeds to 14 cc's an hour. She is still on continuous feeds. They decided to hold off on the feeds every three hours to give her tummy time to adjust to the feeding tube being placed there instead of in the intestine. They just moved it up to her stomach yesterday. We will see how she does with the increase. The speech therapist wasn't able to come today but they are going to try again tomorrow with the bottle. They are still practicing with the pacifier to get her use to the suck/swallow motion that she needs to have to eat by mouth. She had an eye exam today to be sure that the vessels had formed correctly. The doctor said that everything looked really good. He will examine again in 4 weeks. She also had an echo cardiogram today to be sure her heart is still doing ok. We haven't gotten the results back yet from that exam. Yesterday she had a head x-ray to be sure that her brain is growing correctly. Results from that test came back that everything looks great. We had been concerned that her head was small (microcephaly), but the doctor said that she isn't showing any signs of a lack of growth in her brain. Jolianne is one month old today so they are doing a bunch of routine tests to be sure everything is in working condition.

I also want to say happy 5th birthday to my niece Emma. She is such a sweet heart. She is very glad to welcome her first girl cousin to the family. I am excited to see them play together!!!

Family Game Night

I know this is a blog page for Jolianne but I just had to share this picture with you. We were having family game night over at my mom's house and we decided to play Monopoly. Ronnie was cleaning house and buying all the property he could. At the end of the game we added up our money and property values. Andy was declared the winner which immediately brought tears to Ronnie's eyes. He was so sure that he would win because he had the most property. Andy went ahead and allowed Ronnie to think he won the game by placing his name on the Trophy. Ronnie was so excited, so I took this picture of him hold his "most properties owned" trophy!!! I am so touched when I see Andy looking out for his brother and wanting him to be happy. God has truly blessed me with three AMAZING kiddos!!!!

Trip to the store to get a game $5.00

Newest Monopoly game $15.00

Look on your 6 year old's face when he thinks he is the winner $PRICELESS :)