Flutter Fly...

My little angel is spreading her wings and is trying to fly. I don't want to get to excited, but we have had a relatively good day. They started her on a new med. to help decrease her chest tube output, but it will take a few days to see if it works. Dr. Allen is very pessimistic about this med, but doing nothing wasn't working either, so it's worth a shot. She did spike a fever this afternoon, poor baby 102.4, this was about an hour ago, she seems to be much more comfy now. Her heart rate had been 130-140 overnight, this morning 150-160, afternoon 170-180...she did reach 190 when she spiked her fever. So thank goodness it is starting to come down. They had to give her a little extra pain meds because she was so uncomfortable. The new med she started can cause an ucky tummy, so it could be that too. All I know is that she was not having any part of me about an hour ago.
I had made plans with the nurse to hold her before Daddy gets here. He gets upset when I hold her because she gets agitated when they move her from the bed to me and then back...it always makes her heart rate race. So I figured if he wasn't here to see it it would be ok. Well she was already upset, so I just let her rest. Broke my heart a bit I really wanted to hold her, it's been a while. Guess it gives me something to look forward to for tomorrow! I know my baby and she needs her mommy just as much as I need her, so I think holding her is what is best for both of us. Plus it gives her a different position to be in...that alone ought to be worth the fuss!

I do have something really exciting to report. Although she is still receiving a lot of support on the vent, they decreased the rate and the peep today. She is still breathing over the vent with the decrease! I do not want to focus on it to much, because Dr. Allen said we are no where close to extubating, but it is just nice to see some change. He said we should still plan on the trach for next week.
Ok well Gabi heart rate is going bonkers again, she is exciting I am bragging about her...I must get back to my angel!

Gabi's Grace

Pictures from our good friend Carey, Chelsea's Mom cbranam.blogspot.com

So many of you have been following along for a while now. I have to make a note of change to our Buddy Walk Info. The date is just around the corner, Septmeber 22. We decided to change the name to Gabi's Grace. I felt it was more appropiate than Gabi's Groupies! Anyways we are far from our goal so I am asking for your help. Depending on the upcoming weeks she may not be able to attend the walk, so I really want to make a big appearance in honor of her. So far we have 9 people walking on our team, anyone can walk it cost $20 to walk, but it does include a t-shirt with her team name on it...Gabi's Grace! Or you can make a donation and not walk. If Gabi is unable to attend I am going to have something special made for our team members! So please click on the link below and be apart of Gabi's first Buddy Walk!!! Apparently it doesn't go straight to her page, so on the home page, click on Find Team, then under team name enter Gabi's Grace. Sorry for work, but I lost the direct link!

https://www.syssolutions.com/kcbuddywalk/Main/MyTeam.aspx?Reset=Y

One more thing, the t-shirt deadline ends in 9 days so if you want one act fast!!! You can still register after the deadline you just can't get a t!

Gabi says, Thanks to all my peeps!!!

Day 42

Well we were really looking forward to today, but then nothing...again! We continue to sit and wait. We talked this morning with Dr. Allen, it wasn't as optimistic as we had hoped. Obviously we are in PICU for a reason, she is still in a very serious stage. There are a lot of small issues that never seems to get better.
Yesterday I was super concerned with the fact Dr. Allen increased her food 10cc's more than where we started for the day. I should of said it today...I TOLD YOU SO! She threw up a little in the middle of the night after she was given her sodium chloride, which HAS happened before. Oh and you will never believe this... return of the explosive bottom!!! Poor baby, now they are going to take samples of her stool. Momma knew she could not handle 22cc's at 26 calories. Today they stopped her feedings to give her tummy a rest and she is back on the TPN, iv feedings.
As far as the fevers go...still a mystery. They continue to culture her every time and thankfully nothing grows back. So we are staying lucky there, but it still stinks because if something did grow back then we would at least have some direction.
We spoke with Dr. O'Brien our surgeon, he said as long as things stay where they are and we can continue to focus on her nutrition and may be figure out the fevers then looks like next week we will do the trach. Seems a bit scary, but at least then we have some direction and we can be more involved with PT. In fact, PT stopped by today and gave me a few different exercises to work on with Miss Gabbers! Her joints are a little stiff, but who's wouldn't be after laying around for 6 weeks, with very limited movement.

Beginning of week 6

Wow, I cannot believe tomorrow we will of be here 6 weeks. That is way to long and I know that we are not anywhere close to leaving. It is very exhausting and sometimes I wonder how we will go to the end, but then we look at Gabbers and our answers are right there in front of us.

Today she is being challenged of her feeding, she went from 12cc's this morning to 17cc's and this afternoon she will finish out the day at 22cc's. Not sure why we are pushing so hard today, but I will ask when the doctor comes around. She has had some respiratory treatments today, her lungs were a little clasped in some areas. Same thing as before so hopefully tomorrows x-rays will be back to normal.

She was spoiled by Nurse Shelia last night...thank you!!! She is sporting a blue blankey with cute stars. Her hair is back to her diva ways, piggies with red scrunchies...she our doll baby!!!

That's all I know for now, so I will keep you in the loop:)

Be sure to check out the previous entry, it's another video!!!

Waving

Gabi wanted to give a shout out to all her peeps out there! This is the cutest, I just happened to catch it and I thought it would be fun to share. Even though she has not had much activity, this was a big step. And I would never make it out to be more than what appears:)...ENJOY!!!

Something to Think About...

Well after yesterdays overwhelming news about the possibility of a trach, things seems a bit more in the right perspective now. When have talked to the Gudde family, Isabella has a trach and we plan to call Nate and Amy to talk to them about Kaden. We have talked in much depth with the doctors and nurses and we are waiting to speak to our surgeon on Tuesday. So we have a big week coming up. I pray that God gives us the strength to make the best decision for our angel. There are so many pros and cons to do the trach, but at the same time there are many pros and cons to keeping her on the vent. Jason and I are asking a ton of questions, so I know we will make a very educated decision.

Today has been busy, lots and lots of visitors. Gabi has had a fairly well day, she ran a little fever this afternoon, but nothing alarming and it is slowly coming down. She got an increase in her formula today from 8 cc's to 10 cc's, and then tonight they will increase again to 12cc's. So she is getting about 50% of what our goal is...we are slowly getting there.

Today she did the cutest thing, we were talking to Dr. Klem about the trach, and she was laying obviously on her back she reached up with her right arm and starting wiggling her fingers, like she was waving. She has never done this before and Jason and I lite up...it was perfect timing for a serious conversation with the doc.

On that note I will say I hope all has a good evening and I will update tomorrow...look forward to a new video, if I can remember how to do it!

Game Plan

Well today did not go as we had hoped. I made arrangements for Gracie to spend the weekend with her mommy and Micah and I are going to spend the weekend at the Hospital. We were very excited to be able to spend the night with her again especially since she has been having crazy high temperatures at night. Well, the doctor came in to give us an update with still no understanding of why she is spiking and then began a new conversation with us on something we need to start considering...Tracheostomy.

This is something that has not really crossed our minds and the Doctor didn't really give us much to go on other than her needing one. Later on the nurses gave us a lot of the positives to having the trach. Micah and I are going to spend the weekend discussing and researching Trach's...So Nate and Amy I'm sure we'll be giving you a call as soon as we get a chance! haha

I'm not sure if Micah mentioned it or not but the National Convention for Down Syndrome was this weekend in Kansas City. So our friends Carey, Ryan, and their beautiful little girl Chelsea (cbranam.blogspot.com) from Topeka came to visit, Logan couldn't make it, he was with Grandma. It was so good to for Micah to see Chelsea and Chelsea warmed up to Micah enough that she reached out twice for Micah to hold her. It definitely made the day much easier for Micah so thank you Carey and Ryan for coming to visit and bringing Chelsea with you.

We don't really know much more about Isabella other than she has a virus that they need to figure out what it is so they can start targeting it to get it out of her body. They are a very strong family but continue to need our prayers. They are a long ways from home and have been up here at CMH for a very very long time. Isabella also has a Trach so I'm sure we'll be talking to her mom and dad very soon as we figure out our decision with the Trach for Gabi.

Well we hope to report that by us being her that Gabi will not have a crazy high temperature and insane heart rate in the morning report! If that is the case I'm sorry but Micah you're not going to be coming home for a while! haha

Love,
Jason, Micah, Gracie, and Gabi

Pretty Pretty Princess

Yesterday Gracie and Nurse Makayla put a dress on the little princess. She looked absolutely beautiful if I may say so myself. And she kept the dress on for most of the evening. We left to go out to dinner around 6:30, Mimi and Papi showed up to visit with her. Well not to long after they got here she got very hot...temperature spiked to 103.4. I cannot believe it got so high. She seemed a little agitated when we left, but gees oh petes. So I am so glad my parents were here to watch after her. They stayed until she feel asleep, which was around 9.

She had a pretty good night after she finally broke her fever.

Today has been calm. Changes today...6 cc's to 8 cc's of formula and they turned off the epi again, hopefully for good. So far things have gone well, she was sleeping when Gracie and I got here. As much as I want to see those big blue eyes, it is more comforting now to see her get some good rest. Later today I am going to hold her, I have been dying to all week, but she has just been so agitated, and it is a lot of work on her. But today is a better day, so I am definitely going for it.

Gabi loungin

and Gracie strikin a pose!!!

A Calm Day...

The only change made today was her formula...4 cc's to 6 cc's.

She is still getting lots of time in the bouncy seat. She really seems to enjoy it! I think it has to do with the fact she is in a new position rather than being on her back all the time. She has been getting some quality sleep, which I am so thankful for. She has been really restless earlier this week, so it's been good catch up the last day.

Tonight our neighbor's Matt, Jess, and their little one Joellen, are taking us out to eat. We're excited, it's a place we have never been, Bone Fish Grill. They have been gone most of the summer and we are excited to get to hang with them. I know Jason sure does miss fishing with Matt. So we are doing the next best thing to cooking our own fish we will go to a restaurant to do it for us. Anyways, thanks guys we can't wait!

Good Vibrations

Today for the first time Gabi got to sit in a bouncy seat. She stayed really calm and seemed to love it. Her heart rate even came down a bit while vibrating.

Not to much has changed today...seems to be the trend. They did wean her down another 10% off of her sedation meds. And they increased her formula from 2cc's an hour to 4cc's an hour. Basically that amounts to 4 drops, it's a little more than that, but she is tolerating well. They did take her off of an antibiotic thinking it was the reason for the increase heart rate for the last two days. She had another fever last night, 102.2 they think that might have to do with the antibiotic too. We won't know for sure for the next couple of days. Well Gracie just informed me Gabi fell asleep in the bouncy seat, she has been very restless, so I am so excited she was able to relax enough to catch some z's.

Isabella was doing a bit better yesterday, so thanks for adding her to your prayers. I will have to visit with her parents later to find out about todays progress.

So today Gracie, Mema, and I went shopping. It was really good therapy for me. We had a great time, it helped me stay distracted and I think that is exactly what I needed. So thanks again girls!

Angie, I am having lunch with a friends tomorrow so please don't come to early, I want to be sure I am here when you come.

Nate and Amy, I gave Matt and Megan you email info. so hopefully they will be in touch with you. She said thanks so much!

Special thank you to all who have left us such wonderful comments, it helps brighten my day!!!

Love to all...