Jo Jo had a pretty good day today. Her cardiologist says that she should be able to go home within the next week. Today I took my CPR training class and our Social Services rep came to talk to me about Home Health. I really can't believe that we are getting so close to going home. It almost feels like a dream. Jolianne is receiving her feeds over an hour and 45 minutes. She only needs to get it down by 45 minutes and she can come home with us. We hope that she will be there by this weekend and we can spend the night with her with no monitors on. We have continued to practice giving her meds and preparing her feeds. It feels so good to be taking care of my little angel. It is so weird to be getting up every few hours to feed her and comfort her. She is 3 months old now and I am just now doing these things. I hope that tomorrow Jeremy and I will get training on how to place her NG tube. That is the last of our training and we will be cleared to take her home as soon as she gets her feeds where they need to be. Thank you so much to everyone for their continued prayers and support. We could not do this without you!!!

The Training Has Begun.

Pretty Princess

Yesterday afternoon they went ahead and pulled Jolianne's PICC line out. This morning they turned off Jo Jo's oxygen machine and she is doing very well without it. They said that we can remove the cannula today if she continues to do well. I have started learning how to give her medicine in her feeding tube. They let me do her meds this morning and I will get to do the other meds that she gets this afternoon. I am going to learn how to place a NG Tube on a practice doll this afternoon. Then I will do a few on Jo Jo so that I am familiar with the process when we go home. I am suppose to take a CPR class sometime this week also. We are hoping that they have one on Friday so that Jeremy does not have to miss work to come to the class. Jolianne continues to do better and better each day. I can hardly believe it. It seems like we have been here so long and to finally see a light at the end of the tunnel is miraculous!!! We will continue to pray that Jo Jo will not have any trouble and she can get her feeds down to where they need to be and then we will start our new adventure: "Life at home with Jo Jo".

Some pictures

Making Amazing Progress

I know it has been a while since I have written. We have been so busy lately. With the boys off for Christmas it has been a little bit of an adjustment to my routine with Jo Jo. We had a really great Christmas and the best present of all. On December 26 (Saturday) Jolianne was moved to the 8th floor. I was a little nervous as first because I heard that it was very different from the ICU. It is very different, I get to take care of Jo Jo and do regular Mommy stuff. Changing her diaper, rocking her when she is upset, getting her formula so that she can eat. I also get to get her dressed each day. I really like that part. I do have to call the nurse in to undo her PICC line because she has to clean it really well when we are done. I am giving her baths and changing her bedding too. They are working on taking her off of her cannula and just breath on her own without any extra help from the machine. They are also talking about getting rid of her PICC line because she is receiving all of her meds by mouth now. She is barley getting any pain meds and she is tolerating that just fine. She will probably have to go home with the feeding tube in because she has fed that way for 3 months. Once they change her feeds to bolus, we will start working with speech therapy again so that we can start practicing with a bottle. Once we get home she will continue to get speech therapy and physical therapy in our home so that she can get caught up on where she needs to be. They haven't really given us a go home time yet. They just say that it will depend on how quickly she can get to 1 hour on her bolus feeds. She has to be able to tolerate getting her food down in one hour. As usual we will just have to wait and see how she adjusts to everything. She has looked really great for the past few days!!!

Jolianne had a great day today. She is doing very well off the breathing machine. She has been a little sleepy the past few days so they started holding back on some of her sedation medication. Today she was awake a little more than yesterday. We are keeping our fingers crossed that she does not come down with an infection and have to be placed back on the breathing machine. I really hope that she can continue to get better and get to go to the 8th floor sometime soon. They are saying that it will be at least 2 more months until Jo Jo is well enough to come home. She still needs to get a little bigger and they also want to be sure that the VSD does not cause any problems that would put her life in danger with us living so far away from the hospital. It is still very possible that they will need to fix the VSD before she can come home. We will just have to wait and see what happens. At any rate, I am so very happy that she has been comfortable these past few days. It means so much to me to look into her eyes and not see any pain or discomfort. Yesterday, before I held her, she was crying and they asked me if I wanted to hold her to try to calm her down. I said that I definitely would love to hold her. As soon as she got situated in my arms she nuzzled her face to my chest and fell right to sleep. It felt so good to have her in my arms. Any one out there that has the opportunity to hold a baby, take them in, all the way, that is something that I don't think I really did with the boys. They way their hair smells, the way their face looks so peaceful, the way their breath feels on your face. It is all so magical. I don't take those things for granted anymore. I never know, when I Jo Jo, how long it will be until I get to hold her again. Things can change so quickly in the ICU. I have to be glad for the good days and pray that the bad days will get better. That is the only way that I can make it through each day!!!

Finally

A picture is worth a thousand words!!!!

The Ups and Downs of Hospital Life

Well, a lot has gone on since I last wrote. They took Jo Jo off the breathing machine on Tuesday evening. She did very well all through the night. They took out the Central line that was in her right leg also. Since she has the PICC line, they didn't feel like she needed the Central Line. They said that the placement of that line in her groin area was at great risk for infection because it is in her diaper area. The PICC line is a long term line, so as long as they have it established they really don't need another one. Wednesday morning she was running a fever. They took some blood cultures and sent them to the lab for testing. She was also having some trouble with her lungs. Her right upper lobe had collapsed causing her to not be able to oxygenate her body properly. Because she was having to work so hard her heart rate was up in the 180's. She also started to have labored breathing. Her stomach would suck in under her ribs when she would take a breath. They decided to put her back on the breathing machine to help get her back where she needed to be. They didn't want her body to go too long without having sufficient oxygen because that can cause organ failure. We were very sad that she had to be put back on the breathing machine. We understand why it had to happen, but it is still hard to see her in so much discomfort. When I got to the hospital today, she was awake and having respiratory therapy. She seemed to enjoy it. They give her a massage on her back to get her lungs free of an secretions that build up. She used to hate it, but now she really enjoys it. After her massage she was wide awake. I talked to her for a little while and told her some stories. She was really paying attention and seemed to enjoy the stories I was telling her. When I would walk away she would get upset and cry. It really made me feel good to know that she liked me being there and that she was aware of my presence. We were really hoping that Jo Jo would be off the breathing machine for Christmas so that we could hold her, but it seems like that may not happen. We will just have to wait and see. It is 8 days away so you never know!!!

New PICC Line in Place

Jolianne was taken to Radiology this morning at 9:00 am. They were able to establish a PICC line in her left arm. Everything went very well. She is sleeping right now and is still pretty sedated from the procedure. We were told yesterday that the Surgeon and her Cardiologist make the decision as to when her next procedure will be. They round each morning at 7:30 with the Attending Physician and make their plans. The attending physician then rounds with the other doctors at 11:00 to decide what the plan is for her for the day. Right now her surgeon and cardiologist are not wanting to move forward with her surgery. Hopefully Jeremy will be able to speak with them soon so that we can have an understanding of what they are thinking at this point.

Still making progress/Day 76

Jolianne had a pretty good weekend. They have stopped her pain medication Fentenyl and are giving her Methadone as a substitute. She is having some withdrawal symptoms but everything is manageable at this point. They are still weening her off the vent. They are sending her to Radiology tomorrow to have another PICC line inserted. She has a central line in her right leg right now but they would like to have one other point of access for her since she will be there so long. Hopefully she will be off the vent tomorrow or Wednesday. She has handled her feeds well so far. She is up to 1o right now and it should increase to 12 cc's an hour at 12:00 this afternoon. Jeremy is going to try to talk to Dr. Forbess this week and see what his plans are for her next surgery. They haven't mentioned anything about it in the past few days so we aren't really sure what to expect right now.

Sorry I haven't written to update Jo Jo's status lately. My Internet has been acting very weird. Jolianne has had a really good past couple of days. They are going to start weening her off the breathing tube today. Hopefully by this weekend she will be off. They are also going to start feeding her again today. We are slowly making progress. They didn't talk about her surgery at all today at rounds so I am not sure what the plan is. We may not know anything until next week. Her swelling has gone down so much, she looks like herself again.

I would also like to ask you all to say a little prayer for Jolianne's Heart Buddies today. Some of them are doing well and some are not doing so well right now. There are so so many ups and downs in this place. We pray for more good days for these little babies, we pray that their parents will find some kind of peace at this time of year, we pray that God will continue to hold their little hearts in His hands and do the powerful work that only He can do.

We would also like to say Congrats to Bryson for getting off of the vent!!!


Love,
Crystal

To My Daddy

I am a fighter. I will never give up, I will never give in.

One day you will sit in our living room and cuddle me in your arms until I am fast asleep.

One day you will push me on the swing set and I will giggle and laugh because we are having so much fun.

One day you will teach me to ride a bike and I will plead with you to let go so I can do it by myself!

One day you will hand me the keys to a car and smile in your heart when I drive away even though you are scared to death.

One day you will see me walk across the stage and receive my diploma.

One day you will walk me down the aisle and give my hand to the man of my dreams.

One day you will look back on my life and be so proud of everything I have become.

Every day I will thank God that he gave me such a wonderful Father.

Love always,

Jo Jo

Another Rough Day

Jolianne has more fluid on her lungs today. They did her daily chest x-ray this morning and saw that it was cloudy on the left side. They ordered a Chest Sonogram and found that she did indeed have fluid on her left side. They said that she also has more fluid on her right side. They are going to discuss it with the Attending Physicians and see what they want the next step to be. They also had to do a blood transfusion on her today. It has become a weekly process for her to get blood. She does do better after she has received her new blood, so that is a good thing. The bad part is that she only has one point of access now so they had to stop her pain meds to give her the blood. About an hour into the process they had to stop the blood and give her more pain meds. I hate that she is pain and requires the medication regularly. You can really see it in her face that she hurts and needs to be comforted. Because she is on the vent right now and I can't hold her, all that I can do is stroke the side of her head and tell her it is ok. Her belly is still extended. The nurse told me today that her intestines are swollen because they are having to readjust to the repair of her collateral arteries. They are watching it closely and measuring her belly every 4 hours. The swelling in her hands has gone down today. They have called in an occupational therapist to start working with her right arm. They are going to be doing exercises with her to get her used to using that arm again now that the clot is gone. Her little hand was all wrinkled from her skin being stretched out for so long and then going back to normal. I hope that they can figure something out with the fluid on the lungs. We aren't really sure what the next step will be. They may have to go ahead with the 3rd procedure pretty quickly. I don't know though. They have always told us the bigger she gets the more problems she will have. I hope that they can get her to a good point soon. It seems like it is always something lately.

Prayer From A Friend

A friend of mine, Marcella, sent this prayer to me yesterday and I wanted to share it with you. It really touched my heart and lifted my spirits. Thank you Marcella.


You, Jolianne, are God's daughter, complete and healed and whole, shining in the reflection of His Love. In you is His creation sanctified and guaranteed eternal life. In you is love perfected, fear impossible, and joy established without opposite. You are the holy home of God Himself. You are the Heaven where His love resides. You are His holy Sinlessness Itself, for in your purity abides His Own.
(based on W-pll.14.1:1-6)

Nothing big scheduled for this week

Jolianne is having a pretty good day today. She is a little more swollen today than she was yesterday. They have increased her diuretic again today in an effort to relieve it a little. The doctor told Jeremy that if her stomach doesn't get any smaller, they are going to have to put drainage tubes in her stomach to get the fluid out. He said that if she continues to have respiratory problems they may have to do her 3rd procedure sooner than later. They just have to see how it goes with her. It is possible that she will need to stay in the hospital until all of her heart defects are fixed. It will all depend on Jo Jo.

Good Weekend

First of all I want to say Thank You. Thank you to everyone that has sent us such wonderful words of encouragement and love. It fills my heart to the brim to know that there are so many friends and family praying for Jolianne daily. Some of the people I know and some of them I have never met before. It amazes me that she has touched the heart of so many.

Jo Jo had a pretty good weekend. Me, Jeremy, Andy and Ronnie went to visit Jolianne as a family of Saturday. We took a Christmas movie for Ronnie to watch so he wouldn't be too restless. It felt good to know that all of my kids were at the same place and the same time. I can't wait for the day when we can do that everyday!!! She is experiencing some swelling again, but that is pretty normal for her when she is on the vent. They are giving her some extra medication to help her lose some of the water weight. Our goal for the week ahead is to slowly get her off the vent and get some of this water off. I hope that she is able to handle not being on the vent. I am hoping that after her collaterals have been fixed she won't have as much trouble with her lungs. I also miss holding her and getting her dressed. She has some super cute Christmas outfits that I am dying to try on. My sister-in-law Kim brought her a few Christmas shirts and I laid one of them on her chest, it covered her entire body!!! I told her that she can wear it as a dress instead. We I get her clothes together I think how small they are and then when I get to the hospital they seem so big. She is growing pretty big but she is still very small.
I will keep you updated on how she is doing.

Love,
Crystal

I Hope. I Want. I Know.

Three simple statements, I used to put these into the same category. The key to success. Hoping that something will happen, wanting something to happen, knowing that something will happen. They are very different to me now. Let me explain...

I HOPE
I cried today. The kind of cry that leaves you trying to catch your breath. The kind of cry that you do when you are alone because, quite frankly, you don't want to me comforted. You want to get it all out. You need to get it all out. When scary things happen, tears find their way out, but not like this. This is the cry that you do when the numbness of the event wares off. When reality creeps in and takes a hold of your soul. The kind of cry that leaves you curled up in a ball on your bed praying that sleep will find you and take this pain away. I know that this will sound really horrible, but I couldn't wait to leave the hospital yesterday. I had to leave. I didn't want to leave Jolianne behind, I wanted to leave the fear behind. The uncertainty of what will happen next. It followed me home and haunted my dreams all night. I HOPE that Jolianne will never have to experience something like that again. I HOPE that the fear will get better. I HOPE that this is the last time I will feel so helpless. The reality is all of these things will happen again. I am not hopeless, I believe that everything happens for a reason, but I do acknowledge that it is not in my hands. God has plans for each one of us. It does not always turn out the way we want, but we do have to realize that he is in control, whatever His will is, that's what will be.

I WANT
The other day I was looking through Ronnie's backpack and found the schedule of events at school for the month of December. I was so excited because I know he has been working on a Christmas play. I scrolled through the month and came to December 17th. Kindergarten Music Program. That's what I was looking for, but wait a minute. There is something else happening on December 17. I can't figure it out just yet so I ask my older son Andy, "When is your Christmas Concert?". Andy plays percussion in the 7th grade band and I know that he has been working hard on his Christmas Concert as well. He walks away from me and I say a little prayer, "Please don't let it be the same day, please don't let it be the same day." He hollers at me from the desk, "December 17.". Of course. That is a logical thing right. The school planned two music programs on the same night at different schools. There is no one in the world that might have a 7th grader and a Kindergartner in the same household. I look at the times, Ronnie is at 6:15 and Andy is at 7:00. No problem right! Of course there is a problem, that's the way my life works now. I AM NOT ALLOWED TO MAKE ANY PLANS. Both of my children are so excited about their events, both of my children would like me to be there for their entire program, both of my children deserve their parents to be there to support their hard work. We haven't even thrown Jolianne into the mix. What if she has another episode that requires Jeremy and I to be at the hospital on that evening. I WANT to be able to be there for each one of my children. I WANT to be supportive to things that they are interested in. I WANT them to know that they can count on me to be there in their time of need. But it doesn't work that way. I can want and want all day long but, at the end of the day, I am one person. I can't be three places at the same time. I HOPE that I can work it out to watch both Christmas programs and experience the beauty of music with both of my boys this year!!!

I KNOW
This will be a short section because there is not a whole lot that I know!! :) I KNOW that I love my family dearly and that they love me back. I KNOW that someday I will be able to breathe again. I KNOW that I have a whole new respect for life and how fragile it is. I KNOW that eventually everything will be OK. I don't know exactly when or how we will arrive at that point, but it will come.

I KNOW THAT GOD HOLDS MY HAND EVERY DAY. HE BRINGS ME PEACE AT NIGHT AND HOPE THE NEXT DAY. HE WILL NOT LEAVE ME, THIS I KNOW FOR SURE!!!!!

Cath Lab went Great

I am very happy to report that Jo Jo is out of cath lab and doing well. They were able to coil the two major arteries that were causing all of the trouble. They were both on her right side of the body. The collaterials on her left side are very small and not causing any trouble at all. She said that the next step will be to get her off the vent and up to the 8th floor!!! I am so grateful for all of the prayers and support!!! What a turn around from yesterday, God is with us all the time. I hope that this is an open door for a new start with Jolianne.

Phase two of surgery today.

Yesterday was a very scary day for us. We almost lost Jolianne. She stopped breathing and her heart rate went down to 40 beats per minute. Normally it is 160 beats per minute. She had a blockage in her breathing tube which was causing her to not be able to catch her breath again. I can't quite put into words the experience right now, but I can tell you that things have changed considerably. In my heart and in my mind things are different. They hospital has become a very scary place to be. I am in fear most of the time. Every time I see her start to choke or her heart rate go down I have flash backs to what happened yesterday.

They are going to go ahead with part two of the surgery this morning. The attending physician said that we need to get her in A.S.A.P. All of the problems that she is having is from a very big collateral on her right side. He said that she will be a completely different person when she comes back. We have also come to the realization that she has something wrong with her right arm. I have suspected a problem for a few days now, her arm is completely limp. When you hold her hand she does not move her fingers at all, when you lift the arm up it flops back down. I hope that her arm recovers and she doesn't have any trouble with it. She is also bleeding a little from her new IV line. They had to put a line in her Jugular Vain in her neck. I hope that it doesn't turn in to a big problem. It seems the longer we are here the more problems we encounter. I will write again when I know something about her Heart Cath.

Love,
Crystal

Yesterday they had to stop Jo Jo's feeds because her belly was getting a little too extended. They took an x-ray this morning and said that everything looks ok. She is scheduled for her Heart Catheterization today. They said that she would be 3rd case so it will be later in the day when they take her back. Closer to 3 pm or 4pm. Because she is the last case it is possible that they will move her to tomorrow if the other two cases take longer than expected. They are sedating her now so that she can get plenty of rest. It has become so hard for her to do normal functions that they feel it is just better if she sleeps so that she doesn't keep having her heart rate and breathing dip down so low. I really hope that they can go in and fix some of her collateral arteries today. I hate to see her in such a critical condition. It seems like she is worse off now than she was before her surgery. I know that they said it would be a two step process, they failed to mention that in between procedures that she would suffer so much. Her hand is still swollen from the blood clot. They said last night that it would take a few weeks before it gets back to normal. Originally we were told a few days. Things change everyday. I just feel so worn down at this point. We are on day 65 with no expectations of when she will possibly get to go home. I try to have goal markers but like I said, things change daily. One minute they are talking about moving her out of ICU and the next minute they are putting her back on the vent. At first we hoped that she would be home for Christmas, then we hoped that she would be home at the first of the year. I just don't know anymore. She is on her own schedule, not mine. I have gotten to where I dread calling to check on her because I am so scared of what they will tell me. There was a point where it was always, "She is doing fine, just resting." Now when we call there is always something scary going on. I just wish that she could be better. I want her to be comfortable and happy. Maybe they can get some things resolved today and get her on the way to recovery.

Lost in the land of Oz

I was at the hospital today visiting Jolianne and I read to her from our Wizard of Oz book. The part of the book that were were reading today was where Dorothy is on her way to Emerald City and she stops to talk to a munchkin family. The munchkin said to Dorothy, "On your journey you will see beautiful things but you will also experience some rough times, but it is worth it if you make it to Oz and the Wizards helps you get home." My mind started to wonder and I thought about Jo Jo. She is in her own little Land of Oz and all she wants is to make it home. We see good days and we see bad days, sometimes back to back. We have to make it to the Wizard so that Jolianne can get her heart fixed and come home to us. It is amazing that you can hear a story a hundred times but one day it fits perfectly into your own life. Sometimes I need to ask the Wizard for some brains, and some days I need courage, and sometimes my heart feels broken and I need a new one of those too. But no matter what obsticles we encounter we still have to keep pushing, we still have to keep fighting, we still have to keep steadfast to our journey. Like the Wizard says at the end, "It was inside you all the time!" Some days we just need to dig a little deeper to find what we are looking for.

I love you Jolianne, it tears at my heart to see you in pain. I know that you are struggling right now. You are such an inspiration to all of us. You have so much courage and strength. You endure every thing that comes your way. I know that you will grow to be a strong, smart and caring young woman. You are my strength, you carry me through each day. I can't put into words how much I miss you when I have to leave the hospital each day. I look forward to being able to hold you in my arms again.

We're off to see the Wizard, the Wonderful Wizard of Oz........

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.

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 :)

Trying new things

Jolianne is having a great day today and is trying something new. They have changed her feeding to every 3 hours instead of a continuous feed all of the time. They have also started letting her practice taking a bottle. Today she weighs 5.7 pounds. She looks so healthy. I was noticing in her pictures that she looks like she is filling out more. Here are some pics that we took today with the speech therapist.






Jolianne is tasting formula for the first time on her pacifier.



















I am holding her while the speech therapist gives her the bottle.







I changed her diaper and she woke up a little more, then I got to give her the bottle. She didn't take very much today. We are going to try again tomorrow when she is more hungry from her change to 3 hour feeds. We will keep trying so that she gets use to what she is suppose to do. With babies who have been tube fed it doesn't really sink in at first that they have to work for the food. They are use to it just going into their stomach. One day at a time, we will take baby steps ;)

Doing Good

Jolianne is having another good day. She is up to 13 cc's an hour with her feeds and is still at 24 calories of supplements. Today she weighs 5.5 pounds. She is still tolerating her feeds with no problems at all.

Last night we carved pumpkins for Halloween. We all got our own to design. Daddy even did one for Jo Jo.

Jo Jo's 1st Halloween Pumpkin

Andy, Ronnie, and Jo Jo's pumpkins from left to right.

Shopping for a little girl.

Jolianne had a really great weekend. She is up to 8 cc's with her feeds and is at 24 calories from her supplements. She is tolerating it very well with no episodes of getting sick. They are talking about putting Jo Jo in an open bed again, but we need to be sure that she is going to tolerate her feeds. She is 5.2 pounds so she is making progress.

Now I have a funny story to tell...

A few years ago my friend Sonja and I went school shopping at lunch for Andy and Ronnie. We drove over to the outlet mall and went into the Old Navy and within 15 minutes I had 5 outfits for Andy and 5 outfits for Ronnie. Everything was interchangeable. No fuss at all. I was good to go and ready for school to start. Sonja said to me, "Wow, I can't believe that you got 10 outfits so quickly." Until today I didn't really see what what so amazing about my shopping for the boys.

Today I was once again at Old Navy, this time I was in the girls section. I think a better description would be that I was GAZING into the girls section with twinkling eyes. Everything looked so cute. In front of me was a cute little sweater with a bunch of different colors of pink. I looked to my right and there was ANOTHER cute sweater with butterflies and flowers, beside that were some little blue jeans with butterflies embroidered on the leg, oh and look beside those pants some little pink pants with flowers. And look at those cute little Mary Jane shoes....and on the wall, there is a gold sweater dress and some burgundy pants and some cute little shoes....and beside that a little ballerina skirt and a frilly pink top. I am whisked back to being a little girl and dressing up your favorite dolly. I see super cute hats and coats and leggings. So much to choose from, WHICH ONE DO I LIKE THE BEST...I can't choose, I like them all. I look down and I have around $2oo dollars worth of clothes in my hand. At this point I had to say to myself, "Crystal, if you go home with all of these clothes, Jeremy will divorce you. No counselling, no trying to work it out, just divorced!!!!" So I slowly start to put the sweaters back and the shoes back, and the legging, and the blue jeans, and the ballerina skirt and the hats and...everything else. I walk down the aisle empty handed toward the door. "You can do it Crystal just keep your eyes on the door." But wait...now I am in the boys section and they have jackets out. I remember that Ronnie lost his jacket on the playground last week and I promised I would get him a new one. So I am looking at jackets with Wolverine, and Hulk, and Spiderman and Superman. Which one, which one. Which superhero would my little Ronnie like the best. They are all so cute. Then I remember, this is for Ronnie. Ronnie doesn't care about cute, he cares about a jacket being warm on a cold day. My mind was still in girl mode and I needed to get into boy mode fast before I ended up with 4 jackets ha ha. So I pick a gray jacket with no Superheros, that happened to be on sale. (yeah me!) I paid for the jacket and left the store. When I got to the car I realized I was there for an hour!!!! Now I know what Sonja meant. With girls there is no grab something and go. You have to coordinate, and plan and make several different outfits to see which you like the best!!! Not the case with boys clothes. =)

I realized two things today:
1. If you go girl shopping you better have a good chunk of time set aside.
2. Never go shopping for girls and boys on the same day, my brain can't handle it!!!

I hope everyone is having a good day today,
Love-Crystal

Jo Jo's New Room

New lights installed by Daddy and Andy

New top trim installed by Mema and Pepa.
New floor and floor trim by Daddy

Jolianne's room is comming along very well. Thank you so much to Jeremy, my mom, my dad and Andy for putting in such hard work to get her room together. I know it will mean a lot to her to know that you all did so much for her. These are a few pictures of Phase I of getting the room together.

Ups and Downs

Sorry I haven't written in a while. We had a pretty crazy week. Tuesday evening Jolianne had a fever of 104. Wednesday morning they decided to do a lumbar puncture to take spinal fluid to test for infection. They also took a few blood samples and a urine sample. They stopped her feeds and started her on a general antibiotic until they found out what was causing the fever. While they were trying to take blood she got sick and threw up three times. The last time she got sick there was a little blood. This was very concerning. Having two boys I have seen my share of scrapped knees, bloody noses, and scratches. I usually do pretty good assessing the problem and doing whatever it takes to get the "boo boo" taken care of. Nothing can prepare you for seeing your 3 week old daughter throw up blood. I tried my best to keep it together but I finally had to turn around and cry. The nurses said that she was fine, I just had a hard time believing it. Luckily Jeremy was there and he hugged me and told me everything would be ok.

Thursday they still held off on her feeding and decided that they needed to place a suction tube in her stomach to take out the extra air she had. They said that this could be causing her discomfort. She seemed very unhappy on Thursday. She would cry out every now and then and looked like she was in pain. Once again, nothing for me to do except for stare at her through the glass. I really feel very useless when I can't touch her or comfort her. I hurts in my sole. All I want to do is pick her up and cuddle and tell her that everything is ok, but that never seems to happen. Thursday evening they called to let us know that she had a urinary tract infection. We were very happy to hear that she didn't have an infection in her spinal fluid or her blood.

Friday she had a wonderful day. No fever, no getting sick, no painful look on her sweet little face. They let me hold her. They said that she needed to be cuddled a little bit after such a hard week. Truth be told, I needed to cuddle her also. It felt so good to have her snuggled in my arms. She slept like a baby!!!! Very peaceful and very happy.

Jeremy and I are on our way to see her now. Thank you so much to everyone for your prayers and you understanding. We are doing the best we can to juggle work and the boys and Jolianne. Sometimes it gets very overwhelming but we are able to make it through because we have such an amazing support system.

Love,

Crystal

New Oxygen Tube

Update on Jo Jo:
They have placed an oxygen tube in Jolianne's nose to help with her oxygen desaturations. They moved her roommate out of her room because she had a fever. We are still being very cautious with Jolianne because we do not want to expose her to any illness. Even the simplest of colds can cause her a lot of trouble. We will continue to keep her in our prayers with hopes that she does not get sick.

I would also like to ask you to pray for my nephew Christopher who has been diagnosed with Swine Flu. We hope that the family and those that have come in contact with him will not get sick also.

Love,
Jeremy and Crystal

Blood Test Results

Daddy & Jo Jo

Jolianne's blood culture came back normal so she is not sick with a cold or the flu. She did not get sick last night so hopefully she will continue to do well. The nurses told Jeremy last night that she does need the supplements or she will not get bigger. They said that since she has a heart condition it makes it harder for her to put on weight because her body has to work extra hard to process everything. She is still in the isolette and will continue to stay in the ICU until they figure out what is causing her to throw up the mucus. I will keep you updated as I find out more info.

Love,

Crystal & Jeremy