Thursday, January 10, 2013

Baby Gracie Update

SO, I can't remember if I shared on here, but I'm going to put it out there for the few of you who don't follow me on facebook.
One of my 1st cousins got pregnant about the same time I did. Her official due date was the day after mine. She was excited to find out that she was having a girl this time. She has a little boy a bit older than Amber. She was not excited, however, to find out not all was well with her little girl. She went to two specialists & they both agreed, the little girl has poly-cystic kidney disease. Her kidneys are twice the size they're supposed to be. She's guaranteed to need a kidney transplant at some point in her life, whether it's pretty much immediately or if she'll make it to her teen or adult years before she needs it remains to be seen.
The immediate concern is that the over-large kidneys wouldn't allow her lungs to develop properly.
She was delivered today (15 days early) via planned C-section (due to the complications) and was born breathing, but stopped & was intubated. We're waiting to hear more.
For those of you who are so inclined, prayers & good thoughts are greatly appreciated!!

No news on my little boy, but I have been extra-extra grateful for his apparent health & vitality.

Gracie Update - She is on the ventilator. They said it would be days before they will know something. They have spent the last hour running tests and we will just have to hang tight for answers. Jenn and Brent were on their way in to meet their daughter a few minutes ago.

Another cousin, Gracie's aunt, posted this about an hour ago(6:40ish): "Just saw the most beautiful baby girl. She opened her eyes, she acted annoyed with the ventilator tube and she was furrowing her eyebrows and trying to use that little tongue to push out her tube. With that spunky attitude, she is bound to be a fighter! Keep praying-I need to be able to hold that little girl in my arms. The hardest thing ever was only being able to look."

Gracie's mom just posted a pic of her (7:50ish) & said "Grace's first breath took ours away ♥ she looks just like her daddy and brother ♥ "

An update from last night from Gracie's dad: "Ok one more quick update before this night comes to a close. Unfortunately we do not know a whole lot of information at this time. She was born at 8:36 this morning, she was screaming pretty good. She wore out after a few minutes so they decided to go ahead and put her on a breathing machine. She is still on the breathing machine at this time. Not much has changed at this point. They're going to run all kinds of tests in the morning. Everything is still very much pins and needles hour by hour. They're still trying to get her breathing figured out. We do know she is a fighter as she gets very fiesty and has pulled out an IV already. So once again thanks again to everyone for the visits and messages and prayers and support. The nurses couldn't believe how many visitors she has had. Jenn and I are so overcome with all the support we have received. If you have anymore prayers left though we will still take them."

1/12/13- Update from Gracie's dad: Not much to update today. She has not gotten better but also has not gotten worse. She is still using the ventilator quite a bit but they have turned down the amount of breaths it is taking for her. The doctors cannot really give us any type of prognosis at this point as all we can really do is wait and hope she gets stronger and that her organs are healthy enough to get her through. We have a monster of a fight ahead of us and again cannot express enough how grateful we are for all the messages, prayers and visits. Jenn is doing very well. She is up and moving around on her own. Thanks again everyone it really does mean the world to us.

2:30pm - Gracie is doing much better than they had expected... She has taken over a lot of her breathing and tomorrow they expect to take out both tubes for the air pockets! They keep adjusting the ventilator down so that she can do more of the work!

~7pm - From Gracie's mom: "Tomorrow is going to be a bitter/sweet day...getting to finally leave this hospital and uncomfy bed, but having to leave our little girl behind....we know she is in AMAZING hands though!!! We got all checked in at the Ronald McDonald House, so we are thankful we can be right across the street, and not 45+ mins away from Grace. Dr said that Gracie is moving in a positive direction!!! I am just praying I can finally hold my baby girl tomorrow or at least sometime soon, I wanna kiss that face of hers ♥"
~10pm- From Gracie's dad: "Today seems to have been a pretty positive day. The Dr.s are still slowly turning down the ventilator. She has two chest tubes that hopefully they are going to take out tomorrow. Which means Jenn and I will finally be able to hold our little girl. The Dr. said she seems to be moving in a positive direction. So we have a little momentum to build off of. Jenn looks to be discharged tomorrow. We have checked in at the Ronald Mcdonald house and will be staying there for a while. Still fighting still praying. Thanks again to everyone. You will never know how much the support means to us."

1/13/13 - From Gracie's dad: "Today's Dr. Update: Spoke with the Dr. this morning. He actually said she looks great. Which coming from him is a pretty awesome statement as he does not beat around or sugar coat things. They just finished taking both of her chest tubes out. She is still on the ventilator but it is way down from where we started as well as she is ok with room level oxygen now. Jenn and I have an appointment at noon to get to hold her for the first time. Pretty excited for that. The Dr. is also hoping to try taking the ventilator out tomorrow. Amazing things are happening. Jenn should be discharged sometime today. Again and again I cannot thank everyone for all the support we have received."

Later - From Gracie's Dad, Brent: "Trying to get some laundry done. Finally got to hold my baby girl this evening. Jenn got the first try earlier today, but I got to stare into her eyes all evening during my turn. We're all settled at the Ronald Mcdonald house now. Dr. said if her numbers stay stable they will try taking out the ventilator. Which is exciting and scary all at once. Hopefully we can keep this good momentum train a rolling. "

Jenn wrote, "First family photo, and NO we are not missing anyone, Grant [Big brother] is behind Brent! hahah He was shy"

1-14-13 - Update from Aunt Chrissy: "Look who is testing out being tube free!"
In response to a friend asking how every thing is going, Jenn says, "really good...brents holding her now!! Staceys moms is our nurse today!!!b love her!! they still have a few concerns with kidneys..but the specialist comes wed!! she is holding her own and they are taking the top off the bed and if she can stand that with out help she can move to open crib!!!"

From Brent: "Todays official update: I believe today is the first time I have ever cried tears of joy. We walked into the NICU to see our baby girl with no ventilation tube. Nothing in her now except an IV which they hope to take out tomorrow. Got to hold her again this morning and I can tell I am already her favorite. Tomorrow Dr hopes to take the IV out and begin regular feeding. Maybe even put her in an open crib. Right now she just has the roof off of her little house. It is amazing how far we have come in such a short time. We are not out of the woods yet but have made an amazing improvement. Again and again and again I cannot thank everyone enough for all the prayers and support and help we have received. We are surrounded by awesome people."

1/17/13 - Gracie was checked by the kidney specialist yesterday, Brent's brief update said "Dr said graces kidneys are fine for now. Will have to monitor the closely tho. She ate good this evening and got moved to a big girl crib. We are moving right along"

Oh my goodness! It doesn't get much better than this! Gracie's other aunt, Becky, posted this:

1/17/13 - From Brent; "Not much to report today. No news is good news right now. Grace ate well all day. She has been running hi blood pressure which is pretty common with the disease. So Dr will be looking into treating that. Still hasnt mentioned going home yet but hopefully soon. Still moving in a positive direction. Pretty lucky to have no setbacks so far. Day by day. We shall see what tomorrow brings."

1/18/13 - From Brent: "another not much to report day. still trying to work on eating. she is getting better but her little body just gets tired and wants to go back to sleep. dr wants her to be eating more per feeding before we can get out of here. we shall see what tomorrow brings."

1/27/13 - Baby Gracie needs your prayers again. I'm not sure what's going on, just that she's "taken a step backwards" & is still in the NICU. Meanwhile... Kevin is apparently not interested in sharing his B-day with Grandma P., despite my efforts. :/

From Brent: "Haven't updated for a while so figured I better. Unfortunately the last couple days have not been our best. On Friday they decided to go ahead and put a feeding tube In her. She was getting to exhausted from bottle feeding lost some color and had no energy. Over the next day she started to lose interest in feeding at all and became very lethargic. She also started having trouble maintaining proper oxygen levels. So she now has a small flow of oxygen. She looked much better today but still seemed to have difficulty catching her breath. After some tests the dr decided her heart was not functioning properly to which the cardiologist wanted her transferred to St. Louis. The dr here convinced him that was not yet necessary as he felt her intermittent blood pressure was causing the heart problem and wanted to start meds for that to which her kidney specialist did not want to start in fear of the effect to the kidneys. Long story short we are trying the Blood pressure med and praying that fixes the heart problem but doesn't hurt the kidneys to much. She also is back on an iv and no longer feeding with milk. just getting nutrients from the iv. And that's where we sit at this very moment. All prayers will definitely be appreciated."

From Jenn's comment on one of her pics last night (1/28/13)- we were starting to get worried she went from eating and acting fine to not eating and needing oxygen..but sunday night the dr faught for her to get an eco of the heart and thank god he did...bc they found out her heart was getting starting blood pressure meds to see if that fingers crossed it does!! She looked sooo good today compared to yesterday!

Took me a bit to catch up on that, because (as you can see from my other post, I was busy on Monday having my own baby! ;)

2/1/13 - From Gracie's aunt Chrissy, in response to a Q about how she was doing - "Back on a feeding tube and a little oxygen....she's on bp [blood pressure medicine because it was straining her heart and she was getting too tired to eat, no talk of going home yet, and we are now past the three week mark "

Later that evening, from Brent - "Still doing battle at the NICU here in springfield. Things seem to be progressing in a positive direction at the moment. Back to regular feeding some from the bottle some from a feeding tube. Hopefully she will get stronger and build her lungs up and be able to breathe a little easier. She is back to being a pretty responsive baby and has her sassy attitude back. She also just got new twin neighbors as her old neighbor got to go home. Learned some pretty interesting info from her genetic test as well apparently she has 3 variants that have never been discovered. So now lucky Jenn and I get free blood tests to find out more. Yipeeeeeee! Thanks to everyone for all the support it means more than you will ever know. Please feel free to come visit anytime as we are here all the time and enjoy visiting. Maybe someday we will get out of here :)"

2/2/13 - I got really worried for a second reading Jenn's status, but I think it's a good thing overall. ;)
She says- "VERY sad day for this mamma :( baby girl is almost to big for newborn clothes and she has not even been home to wear what is there...guess its time to stock up on bigger sizes"

2/3/13 - From Jenn - "What a great morning with my baby girl! Let the boys have the morning to sleep in, came to see Grace and she was feeding tube free!! Also, fed her and she had that bottle done in less than ten mins and after she stayed awake the whole time to bond with mamma! My baby girl is back and better than ever!!!"

2/10/13 - After exactly one month in the NICU, baby Gracie is coming home! :D

My aunt, baby Gracie's grandma, made a video for her. :) [Edit: I'm not sure who made it... as I see other family members post each one has a diff credit. I think it was Brent's step-mom.]