Rolling Over

2 days before surgery this is where we were....SUPERSTAR!!!
This seems like so long ago, but I had to share it. I watch this over and over and I know someday we will be right back where we left off. This little girl is so determined. One week before surgery she was tested on her level of development, she was only 1 week behind the rest of babies her age. She is a fighter and out to prove she can and will accomplish anything she puts her mind to.
The reason I am just now posting this...I just figured out how! It took me forever to figure it out, but now that I know how I will provisde little clips more often!

Day 35..continued

Gabi has the cutest little tushy!
Tummy time is her favorite!















Silly girl, always trying to help.
A cookie bouquet from Aunt Tami and Uncle Brett...YUMMY!












Look how long those piggies have gotten.
And check out those pretty pink nails!















Yummy sushi for the big 3-0
4 Generations of LOVE!














Daddy's new outfits...Happy Birthday!
LOVE LOVE LOVE

Day 35...

Yesterday we received some distrubing news. We asked the doctor how much longer he thought Gabi would be here. I wish we'd of never asked. He did admit he is a pesimist, but it still wasn't very encouraging. He said he felt like we would definitely be here until fall. He said you could shop for Halloween, but plan on her spending it here. WOW!!! We were definitely not prepared for that answer, but the reality is we will bring her home, so if we just have to wait it out then that is what we will do.

You never plan on things happening in life the way they do that is what makes life worth living, full of adventure...good and bad. Even though it was very dfficult to hear and acceot what Dr. Klem said we know it is what is best for our angel. I would hate to take her home and have to return soon after, so the wait we feel will be very worth it!

Not much change today, she is still having withdraws. She ran a fever through the night, seems a little restless now. They did change her formula from a 20 calorie diet to a 24 calorie diet. Her heart rate is staying steady at 180, so they are going to do an ultrasound to see if they are missing something. So I pray God will help her though this and she may rest and allow her body to continue to heal.

HAPPY 30th BIRTHDAY DADDY!!!

Well today is a very big day, it is Daddy's big 3-0. Kind of hard to celebrate the way we should, but he can't complain to much considering the circumstances. The girls got daddy Nike outfits, imagine that! Gracie was so excited about the outfits she gave them to him on Saturday night. She told me, Micah I just can't wait I have to give them to daddy...it was really cute!!

And for Miss Gabbers she had an eventful day as well. Her catheter is out and she is still doing well peeing...yipee! No decrease in her sedation today, she had a few withdraws so we are just staying at the same level as yesterday. When we got here today Gabi was so excited her heart rate hit the roof...Daddy seems to have that effect on her, but now she is sleeping. She looks just like a little angel, aw who am I kidding she is a little angel.

I would like to tell you about another family that we have become friends with, The Gudde's. Little Isabella is 7 months old. She has had numerous problems since she was born, including a trek. She spent 98 days in the PICU, well last week she got to go home. It was such a wonderful day for her parents, not to mention for her too! It was bitter sweet for the nurses, always good but sad to see such an amazing little one go home. At 3am this morning she had to be life flighted back to Childrens Mercy, they live like 3 hours away. She is septic, which means she is full of infection. They are not sure what caused this, but she is not doing so well. Could you please add baby Isabella to your prayers.

It has been amazing the support you find with people you would of never known until coming here. But it is very hard to see a family struggling, especially when you yourself have experienced the struggle with your own child. My heart goes out to the Gudde's and I know we will say an extra prayer for their little angel.

A Full Moon!

Micah and I had the best phone call this morning when we called to check on Gabi before church. The nurse told us that they put her on her tummy again to sleep and she slept like a rock. She said it was the cutest thing in the world because Gabi is still not wearing a diaper to let her little bottom dry out and heal up. So when she walked in and Gabi was on her tummy all she saw was the cutest little naked bottom sticking up in the air! haha.

They have continued to come down on her sedation which is a plus because it means that she is more awake and can focus on Mommy and Daddy! She looks really good and all her levels and rates are doing much better. This week is going to be a week of nutrition with a little work on the venilator and next week if she does well we will focus more on getting rid of the venilator. So in short we are back to the starting line of coming down off of meds and levels again. Let's all pray that this go around it is much more successful and works so we don't have to go through it all over again.

On a different note, I need to ask everyone a favor. Micah is up here at the hospital day in and day out to be with her baby. She relys on the comments on Gabi's blog as her communication with the outside world. We apprecaite all of you and everyone that has commented and I can tell more than ever how much it means to us to hear from you.

We appreciate the prayers for us and our baby and continue to pray for many of you who have a lot going on in your own worlds.

Love
Jason, Micah, Gracie, and Gabi (The Mooner)

Pink and Squishy...

She is back to our little pink and squishy! Yesterday they started reducing her sedation meds by 10% she tolerated that well and today they reduced by another 10%...so far so good! Still giving her a bit more nutrition in her iv, we need our girl super healthy to get her off that darn ventilator. Dr. Tieves started a little exercise with her today on the ventilator, she turned the rate down by 5% to she if she will breathe over it...so far she is tolerating that as well. Usually she rides the ventilator and doesn't do a whole lot for herslef, but now she has a bit more strength and she is out to prove she can do it! She will contiue this exercise for a while but basically it will be down on the rate and back up to let her rest. Sounds like a lot of back and forth nonsense, but it is what will help her build her strength, so we are willing to try!

Entertainment for the Weekend...

Nothing major going into the weekend. They are starting to wean her off of her sedation medication. They started increasing her calories today, so hopefully they can pump more nurtition in her to help with the strangthening process.

With that being said I wanted to see how creative I could get and leave a few pics. for your enjoyment of our sweet angels!

Work Out Gabi

Today we went down on one medication, other than that no changes. Her heart rate was a little high this morning, but she is doing good this afternoon.

She has been a bit active moving around today. I gave her her rings she likes to play with, one for each hand and she did a few curls...it was awfully cute!!! So in case any of you are wondering, she is getting some exercise.

Today I put Gabi's hair in a pony. It is amazing how long her hair has gotten in the past month. My next attempt will be braids, but not today. Later this afternoon I am gonna give her the spa treatment, a manicure and a pedicure. I figured since she is not putting er fingers in her mouth I would attempt to paint her nails. I will take pics and post later how little Miss Diva turned out.

Not much else to report I am defnitely feeling more positive than a few days ago. I am seeing a little light, but we still have a long ways to go.

Nurse Debbie if you are reading this we are really forward for your return. I must say you and Zabrina have always spoiled her the most and she misses when you guys are not here...we do too! She hasn't had piggies in a while and that makes me a little sad. Plus I need a picture of the two of you in your piggies:) So I hope therapy is going well and we see you very soon!

Return of Pink and Squishy!

Good Morning everyone. Well as you might have noticed from Mommy's last entry things have not been going as smoothly as we would like to see after this much time in the hospital. So daddy came up yesterday afternoon and Mommy and I decided to spend the night in Gabi's room to talk some sense into her and let her know we are here for her!

She is back on a constant flow of Albumin, which is just a steady flow of fluid to her body. As many of you know that is what causes her to swell up and she is getting pretty big again. However, I'm looking at her monitors and her heart rate is down to 149 which is incredible, her urine output has been fantastic, her temperature is down to normal, and she hasn't had that consistent flow of yukky doody that has been eating up her cute tushy! haha She is still requiring a lot of assistance from all of her medications but the goal is for things to stay like this and then to very slowly start to come back down and hope that we keep her strong enough when doing that, that we don't have to go back to square one again!

Well Dr. Tieves just stopped by and is very happy to see where Gabi is at this morning. Apparently with her kidneys Dialysis was brought up again yesterday but she has told us this morning it has been pushed way back in the plans for making her better. The plan at this point is for her to hopefully maintain where she is at and continue to improve over the next couple of days and then begin the process of coming off of her medications again. This time as the Doc said it will be a much slower process this time so we don't end up in this spot again hopefully!

Today was a good day...let's all keep praying for days like today without quite as much support!

As always thank you for being there with us.

Love
Jason, Micah, Gracie, and Gabi (Pink and REALLY Squishy again!)

Tuesday...still waiting

Sorry for the delay today. I have been a bit discouraged and haven't wanted to update. Here is what is happening, she is extremely dehydrated. Her tummy is not absorbing anything, everything is coming straight out of her poor little bottom. So they have stopped giving her formula and have now put her back on the iv. In turn all her meds will go back through the iv so that it has a better chance of doing its job. So at first I thought today was very negative because in all essence we did take a few steps back, but now she will get nutrition and her meds without a chance of it coming straight out. I am feeling a bit better after visiting with Mema and Aunt GiGi, always good to get others perspective. So thanks to both of them for helping me see more light than I have in a long time.

Angie, thanks for the response. I do not have a flyer, but that is definitely a good idea. I will talk to Jason and maybe we can put something together by Sunday for church. We appreciate any help we can get, so thank you for always spreading the word...leave it to the beauty salon for that huh!?! LOL!

So hopefully in the next few days we will be able to report a turn in her recovery...all for the better.

GABI'S GROUPIES: BUDDY WALK 2007

2007 Kansas City Buddy Walk Family Festival

The link listed below will direct you to Gabi's page for the Buddy Walk. It is an annual event for First Downs for Down Syndrome. We are trying to raise $1500 or more. Time is limited so please make your donations as soon as possible. It's very easy just click on the link and you will be guided. Anyone is welcomed, let's make this a special first for Gabi!!!!

http://www.syssolutions.com/KCBuddywalk/main/Team.aspx?FundraiserId=a302008d-b28c-411f-90dd-9c3c2bfbcaf2

Below is the message on Gabi's page, please click on the link to make a donation and if you're feeling adventurous come walk with us!

Join Gabi's Groupies, at the 2007 Kansas City Buddy Walk on Saturday September 22!
The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is also a huge family festival and a day of fun for all! It is a wonderful, heart-warming event that celebrates the many abilities and accomplishments of people with Down syndrome.
I'm participating in the Buddy Walk Family Festival to show my support for the more than 350,000 individuals with Down syndrome in the United States. I want to do my part to make sure that each individual is given every opportunity to reach their full potential.

Every step I take, every dollar I raise will help ensure that each individual with Down syndrome in the United States will be able to do just that. Last year alone, over $5 million dollars was raised nation-wide for local and national education, research and advocacy programs. Locally, we raised over $300,000 to benefit more than 850 families in the greater Kansas City area
If you can't make the walk, you can also simply make a donation to the team by clicking on the "Donation to the Gabi's Groupies" link.

We thank you for your generous support of Gabi's Groupies.

We look forward to seeing you Saturday September 22, 2007 at the 12th Annual Buddy Walk!

Monday Blues...

Not much has changed since yesterday. Gabi is still on edge. Her fever spiked to 103 this morning. This is a big concern. They took more cultures and we have to wait for results. The doctors seem to think it is still related to her withdraws though. She has needed her diapers changed every hour, she is a mess. And her poor bottom, they think it looks better, I don't know if I would agree though. It is not bleeding as bad, but it is completely raw...poor baby girl!

I know many of you have been following our story for a while now and thank you. I want to take time out to say a special congrats to a special family we met in here. Nate, Amy, and their little guy Kaden...CONGRATS on the new edition they will be adding to their family in February. We will pray for the baby's health and Amy, that you will have an good pregnancy. You will definitely have to keep us posted! We are so excited for you guys!!! Feb. what??? my b-day is the 10th.

Anyways I hope everyone has a great week, especially my sweet Gabi!!!

Darn Addictions!

Well, it has been a while since daddy has left a entry on here so we figured it was about time.

Micah and I called the hospital this morning before church only to find out that Gabi had gone through some severe withdrawals from her Narcotics that helped her through the pain of surgery. She was very active, lots of rapid eye movement, and 6 poopy pants in 5 hours. With this they had to give Gabi some Morphine, increase her Methadone, which is what is supposed to help with her withdrawals, and also increase some other drug to help with the withdrawals. Not to mention all of this caused her to get a fever of close to 103, and now requires more fluids. So here we go with pink and really really squishy again and will just have to come down slower this time, to get rid of the fluids.

If I was a guessing man I would say that we will be in the ICU for a minimum of another 2 weeks and not out of the hospital for an additional week or so after that. That being said, sanity is going to be difficult to maintain for mommy.

We did make it to church this morning even with the news of Gabi's rough night. We felt like we needed to be with our congregation this morning. It was good to be at church and see everyone and update them on how Miss Gabers was doing. It was also a good reminder of how many other people close to us continue to need our prayers.

So here is what I would like to do now. Micah and I have been so focused on Gabi, Gracie, and Work that we have not had much of a chance to know what is going on with all of our friends and family that are following along with us. So please drop us a line and let us know how things are going, we spend a lot of time in prayer so if you need some prayers we have several people that we're currently praying for a long with Gabi. If you just have something exciting going on, something entertaining, or something that would lift our spirits we would love to hear it.

For Example: Nate and Amy we would love to hear how Kaden is doing and how he is progressing! ;-)

Love
Jason, Micah, Gracie, and Gabi (pink...stubborn...and really squishy! haha)

Gabi's Way or No Way...

So my sister in law and I were talking and she told me, we all know what kind of girl Gabi will be when she gets older...it will be her way or no way. She will do things when she wants at her own pace, not I told Jason before we got here today her and I are gonaa have a talk. Us Acker/Nastasios are strong minded people and we don't like to be told what to do. So at least she is staying true to her roots. But gees oh petes girl, enough is enough, it is time to get a move on the progress. She has had no changes today, but I am determined that our talk will do her some good. Aunt Laurie left a great comment yesterday and that is what has inspired me to have a talk with Miss Gabbers...thanks Laurie!
Tomorrow Jason, Gracie, and myself will go to church for the first time since Gabi's surgery. We feel like this will be very good for us and Gabi is at a point that being away is ok. Although Jason and I will be leaving immediately after the service, it will definitely do us some good.

TGIF

We have nothing to celebrate here other than the fact it is friday and now Daddy can hang with us more up here. And I do beleive Nurse Zabrina will be back tonight, Gracie has been asking about her all week. Gabi is doing fine, no changes since yesterday. So I guess at this point we will contiue with no news is good news. Except I have to admit I'd love a little news as far as we are moving forward, but I know that will come with time!

I want to leave you all with this thought. Someone sent us this through an annonymous comment and I must say, it is very powerful...THANK YOU!

“God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.”

By the way, I just read a comment from one of Jason's friends...Becky you brought tears to my eyes. It is amazing how someone you don't even know can touch your heart and let you know you can get through even the toughest of times...Thanks!

Sweet Gabbers

Well she is back to being pink and real squishy. They have had to pump her full of fluids again, but this time is to stimulate pee. Looks like Gracie and I wil be back to the pee pee dance. Gabi is peeing ok, but not stellar. We still have a long ways to go, everyday I wonder how I will make it to the end. I know in my heart I can, but everyday gets a little harder. You would think at this point it would be getting a little easier, but it is not. I am so dedicated to being here all day everyday that the things I am used to doing around the house for my family are starting to show I am not there. Don't get me wrong Jason is doing an incredible job around the house, but I feel like I need to be there more to keep up. Afterall he is working all day everyday and I know being here by Gabi's side is exactly what I need to do for her and my sanity, but now I am feeling overwhelmed at home. And I am not talking house work, all of it, I feel bad for being there, I feel bad for always being here...This is a daily struggle, we are basically starting over again and wow I thought we were finally moving forward...WRONG, we are still just sitting and waiting... I HATE THAT GAME, I am learning very quickly I am not as patient as I thought I could be. I feel like I am slowly breaking down to about nothing...I pray that God will give me more strength, but more importantly heal my baby girl so she can be back home where she belongs!

Day 22

Not to many changes have occurred since the last entry. Although I will finish the update from yesterday. Gabi's kidneys are functioning, they are still just very very weak. Her diaphram is lower than should be, but it will heal on its own. She is malnutritioned so they have increased how much she get on an hourly rate, not quite an ounce every hour. She has some regurgitation in her left valve...the blood flow is going out to the body the way it should, but not all of it is going out. There is very typical in AV canal repairs, with time it will heal itself as well. Dr. Banwartz said last night, he is on all week, do not expect her to come off the ventilator this week. She needs to rest and heal without having to do so much work.
She gas an air leak in her ventilator tube, she sounds like a little gremlin, it's cute! Nothing to worry about though, these things happen and it's ok!
Today she is getting less adoban and methodone (I probably totally messed up the spelling on those). Anyways these meds. help with the withdraw symptoms and ease some pain. So the Nurse Ed said expect her to be more awake.

Steady Strokes...

The golf tournament was yesterday for First Downs for Down Syndrome. Thank you to all who contributed to making that day so special to us. I will let Jason fill you all in on the details, but he's a bit busy working today, so I figured I'd help. Not to mention all the pictures are on my laptop, which I actually brought with me today!
We sponsored a hole in Gabi's name. She was the only child with a hole in her name, pretty cool huh!?! Neil Smith #90 on the Chiefs played and he and Jason spoke after golfing. Neil said he noticed the hole with Gabi's name on it, he thought that was pretty cool. There was a sign at her hole that said...This Hole is Sponsored by GABI ACKER, and her picture was on the sign. We weren't suppose to get to keep the sign, but Jason is pretty sneaky and managed to take it with him. He also got Neil Smith to sign it...To Gabi, May God Bless You and Keep You Love, Neil Smith #90...pretty cool keep sake for a kid who is only 6 months old!



Team Name:
Gabi's Groupies
Daddy, Aaron Defenbaugh, Brett Reinhard, and Brian Lantis...sorry if I misspelled names!
Thanks guys for playing hope it was as fun for you as it was for Jason...Great team pic. by the way!

Step Back and Relax

Poor angel breathing is just a lot more work than Gabi is able to handle right now. We received a phone call at 1:30am she had to be put back on the ventilator. She was not putting out enough CO2, she is just working so hard. The good thing is they got the tube in place on the first try... thank goodness! So this is a bit of a step backwards, but that is not a terrible thing. It will give her more time to heal and recovery more without having to do so much work on her own.
Today they are going to do an ultrasound on her tummy. They will check her diaphram to make sure it hasn't dropped, they are also going to look at her kidneys. She is back to holding her pee pee again. Hopefully she is just being stubborn and there are no more problems, but with this baby you just never can tell. So back to more praying and hoping for God's healing hands to be placed on her. She is very relaxed and alert today, I just love baby's beautiful blue eyes.

Deep Breath...

Sorry for the delay in todays entry, but I forgot the computer at home. Gracie would not let me go back to the house to pick it up, she wanted to see sissy! And it's a good thing we didn't stop to get it, on our way to the hospital we got a phone call from Nurse Stacey. Gabi was extubated today...NO MORE VENTILATOR!!! WOW, what a surpise, we had no idea it would happen so soon. She had a great night, so they were sure she was up for the challenge today. Overall she did really well, but towards the end of the day they decided to put the breathing mask on her to help, because she is working so hard. This is not necessarily a bad thing, she is still very weak and they don't want her to over do it. Now this is not completely permanent, there is still a chance they may need to put her back on the ventilator, but so far so good!

One thing I would like to request though is a special prayer specifically to take away her fever. Poor baby has been running a fever the past 2 days... today it spiked to 102, that is not good. All of her cultures keep coming back negative so that is good, but they can't seem to break her fever. So we would all appreciate an extra request in your prayers for our angel.

Another exciting thing today half of her staples came out. She is healing very nicely. It won't be long and they will all come out.

I must admit today I felt a huge weight lifted off my shoulders. I know this may only be temporary, but it is nice to actually get results that make all smile! We are well on our way to healing and recovering and most importantly coming home. Thank you to all for the contiuous prayers, we have definitely been blessed.

Open Arms....

We apologize for not having an update on Ms. Gabers until today...things have been pretty calm. It is a difficult situation at this point because we can see the finish line and just want to sprint as hard as we can to get there. However, we need to continue to pace ourselves to ensure we don't go backwards.

Her catheter for her urine has been removed so that is a plus. They have dropped her ventilator down to 8, the reason this is important is because some doctors will actually go ahead and remove the ventilator once it hits that point since she is doing most of the breathing on her own anyways. It is really tough for us because they have to keep her awake so she can do more on her own. Well being more awake she notices the tube more and continues to gag on it. She has vomited a few times so we really want it out. They are also changing her diet a little to see if that helps. She has a little bit of a fever today, but they don't seem to be concerned about it.

Nurse Zabrina has spoiled mommy, me, and especially Ms. Gabers. They moved Gabi to her new room on Friday and Zabrina let Mommy and me hold her before they moved her. Yes, mommy cried, it was awesome to see baby girl back in her mommies arms. I'm sure mommy will be putting pictures of the event here on the blog very soon. I have to admit I was a little reluctant to hold her with all the tubes and wires in her still but I'm so glad I did. Having baby girl back in my arms close enough to snuggle with was a great feeling. Gracie also got to help hold her and climb up in her her crib with her. Even nurse Zabrina noticed that Gabi calmed down once she recognized that sissy was in bed with her...those pictures will soon follow also.

Thank you again for leaving the comments they really do help us get through this to see that all of you are still following along with us. I'm sure most of you will continue to do so until the day she comes home...so thank you so much for staying with us.

Love,
Jason, Micah, Gracie, and Gabi

Friday the 13th...

Some would believe today is a bad day, a scary day, a day that things just go wrong. Well we do not believe in the superstition that follows this day. Gabi is having a remarkable day! The doctor came in to visit with me a few minutes ago and she said she is very pleased with the progress Gabi is making. Yesterday we were not able to wean her off the ventilator any, but today they have changed the rate twice. She is doing a lot more on her own, so the weaning process is going well. She has gotten sick the last coupe of days after receiving her potassium, so they change the concentration and she is already responding better to it. Gabi was very alert and bright eyed when I came in this afternoon. Yes I said this afternoon, today I went and got a pedicure, I hated being away from her all morning, but it felt great to be out of the hospital. I do not plan on making this a habit coming in late, but I needed it.

Last night I went out with the in-laws. We had a great time, out to eat at Olive Garden and off to Harrah's...we even won a little bit. It was really good to get out with them, great bonding over those slot machines:) Thanks again mom and dad!

Tomorrow we get Gracie back, I am so excited! I have missed that little girl soooooo much!

6 months today...

I absolutely cannot believe Gabi is 6 months old today. It seems like only yesterday I saw her beautiful face for the first time. It does seems like 6 months ago that I got to hold her though...but I am not gonna go there today. Today is a new day and we are off to a good start. She is off of the Bumex drip, and is now starting Lasix three times a day. And they are coming down on the Dopamine, which means her heart is doing more of the work. She is getting stronger everyday. The medication has been amazing in getting her to where she is now, but the less she is on the stronger she actually gets.

I am sad to see Gabi spend her 6 month birthday in the hospital, but she is getting well and that is the important thing. She is a fighter, with strength we could all only wish for. She has taught Jason and I more in 6 months than most do in a lifetime. She is the reason we have remained as strong as we have. Granted we do have our weak moments, but she is what gets us through those times. Gabi thank you so much for being our angel and guiding us in the right direction and providing us with strength beyond what we could imagine. We love you baby girl...now hurry up and get better so we can hold you, and love you, and squeeze you, and call you Georgialina...hehehe...our little joke!

Minor Misunderstanding...

So I was being very optimistic in thinking she may be off the ventilator by friday. The doctor stopped by and said we will hope for next friday, then if it happens sooner we can celebrate. She has surprised us before so nothing is impossible, but we need to stay realistic too! She is having a very good day considering the change in her meds.
Hearing this makes me a bit sad, because the chance of getting to hold her this week are slim to none. I asked if I could while on the ventilator and because of all the iv's that would not be good now, but maybe as we decrease some of that the chances will be greater. This is heart breaking... imagine having a child you are so used to holding all the time and then go a month without being able to hold nothing more than her hand...it is not an easy thing to accept. I know things could be worse, but this is the toughest thing I have ever faced in my life. I have stayed pretty strong, but it is starting to take a toll on me. I have gone home a bit more and I feel guilty doing that, but it is so hard to be in the same little room all the time and not be able to comfort and hold my baby. I hate feeling these emotions, but sometimes it is easier to be away. But then when I am at home and away I want to be back at the hosptial. It is a constant battle with myself. I definitely am comforted that she is doing so well... I am just losing a bit of my patience...I need to hold her, I need to see her smile.... Then I start thinking I need to not be so selfish. I will conitue to pray for my angel and her recovery, but I am also praying to find even more strength! She will come home and that is what I need to focus on!

Gabber Goo...

Gabber Goo is another name she has received, this one is from Miss Gracie...I am sure Gabi will appreciate that one later in life as well. Today is another good day. She will be off of her epi at some point today, as well as the bumex. Both of those meds are for blood pressure, but she was on them to increase her urine output. She has continued to pee great. The doctor believes she is dry inside her vessels...yeah, but she is still holding a bit of fluid in her tissue. So she may receive a bit more fluid to flush it out, but we are definitely heading in the right direction still. Her ventilator has been turned down even more than yesterday, she is actually breathing on her own...more than what the ventilator is doing for her, so that is excellent! So they will continue to wean her off of that slowly, but it will still be a couple of days before she is completely off of it. She has not used those muscles in a while so no point of pushing her now...baby steps!

Last night I went to Gracie's gymnastics. It was so great to see her. I miss her so much! I got used to having her around all the time, now I would definitely give anything for that. She is such a good little girl...we are so blessed with such wonderful children in our lives. Now we just need to get little angel home so we can all be together again...We are getting closer!!!

14 Days Later...

Gabbers had a great night. The pee pee dance worked...good job Gracie! They made a rate change in her oxygen on the ventilator which is a step in the right direction for weaning. She is no longer getting extra lipids, she is getting more formula...Yeah food! She is getting a calcium supplement for additional nutrition. She did go down on her epi...now she is receiving .04, it's a slight change, but every little bit counts. They completely turned off one of her pain meds. and her anxiety med. So today is a good day, she is on less and hopefully will be waking up more soon. If I notice discomfort she can still have more meds, but she is not getting it like she was...on the drip.

Last night I went home again! It was good, cleaned the house...not really what I wanted to do, but it has to get done. I missed Gabi a ton though. It was harder last night than the night before...I am sure the drinks had nothing to do with that...hahaha!!!

Special Request...

Aunt Laurie asked for pics, I only have a few but I figured I'd share what I have.


Gabi is NOT spoiled at all...

and that's just the balloons, you should see all the stuffed animals and angel figurines.

Another Day

Sorry we haven't updated since yesterday morning, but I finally took advantage of her doing well and went home. It was the first time I had been home in 2 weeks. It was a bit emotional for me, just leaving the parking lot made me cry. I stayed till 7pm so that way I would at least know who would be watching her through the night. Nurse Debbie was suppose to be here, but the poor thing broke her arm. We were very sad for her when we found this out. So we wish her a speedy recovery. Hopefully we will see her again, she may be out for a while.

Anyways I am sure you all are dying to find out what is going on today. Well although yesterday was a good day, we did have to turn her epi back on, but only.05...which hardly counts for anything. She did not need it for her blood pressure, she needed it because she wasn't peeing enough. She still has quite a bit of fluid to get rid of so that is why they started her back up on the epi...it helps her pee. Silly girl keeps doing this back and forth on the pee pee. I talked to Gracie yesterday and she was suppose to do the pee pee dance 3 times for sissy. Don't know if I mentioned this but Gracie and I made up a pee pee dance...it has worked before, so we will continue to do it for as long as we have to. She actually has picked up a little bit on it, so hey silly or not we will do the pee pee dance! Nothing else of significance has changed. They are starting to wean her off of her sedatives so she is a bit more alert, but still very sleepy. She is in a very comfy spot. Because of the lack of pee looks like she will be on the ventilator a little longer than we hoped. Our goal is to wean her off of the ventilator by Friday! Then I will be able to hold her...I CANNOT WAIT FOR THAT DAY!!!

I will do better than yesterday updating, I plan on staying here tonight so I have time to be on the computer...alot!

No More Epi!!!

We got a phone call at 7:30 this morning in our little room at the hospital. First, anytime the nurses call you in your room you get a little nervous to pick it up. However, we are glad we did, she informed us that Gabi has been taken off of her Epinepherin. The reason that is such a big deal is because that is her blood pressure medicine. She has been taken completely off of it and still maintaining good vitals! Wooohoooo. I think sissy must of done the Pee Pee dance at home last night cause Gabi had 4cc's per Kilo and she only requires 1cc per Kilo! Let the pee pee flow! haha I guess she also had a little gas and doody last night too which means her insides are working again. Our next big step is going to be getting her off of the venilator so she can breathe on her own. They think this might take a couple of days, but in the mean time they are going to stop giving her so much sedation so she can be more alert and start allowing her to do more of the work. Oh, I almost forgot...they are also going to almost double her formula intake because she is doing so good. So we are definitely getting on the right path to some normalcy.

Of course it will be a couple days before the breathing tube comes out, and a couple more days before she is off of the rest of her medications. Gabi will still be in the PICU more than likely until the end of this week so July 12th or 13th best case scenario. One of the nurses thought we would still be here around the 23rd of July...in the hospital not necessarily PICU. We are taking major steps in the right directions but it is just going to take a lot of major steps for us to get out of the hospital! ;-). Either way we are so excited as I'm sure many of you are as well. Keep us in your prayers as we will keep all of you in ours.

Love,
Jason, Micah, Gracie, Gabi

More Waiting

Well it does feel like there is a huge weight lifted of our shoulders now that Gabers little chest is closed up. Our sit and wait game is a little less stressful at this point, but still a sit and wait game!

Gabi still has too much fluid in her and with all of the Morphine she was having urinary retention...meaning she wasn't peeing. So they had to put the Catheter back in to relieve the pressure on the bladder. So Gracie you need to keep doing the Pee Pee dance and praying for sissy to go Pee! haha They are fine tuning the potion again and talking of adding some steroids to that potion. They are all very pleased with where she is it is just a matter of getting her back into chemical balance.

Poor Mimi Crawford had a rough day yesterday. Gabi had two things kinda go wrong yesterday and she happened to be in the room during both! haha. The piece called the "Manifold" which is where all the drugs go into before they move to her IV cracked and of course they had to change it out and all her numbers started going crazy as she is still very dependent on her medicine. Then she really started waking up and holding her breathe, which of course caused her to turn purple, and again Mimi was in here to panic for us! haha. As Mimi said at least she was in here so she could keep the nurses and staff in line to make sure they fixed it!

We appreciate all the well wishes. We will probably be in the hospital for another two weeks with best case scenario results. So if it isn't too much to ask we would still greatly appreciate your prayers for a speedy recovery while we are in here.

Love,
Jason, Micah, Gracie, Gabers!

Closure...

Operation...SUCCESS!!!

Everything went so good once they closed up Miss Gabi. She is still a bit sleepy, but she is doing really well. She has one less drainage tube out of her tummy, no more pace maker, and no more catheter. So now all I have to wait for her to be off the ventilator before I can hold. It will be a few more days before we can do without that, but at least we are getting closer. Thank you for the extra prayers, once again they worked!!!

Closer to Home!!!

Well I received a call this morning from down the hall. Nurse Sara called to tell me that Gabi is being closed up this morning! Wow, I defnitely was not expecting that call this morning. According to Dr. Allen yesterday we figured it wouldn't happen until Monday. But she pee peed like a champ last night and passed her squeeze test this morning. Nurse Sara figured she has overall put out 3/4 of what was put into her, so we have almost broke even. This is a huge morning for us. Jason had some work to do this morning so he stayed at home last night, but he is on his way. I just hope he doesn't get another speeding ticket! He has gotten 2 in the last month, you think he would learn!

So please say a little extra prayer for my angel baby this morning. I know that God will see her through this, but now comes a whole new begining and I cannot wait to get it going.

FYI: The divas piggies are back and she has a super cute green blanket today. It really brings out the color in her eyes...hahaha! Gotta keep a little humor to stay sain.

Nighty Night...

Overall we had a good day. I forgot to mention earlier that she was not able to be weaned off of the Epe, blood pressure med., I mentioned last night. Her kidneys are still a bit weak, still recovering so she will continue this med for a bit longer. Last night she also peed a bit less than we had hoped, but she picked it back up again today. The feedings have gone great. Her tummy is tolerating the formula...Wahooooooooo!!!

So she has defnitely been a wiggle worm today. The nurse gave her numerous doses of sedation, but she has built up a very high tolerance. She did mention that babies with down syndrome have a higher metabolism and have a tendancy to tolerate a lot of meds. before they actually kick in and do there job. I thought that was an interesting fun fact for the day. If any more change come this evening I will post, but I don't except to have to report anything. So I hope everyone has a good evening...get some good rest...for me!

FEED ME...

We are still progressing in the right direction! They are going to decrease the PEP, when she exhale she will still have a little pressure given to her lungs, that will allow more blood flow to her lungs. There will be an increase in her sedation because the little booger just keeps wiggling all over. She definitely has built up a tolerance and they have to keep increasing. Here is today's big news, they are gonna start feeding her formula. Just a little at a time to see how her stomach tolerates it. So I am sure it will feel good to get something she is familiar with...FOOD!!!

Last night when I came in to tell her good night, she was crying...not out loud, she still cannot make noises. It was really hard because all I could do was talk to her. She is so used to Mommy picking her up every time she cries, it broke my heart. Emotionally that has probably been one of the toughest things to except, I cannot hold my baby and comfort her. So I talk to her a lot and sing a lot too! She is my sunshine and even though it's gloomy outside she fills my heart with so much warmth and bright thoughts of her future. The day they say I can hold her I hope no one else expects to get their chance because I don't think I will be able to share!

FYI: For those of you keeping up with her diva style...
Nurse Debbie gave her a cute pastel blanket last night, and a new do...a ponytail! We just love how much Debbie keeps her personality going even through the hardest of times. Thanks Debbie!!!

A 4th to Remember...

Well it rained here in KC today and I ain't just talkin outside, this girl pee peed so much it was crazy, over 400 cc's. She had more out than what was being put into her body...Yipee!!! Also we are still weaning off one major blood pressure med. If she continues to respond well to the weaning there is a chance tomorrow morning she will not be on it at all. If we stay on this track there is a serious possibility her chest will be closed up on Friday. We are learning not to hold our breathe around here but she is doing much better than she was before! We are also very excited that she no longer looks like Baby Princess Fiona! As we were leaving we noticed that the puffiness in her ears was gone and she had her beautiful small acker ears back! *wink*wink*

We want to thank our families for making it feel a little more like the 4th of July. They brough BBQ and made all our favorite dishes. Mema Acker made beenie weenies, Mimi Crawford made Cheesy Potatoes, and Aunt Gigi made Dirt Cake...mmm mmmm mmm. Our family has done a terrific job of taking care us of while we are in here. We are extremely lucky to have such a loving supportive family as we all know not everyone has.

Love,
Jason, Micah, Gracie, Gabi (Pink and Not as Squishy! haha)

HAPPY 4th!!!

Today is yet another good day! I really like being able to type entries like this. She let up a little over night on the pee, but she has picked right back up this morning. In the last hour she has peed 37 cc's...WOW, didn't even know she was capable of that...GO GABBERS!! She is awake a bit more and moving around a lot. It is great to see her being more herself, but it is still to early for that. She has developed a tolerance to her sedation and pain medicine, so she's requiring more meds to help with the sedation and medication. Also today she will start a narcotic that will help with withdraw symptoms. Poor baby has become a bit of a junkie, I am just glad she can't feel the pain. So this is the only time I am ok with her dependency.

Oh my goodness, I have to tell you just how great Nurse Debbie is. Gabi has a red blanket and a blanket with stars and stripes...not to mention the cutest little piggies with red scrunches and blue heart barretts...SUPER FESTIVE and SUPER CUTE!!!

I hope all has a great day, HAPPY 4th...be safe!!!

Good Night Sweet Angel Baby!

Today Gabi had a sudden outburst of pee pee. She peed a total of 133 cc's, now she is showing off...hey I will take her showing off any day! Because she is peeing so much they have actually started giving her a potassium supplement. They stopped giving her constant fluid to her chest tubes and now she just gets a few small doses through out the day. We are "fluid restricting" her is get her "dry", that is exactly what Nurse Debbie.

Her is something fun. Last night Nurse Shelia found a red, white, and blue blanket for 4th of July for Miss Gabbers. So tonight when Nurse Debbie changes her bedding she will be ready to celebrate tomorrow. Also Nurse Debbie is gonna put her piggies back in her hair and find festive pony holders. We have been so blessed that such caring, compassionate women have been taking care of our angel. I would not be able to sleep at all if I did not trust those who watch over baby girl. Don't think I get much sleep, I have been staying at the hospital every night in a twin bed down the hall from Gabi...no such thing as comfort, but I would be any other place but here. I am exhausted but not do to the fact I am up worried about who is caring for her, she is in the best hands possible!

Tomorrow we are having a picnic. The family is coming up I am so excited. It will be nice to get outside a bit. There are picnic tables out front, we are getting BBQ...yummy!

And tonight I leave you with this thought..."if god brings it to you, he will bring you through it".
A girl friend emailed that to me and I believe it with all my heart!
Sweet Dreams!!!
I love you Gabriele Sheridan...xoxo

Good Morning...

Today is another new day and things are starting to get better. She here extra dose of calcium was turned off, because now she is getting more nutrition. 2 nights ago was a bit scarey she only pee peed 4 cc's...I swear this girl just likes to scare mommy and daddy cause last night she pee peed 74 cc's. Amazing! But she is also being weaned off of two of the medications that she has really depended on. So that is exciting as well, she is having to do more of the work! Her heart rate and blood pressure are doing great. I feel like we are still on the up side of the hill on our crazy rollercoaster...YIPEE!!!

I will update more later, not to much to report...that is such a great feeling!

Pics to Brighten The Day!

Get Well Soon Angel Baby!!

We Love You,

Can't Wait to Hold You!!

XOXOXOXOXOXOXOXO

Zach will scare away the uckies!!!

Sassy Little Diva!!!

Sissy is ALWAYS ready for the camera. She was in a wedding on Saturday, recognize the dress? It was from our wedding...she is so BEAUTIFUL!!!

Change in Meds...

The doctors decided to stop giving Gabi one of her heart meds. This should help her blood vessels relax. Her blood pressure is a little low, that is why they turned off this med. The med they turned off helps the blood flow to the extremties and keeps her warm. She was plenty warm, if she gets cold then they will turn it back on. She is also getting another echo today to reevaluate. It has been a while since she has had one so they want to be sure they didn't miss anything. Meaning sometimes things can change and they want to be sure they are doing all they can. They are also going to increase her nutrion she gets per hour and in turn decrease her chest tube output replacement.

Well they turned off her heart med. about a hour an hour ago, blood pressure was low, but now we are back up again. Slowly but surely we are making progress. I just wish I could speed up the process, I am so tired of being here, but hey it could be worse. I am just pleased that everyday we are seeing things change...for the better. Even if it is just the smallest amount of progress it will all come together and she will be my happy, smiling, rolling over baby :)

Today is a New Day!

Something that Micah and I are holding onto is the fact that every day is a new day and we are working forward from that point. I got up early to see pink and really squishy (haha) before I came to work. As you might of assumed they are not going to close her up today and as puffy as she is they really don't know when they will. However, her heart rate was down in the 150's which is awesome, her blood pressure was high 60's by one scale and in the 80's by another. I would explain it but probably wouldn't do a very good job as far as why they are measuring blood pressure in two different ways and why they are so different. Just know that they are good and the Doctor's are pleased! haha Not to mention the fact they they came down on her blood pressure medication again and she is still holding good numbers. She is actually requiring less oxygen as well she was down to 40% this morning from 50% last night.

Now our arch nemesis for the last couple days are those darn kidneys. She is still not producing very much urine again. Her electrolytes are still good something else was starting to increase but it looks like she might be able to avoid dialysis again today but if she doesn't pee a bunch today then she may not be able to avoid it tomorrow!

So again as I said...Today is a new day and as long as tomorrow comes we are the happiest people on earth! I'm at home working today so I'm sure Micah may have some more to add to this throughout the day! I'm pretty sure I'm not going to make it a full day but got to try and get some things done! My babies know I'd rather be there with them and in spirit I am!

Love
Jason, Micah, Gracie, Gabi (Pink and Really Really Squishy! haha)

Sweet Dreams...

Well all in all today was ok. The little booger is not peeing. Me, Daddy, and Gracie made up a pee pee dance and song. We performed quite a few times, the nurses absolutely adore Gracie. As if she has never heard how much of a doll she is! It helped a little but we are still not seeing the results we want. So they are playing a bit with a few medications and just doing the old wait and see...have we ever mentioned how much we hate that game!

Today for me was much better than yesterday. I had a bit of a hard time dealing with a particular staff member. I am super sensitive to everything right now (imagine that) and well he was not. So yesterday for me was negative, but today seemed better. I have to tell you though Gabi does not look like our pink and squishy, she is really really squishy! She is still as beautiful as ever, but she is full of fluids. It is hard to see her this way, I keep asking if there is a point where we get concerned that she is so full, but we are far from it...so no worries. It is just hard to see my little baby so big.

Heart rate and blood pressure as still at good levels. She is weening off her blood pressure meds a little at a time so that is exciting. It is so great to see the baby steps forward, but we continue to have our faith in God, because like Jason said things change every minute.

Morning Update

Not much to report...no miracles overnight. She is actually urinating less again and they have had to give her more fluid. Her urine went from the 50's to the 40's and now down to the 30's again.

I just sat and listend to the Dr's and nurses talk about all her medications and the things they were going to try and adjust to keep her stable. WOW....there is a lot of stuff they are working with and making sure that when they make adjustments it doesn't effect the other 10 or 11 medications she is on. They are doing a very good job and the comment today in response to how is she doing was...she's not on life support and she doesn't need dialysis yet. She has taken a few steps back but technically she is still doing better than she was. Again the interpretation of good....good is she's still alive and not requiring machines to keep her that way. Her body is still responding to the medications it is just requiring constant modification! They are talking about trying to get her some nutrition because she really hasn't had any all week.

It wasn't our most optimistic morning but she is a fighter and regardless of the size of the peaks and valleys of the roller coaster she is on she is still fighting for all of us! I know all of us will continue to fight right alongside her in our prayers!

Love,
Jason, Micah, Gracie, Gabi (still pink and squishy! haha)