Echo scheduled for today.

I am here at the hospital with Jolianne and we just finished reading our Christmas story. She was asleep the whole time but I read it anyway!!! I just love the book so much, we read it all the way through. They are changing Jolianne's bolus feeds from being extended over two hours to extended over 1 1/2 hours. This is in an effort to get her closer to normal feeding time. Jo Jo's PIV had to come out so they are going to attempt another IV. They may have to do one in her head if they can't get a good IV established in her extremities. They cannot move her to the 8th floor without an IV just in case they need it for something. They are also going to do a Heart Echo today to see what her heart is doing. The doctor said today that her pulmonary arteries have grown bigger over the last few weeks so they are going to talk to Dr. Forbess about proceeding on to phase 2 of her heart procedures. Dr. Forbess will decide when her wants to move forward and what he is going to do. There are a few different options for correcting the MAPCAs. He may send her to Cath Lab to get better pictures than the Echo can provide.

A few changes

They pulled Jolianne's PICC line last night because it turned out that it did have a blockage in it. That is what was causing her to have swelling and pain in her right hand yesterday. They are ordering a chest Echo to be done today because her Chest X-Ray looked a little wet this morning. She has some fluid buildup but they don't know exactly how much. They were able to establish a PIV in her left foot in place of the PICC line. She is receiving a blood transfusion right now because her numbers were low. They have also decided to change her Methadone and Valium to every 12 hours instead of 8 so that she can be more awake more often. They are changing her Lasiks to IV instead of by mouth so that maybe it will be absorbed better. She is having some problems with swelling again. She is still tolerating her bolus feeds very well but they haven't made any changes to her feeding schedule.

Jeremy and I and the boys put our Christmas tree up yesterday. We decided to put the tree in Jo Jo's room in honor of her having to be at the hospital. We used one of her little blankets under the tree for a tree skirt. I know it may seem weird to have a big Christmas tree in a baby's room, but it is special to us. It's our way to be able to include Jo Jo in our Christmas morning when we open gifts from Santa. Yesterday we were talking about how much fun it will be next year when Jolianne gets to be home with us.

Spend the Night Party

Last night Jeremy and I went up to the hospital to spend the night with Jo Jo. It was really good to get to spend so much time with her. When we got there she was a little fussy so they let me hold her. It had been over a week since I had held her because of her surgery. It felt so nice to have her snuggled in my arms!!!! She stayed awake the whole time I was holding her. After I held her I started reading her the Wizard of Oz. I have never read the book, only seen the movie. The book seems to be very different from the movie. I am looking forward to reading it with her. She woke up a few times in the night crying. One time she held her breath for a little while and she turned purple. He stats went way down and her machines where blinking red. Most of the time when we are there it blinks yellow which means slight problem. I really don't like it blinking red!!! She did recover on her own and managed to get back to sleep. She woke up again around 3:00 crying. The nurse was able to get her to calm back down again and she didn't have any red lights. When we woke up this morning her right hand was very swollen. The nurse tried to give her some calcium in her PICC line and she started screaming. We are very concerned about this. The doctor ordered that she receive all medicine by mouth, which means down her NG tube that she gets fed through. They are going to leave her PICC line in because it is the only IV line that she has right now. They haven't talked anymore about Cath Lab and they didn't mention her going up to the 8th floor while we were there. I hope that she doesn't continue to have problems with her sats dropping so low when she gets mad. I really want to see her on the 8th floor, but I want to be sure that she is ready. She weighed in last night at 7 lbs 10 oz. She is getting so big. I am so proud of how strong she is. She keeps fighting every day. She is my little trouper!!!!

No infection

They have officially said that Jo Jo does not have an infection. They have stopped her antibiotics and taken her off of isolation. She is doing very well with her feeds, I hope that we can start practicing with her bottle soon. I am looking forward to working with the speech therapist to get her started again with bottle feeds. She has been having peaceful evenings with no problems. Her core temperature gets warm every now and again but all they do is uncover her for a little while and she goes back to normal. They started her on calcium supplements today. She always does really well when she gets her calcium drip so I think that they are going to start incorporating it into an everyday routine for her to have a calcium supplement. They are talking again about moving her out of the cardiac ICU and up to the cardiac floor. We will see how she does over the next few days. Hopefully we can be out of the ICU for Christmas. I am having a really hard time getting into the holiday spirit. Usually Christmas is my favorite time of year. I love to decorate the house and do fun things with the kids. I just can't seem to get my house decorated. I have had my decorations out for almost a week and still not much going on yet. I know that I need to get it together for the boys, I just feel really sad that Jo Jo isn't home. Every time I think about her spending her first Christmas in the hospital I get a sick feeling in my stomach and I just want to cry. I am trying so hard just to keep myself going for day to day activities that life requires, I am struggling with the extra that I usually have no trouble coming up with for Christmas festivities. It's almost like I feel guilty for having a good time while Jolianne is in the hospital. I know in my heart that Jo Jo would want me to be happy for Christmas and I am going to try very hard to get it together. My kiddos deserve to have Christmas Mommy, I just have to reach in a little deeper this year to bring her to the surface.

Happy Thanksgiving to everyone!!!

Happy Thanksgiving to everyone. I hope that everyone had a really nice holiday. I got to go and visit my sweet little girl today. Jeremy and I took our Aunt Tanya, sister-in-law Kim, and Kim's mom Barb to see Jolianne. It was Aunt Tanya and Barb's first time to see little Jo Jo. They really enjoyed getting to meet her in person. I have been missing her soooo much. I got used to seeing her every day but this week the boys have been out of school so I haven't gotten to go up as much. Jolianne is having a really good day today. Both of her cultures came back as negative after the first 24 hours. They said that they would have to wait for 36 hours before they can officially say she does not have a bacterial infection. They have started her feeds as bolus meaning that they will feed her large amounts at one time instead of doing continuous feeds. They still have Jo Jo on isolation status for the next 24 hours to be sure that she does not get any infections. They are talking about moving to the 8th floor this coming week. We will see how it goes. Little Jo Jo usually makes her own plans!!!!

We love you all,
Jeremy and Crystal

Little Jo Jo pretty in pink!!!!!

New and improved medicine tree.

Jeremy and I are here at the hospital visiting little Jo Jo. When I got here they were taking out the IV lines that were in her heart. They bled a little but the bleeding stopped after a little while. She has been a little iterated since I have been here. She wakes up now and again and cries. They have stopped her feeds again so she is pretty hungry. They have turned off the heating part of her bed to see if she can maintain her own temperature. Here little hands and feet seem cool, but I guess that is normal. If she were at home, she would have clothes on and socks and hat on so I guess considering the environment it is normal for her to be a little cool. I put some super cute socks on her and she is wrapped in her Disney Princesses blanket. The nurses fixed her a cute little bow as you can see in her picture. She is still recovering nicely. Here medicine tree is officially gone. She only has 3 things she is receiving right now. TPN, fat emulsions, and IV fluids to keep her ART line open. While I was writing this they decided to start her feeds again. Hopefully that will keep her happy. She is such a good baby. She only cries if something is wrong. It is really good to hear her sweet little voice again. It has been almost a full week that I haven't heard her cry. We were able to prop her up today in her bed and she was looking around everywhere. She kept looking back and fourth from me to Jeremy. I loved seeing her alert again. I know I have said it before, but she is like night and day when she has that breathing tube out. I am so grateful to see my little sunshine looking so good.

No more breathing tube.

I am happy to report that they took out Jo Jo's breathing tube yesterday afternoon. She was so glad to have it removed. Daddy got to be there while they took it out and he said that she was wide awake after. She is always so much more alert when she doesn't have the breathing tube. She is still turning a dark color when she gets upset. Dr Forbess (the surgeon) said that she will do that until she has her third surgery. She does recover on her own, so that is a good sign. They have started her feeds again so hopefully in the next few days she will be back to full feeds. They haven't mentioned Cath Lab again so we are not sure what the plan is for her Heart Catheterization. Maybe they will wait until next week when the Holidays are over. She is recovering so well. We give thanks to God everyday that he continues to heal her and make her stronger. Andy, Ronnie and I are going up to visit her today. I hope to get some pictures of her to post on the blog.

Love,
Crystal

They took Jolianne's chest tubes out today. They have stopped the Fentanyl and replaced with methadone. They have also stopped her sedation medication, Versed, and replaced with Valium.
She is having a pretty good day today. She is still in a critical state but it is not as critical as right after her surgery. They started her feeds again this afternoon. She is at 4 cc's right now and they will increase every six hours. They are talking about extubating her tomorrow. If they do, they will stop her feeds again at 4 tomorrow morning. She will go to Cath Lab this week but we have not been told what they will be doing. They may be just going in to take more pictures or they may try to coil some of the collaterals. Hopefully they will give us more information of Monday. I will let you know what I find out.

Closure Today

We just spoke with the surgeon and she said that Jolianne's sternum closure went very well today!!! We are still waiting to go back and see her but we are very happy to be to the next step. We pray that God will continue to bless little Jo Jo and keep healing her each and every day. Life is so precious, and we are grateful for every single day that we have with our precious little angel.

We have been spending a lot of time with a wonderful family that is her with their little girl having surgery also. I had mentioned her in one of my other posts. Her name is Brynn. I am happy to report that her surgery went well and she is in recovery two doors down from Jo Jo. You really get a chance to meet so many wonderful families up here that are going through the same things you are going through. Please keep all the little ones that are up here in your prayers. With the Holidays upon us most of these kiddos will be spending their first Thanksgiving and their first Christmas in a hospital room. Some of the kids up here are old enough to know what Christmas is like at home and are going to miss it so much. My heart goes out to all of the families that will experience a different kind of holiday season this year. I am going to do my best to make Jo Jo's Christmas as wonderful as I possible can. I know that you will join me in doing that.

Please keep Jolianne in your prayers. Family is welcome to come and visit and let Jo Jo know how much she is loved and cared for.

Love,
Jeremy and Crystal

They decided to wait until tomorrow to close her up. She has a little fluid retention so they want to stay on the safe side and give her a little more time to get some of the water out by urination. They are starting her on TPN fluids this evening for some nutrition and stopping her IV fluids and Calcium drip. They have told us to be ready for the closure tomorrow morning around 9:00. She had a really good day today, just sleeping mostly. Jeremy and I went to Barnes and Noble this evening and picked out some new books for Jo Jo. We got Wizard of Oz and Heidi. We are almost done with Winnie the Pooh so I am excited to start reading these new books with her including our Christmas book. I know we are going to be her for quite a while so I am glad that we have something that we can share. Thank you for your continued prayers and support. We could not get through this with you guys.

Love,
Jeremy and Crystal

Jo Jo's medicine tree

Jolianne had a very good night last night. No significant problems. I took this picture yesterday to show how many medicine lines she has. It is a little overwhelming, but the nurses know exactly where everything goes. I am so amazed by their compassion while taking care of Jo Jo. They are even keeping an eye out for me. I fell asleep on the couch yesterday and Jolianne's nurse went and got me a blanket and pillow and covered me up. We have met so many wonderful nurses, it really takes a special person to do this kind of work each day.

Hopefully they will be able to close the incision today. They want her to be at a certain fluid level before they can do it. She isn't quite there yet but it is possible that she will be by the time they get ready to do it. Our old roommate Brynn is having surgery this morning so please keep her in your prayers also. After they do Brynn's surgery they will do Jo Jo's closure.

I will let you know how everything went.

Love,

Crystal

1st Night Went Well

Jolianne's first night after surgery went well. We were sitting behind her bed last night looking at all of the lines she has and thinking to ourselves her bed looks like a big Transformer!!! We called it the JoBot. I wanted to take a picture but I didn't feel it was appropriate with her chest still being open. Hopefully they will close her up in the next few days. It is common for them to leave the breastbone open when there is so much swelling. The swelling has gone down considerably just in these few hours since her procedure. They don't have her completely paralyzed, just sedated a little to prevent her from moving around too much. She is very feisty though, she is already trying to kick her legs around. She has several new IV's, and too many lines for me to count, possibly 5 new IV's in addition to her PICC line. Before surgery and after surgery are like night and day. I know that is probably a stupid comment to make but experiencing the care she has received for the last 7 weeks, which is pretty intricate, seemed like a walk in the park compared to what she is getting now. They have a constant eye on her. I was actually able to get some good rest last night. I felt confident that she was being cared for very well.

I will write again soon,
Crystal

Surgery is Finished

Jolianne's surgery is finished. They have taken her off the bypass machine and her heart is beating on its own. They are waiting to be sure her vitals are stable for a little while before they bring her back to her room. Thank you so much for all of your thoughts and prayers today.

Today's the Day

Jolianne relaxing before her surgery.

Daddy and Jo Jo before they took her to surgery.

Mommy and Jo Jo before surgery.

Nurse Lauren doing one final vitals check before Jolianne went to surgery.

Jeremy and I spent the night with Jo Jo last night so that we could spend some extra time with her before her big day. They took her back to the operating room today at 1:30. They said that the surgery would take a minimum of 6 hours, some cases can take as long as 16 hours. They are putting a shunt into the pulmonary artery from the right ventricle to allow the pulmonary artery to grow bigger. This will be the first of many surgeries for little Jolianne. Please keep her in your prayers. We will keep you updated as we get information.

Love Jeremy and Crystal

Jolianne is having an Okay day today. She is experiencing some withdrawals from her pain medication last week. They have started her on a mixture of Methadone and Valium to help.
She lost a little bit of weight over the weekend going back down to 6 1/2 lbs, I think it was the extra water weight. When we saw her yesterday she looked completely back to normal. I had gotten so used to seeing her with water weight that now she looks small again to me. They have not given a surgery date yet. I will let you guys know as soon as they tell me.

Love,
Crystal

Ronnie and Jolianne

Ronnie's meets his sister for the first time.
Story by Ronnie Clayton.

I loved seeing Jolianne Clayton.
I loved seeing her pretty face and touching her and I love her.

Andy read us a story and I love you Jolianne. She has pictures that I made in her room and I love her. I liked touching her side. We held hands and she likes me. I told her I was her big brother Ronnie and I hope her heart gets better soon. I liked her puppy dog and her toy doll. I made her bed go down closer to me. I got toy magnets dinosaurs at the gift store. That is all. I love Jo Jo.

We're doing better.

Still has some swelling in her cheeks, but is looking a lot better.

We are doing a lot better today. They are talking about taking her off the ventilator tomorrow. I know that she will be a lot more comfortable when she gets that tube out of her nose. I know that she still looks swollen but it has gotten a lot better. She weighed in today at 7 lbs. She is getting so big. Ronnie gets to meet his little sister for the first time tomorrow!!! He is so excited. I will write again tomorrow and let you know how the meeting went!!!

Love,
Crystal and Jeremy

Heart Catheterization News

Jolianne had a pretty good day today. The swelling she was experiencing is pretty much gone now. She looks back to normal to me. She had another blood transfusion today. The doctors said that it was normal after a heart catheterization. Today they increased her feeding to 17 cc's an hour with 27 calories. Her weight today is 6 lbs 10 oz. I can't believe she is almost to 7 lbs. That is so amazing to me. She has really grown a lot in the past 6 weeks.

They talked to us a little today about what they plan on doing in her heart surgery. They are going to place a shunt in her pulmonary valve to open it up and allow more blood flow to get into the lungs. Right now she has what they call collateral arteries. Basically, you are suppose to have two pulmonary arteries. One goes from your heart into the left lobe of your lung and one goes into the right lobe of your lung. Jolianne created lots of little small arteries that go into the lungs causing the two main arteries to very small. In order for her shunt to work properly they will need to block off her collateral arteries. If they do not do the block, she would have too much blood going to her lungs and that would pose a really big problem. After her surgery, she will recover in the hospital and then be sent home to grow bigger. The second surgery that she will have will be to repair the hole in her heart (ventricular septal defect). They said that the 2nd surgery should be around 6 months after the first. Dr. Sheehan said that this will give her heart time to get use to the new oxygen saturation levels. After that they said that her heart will be completely fixed. We were told today that she only has 3 heart defects instead of 4. They are still diagnosing her with Tetralogy of Fallot. Dr. Sheehan said that her 3 defects were in the TOF family. We should find out on Monday or Tuesday what day the surgery will be. The surgeon is out of the country right now, but he will look at the pictures from the heart cath and see if he wants to proceed with the surgery. If he does not feel comfortable with it then it will be postponed further. We will let you know as soon as we find something out.

With love,
Jeremy and Crystal

Heart Cath today (maybe)

They have put Jolianne on the schedule today for her heart catheterization. She is the third case which means the procedure should start around 3 or 4 pm. If the other two cases take longer than expected then it would be later or possibly rescheduled for tomorrow. After they do the cath they should be able to give us some information on when they plan to do her heart surgery and what kind of surgery she will receive. I will keep you posted as I get more information. I am having to borrow Andy's cell phone right now because mine is broken, so you will not be able to reach me on my cell. Jeremy will have his though so that would be a good number to call if you want to check in. Please keep the prayers coming for little Jo Jo.

Love,
Crystal

Beautiful Eyes

Today Jolianne is doing better. The swelling in her face has gone down considerably. When I was visiting her today she was able to open her eyes and look around a little. I was a little worried when I saw that she was awake because she has been getting very upset when she wakes up and realizes that she has the breathing tube in. She didn't get upset at all today. Her heart rate was normal and her oxygen saturation's stayed up. (They had been dropping when she was awake) It was so awesome to see her beautiful little eyes again. She is a little over 6 1/2 pounds today. They had to move her feeding tube from her mouth to her other nostril because she keeps pulling it out. She really dislikes when she has tubes in her mouth. Jeremy and I like it better when she doesn't have tubes in her mouth also. She just looks so uncomfortable with her mouth propped open. I did notice that she has developed a small rash where one of her leads were attached to her tummy. The nurse said that sometimes the babies to get skin irritations from the leads. They reduced her ventilator down a little more again today to give her a chance to breathe more on her own. Jolianne and I have finished our fairy tale book and have moved on to Winnie the Pooh, we read one chapter every day. I hope that she likes the story. I already have our next book picked out. When I was a little girl my favorite Christmas book to read was called "The Life and Adventures of Santa Claus". I found it online and ordered a copy for us. (You gotta love the discounts of buying used books!). I hope that she likes the story as much as I did. Maybe it can be the start of a Christmas for us. Ronnie has a book that I read to him every year also. It actually started out as Andy's Christmas book but he has gotten a little old for story time =). Ronnie and I have already started reading our Christmas book at the house. I can't wait for next year when I can share Christmas stories with both of my little ones. Who knows, maybe even Andy will sit in for a story or two!!!

Love,
Crystal

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.