Tuesday, December 29, 2009
As far as her health goes...her kidneys remain stable, and her blood work is down to every other month! We got some great news from her heart Dr., her last ECHO showed that both of her holes in her heart are now closed! He told us that Grace's heart is no longer a concern, and we no longer have to see him. One less Dr, it was a very great day! Otherwise Grace has been pretty healthy, just colds that we pray don't turn into something bigger. Grace is growing and getting heavier everyday! She now weighs 20 lbs 15 oz! In the 65th percentile for her weight!
Christmas was a lot of fun. Grace LOVES all of the lights. She enjoys doing tummy time in front of the tree, and I have to say, she may be sad when we take it down! She got some new toys that she loves...a monkey from her cousin, that we named Marty the Monkey, a sing along stage from Grandma Kathy, and lots of clothes from Grandma Deb. It has been so nice being home with daddy and Grace this week! Lots of time cuddling with her, it is wonderful. Grace will also be going on her first trip to Wisconsin Dells! We are taking her to Great Wolf Lodge, I hope she likes the water. It should be lots of fun!
Hoping the new year brings more great news for Grace…she is such an amazing girl and has come so far in the last year. We are so proud of her!
Sunday, November 1, 2009
Of course Grace was a pretty pink princess...no better costume for her! Here are some pictues of all of the fun!
Sunday, September 13, 2009
Monday, September 7, 2009
Today is Grace's first birthday. We wanted to thank all of you for sharing in her life...it has been an amazing journey so far! Your thoughts and prayers have been so comforting. We wanted to share these two things, we have both of them hanging on our fridge. Grace is one amazing little girl, we are so lucky to have her in our lives!
"Why I was Born" Author Unknown...
I was born to learn and love like everyone else. My body is imperfect, but my spirit needs no help. I was born to give to you, with open hand and heart. I'm the strongest soul you know, though I don't look the part.
I was born to teach you hope, faith, and patience, too. I came because no one else can do what I do. So the next time you think of me as broken, damaged, torn, know that I am here to lift you up...
That's why I was born.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thanks for all your support, love, and prayers,
Amanda, Beau, and Grace
Tuesday, August 25, 2009
They told me I could go home until Grace was born. They didn't need me to stay at the hospital, they wanted me to be with my family at home. The C-Section that was planned that same week was canceled. Both my doctors felt it was important to let my body go into labor naturally, so Grace and I both had the best chance, even though she was breech. Really I wanted to keep the C-Section...lets just get her out, I needed to hold her to see if she would be ok, no more waiting around!
Our families came to the hospital and we packed our things up and left. I couldn't believe this was happening to me. At this point we really didn't even know if Grace would be born alive, or would live long after birth. To be honest, after all we were told we didn't know if we wanted her to be ok after she was born, we didn't want her to have to suffer and have a hard life. So many emotions went through our head. We tried to look information up on the internet, but it was all to much, to horrible to imagine our baby not being healthy. It was like loosing a baby, a baby who was supposed to be healthy and would grow up talking and walking...all of the things kids are supposed to do. We had some difficult decisions to make.
We had a meeting with the doctors at the hospital where Grace would be born. We had to make sure everyone knew what was going on and what we wanted during my labor and after Grace was born. We asked not to have me monitored during labor, we didn't want to know if Grace didn't have a heartbeat, that would be way to hard to handle during that time. We also asked that she not be resuscitated or a breathing tube be placed if she was not breathing on her own. I felt like a horrible mother saying these things, it was a very difficult decision for Beau and I to make.
I was so worried about giving birth because Grace was breech, coming out butt first. But she was small and both of my doctors thought it would be best for me, and an easier recovery with all that I was going through. Two weeks later, Grace decided to maker her entrance. It was an exciting but scary time in the delivery room. I was pretty quiet, worried about the birth and what would happen after with Grace.
All went well, Grace was born, I had no complications and it was great! She was so pale and not responding right away. They cleaned her up and she opened her eyes so big. She needed to be taken to the NICU, but was breathing on her own.
There were many tests done and yes there were things that were wrong, but I had my little girl...and that is all that mattered.
It was all very hard, a nightmare, something I would never wish upon anyone. But the truth is, I would do it all again. In a second. I would go through all of the hurt and pain to have my Grace. She is truly amazing!
Friday, July 24, 2009
Wednesday, July 8, 2009
Grace, you are such a fighter. You work so hard and have come so far. We love you baby girl!
Mommy and Daddy
Thursday, July 2, 2009
Saturday, June 27, 2009
Wednesday, June 3, 2009
Tuesday, May 26, 2009
Tuesday, May 12, 2009
Sunday, May 3, 2009
Monday, April 20, 2009
Last Friday Grace had an appointment to get her ear mold for her hearing aid. We are pretty excited. It was a long wait for medicaid to approve it (over a month of waiting), but now we can finally go ahead with the ear mold. She should get her hearing aid in 2 weeks. Mom got to pick out the color which was fun, pink with pink glitter. I really hope Grace likes pink because she doesn't get much of a say...mom loves it and that is the way it is! We hope it helps and hope she doesn't hate it too much!
Other news...we got the report back from one of Grace's therapist. She did an evaluation before Grace had gotten sick to see the progress she has made since she came home from the hospital in November (she was 2 months old). Developmentally Grace is at 2-3 months, even though she is now 7 1/2 months old. It is hard to hear, but we know that Grace will be behind other kids her age. It is hardest when we are around other babies Grace's age...your mind naturally wonders thinking Grace should be doing those things. But we take one day at a time and are so happy with all of the things that Grace can do. We are so proud of how far she has come since we brought her home at 2 months old in November. We have seen huge improvements in the last 5 months...she is much calmer and is able to calm herself when she is upset. She is also babbling non-stop...she has so many stories to tell. She will give us little smiles and I cry nearly every time she does! She is working at holding her head up and is getting better. And new this week...Grace started tummy time and doesn't mind it too much! YEAH! We are so proud of Grace for all she can do and continue to get excited for every little thing she learns!
So for now...thank you for all of the prayers.
Monday, April 13, 2009
Sunday, April 12, 2009
Tuesday, April 7, 2009
You have been through so much in your short little life. You are such a fighter. There have been some very hard days but mommy always said...life gets much better. We are so happy that you are finally able to enjoy being here with us...you are our angel! Happy 7 months! We are so proud of everything that you can do and we love you!
Mommy and Daddy
Sunday, April 5, 2009
Saturday, March 28, 2009
Tuesday, March 17, 2009
The Day We Found Out:
Even though I had been in the hospital on bed rest due to low amniotic fluid, it was to be an exciting week. It was Monday and in a few days...Thursday our Doctor had scheduled a C-Section because Grace was breach. We had done an amnio 2 weeks before for some piece of mind because there were so many complications during my pregnancy. During this time is when I was admitted to the hospital, I had low amniotic fluid. The results came back a few days later...everything was normal! We were so relieved, even though our doctor told us the full results wouldn't be in for 2 weeks, but that the tests that come later are problems that are very rare. Well 2 weeks later our doctor called down to our room in the hospital. It was very early around 7am or so. She had asked if Beau had left for work yet, when I said no, she told us she wanted to talk to us about our results. My heart sank. I knew something was wrong and while waiting for the doctor we went through all of my pregnancy books looking for what it might be. It seemed like forever when the doctor and a genetics counselor walked into the room. Our nurse also sat with us. They told us that they tests came back and there was something very wrong. All I remember hearing were the words "your daughter will be mentally retarded (I HATE that word!), may not walk and talk..." They told us most babies that have Emanuel Syndrome miscarry and that they had never seen this before. That there were only 200 or so documented cases. They were not even sure if Grace would survive after she was born. I lost it and the rest is a blur. It was like losing our child we had hoped for. Our dreams of a healthy girl were gone. Your mind goes right to the future...no sports, no college, no hearing your baby say MaMa, or DaDa... It was the worst day of our lives. After the doctors left we just felt lost. They told me I could go home because they now know why I was having so many problems. They wanted us to have time to be with our families. My doctors both (high risk and OBGYN) advised me that even though Grace was breach, she was small and for my health they thought I should have a vaginal birth. The thought of this scared me! I just wanted to keep with the plan of the C-Section. No more waiting around. Let's just have her and find out if she is ok or not. Looking back I am so thankful that I listened to my doctors advice! We went home. Beau and I talked about everything. We tried to look up information, but turned the computer off because it was all too hard to handle. We went through every emotion. We were thankful to find out the news before Grace made her entrance to the world. It gave us time to comprehend what might happen and how our lives were about to change. Looking to our faith, but not knowing what we should pray for, finally we put it in God's hand...whatever his plan...that is what would happen.
She is Here:
Before Grace arrived we spent some time talking to the Genetics doctor, my doctors, the NICU team and I am not sure who else. We came up with a plan, it was the hardest decision Beau and I had ever made in our lives. If Grace was born and needed resuscitation, and had to be on a breathing tube...we just wanted to let her go and comfort her and hold her and enjoy the short amount of time we had. To even say these words crushed me...I felt like a terrible mother and just hoped Grace couldn't hear all that Beau and I had talked about in the past weeks! Otherwise we would just take a day at a time and see what happened. The day came on September 7th. We went into the hospital at around 3pm and Grace made her entrance at 9:21pm. There were so many mixed feelings waiting for her to come. I was excited and terrified. I had her and she came out butt first! She was very pale and not making a sound so they took her right away to do an assessment. I was praying the whole time for her to be ok. I couldn't see what was going on but Beau was with her. It took a second and then I heard a cry. I remember Beau's smile saying, "her eyes are wide open". I was relived. I got to hold her for a shot time before they took her to the NICU. Later the doctors came in to tell us that so far she was doing fine. She was on a very little bit of nasal oxygen and that was it. He told us that she had a very small jaw and a cleft palate, also called Pierre Robin ...they would do more tests in the morning to see what other problems there may be. We got to go down to the NICU to see her and spend a little time with her. It was so sad to leave her there...I just wanted her to come back to the hospital room with us.
The Day of Tests:
The following day Grace was so busy. She had many tests done and to tell you the truth I can't recall them all. The information that we got after the tests were all over was that for the most part all of her organs were fine. She had some heart abnormalities including an ASD, VSD, left Superior Vena Cava. We couldn't believe the good news, FINALLY! Another problem was that Grace was not able to take much for food from her bottle. They ended up putting a NG-Tube in her nose to help her take more. We continued to try and bottle/breast feed her, but it wasn't working. She would also make choking sounds while eating and get very upset. We decided with the doctor's advice to have a G-Tube placed in Grace's stomach. This way we could take her home and continue working on her bottle feeding. The same day we had decided on this surgery, a plastic surgeon came to see Grace's palate and small jaw. At first she wasn't too concerned because she wasn't having any "blue" spells and seemed to be breathing just fine. Then she watched her struggle to take a bottle and a very concerned look came over her face. She told us that she thought Grace should be transferred to the American Family Children's Hospital in Madison, WI right away to have her jaw lengthened.
Grace's Jaw Surgery:
The surgery was called "Mandibular Distraction". During the surgery the doctor would make two small fractures on both sides of Grace's jaw. Then she would put in the distractors (screws that turn to lengthen the jaw). Twice or three times a day for about a week they would turn the screws and Grace's body would make more and more bone...lengthening her jaw. During this time Grace would be in the hospital (about 10 days) and she would be on a ventilator most of the time. It all sounded so awful, she was only 2 weeks old. When she explained what could happen to Grace if she didn't have the surgery, we knew we had to have it done right away. The G-Tube surgery was canceled for now. After two weeks in the NICU Grace was transferred to the PICU at the Children's Hospital and the surgery was scheduled for the next day. The surgery was on September 24, 2008. The surgery did not go as planned! Grace came up from surgery, she was so pale and swollen. We felt so bad. Then the doctor told us what happened. Near the end of the surgery something (we have heard two different stories) happened in the operating room and Grace's heart rate dropped. They had to to CPR to get her heart to beat normally again. When they told us about this the first question was what will be the result from her lack of oxygen during this time? The told us that it was such a short amount of time that they didn't believe there would be any complications. Boy were they wrong!
Grace's Kidneys Shut Down:
In the next few days the doctors realized that Grace was not producing any urine. They told us that during the complication in surgery her kidneys took a hit and were not working. We just had to wait and hope they would come back. It was a long wait. Each day standing by her bed staring at her catheter hoping for pee. A little came but it wasn't enough. Grace's little body was swelling up with fluid due to the toxins that her kidneys could not get rid of. It was horrible. They couldn't wait any longer and hoped that putting her on dialysis would help her kidneys. She went back down to surgery on September 26, 2008 and the doctor put in a catheter that was too big for her...because they didn't have any small enough to fit Grace...babies usually don't need dialysis! We were crushed, scarred. We didn't want her to have to go through all of this and the thought went through our minds of how much is too much for Grace to handle. We couldn't imagine her having to be a dialysis the rest of her life. Luckily Grace only had to be on dialysis for 10 days and they they turned it off and Grace was able to stay stable on her own. Her kidneys are still not healed, but stable for now.
As if this wasn't enough, Grace also started having seizures. She had two seizures that we could see, but the others were going on and we didn't even know it. Seizures can be a part of Emanuel Syndrome, but in Grace's case, this too was all due to the surgery and lack of oxygen to her brain. Doctors started seizure meds which seemed to take care of Grace's seizures. Grace had a continuous EEG for about a week. I couldn't wait to get all of the glue out of her hair! When they felt the seizures were under control the took the leads off and did an MRI to look at Grace's brain. We met with the neurologists about her MRI, they found that she has a small cerebellum, which is related to Emanuel Syndrome. He told us that it may or may not cause some motor difficulties...but this is not any new news to us. They also noticed some areas that were injured due to her surgery...they may get better with time and he just wants to watch these. A second MRI would show that Grace had some severe brain damage from surgery and the neurologist was not sure what the outlook would be for her developmentally. So she had two strikes against her; brain damage and Emanuel Syndrome.
The Ventilator Comes out,Then Goes Back In:
After two weeks of a machine breathing for her, the doctors felt Grace was ready to try on her own. The ventilator was scheduled to come out at 11am. It would be the first time in 2 weeks that Beau and I would get to hold her. I couldn't wait. After it was finally out we held her all day, but something didn't seem quite right. She seemed very uncomfortable, but the nurse assured us that it was just because she was not used to breathing on her own. When the doctor came in, he immediately had a concerned look on his face. He had blood drawn and the results were not good. Her oxygen levels in her blood were so bad that the room filled with doctors and nurses to quickly put Grace back on a ventilator. We were standing in the corner of the room. Suddenly alarms were going off and we could see Grace's oxygen dropping. It was the scariest moment...which seemed like forever. We found out that she had a collapsed lung. Finally they got the tube in and she was breathing much easier! We felt lucky we got to hold her for a short time, but now had to wait until she was strong enough to breathe on her own. It was another week and they tried to take the tube out again. This time it was successful, but the doctors put her on C-Pap just to help her out a little. Grace hated it. It wasn't long until I took matters into my own hands and tore that thing right off! She was fine and didn't need any more help! HA, sometimes mother knows best!
Once Grace was able to breathe on her own things slowly got better. She had one last surgery to place her G-Tube and take out her dialysis catheter. After spending her first 2 months in the hospital, Grace finally got to go home. It was an exciting, but scary day. Grace came home with her G-Tube and used a feeding pump, which we just needed to get used to. She also had a lot of medicine that we had to give her twice a day, including a shot that we still give her once a week. It only took a few days and we had the hang of it!