The first month or so we were at the Dr. every other day basically. Or so it seemed. We were either with Dr. Wolfe, who we decided to stay with her throughout this even though she wasn't suppose to be their pediatrician. Otherwise we were making the hour and a half trip up to Marquette. Our first appt. with the surgeon was on April 24. He didn't tell us much other than we could expect her to have surgery between 6 to 12 months. It would all depend on how she was thriving and breathing. He didn't really have much to say and it seemed like a wasted effort.
May 6th we headed to Green Bay, WI to see the pediatric eye Dr. Throughout all of this they had brought up some concern about a condition called Stickler Syndrome. After the more I learned about this and heard about this I realized all it was is a name. I could deal with another name I guess, as long as it didn't mean something else horrible in all of this.
The Eye Dr. did let us know that typically when a child has stickler syndrome they are very nearsighted, and Sylvia is actually completely opposite and is a little farsighted. Which is typical in babies.
We headed to Marquette again in June to see the clinical geneticist. They would draw her blood and then perform extensive tests to determine whether or not she has any of the three forms of stickler. We are still awaiting these results.
They had asked me all sorts of questions to see if they could diagnose this as genetic or not. As of right now it seems to be the way she was positioning between 12 to 16 weeks. They sent us to the lab for a blood draw which was an absolute nightmare. They tried three different veins and failed each time. The reason was supposedly because she is so thin. She screamed like I have never heard her scream before. They ended up taking blood from her artery in her wrist.
To reward her for her braveness, mama went and got her ears pierced. I know, shame on me! :)
Thursday, July 15, 2010
To those who don't think before they speak....
So as hard as it has been on me, there are much more severe cases. HOWEVER, it's still a sensitive situation and it has been very difficult.
I guess my favorite thing that people say to me is........
"Oh it doesn't even look THAT bad..."
Um, excuse me. My daughter does not have the more known type of cleft, which is the lip.
As a matter of fact, at first glance nobody would ever know there was something wrong with her.
So before the next person tells me this, remember my daughter is absolutely gorgeous!
The Discharge
In order to be able to take Sylvia home that night we had a ton of things we needed to learn. They needed her hooked up to an Apnea monitor 24/7. Because of Sylvia's tongue being so far in the back of her mouth, if she were placed on her back she would choke on it. Therefore we had to sleep her on her tummy. We had an apnea monitor on her and if any of her breathing had changed an annoying alarm would sound and we would know what to do. Usually it was a false alarm, thank goodness and never had to use any of the CPR we were trained with.
After the apnea monitor was assigned she needed to be placed in a special carseat bed, and take a carseat test. A carseat bed almost looks like a tiny little box, that she could lay on her belly with. It's usually assigned to premie babies because they can't hold their head up at all. She passed her carseat test with flying colors!
All that was left now was to drive home! And start our lives finally together!
After the apnea monitor was assigned she needed to be placed in a special carseat bed, and take a carseat test. A carseat bed almost looks like a tiny little box, that she could lay on her belly with. It's usually assigned to premie babies because they can't hold their head up at all. She passed her carseat test with flying colors!
All that was left now was to drive home! And start our lives finally together!
Marquette Bound
Tuesday, April 6 we followed our baby to Marquette, MI. We even took Ryan with us. We got to the NICU probably around 3 p.m. that afternoon. The NICU is like something you've never seen before. It was peaceful and very calming. The nurses up there were just amazing. We were able to visit with Sylvia when ever we wanted. Poor big brother had to sit in the waiting room, but he was such a good sport. He never had any sort of temper tantrum or anything. He must have known he had to be a good boy for his little sister.
The reason Sylv had to be transferred was due to the simple fact that she needed to learn how to eat. The nurses at DCH did an amazing job trying to teach her, especially Sarah (who I think is an amazing nurse) who tried and tried and tried to keep her in town for us, but unfortunately they just didn't have enough experience or equipment in this sort of case to keep her home.
I knew that as long as she was working with a nipple she would be able to come home sooner. I dreaded the idea that they might have to feed her thru a tube that went down to her tummy. It was so frustrating because it seemed like a nurse would learn her and then the shift change would come and the next nurse would have to learn her all over again. She was doing so well when I left her late Tuesday night. We felt really good about what was happening. I kept hope that she would be coming home in a day or two.
Wednesday April 6, 2010
We decided to head home on Tuesday night to try and get a good night sleep in our own bed. On Wednesday morning we headed back up there bright and early. I walked into the NICU and she had a little tube going into her nose. I lost every last ounce of hope I had. I didn't understand. When I left she was doing so well, then that dreaded shift change. They just couldn't get it together. That day I met with my saving grace. The speech therapist that worked at the hospital in Marquette. I will forever be in debt to this woman. She found a nipple that would work for Sylvia. It's called the Ross Nipple (http://www.abbottstore.com/content/ebiz/anstore/invt/56054e/cleftpalate_nipple_med.jpg). Sylvia was finally eating about 50 CC all on her own. It was such an awesome improvement. The Dr. in the NICU still wanted her to have 70 CC so the rest they would give her thru her little tube. 50 was such an improvement over nothing at all! The Speech Therapist taught me how to position her and how to feed her. As soon as she could eat it all and take nothing thru a tube then she would be coming home very shortly. I would be there at every feeding making sure she could eat for me. She was doing just amazing. She ate the entire 70 cc for me every time I fed her. All I had to do now was teach the nurses. They were so wonderful and took every tip I had for them and never once made me feel like "what do you know, you aren't the nurse here". By Thursday night she was taking bottles for everybody. She was even taking them overnight.
Friday April 8, 2010
I had decided to head to Marquette on my own. This was starting to take a horrible toll on Ryan and it just wasn't fair to him. I had set in my mind that I was NOT coming home without this baby. I told Derrick I would call him after every feeding and let him know how things were going. The past day or two Sylvia had this AMAZING nurse. She had asked the Dr. what was keeping me here. He had said it's basically her feeding. I got to the NICU early Friday and was SO happy when I saw the tube had been removed from her nose. She was taking every feeding on her own. I could have KISSED that nurse I was so thrilled! She then told me that the Dr. said she could go home as soon as she was taking all her feedings. I knew this was my chance to push it. Every time that Dr. walked by I had caught him and said "is it my turn yet". He would just smile and say "I'll be with you shortly". He didn't realize that his idea of shortly and my idea of shortly were two different things! Finally after I got his attention he was telling me about all the progress she had been making. I was thinking we were going home but he never actually said "you're going home now". He walked away from me, and I said "HOLD ON A MINUTE". He turns around and said to me "Here I am finally telling you that you're going home and you're holding up the discharge process". I was so thrilled I ran out of the NICU and called Derrick crying! I'm taking our baby home Derrick!
The reason Sylv had to be transferred was due to the simple fact that she needed to learn how to eat. The nurses at DCH did an amazing job trying to teach her, especially Sarah (who I think is an amazing nurse) who tried and tried and tried to keep her in town for us, but unfortunately they just didn't have enough experience or equipment in this sort of case to keep her home.
I knew that as long as she was working with a nipple she would be able to come home sooner. I dreaded the idea that they might have to feed her thru a tube that went down to her tummy. It was so frustrating because it seemed like a nurse would learn her and then the shift change would come and the next nurse would have to learn her all over again. She was doing so well when I left her late Tuesday night. We felt really good about what was happening. I kept hope that she would be coming home in a day or two.
Wednesday April 6, 2010
We decided to head home on Tuesday night to try and get a good night sleep in our own bed. On Wednesday morning we headed back up there bright and early. I walked into the NICU and she had a little tube going into her nose. I lost every last ounce of hope I had. I didn't understand. When I left she was doing so well, then that dreaded shift change. They just couldn't get it together. That day I met with my saving grace. The speech therapist that worked at the hospital in Marquette. I will forever be in debt to this woman. She found a nipple that would work for Sylvia. It's called the Ross Nipple (http://www.abbottstore.com/content/ebiz/anstore/invt/56054e/cleftpalate_nipple_med.jpg). Sylvia was finally eating about 50 CC all on her own. It was such an awesome improvement. The Dr. in the NICU still wanted her to have 70 CC so the rest they would give her thru her little tube. 50 was such an improvement over nothing at all! The Speech Therapist taught me how to position her and how to feed her. As soon as she could eat it all and take nothing thru a tube then she would be coming home very shortly. I would be there at every feeding making sure she could eat for me. She was doing just amazing. She ate the entire 70 cc for me every time I fed her. All I had to do now was teach the nurses. They were so wonderful and took every tip I had for them and never once made me feel like "what do you know, you aren't the nurse here". By Thursday night she was taking bottles for everybody. She was even taking them overnight.
Friday April 8, 2010
I had decided to head to Marquette on my own. This was starting to take a horrible toll on Ryan and it just wasn't fair to him. I had set in my mind that I was NOT coming home without this baby. I told Derrick I would call him after every feeding and let him know how things were going. The past day or two Sylvia had this AMAZING nurse. She had asked the Dr. what was keeping me here. He had said it's basically her feeding. I got to the NICU early Friday and was SO happy when I saw the tube had been removed from her nose. She was taking every feeding on her own. I could have KISSED that nurse I was so thrilled! She then told me that the Dr. said she could go home as soon as she was taking all her feedings. I knew this was my chance to push it. Every time that Dr. walked by I had caught him and said "is it my turn yet". He would just smile and say "I'll be with you shortly". He didn't realize that his idea of shortly and my idea of shortly were two different things! Finally after I got his attention he was telling me about all the progress she had been making. I was thinking we were going home but he never actually said "you're going home now". He walked away from me, and I said "HOLD ON A MINUTE". He turns around and said to me "Here I am finally telling you that you're going home and you're holding up the discharge process". I was so thrilled I ran out of the NICU and called Derrick crying! I'm taking our baby home Derrick!
The beginning
So, I decided seeing how everybody likes to know what is going on with our daughter I would start this for family and friends.
Derrick and I were so excited to find out that we were going to have a beautiful baby girl. I had wanted one since I found out I was pregnant with Ryan, however I was just as thrilled to have a boy. The pregnancy had went as if it were taken out of a book. Perfect.
On April 2nd, I went into the hospital convinced I would be admitted and have a baby at any moment. Then they decided that my contractions were not consistent enough and sent me on my way. Well April 3rd rolled around and I couldn't sleep at all from about midnight into the early morning. The contractions were beginning to be unbearable. I still couldn't decide weather or not I wanted to go to the hospital due to the simple fact I did not want to get sent home again. After not being able to walk I finally decided I better go in. As soon as I got to the hospital they got me in a room and checked me and told me that I was 8 1/2 cm dilated. About 10 minutes later I was at 9 and about another 15 I was ready to go. I labored in the hospital for 1 hour and 30 minutes. It was quick. As soon as she was born she was taken to the warmers to get a quick check over. They then brought her back to me and told me it looked like she had a little bit of a cleft. I had absolutely NO idea what this meant. When Ryan was born they told me he was a little bit tongue tied and it turned out to be no big deal at all. I kind of was thinking it may be something like that. We enjoyed about 2 hours with her before everything started to hit me.
Around 1 p.m. on Saturday morning (2 hours after I had her) Dr. Wolfe came to talk to me after examining Sylvia. She wasn't our Dr. but she was on call for the weekend. She had tried to explain a little bit about what would be happening. She told me what a cleft was and how she believed it was formed.
Sylvia has a condition called Pierre Robin (pronounced (Row-Bin) Sequence. When a baby has Pierre Robin they believe a sequence of events had happened. Her lower jaw is very small. Therefore her tongue is very far back in her mouth, causing it to fall down her throat when she is on her back (in the beginning) because of all this the palate didn't form fully as it should have. So that's how the cleft was developed. Which is a hole in her soft palate.
I still didn't quite understand how huge this was going to get. I just thought, "ok, we'll take her home and then bring her back for surgery and she'll be good to go". Not even close. Those next few days I was there I met every specialist in the hospital you could think of. I had somebody in my room constantly. I barely even had time to eat. It seemed like all the specialists came in the morning and then all my visitors came when visiting started. At some point I had to ask the nurses if they could just take the baby and give me 5 minutes to recoop! While all this was going on I was still given hope that she would come home with me. First I was told that she would probably be able to come home on Tuesday. Then it was, "she'll probably be able to come home on Wednesday".
She was having such a hard time eating. She would take over 45 minutes to eat about a teaspoon of milk, if that. After continually losing weight, due to working so hard and burning so many calories, the next thing we were looking at was Marquette Neonatal Intensive Care Unit. This was a complete shock to me. I had never once thought there was a possibility that they would be transferring my baby to the NICU. They transferred her up there on Tuesday morning. It was probably one of the saddest days of my life.
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