My boss's baby

[Kelly]

My boss at Kids Club had a baby recently who was born with a hole in her heart and a whole host of other heart issues. She has had several episodes where she stops breathing, and today they found blood in her diaper. She is scheduled to have heart surgery on June 17th. Please just pray that she can hang on till then and that the surgery goes well! I know God's hands are all over this, but it's hard to see a newborn go through so much!!!

[LauraA]

How is the baby doing? I'm praying for her now.

[sv3]

Praying for the little one and the family.

[Kelly]

No updates so far....I'm guessing no news is good news :)

[almostXbrooklyn]

yeah i've heard the no news is good news saying before... i'm assuming if something bad happened you would have heard.

i will pray for her! hopefully she will be able to hang on until surgery, and then that surgery goes as planned. you'll have to let us all know how everything goes once you find out!

[Kelly]

We started Kids Club camp yesterday so I got to check in with my boss. Star (that's the baby's name...I forgot to mention that before) is doing well...they're still just hanging on, waiting for the surgery, which is scheduled for a week from today.

[CherryCokeGrl]

I'm praying for Star and all of her family & doctors.

[Kelly]

Just got this update from my boss....all I can say is PRAISE GOD!!!!

Star had a great morning. She ate at midnight and made it until surgery at 7:30 without getting hungry again. Praise God for that! They administered anesthesia at 7:30 and opened up her chest about 8:30. They had her heart totally repaired by 10:30. They took her off of bypass right away and were able to take the breathing tube out very quickly. I don't know if things could have gone any better than they did. She is now in PICU. The anesthesia is beginning to wear off but they are keeping morphine in her to manage the pain. She wakes up every now and then and is pretty cranky. I would be too! We really felt God's presence today and are overwhelmed with the amount of support we are getting from our family and friends. I'm going to try to take a nap now but will post something tonight or in the morning.

[DawnAurora]

Whoosh Hallelujah!

[Kelly]

Another update:

Don't have any new pics yet. Star has just been heavily sedated and resting. It was probably the longest night of my entire life. The hours went by soooooo slowly. She woke up pretty much every hour fussy from the pain. Her chest tubes were leaking more than normal, but they gave her something to clot the blood, and they got a lot better. She kicked her IV out of her ankle. Sounds like her mama! We had to change the dressing on the IV in her neck and her two chest tubes. Of course she did not like that at all. It was a pretty rough 30 minutes changing everything and waiting for the pain medicine to kick in. It finally did and she got some better rest. She has been resting all morning. They have taken her off the sedative drip, so Jason and I are waiting for her to wake up. We want to both be here when she does. If she is hungry, we will be able to feed her a little and see how she handles it. We will be able to take the arterial line out of her wrist later today. That will be great because I can tell it is bothering her. Anyway, overall she is still doing great!

[LauraA]

A great report because of a GREAT God!

[Kelly]

Here's a picture of Star....

http://www.carepages.com/usr/G77277/P1552784_FS.jpg

There was another update, but in the interest of saving you all the reading and medical jargon, I'll paraphrase....basically Star's temp and heart rate have been high all evening so they are running tests to make sure there's no infection. Will update as soon as I know more.

[LauraA]

Oh, she's such a sweet pea! How precious. I'll keep praying for her. Please let us know when they update.

[sv3]

God is Grrreat! Thanks for the cute pic Kelly!:D

[Kelly]

Her temp and heart rate are back down, but they found fluid in one of her lungs so they put her on medication to try and flush that out. She has also had a bloated stomach so they ran tests to check for more fluid and they're waiting on the results from that. They're giving her pain meds periodically and she's sleeping well, so that's a great sign!

[LauraA]

How are the parents holding up through all of this?

[Kelly]

They're so tired...but so strong! :) They're taking turns being in the room with her and going out to the waiting room and napping.

[LauraA]

I can imagine....we'll just keep lifting them up to the Lord.

[Kelly]

Hey guys, this is a two part message today....an update and a prayer request from Holly. I'll just copy/paste her message this time:

Praise God! The fluid is clearing from her lungs, so it looks like we will not have to have the chest tube. It is not 100%, but it is looking real good. The oxygen tube is out of her nose and she is maintaining a good level between 96 and 100. The drainage tubes are coming out of her chest today and she will be moving out of PICU. She ate real well twice this morning and has kept it down. She is off Fentanyl completely and is just taking Motrin and one other thing orally(I keep forgetting the name). I believe these are the meds she will go home on, and she is doing great on them. She is real comfortable right now. Thanks for all of your messages. I am getting them and they continue to give us peace and comfort.

Please pray for a family that was in here last night. Their daughter who was 14 passed away late last night after being in here quite a while with an infection in her lungs. It was very sad, but they were praying constantly and I could tell they had a very strong faith in the Lord. Just pray for peace for her family. I'll update again this evening when we get more good news!

[Kelly]

New update.....

Neck I.V. is out! Chest tubes are out! Fluid in the lungs is lessening. We are moving out of ICU shortly and possibly going home tomorrow!!! She is feeling great, smiling, and laughing out loud!

PRAISE GOD!!! :D

[Kelly]

Well the bad news is that Star will not be going home today. She got very dehydrated last night from the medicine they used to drain the fluids from her lungs...but they stopped giving her the medication this morning. She ripped the IV out of her arm, but they decided she didn't need it anymore anyways, so that's gone :) Everything is being given orally now. They just want to hold her for one more night to see how she reacts to oral meds vs IV. She should be moved out of PICU tonight sometime and go home tomorrow! :) She's been doing a lot of kicking and laughing and the cardiologist said she could barely hear a murmur now! :) So she may not have to be on any longterm meds! Praise God!

Holly said she would continue to update from home for several weeks, so yay for that!

[Kelly]

My bosses called me into the office today to help with some paperwork so I got to talk to Holly and get an update on Star....then she posted this on their page....

We saw the cardioligist yesterday. I finally have news to post! We saw her heart on the sonogram. It looks great! Everything is in tact. The ventricals are now separated and the pulmonary artery is widened so that blood can flow more feely to the lungs. They actually found a small hole between the atria as well when they opened her up, so that is repaired too. When they widen the pulmonary artery, they actually have to remove most or all of the valve that keeps blood from leaking back into the heart. So, she will have a little leakage that could cause the right ventrical to enlarge over time and cause rhythm problems, but in 20 to 30 years she will have an artificial valve put in. That will hopefully be the only other procedure she will have to have. She is also off of all meds. The fluid on her lungs cleared up and there is no inflamation around the heart. Her scar is healing up nicely. She is still having some emotional trauma, which is causing me emotional trauma! Just kidding. The doctor said it can take a few months before they feel safe and secure again after going through something like this. Poor baby! We will see the surgeon on Thurday next week, so I'll update you again after that.

[LauraA]

Thanks for that update. Wow...I didn't realize babies have emotional trauma for some time after surgery. Poor babies! One of the little ones I watch had surgery on her spine. She had a small lump on it, but they got it all fixed up.