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........