Home and Doing Well

So with lack of sleep I haven't had time to update...We got home from the hospital last Wednesday afternoon. Grace had the worst night ever (sleep wise) last Tuesday night (while still in the hospital)...we got 3-4 hours of sleep, she just couldn't fall asleep! The good news was that she was feeling better, just couldn't sleep. Finally at 6 am she feel asleep. Then I heard her fussing at 7 and couldn't believe she was already up. When I looked a Doctor was by her AHHHHHH! We had had enough so when the pediatrician said, "What do you think, are you ready to go home or do you feel more comfortable staying one more day," the choice was easy...I couldn't get the words out fast enough...HOME! The grandma's stayed through the day on Wednesday so mom could get some sleep, poor dad had to work! The last few nights were much better. We all got some sleep and feel a little better. Grandma Kathy stayed home with Grace the rest of the last week so mom and dad could finally made it back to work.

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.

Not Home Yet

We have not made it home yet as things got worse before they got better. We had a terrible night; Grace was up crying nonstop. She was so miserable and there was nothing we could do to help her. She finally fell asleep around 5 this morning. We are all so tired. She was coughing nonstop and was just exhausted. This morning was bad too, but now she seems to be doing a little better. She is still on oxygen, but really only needs it when she is sleeping. We are in no rush to leave; we feel more comfortable being here with the Doctors when she is this sick. They have now called this sickness RSV which we hope she never gets again. I told Beau we are not ever going to let anyone near her...maybe that way she will stay healthy :). We are thankful that Grandma Kathy could come up today and take care of Grace while Beau and I got some sleep. We also got to go out for dinner while Grandma and Grandpa Harbort stayed with Grace. Grace had her first tornado drill tonight too...you have got to be kidding all the kids had to go into the hallway. Grace was sleeping until that happened! Hope tonight is better! We have a great nurse tonight and are thankful for that!

Not So Happy Easter

Poor Grace...it seems that whenever a holiday comes around we are at the hospital. Halloween, Thanksgiving, a couple weeks before Christmas, and now we find ourselves here again on Easter. The last four days or so Grace has been battling another cold. I spent some time at home last week taking care of her but things got worse on Friday and we took Grace into her pediatrician. He diagnosed her with bronchiolitis. He prescribed steroids to help and said things should get better. But things only got worse and Grace's cough was so bad that she would turn bright red almost purple and not be able to catch her breath. We took her to the ER yesterday and spent 5 hours there until they admitted Grace to the hospital. She got their attention fast when she had a coughing fit and was having a hard time breathing. The first assessment was that Grace had pneumonia. I was terrified knowing that for kids with Emanuel Syndrome...this could be very serious. After coming up to the room different doctors took a look and think that her x-ray does not show pneumonia...they felt it looked more like RSV, because the symptoms get worse before they get better...but that test has come back negative. She had also had the RSV shots to help prevent RSV... So for now she seems to be a little better and the plan is to get her off of the oxygen today and go home tomorrow. The Easter Bunny did bring a basket to the hospital with candy for mom and dad, and a book, sleep sack, and little lamb for Grace. The hospital is always so great! I also hear that the "grandma and grandpa bunny" stopped at our house and left a surprise! Grandma Kathy and Papa Tim came back from their vacation in Florida and brought Grace the cutest princess outfit and sweater...she will look so cute in it! Mom and Dad's friends...Pete and Jenna brought candy for mom and dad and a cute bunny for Grace...so thoughtful! So it has been a pretty nice day after all, but still can't wait to get home and for Gracie to feel better! Hope everyone has a great Easter.

Hip Hip Horray, I am 7 Months Old Today!

I can't believe that Grace is 7 months old...time flies! To bad she was sick with a cold. Mommy got to stay home with her and is glad she is feeling a little better. Grace is doing a few new things. She is constantly babbling which is so fun to hear and watch! She continues to work on holding up her head...and today she even laid on her tummy and lifted it up for a short time. She used to hate her tummy time! Sleeping has some sort of pattern...usually. She gets to sleep by 10 and then is up by 1am. Awake for an hour or two. Then up around 4 or 5. So we do get some sleep. Car rides are better! She has learned to fall asleep which makes for a much more relaxing ride. Although Grace still loves to bounce on her exercise ball...we don't have to use it much anymore. We usually bounce her to sleep, she still won't fall asleep on her own yet. Grace loves bath time! We are looking forward the weather warming up so that we can take her swimming! Grace is concentrating on people more and watches us when we walk by or walk away from her. She is also starting to act like she wants to roll over...arching her back and raising her arm way up...so cute! Take a look at Grace's new bib mommy got her...so true!

Dear Grace,

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!

Love,

Mommy and Daddy

A Wonderful Weekend

We had a fun weekend. It was Grace's cousin Mason's 1st birthday. We had to drive to Menomonee Falls for the party. If you know Grace, you know that the car is one of her least favorite things. But lately, around 5 months, Grace has changed. She is doing much better on her car rides. But we were still worried because this ride was going to be about an hour and a half! AHHHHHHH. We are excited to report that Grace had no tears...NONE. She slept and looked all around both ways. It was so exciting for us! She sure has come a long way. That was not the only exciting thing that happened! Grace doesn't smile too often, so when she does it is very exciting. Grandma Great caught a smile on her camera! It was so great. What a fun

day!

Spring Break for Grace and Mommy

Well it is spring break and we are staying home. Hope to get some rest! We were supposed to spend this week in the hospital for Grace's surgery for her malrotation in her intestines, but we have decided against the surgery since we got some new news about her kidneys...We found out last week that Grace's kidneys are only functioning at 25% and another hit would be a disaster. It was a hard and tearful week for Beau and I, as we know that at some point we may be faced with some very difficult decisions. For now Grace is stable and just needs to continue gaining weight. We enjoy everyday and take one day at a time, trying not to look too far ahead. Grace is 6 and a half months old and now weighs 14 lbs. 6 oz. Getting to be such a big girl! She is much happier and doesn't need so much attention from mom and dad. She enjoys laying on the floor kicking and looking around. She has gotten a lot better at riding in the car and even falls asleep now! Nights are still not too good. It takes a long time to get her to sleep, then when she wakes up, she may be up for 3 hours AHHHHHH. Hopefully this will get better soon! Hope to add some new pictures of the little lady soon!

Grace's Story

The day we found out we were pregnant was the happiest day of our lives, but following a very eventful and scary pregnancy we got terrible news. While I was on bed rest at the hospital we found out that our daughter would be born with Emanuel Syndrome. Here is her story...


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.

Seizures Start:
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!


Getting Better:
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!