The Great Escape...

So Jason and I decided to head south...Atlanta, GA and then off to West Monroe, LA. We had been sitting around the house and figured it was a long weekend and we don't have Gracie so it was the perfect opportunity to get away and have some good "us" time. Some would say we are running from our problems, well for those who know us know that is absolutely not the case! Erica was super excited we'd visit ATL, I hadn't been here in years. And for Jen well I have never been there so it is about time.

Call us crazy but we took off at 2am this morning and we made great time. For what was supposed to be a 13 hour drive, we stopped 4 times and made it in 12 hours...we didn't even speed...hahaha!!!

Well we will keep all informed on our adventure. Hope everyone has a fun and safe Labor Day!

A DAY TO REMEMBER!!!

Many of you mentioned how you wished you could of been with us on Saturday to celebrate Gabbers...well a dear friend of mine, Carey captured what was the most difficult day of our lives. I must say though, I am so thankful, because I said to Jason once we got home I wished I'd of had some pictures. These pictures were taken before all the flowers arrived, can you believe there were even more. The tulips were a very special gift from my incredible T21 family...21 tulips in 3 vases. Everything was breath taking. Thank you to all that made this a day we will remember as the best worst day of our lives.

God bless you all!!!

And know that we all have a very special angel watching over us!

I love you punky...one of momma's many nicknames

GIFTS OF GABI'S GRACE

Everyone keeps asking what our foundation will benefit. Well we haven't sat down and wrote it out specifically, but we have a direction. We will defnitely keep Gabi's story alive and we want to help families in similar situations. Families of children with D.S. and have long term hospital visits (longer than a week)... we want to be like a money tree to those families. We were blessed with an amazing families who have helped us in more ways than we can count. We also had the flexibility in our schedule because we own our own business. My full time job was Gabi and Daddy could work from the hospital. We spoke with many many families who had to quite their jobs and or had very little income coming in. Those are the families we want to help.

So in a nut shell that will be our focus, although this week we will get more specific!!!

Thanks for all of your support so far!!!

Love to our sweet Angel above!

An Amazing Celebration!

The day was perfect for Gabi and there are so many people we would like to thank for that. I'm sure I'll miss someone and if I do, just know if you were a part of the celebration of Gabi's life we love and thank you for it. This could end up pretty long so prepare yourself!

Benji who is a personal friend of ours was also the funeral director. She was amazing in all she helped with and how she set up the flowers and Gabi's pictures. We are so glad that we had someone we knew to help us through that part of the most difficult time in our lives. It is almost indescribable how beautiful the arrangements were.

We defnitely want to mention Sara our photographer. We took some amazing photos when Gabi was 3 months. We kept putting off ordering them and we called Sara on Monday and she worked her magic. We cannot thank you enough Sara, you are an incredible person, and a fantastic photographer. Visit her site www.saratafoya.com

Without all of you that sent flowers though there would of been nothing for her to arrange. All the flowers that were sent were so beautiful and very much appreciated. We would like to send out a very special thank you to our Trisomy 21 community that sent the three vases with the 21 tulips in each along with the "Welcome to Holland" Story. With that, we would also like to thank the Esteban family for coming and introducing themselves. As they were a family that was drawn to Gabi's story from this blog, and came to pay their respects.

We want to thank everyone that attended the service as we hope you found it as beautiful as we did. A special thank you to Matt and Megan Gudde who are the parents of Isabella that has been so frequently mentioned in our Blog. Them along with a few of Gabi's nurses made it to the service which meant the world to us. By the way Bella is doing better but continues to need our prayers. That little girl has a lot of fight left and we can only hope that Gabi is now helping her with that fight.

Our Church....wow...where to even start here. Our little church is so amazing it takes my breathe away every time I think of all they have done. First, Mr. Cain did a great job with conducting the service. Our Church family also provided the lunch after the service which was enough food to feed about 300 to 400 people...no joke! We had so much food left over Dorothy made the suggestion that we auction off pies for "Gifts of Gabi's Grace." Oh and what an amazing idea that turned out to be. Auctioner Freddie ended up raising a little over $500 for the fund just by auctioning off pies. That just goes to show how incredible our friends and our church family is.

Our Family. This is one that takes more words than I have in my vocabulary. My brother said it best when he spoke at Gabi's service by saying "We are now closer with our in-laws than most familys ever have the pleasure of being." All of our families have come together to support us and each other in so many different ways, that there is no way I can list them all. It makes Micah and I feel so blessed because there are so many people that don't have families like we do, so thank you to our families.

To my brother...he has taught me so many things as my older brother. Some better than others but overall he has been amazing throughout all the trials of my life. Yesterday my brother showed me why I respect him so much as a man. He found the strength to get up and speak very elequently during a very difficult time out of love for me, my wife, and Gabi. I love you Freddie...thank you for being such an amazing brother.

To our friend Mike and Tami who found the strength to stand and read poems for us because the people that wrote them or found them knew they wouldn't be able to get through the words. We love you both for accepting the challenge and doing such a wonderful job.

Again to all of our friends and family we love and appreciate all of you. As I said on Saturday I plan on fighting every day to make sure that Gabi's influence is not gone in 6 weeks. I want everyone that has been touched by her and learned to be so much more appreciative of life, love, family, and our children to continue to remember Gabi's impact forever! Stick with us on the blog for continued updates on the foundation and how we will be trying to continue to spread Gabi's Love!

Love,
Jason, Micah, Gracie, and Gabi (Our Pink and Squishy Angel Above)

Special Request

Remaining States - Rhode Island - Wisconsin - South Dakota

Ok...I don't want to stop trying to get to all 50 states but we do have a special request. We want to remind people that this is a celebration of Gabi's life and the continued celebration of her memory. Please don't feel like you have to dress in dark colors. I will be wearing a blue suite with a pink shirt and pink tie for my pink and squishy. Micah will be wearing grey with yellow for her sunshine. Gracie will be wearing black and white polkadots for her gabber goo! Dress to celebrate a beautiful little girl.

Here is the information for the services again.

Saturday August 25th starting at 10:30 AM at the following church and address.

Lawrence Heights Christian Church
2321 Peterson Road
Lawrence, Ks 66049
http://www.lawrence-heights.org/

Memorial Fund - Gifts of Gabi's Grace

We also want to remind everyone that even if you have never met us in person if you have followed along with us on this journey you deserve to be at the service to celebrate in her life with us. Not to mention we would love to meet the people that our daughter has made an impact on.

Love,
Jason, Micah, Gracie, Gabi (Our Pink and Squishy Angel Above)

Gabi touched so many...

I know we did this once before, but we want to get an idea of how many states and countries are still with us. I can tell by the number of hits we've received we are all over. I know how much of an impact our angel made and we like numbers, so let us know where you are from. Please list your state in the comment box. Thanks so much!

Daddy wanted me to add that our celebration is open to anyone and everyone that Gabi has touched. She was an amazing little girl and we would be more than pleased to meet all of you! So even if you've never met us before, you have been a part of this journey as well and if you can we would love to see you there.

States - 47 Foreign Countries - 9

Ohio - Florida - Indiana - California - North Carolina - Delaware - Iowa - Arizona - Kansas - Missouri - Louisiana - Georgia - Colorado - Illinois - Pennsylvania - Michigan - Utah - Texas - Kentucky - Connecticut - Nevada - Oregon - Mississippi - W. Virginia - Tennessee - Alabama - Arkansas - Oklahoma - New Mexico - Washington - South Carolina - New Jersey - Minnesota - New York - Virginia - Idaho - Nebraska - Vermont - Massachusetts - Montana - Maryland - Maine - North Dakota - New Hampshire - Hawaii - Wyoming - Alaska

South Korea - Canada - Mexico - Australia - London (United Kingdom) - Sweden - Germany - Japan - Peru

NEVER FORGOTTEN

We miss our little angel, So infinitely dear...We shared a whole lifetime of love In your short lifetime here. If it had been within our power We'd not have let you go...And yet, we trust the One who said He loved the children so. And though the years will pass— "Time heals all wounds," they say, We'll always miss our angel sweet— The one who went away. But we can smile— For up in Heaven, Where little ones are kissed—We know you're in Jesus' arms, And never, ever missed.
—Hope Harrington Kolb


Jason has tried really hard to stay uplifting and of course then there is me and you all know after following our story so long when my heart aches, it is a bit more obvious. I cannot even begin to explain how much we miss our baby girl. We have spoke to so many people and received so many words of encouragement, THANK YOU!!! Although this is a very devastating time, it is also a time we want all of you to time out of your day and realize just how precious life can be. Parents hug and kiss your babies, they are never to young or old for love! Realize that each day spent together is a gift and never take it for granted! If I could do anything differently I wouldn't, I had the most amazing little girl and she has made our world a better place. If she wouldn't of come into our lives I would not be the person I am today. I would not of met the people I have. I would of never experienced the greatest love of all. She was sent here to rescue me and show me the love of the Lord and with him all things are possible. Although we will never get over the loss of our angel, and it will never be easier, we will look back and think of all the wonderful memories we had with her.

I love you little punky...you will NEVER be forgotten!!!

Be sure to read the below entry for the service details.
Oh yeah, the reception...lunch will be provided thanks to our family at our church!

Come Celebrate Gabi's Life!

Thank you so much to everyone that has been leaving such heart warming comments to us. Many of you have never had the opportunity to meet Micah, Gabi, or myself and have still found so much love in your hearts for us.

For anyone that would like to come and celebrate Gabi's life with us the service will be held at

Lawrence Heights Christian Church
2321 Peterson Road
Lawrence Ks 66049
http://www.lawrence-heights.org/

If you go to the link there is a little map on there to help you with directions. It is right off of
I-70, very easy to get to. You can also always go to mapquest.com and get driving directions.

The service will start at 10:30 am on Saturday August 25th and there will be a short reception immediately following the celebration of Gabi's life.

All of you have become a part of our family with your thoughts, prayers, and well wishes. Gabi brought so many people together via the internet, I know she would love to bring all of us together in person to celebrate her life and all she has taught us in such a short amount of time.

If you have any question please just let us know.

With all our love,
Jason, Micah, Gracie, and Gabi (Our Angel Above)

P.S. Someone had asked about sending flowers and cards. If that is something you would prefer to do you can send them directly to the church at the address above. We will also be setting up a memorial fund for "Gifts of Gabi's Grace".

Gabi Acker 01/12/2007 to 08/20/2007

At 12:50 this morning Gabi made the decision to go with God. She fought as hard of a fight that any little girl could every be asked to fight!

The Dialysis started off well and that was the last straw. Gabi's body couldn't handle having to work with one more machine. Her blood pressure continued to get lower so they had to continue and up her Epi, which was pulling blood from other organs to keep her heart going. Her lungs got worse and they were having to put the Ventilator on Max for her to be able to breathe. We got very lucky and Gabi again proved how strong she was by making the decision to go with God vs. holding on and making mommy and daddy make the decision. She did hold on until all of the family could get there. Mema and Papa Acker, Mimi and Papi Crawford, Papi Nastasio, Uncle Freddie and Aunt Ginger and Zach, Uncle Michael, and of course Gracie. Several close friends stayed with us through the night as well. Mike McClendon, Aaron Defenbaugh, Morgan Kitchen, Whitney, and Amber. Our Pastor Jim Cain was with us as soon as he heard things weren't well until Gabi made her decision. He lead us in prayer in the Chapel and in Gabi's room. When all of us were in the room with her she could feel the love and we all let her know that it was ok to go with God. At 12:50 this morning Gabi passed away in the best place she could for the circumstances...in her mommy's arms!

I think Gabi was also waiting for the right staff night as well...haha. She had so many of her favorites with her all night. Nurse Crystal, Debbie, Zabrina, Jesse, Laurie. Not to mention that Nurse Shiela came to be with her when she passed and Nurse Hillary came to see all of us and Gabi on her day off too. I'm sure many more that I just don't remember all the names...Micah has them written down somewhere. Even in a time like this she is still organized. Gracie loved Dr. Tieves too, Dr. Tieves had gone home for the night but been with Gabi all day. She came back to the hospital to help us through that trying time. With out Dr. Tieves constant reports and support for us it could of been much more difficult for all of us!

We want to thank everyone who has followed along and prayed with us. Micah and I are so scared with what happens now but we have to keep moving forward. If you follow the blog stay with us a little longer and we'll have the details of the Funeral Arrangements posted on here for anyone who would like to come say goodbye to Gaber Goo!

Love
Jason, Micah, Gracie, Gabi (Our Pink and Squishy Angel)

It's Time for a Miracle

Ok...I am going to try and type this to the best of my ability. Gabi is not doing well and there is a chance she make not make it through the night. She has become more swollen which is cutting the blood flow to her organs. She has stopped producing pee, her ventilator is up because it is hard for her lungs to compress with all the fluid. Her blood pressure is dropping which makes things more difficult. She is getting ready to be put on Dialysis to try and pull the fluid off. The problem is her blood pressure needs to be up for the Dialysis to actually work.

So all odds are against us right now. Gabi is getting weak, Dialysis may actually cause an infection as well that could take our angel away from us. We have to worry about the long term effects and are we doing things for Gabi or to Gabi?

That is all I can do for right now...so please be with us. Please pray for the miracle we need to have for our baby to live!

Love
All of us.

DIALYSIS...
So far we have had more fluid out than in, which is a step in the right direction. Her blood pressure is maintaining, but they did have to increase the epi in order to maintain. She does not look any different so we will wait and pray for our miracle.
Thanks and we will give you more later...Daddy and I need to rest!!!

Princess Fiona Returns!

I apologize for not updating the blog for a while since Gabi's surgery. Life gets a little crazier over the weekends. Gabi had her surgery yesterday afternoon and Mommy and I stayed here til late Friday Night. I was unable to go pick Gracie Girl up but luckily Big Mike works for daddy's company so he was able to drive over and pick Gracie up and drop her off with Mema and Papa. Gracie is camping with Mema and Papa in the Toy Hauler in Lawrence, so we got up super early to go swimming and have lunch with Gracie and the rest of the family. We are back up at the hospital but Micah has her 10 year class reunion that she wants to at least make an appearance. So if you can't tell we are constantly on the go!

Not much to report about Gabi other than she is retaining a ton of fluid. She is back to our little princess Fiona again! haha. She has still be peeing ok, still not enough, and her chest output is still down. Heart Rate is good, Kidneys's are still very sick but not as bas as they have been. They have given her some stronger pain medicene yesterday and today due to the surgery but she is off of her adavan and methadone completely, so that is good news.

We really need every one to say some strong prayers for Isabella and her parents. We saw them in the hall today, and they said they didn't have a very good day. They had a more serious discussion with the cardiology team in regards to "if" they make it out of here. On th positive side for her she has been gaining weight!

So everyone keep doing the pee pee dance and if you don't know how the song goes it's very easy..."Gabi go pee pee....Gabi go pee pee....Gabi go pee pee....pee pee...pee pee pee"

Thank you so much to everyone, it means so much that you have been with us through this entire journey. For those of you that have not been keeping track...you have been following along for the last 53 straight days! Man that is a record I really don't want to see how big we can get!

Love,
Jason, Micah, Gracie (waterbug), Gabi (Princess Fiona)

ON THE SCHEDULE...

Well, so far it has been a good day! Nurse Lynee delivered the best news we've had all week, Gabi's trach has arrived! The ENT team came in around 8:15 this morning and they had a cancellation for this morning and are able to get Gabi on the schedule. So if all goes as planned she wil be in the OR before lunch. PRAY PRAY PRAY that this is exactly what happens and that the ENT team has success with no complications!

We will continue to update, but we gotta go shower before it's too late..we stayed with sweet pea last night...so stay close by and we will be back after a while!

It is 5 till 1pm and we are STILL WAITING, but we are still on the list!!!

4:15 PM - On the way to surgery.

They came in and talked to us about what was getting ready to happen and told us that they felt like everything should go fine. They did say obviously that Gabi is at an increased risk since she is so swollen and has been in the ICU for so long. Surgery is expected to last for about an hour. We just had a visit from the PACC Team, which is just a team that becomes a voice for parents. They take the frustrations of the parents to the doctors to make sure they understand us. Then they break down the twelve dollar words that the doctors use. They help you do long term planning for best case scenarios and help you think about planning for worst case scenarios. It was a quick meeting and said they would check in with us again on Monday. We still don't have any updates from the surgeons now at 4:55 pm. We will post another update once we do.

OPERATION SUCCESS!!!

The surgeons came out and gave us great news...things went very well. We just have to be very careful due to the risk of infection...nothing we haven't already heard.
Daddy and I just went back and gave Miss Gabbers smoochies on her lips, both of them...top and bottom. WOW, I missed those lips. She is still under a bit of sedations, but she seems to be coming out of it. Another thing, her tongue is back in action!!! The thrusting and the sucking...my how much we missed that too!!! Hopefully the swelling goes down soon and she can get her thumb up to her mouth and feel a heck of a lot better...something she misses I'm sure!
Thank you everyone for all the many many thoughts and prayers, she couldn't have done so well without them!

Love to all...

***keep doin the pee pee dance, we still need to push off a ton of fluids!!!

Gabi's Button...

This looks a little crazy, add it your blog or maybe even myspace in the section you can add a HTML, copy and paste in the proper spot on your page and you can have a button that will take you directly to her blog.
One of my new friends on my T21 group made it for me...Thanks Shannon!

<a href="http://gabrielesheridan.blogspot.com/"> <img src="http://i131.photobucket.com/albums/p298/ryanshangraham/Blog%20Stuff/giftofgabisgrace.jpg"></a>

I wake up in the morning and pee excellence!

Ok...sorry with the movie cliche's but we are doing so good with the wee wee but we need to continue our prayers for pee pee and Gabi's kidney's. Gracie, baby, you need to keep doing the pee pee dance and ask god if he can do the pee pee dance too. haha

We don't have a lot to update at this point. She is still pretty much even on the amount of fluids in and fluids out. The big positive that we have is her chest output is either staying the same or going down a little. We really need that to completley stop and her urine output to continue to increase. As her kidneys get stronger we will be able to test her tummy with more feeds. We're told that if she gets strong enough to handle more protein the protein will help pull some of the fluids out of her tissues. She is still pretty puffy, hence the pink rock comment yesterday.

We are excited but definitely not going to get too excited but the custom trach should be in so she can have her surgery tomorrow. We have no idea what time they will be able to come in but they said the only way she wouldn't get it tomorrow is if Gabi just wasn't healthy enough to go to surgery. So tomorrow will be a big day for us hopefully so keep us tight in your prayers tomorrow. It is about an hour long procedure of which Micah and I will be on pins and needles. I'm sure we will be updating the blog as we get updates from the nurses on how surgery is going.

As Bruce Almighty would say..."And that's the way the cookie crumbles" haha

It's late...my apologies :-) haha.

Love,
Jason, Micah, Gracie (pee pee dancer), Gabi (pink and puffy)

Dear Baby Jesus

Ok...if you know me and my movie fetishes I'm sure you've started reading this blog entry with a smile on your face! If you don't know the movie I'm sure someone (Mike) will leave a comment with a retort that might help you figure it out!

Anyways, as you can tell from the last few entries that we have been less than pleased with where we are. We are 50 days in and it feels like the first. Ahh another great movie...50 first dates, it's like we're reliving the same day over and over every day we wake up! Man I need to write a movie script about our lives and make millions on the film! haha

Micah and I have been so concerned and scared lately that many times we forget the gifts we've been given. Gabi was almost taken completely away from us on June 26th. We've been given the gift of the last 50 days to keep seeing her, loving her and touching her. No it isn't going as fast as we want or as well as we want. Again, anyone who knows me well enough, when has my life ever gone down the easy road? lol.

So we will continue to pray as we know this is in gods hands. Granted we would appreciate a little more comforting and quicker working hands but hey, he has a plan, and who are we to question that plan! As the infamous Forrest Gump says..."Life is like a box of chocolates...ya never know what you're gonna get" LOL.

Hope you enjoyed my update, as now I'm going to take mommy out to dinner, go home watch a movie, and get some good sleep in her big bed vs the pad in Gabi's room!

Love,
Jason, Micah, Gracie, and Gabi (My Pink Rock)

A HORRIBLE MORNING!

We were told last night that Gabi would not be getting a trach today, they didn't have room on the schedule. We were frustrated, I cried (like I always do), and then we vented to a few nurses. We completely understand that all the doctors have their own opinion and we respect and appreciate that, but we just wish we could find more consistency. It's like no one will allow trying something for longer than a week because they want to try their way. Every week a doc comes on, in case you didn't know that. So every week it is something new. She needs longer than a week to try something, she needs more time obviously with everything so why would they think she could change in 7 days when it is new every 7 days...can you sense my frustration???

It only gets better...today the ENT resident came in, he said they had a slot they could fit Gabi in today for the trach, he just needed to check with Dr. Tieves to be sure she was stable enough. She gave her thumbs up and I signed the consent form...Yipee we were finally gonna make a change and make things a bit easier on my poor baby! Jason had left early this morning since they told us it was a no go. I had been on the computer with him, so I gave him the green light...Get up here NOW!! The nurses and I were scrambling around her room taking all her babies off her bed, she had her pooh blankey and she was ready to go! Then the ENT attending doc came in...oh, I don't think we can proceed with the procedure...she is too puffy and she needs a custom trach. The custom trach provides more flexibility and with her being as puffy as she is she needs the custom trach for more comfort or her skin will break down from rubbing so much and we already know she has issues with that.

So you want to talk about being disappointed. Luckily I got ahold of Jason before he left, so he is working hard and will be up later this afternoon. I say it's time for me to take a break, I am gonna leave for a bit. After all she is sleeping so not a whole lot I can do. She needs to rest and hopefully push off some of these fluids. Keep saying prayers for my angel and hopefully I get the news we want on friday!!!

7 weeks later and nothing...

So here we are waiting, and waiting, and waiting...ok deep breath!!! I have not been given any indication, but I just have this gut feeling that we will not be doing the trach tomorrow. She has retained even more fluids and her pee is not so good. Her kidney function numbers have been increasing, that is not good. They put her back on a lasiks drip again today, but we haven't seen a whole lot of results. But they say we may not see the results we'd like if those numbers keep going up.

I know, I know stay positive, keep hoping for the best, well I am tired and I feel like we just keep getting further behind in recovery. Everyday I wake up I see my angel still fighting and I thank God, every night I go to bed and give her smoochies still fighting...I thank God. I have so much to be thankful for, I still would not change anything about my precious little girl. But dear God please put your healing hands upon her and give her the strength she needs to recovery.

I know the trach will not fix things, but it gives me some sort of hope that she will be more comfortable. I believe if she is more comfortable she will be able to relax a bit more, which in turn will make things more tolerable for her. Then she can regain some strength and be my happy little baby girl.

Sweet Dreams to all!!!

Gracie, let's dance!!!

I have a special request for big sis, we need to do the pee pee dance! I have done it a couple of times, but it is a fact it works better when sissy does it. Gabi is peeing enough to still be in the safe zone, but we could definitely use more. The kidneys are doing their job, but are very very weak. She had to have the catheter put back in, that alone causes a risk for infection. And the last thing we need is an infection, there is a chance if she gets something she may not be able to continue the fight.

She is back on the milrinone, which helps her profusion. We did take a few steps back, but Dr. Tieves is on this week and Gabi does really well with her. So I told Dr. Tieves the pressure is on:)
The ENT doctor came today and we talked about the trach. He said if all goes as planned we will do the tracheostomy on Wednesday. So please pray for her strength to get us through the next couple of days!

Isabella is having a better day. She is back on quite a bit of medication, but she is able to sleep comfortably.

So thank you so much for the continual prayers, both of our families greatly appreciate it! I do believe with all my heart in the power of prayer, but I have to admit I am questioning a lot of things lately. I just want nothing more than to progress in the right direction. Gabi is fighting so hard and it breaks my heart that she is still in so much pain. She is an amazing little angel and I know she can and will pull through, but I just wish I could see a sign that we are moving in the right direction, ya know. I am at a breaking point, of course, I will be by her side and continue to fight with her, but it is so so hard, when you see nothing.

Hugs to all from Gabi...

Happy 7 Months, Baby Girl!!!

It seems like only yesterday I saw Gabi's face for the first time. It has been the single most amazing moment I ever experienced, besides marrying her daddy of course! Well nobody celebrates like we do. When I woke up this morning Nurse Zabrina and Nurse Janis had our baby girl all dolled up. She has a bright fun blankey with jungle animals on it. She even had an outfit on that she has never gotten to wear...and of course her signature do...piggies!!! Nurse Zabrina was not our nurse last night, Janis was...but as soon as I told Zabrina about Gabi's b-day she knew she wanted to be part of our celebration. She even made her a sign! Zabrina, we cannot thank you enough for how much you have taken interest in our entire family. We look forward to seeing you every weekend. It definitely makes a mommy and daddy sleep better, just knowing you will be right there if needed. And tell your little Dylan we will have to get our kids together sometime, so Gracie can meet her "boyfriend" :)

As far as today's report a few fevers, so cultures were drawn, but nothing other than the UTI. We have increased her feeding from 10 cc's to 15 cc's this morning, and then this afternoon from 15 to 20 cc's. But as of a few minutes ago, they had to stop her feeds because she has not been peeing. She is getting very puffy again. Oh Lord please help my baby, do not let us go backwards. We are still very concerned about her kidneys, they are still very weak and would not take much for a set back. So for the next hour we will wait for some labs to come back and hopefully have a better idea of what is going on.

I will report shortly!!


Well, we got results back and of course, we don't know. So we have no answers and we are worried sick! Jason said it best, I am so tired! I agree, we are just lookin for some sort of break.
Continue to pray hard and hopefully we have a better take on things tomorrow!

An Isabella update...
She did not have a good day. She needs our prayers more than ever. She crashed today and had a seizure. Which then in turn they think caused her to lose almost 100% of her sight and most of her hearing. This was devastating for her parents. She was doing good yesterday, they were actually talking about going home Friday. And then today took a turn for the worst. So please pray for her and her parents to continue to be strong and regain health!

Another Day, Another Dollar...

Last night Gabi had a great night. No fevers, she slept comfortably, and at one point we even saw her heart rate at 127. What a relief to finally feel a bit of comfort. We are still far from going home. If we can get the UTI under control then we have a big week ahead of us with the trach. As much as we do not want to have to put Gabi on the trach, we definitely feel it will be in her best interest.
Yesterday they stopped the medication that was suppose to help decrease her chest output, it seemed to have increased while on it. Today we are actually seeing a lot less, so we are praying that maybe she just needed that med. to help with some reverse psychology??? Today they starting giving her formula again, a very small amount to test her tummy. Her poor little tushy seems to be getting worse. It is so frustrating, she NEVER had a diaper rash before, and now her skin is breaking down so terribly. It started out as two small slivers of skin that looked like they had been cut out...not to deep, but now they are deep and just keep getting bigger. I am worried it will never heal. Every time she poop poos it irritates the skin, never allowing the skin to heal. Finally the wound team decided to put some aquacel pads directly on her bottom with a mepilex foam pad over that, it creates a barrier...hopefully this will do the trick!
Prayers for a healing little tushy, among other things!!!

So here is a fun fact, we have been in the hospital 46 days so far, with no idea of how much longer we will be here. It costs $7,000 a day to stay in PICU, it is another $3,000 a day to be on the vent, and I have no idea how much all the medication costs (one med she was on she took twice a day and each dose was $1,500). So we are figuring by the time we are out of here, we will be bringing home a million dollar baby!!! So that is our newest idea for t-shirts. Jason had t-shirts made when Gracie was born...Team Acker XXS, 6.9 lbs
We have been thinking for a while now what we should do for Gabi, well now we have it...
Million Dollar Baby!!!

A Day at the Pool!

Well today was the last day of summer for Gracie to be with us. Gracie has been such an amazing little trooper through all of this going on with Gabi. She has had to endure spending many long days at the hospital with Micah. Spending a lot of time with Grandparents and having to work alongside dad as well. Not to mention witnessing her sister have to fight for her life with tubes coming from all over her body. Gracie truly is an amazing little girl.

Since this was our last day I decided to take Gracie to the pool and just spend time with her today. So Gracie, Micah and myself spent the day at the pool. It was a hot one but it was a great day. Gracie got to go off of a slide that had about a 4 foot drop at the end of it. She threw the rock and roll as she went down for her little brother, she played the electric guitar, she blew it up for big mike, and a great big woohooo for her little sister! Amazingly enough the little turd also just walked right off of the high dive and did some cool stuff off of the low board as well. Her and I practiced our back flips in the deep end and had an awesome time playing under water. This is Gabi's blog, but her big sister Gracie has been a good little fighter through all of this too and I'm so blessed to have two of the strongest little girls I know.

Gabi had a good day also...I'm sure she wishes she could of been back at the pool with Micah and Gracie and I but she will get there soon enough. She had a couple of fevers, nothing new. They have started her on a new antibiotic which will target her Urinary Tract Infection more effectively. They also have sent some stool off for testing and we have to wear these crazy gowns within 3 feet of her until the tests come back. Most of the nurses think they will come back negative tomorrow around 6. Heart rate is currently sitting at 139 so that is good. Micah and I decided we are going to spend the weekend up here with Gabi and I'm sure now that Gracie has gone back to school Micah will be spending more nights here at the hospital, as will I.

Micah is going to get to hold Gabi tonight as well, and to set the record straight I don't think there is any better place for Gabi than in her mothers arms. Daddy is just a bit of a worrier and I hate to see her numbers jump and watch her cough and fuss in the move from the bed to mommy and from mommy back to the bed. It is the best thing in the world for both of them so I am learning to be more quiet about it! haha. Gabi is always much more relaxed and happier when mommy holds her. Daddy wants to hold her too but with all that I don't like her to have to be moved twice more for me to hold her! I'll wait for the Trach to be put in and then mom and I will be fighting for time! haha.

Isabella is doing much better so that is good. Her parents live 3 hours away but one of the nurses lined up a job for Megan, Isabella's mom, while she is stuck up here so that was pretty awesome, so things are looking up for them. We met another family up here that has a little boy about Gabi's age as well that is scheduled for another heart surgery very soon but keeps getting colds that put off his surgery. They are a very nice family as well and their son has one of the most complicated heart defects. There are so many families and people that need extra prayers, and we are so blessed to have all of you that are following along and offering up prayers for us. One good blanket prayer for all of the children that are fighting for their lives in the PICU at CMH would be a good one to add!

One last thing and I promise I'll be done! haha. A wonderful family that we met up here that I'm sure if you've read the comments on the blog you've seen their name. Nate and Amy have finally set up a blog for their little boy Kaden. If you would like to see their story and send out some prayers to Kaden, I'm sure they would greatly appreciate it. They have sent many many prayers our way! (http://kadenboeckman.blogspot.com). Sweet dreams little Kaden!

Love,
Jason, Micah, Gracie (waterbug), Gabi (Pink and Squishy)

Ducky in Mommy's Arms

First off to explain the title I must say, Gabi was so happy to have her baby in her arms yesterday! She played with ducky at home, it's the only stuffed animal that she has actually played with and thrown around. I could tell yesterday when she had ducky she was happy, she would not let go!

Gabi had a fairly clam evening, sleep great and she had no issues. But today did not start off so well. Jason and I got here around 10:30. As soon as we walked into her room we noticed her heart rate was at 205 and rising. She had her temperature taken and sure enough a fever...104.6 to be exact. We were so frustrated. They gave her tylenol and more sedation to help take off some of the edge, she was extremely agitated, who wouldn't be? Anyways her heart rate reached 217, still no doctor...we were getting very agitated at this point. Finally an hour later someone came in. Then shortly after Dr. Allen came in with today's update.

Something finally showed up on the cultures, she has a urinary track infection. Poor angel, for anyone who has had one it is very painful, so hopefully the meds are helping with the pain! Which can help explain the fevers for the last day or 2, so at least we have a little more direction. No major changes to meds, a small increase on the med that is suppose to help decrease the chest tube output...although yesterday she had more output than she has in a while. So hopefully that med kicks in, if not we will keep her on it.

Her heart rate is now holding steady at 160, even though 2 days ago she was steady at 130-140...I will take 160 over 217 any day!

Update on our friend Isabella, she is doing much better today. They got her virus under control and they actually put her back on her home vent today. Matt and Megan were smiling ear to ear when they gave us the report today. So thank you for the continual prayer for Isabella.

I know we as for a lot of prayers, but I have one more to add to the list...Parker.

Parker is a little guy who is fighting just as hard is not harder than Gabi. He has had a lot of health issue that I am still reading about on his blog. http://prayingforparker.com

This little guy needs our prayers. I have become a member of an online group, T21 Discussion Forum, it is amazing. I have met so many mom's with children just like my little Gabi. I am so excited to be involved with such a wonderful group of women. People who I know will become our lifelong pals! I thank God everyday for my little extra special angel. And now I can thank her for being me into a world that I have only been missing out on! Love to all my T21 mommies!!! And thank you for the encouraging worlds, it definitely helps through these dark times!

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...