ICU 2

Last night Jovie did very well. She's gone through an incredible thing and her body is still in shock. The breathing tube came out last night at about 12am and she is breathing on her own now. She is starting to wake up this morning and has been very upset. She wants me to pick her up and hold her but I can't and it kills me. 

They've already decided that she will be in the ICU for at least another 24hours. She's still on some support to control her blood pressure and something that is helping her heart pump. 

They warned me that today will be the hardest for her because she will be waking up but still has so many wires going everywhere she will have to stay still and we can not hold her and comfort her the way she wants. 

I will keep updating the blog when I can.  We can not thank you enough for your prayers for our girl. 

Surgery Tomorrow

Today we spent the day at the hospital getting ready for Jovie's surgery tomorrow.  This is more overwhelming than anything I've ever done. It was just an incredibly hard day. We met with nurses and doctors one after another describing in detail the surgical proceedure, every risk involved and all to expect when we see Jovie in ICU tomorrow after it's all done. I tried my best to hold it together in front of the doctors but all I really wanted was a sound proof room to go and scream and cry and get out this crazy feeling I'm having as the time ticks closer. See I know this surgery is not only necessary for her LIFE, but we will get an active little girl... A PINK little girl very soon. 

We have to be at Egleston at 6am in the morning and they will take her back to the operating room at 7:30. We heard different times for her surgery. We were told the surgeon will take 5-6 hours and we were told to expect 9-10 hours that she will be away from us. Whatever the amount is, we know it is not a small surgery and however long it takes doesn't matter as much as what they find as they operate on her and that everything goes smoothly. 

We heard today that the piece they are putting in to act as her pulmonary artery will need to be replaced by open heart surgery in 3-5 years from now. There are also many more times that she will have to do additional work on her heart through her main artery (catheter).  I know that I need to focus on tomorrow but I also know God needs to make me strong from this. There's more hard times ahead. 

My dear friend just sent this to me tonight. 

I  know God can do exceedingly and abundantly more than I can even think or ask. I am praying we will receive an unleashing of God's peace through this. Not little drops of his strength or a trickle, a powerful explosion of release as if a dam has burst to release a river of his peacefulness. 

John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Jovie's Catheter

So this morning we arrived at the Sibley Heart Center at Children's Hospital of Atlanta. The nurses got Jovie set up with a little gown and the sensors that stick on to keep track of her vitals on the monitor.They didn't do anything at all that hurt her but she still was so upset by them. The doctors came by and introduced themselves and helped explain what was going to happen while they had her under anstesia. Every time anyone came into our room Jovie would show them they weren't welcome -- it's clear she knew something was up. They took her back a little before 10am and put her under and started the catheter, did blood work and an extensive ECHO while she was still. This way they have every bit of information to go by to make the best plan on how to fix this baby's heart. The board will meet today to go over everything and we will hear this week what they say. Her resting oxygen level was at 79 (it should be 100). While she was awake today it would go up and down, up and down from 60 to 74. 

When they came to get us after she was through they expected her to sleep for a while, but not Jovie. She woke up as soon they took her breathing tube out... Before we could even get to her. She was crying and very upset. Her little hand had the IVs and cords all over and the blood pressure cuff would tighten every 15 minutes and really make her mad. She is a brave little girl and I was glad to see that she was mad and acting like herself - this little tiger baby was determined to recover quickly. 

She was drinking and eating pb&j and the nurses were all impressed with our little girl's improvement. They started saying that if she continued to do well we would not have to stay over night for recovery. 

They told us Ian would not be able to be back in the room with us but when we got there they never questioned it. This meant that Cody didn't have to stay in the waiting room all day too. Ian was AMAZING! We woke him up at 5am and he seriously could not have been more happy and agreeable. He even got off the chair and got a toy to give to Jovie while she was upset. He gets a gold star today - everything went absolutely as best as it could have gone! 

God sure did answer our prayers today and we know all the prayers surrounding this day have been heard. Y'all, we were checked out of the hospital by 2:30!  We are HOME to rest and let Jovie recover here in her own bed.

In a box

Ah thank you, we got emails and comments from y'all with all kinds of suggetions for the car sickness. I did them ALL! I went to CVS and bought the sea bands for Ian, I put my iPad on the back of the seat so they would look forward, I fed them an hour earlier, turned the vent toward them and kept the car cool, I gave them a small dosage of Benadryl and I took a longer way to school to avoid a curvy route. Whew! And it proved to work, no puke to or from school... and Ian wasn't so upset either! 

I don't know which one of the many tips worked for us, but I am a happy momma if this continues to help them!! Thank you to all who shared your tips! Ian and Jovie thank you too!

So while Mae was in school I took Ian and Jovie to the grocery store to stock up on essentials - we are supposed to get a bad wintery storm here! And when we got home I made us all lunch and sat at the table between them. 

Ian and Jovie were having a little conversation among themselves and as it continued I found myself saying, "hey guys, what are y'all talking about?" I sat there quietly realizing I'm the third wheel here! Jovie and Ian are talking and laughing and I have NO idea what they are going on about! Bet that's never happened to you before! 

 I am glad they have each other. (: 

I want to give my thanks to Amazon for providing my kids with priceless entertainment. A very large box was delivered today, I guess I've found the perk to having 2 in different size diapers.  

They all wanted in and loved it! Every kid loves boxes, right? My 3 were enthralled and I realized the treasure I had too! Look all 3 are being contained and don't even know it (; So I made it my goal to see how long I could make this last... 

For a long time the box itself was fun. They'd all sit down and then all stand up over and over. I think they love being together. 

Next, I gave them crayons to color the box. The little ones liked the sound it made to color over the corrugated cardboard. They were trying to make it sound as loud as they could. 

When crayons were old I fed them snacks.

I got a full hour of *free* box babysitting! I actually got to CLEAN my house up for the first time in ages. Anyone got any other ideas for next time? 

Jovie's heart

Yesterday was Jovie's Cardiology appointment. They did an EKG, and Ultrasound among other tests. From these tests they said Jovie's right and left ventricle are one, without a separating wall.  A normal heart has four separate chambers - one side for blue blood and the other for red, her heart has the oxygenated blood mixed with the unoxygenated blood together. 

She is also missing her pulmonary artery that goes to her lungs. This never formed at birth and her body has had to find a way to survive without, but it is not enough for her to sustain life and will continue to worsen.

Her oxygen level was 66 today and they took it again and it was 69. A normal heart should be at 100 so this is very very low.

We will have to go to Egleston to do a catheter on her to be able to tell everything before they can plan for her surgery. When they do that she will be fully asleep and they can draw blood, and do an extensive ultrasound as well. After the catheter her case will go before a board of 20 doctors to discuss the best possible way to go about helping her. This will not be a one time fix and we have to move on this very soon, the doctor said that from where he's sitting he would emit her into the hospital today but wants to try to give her a few weeks home. He told us to anticipate open heart surgery in the next 3 months. 

This news is overwhelming and I cried for most of the day yesterday and even writing this I realize how I knew all this from the beginning and I should have been prepared. But how can you prepare your heart for something like this? There just aren't words I can put for all the emotions we are feeling. I'm just so heartbroken and scared for her.  Our precious child will have to go through so much and I'd really hoped she could have more time with us before she had to. 

Yesterday was also two weeks since we first met Ian and Jovie. We are still learning each other and growing together as a family. These things don't happen immediately... But as they are growing to trust us more and more it's amazing to watch each of their personality coming out. For a year we longed for them and now we get to know them - I am so humbled God made them to be our children, and that we get to learn their every freckle, their fears, ticklish spots, and likes and dislikes...

We are still struggling to get much sleep through the night with them waking up crying - this morning was another 4am start to the day and I was worried we'd have trouble getting to our 8:50 doctors appointment - well I think we had enough time to get ready. 

I love these pictures of Ian and Jovie playing in our pantry. I love seeing the interactions between our children. I can't wait until all three have really bonded together as brother and sister.