So, we finally crossed one specialist off the list of many (the cardiologist) just to add another one.
So I brought Sylvia into her normal 4 month check up. Shot day, yuck! Everything has been going wonderful. Had good news from the cardiologist and everything.
Dr. was examining Sylvia, and making sure she was developing in each area as she should be. Well apparently she hasn't been. When the Dr. was trying to line up her toes with her knee they didn't match up the way she had wanted them to. Her right foot had bent in just slightly. It's not as severe as a club foot, however it is still something that needs to be corrected!
This caught me totally off guard. Out of everything going on I didn't think that I would have to deal with these issues! Apparently this issue is connected with her cleft. How? I don't know! Apparently the Dr. says she has to be missing a piece of some chromosome in her body. We haven't done this testing yet.
We did some blood work to rule out some other syndromes, and she doesn't have any of those. At 12 months she would like to do some more blood work to find out what it is that is making all these little flaws. I guess right now it isn't necessary just because we don't really NEED to know. It would just be a piece of mind.
As far as the leg issue goes, we'll be making the wonderful trip back up north! Not sure when but we need to meet with the Pediatric Orthopedist. Chances are she'll be in a brace of some sort but the Dr. seems very confident to believe that it will be corrected by the time she's 2.
I'm so curious to see what this little girl becomes. She sure is strong. I hope she does something amazing with her life. After seeing everything she's been through in her first 4 months of life, I believe she's capable of anything!
Sunday, August 15, 2010
Cardiologist....
So on Tuesday the 10th we went to Marquette (our home away from home) to meet with the pediatric cardiologist. He was such a nice Dr. Probably had to be my favorite so far! You can tell he meets with lots of kiddos and enjoys what he does.
So anyway, the ended up doing an EKG on her heart. Dr. Wolfe sent us up there to make sure that Sylvia wasn't doing any damage to her heart. She works extra hard to just breathe and Dr. was worried over time that it would cause stress on her heart. Turns out everything is perfect!
What a relief. As long as the brain is working and the heart is working, anything else can be fixed. She had a tiny bit of a murmur. He said that 1 out of 6 (6 being the loudest) it was at about a 1. He was even willing to bet she didn't have it every day. So that was good news.
He also did an Echo. There was one little flaw that turned up on that. It was called a PFO. Not really sure what it stands for! He drew me a picture to explain it to me. There's a part in your heart that is suppose to close up and 1 out of 3 people this part doesn't close. It leaves a tiny hole and her's isn't even as bad as a hole. He said her's was more of a flap. Well anyway, he said that had we not done the Echo today we would have never even discovered it. It won't be anything that gives her any problems. So I was happy to hear that it was something very common!
The best part of all was, we don't have to go back to him! Yay! He doesn't think that her breathing extra hard will cause any stress on her heart in the future! :)
So anyway, the ended up doing an EKG on her heart. Dr. Wolfe sent us up there to make sure that Sylvia wasn't doing any damage to her heart. She works extra hard to just breathe and Dr. was worried over time that it would cause stress on her heart. Turns out everything is perfect!
What a relief. As long as the brain is working and the heart is working, anything else can be fixed. She had a tiny bit of a murmur. He said that 1 out of 6 (6 being the loudest) it was at about a 1. He was even willing to bet she didn't have it every day. So that was good news.
He also did an Echo. There was one little flaw that turned up on that. It was called a PFO. Not really sure what it stands for! He drew me a picture to explain it to me. There's a part in your heart that is suppose to close up and 1 out of 3 people this part doesn't close. It leaves a tiny hole and her's isn't even as bad as a hole. He said her's was more of a flap. Well anyway, he said that had we not done the Echo today we would have never even discovered it. It won't be anything that gives her any problems. So I was happy to hear that it was something very common!
The best part of all was, we don't have to go back to him! Yay! He doesn't think that her breathing extra hard will cause any stress on her heart in the future! :)
Tuesday, August 3, 2010
Chaos!
So, after 1 screaming baby, two fighting boys, and an hour and a half later we arrived in Marquette! Today Sylvia had an appointment in the Specialty Clinic at Marquette General. She has been there once before in July.
So we get to the Specialty Clinic and right away they send us down to Audiology for a hearing test. Of course it wouldn't be a perfect appointment unless Miss Sylvia got hungry right in the beginning of it.
The Audiologist had us go into this little room so she could see how her eardrum is moving. So she's shoving this little earplug "looking" thing in her ear and the entire time Sylvia is trying to get away from her and she's saying "if she's jerky we can't complete the test". I'm thinking, well of course she's going to jerk, she's a baby! So she moved us on to the next part of the test. Basically the audiologist was in another room talking into a microphone that would come out of a speaker either on the right or the left side of her. I guess she was suppose to move her head to whichever way the sound was coming from. Well, like I said, she was a hungry little peanut and was crying. So the audiologist wasn't able to complete either part of her test. It was a good effort on her part.
After the audiologist we then went back to the Specialty Clinic. Keep in mind I had both boys with me, plus feeding her, and now pushing my empty stroller. (I remember when I was in the NICU and one of the nurses told me, "you will now have to grow eight arms". Any ideas on how that would be done would be appreciated).
They took us back in the room and weighed her and got her height. She weighs in at 13.6 pounds and I believe she was 25 3/4 of an inch or somewhere right around there. We had to meet with the Social Worker back there and some other lady who I'm still unsure of who she is! The Social Worker (who I'm not really sure how she plays into any of this, but is fabulous anyway) went and found my boys some books and puzzles to try to keep them occupied. I wish she knew my boys better, she would have came back with duct tape! Haha just kidding, I love them.
So they took us into another room where we met with the Cleft team! It was a very specialized team. We met with the plastic surgeon (who we've been meeting with this entire time), Oral surgeon, orthodontists, Ear Nose and throat Doctor, and the Speech Therapist. They had me in the middle of the room while each of them would take turns examining the baby.
As I'm sitting there, I had Ryan and Ben playing on the floor. All I could hear was "noooo benny" "share Ryan" "he hit me" "he talked to me". So I ended up excusing myself from the Drs. chatter and just separated them. I couldn't take it anymore! haha
So pretty much what I got out of this appointment was that Sylvia will have surgery in December. We'll go one more time to the surgeon in November to make sure everything is in order. She will most likely not have to have her lower mandible pushed forward. The oral surgeon would like to know who said that one child's mandible is the right size while the other's isn't. I'd like to agree with him. Her lower jaw has already moved forward a lot from birth, I think!
So then there was the ENT (Ear Nose Throat) who thinks that maybe at some point she'll need tubes in her ears. Which is fine, but she hasn't had any problems with her ears yet. I have a hard time doing this surgery for her if there really hasn't been any concern.
Next week we'll be making the jaunt again. We will be seeing the Cardiologist. Because Sylvi works so hard to breath my doctor just wants to make sure she's not doing any damage to her heart. So far everything has looked wonderful, but she wants to be sure to catch something early rather than later. That's why I love her. This entire time I've felt like she really does care about Sylvia, and she's not just another patient to get in and out for the next one.
Anyway hopefully the next appointment I can find a sitter. That way I can call my next post "Peace and Quiet" LOL....not likely! :)
So we get to the Specialty Clinic and right away they send us down to Audiology for a hearing test. Of course it wouldn't be a perfect appointment unless Miss Sylvia got hungry right in the beginning of it.
The Audiologist had us go into this little room so she could see how her eardrum is moving. So she's shoving this little earplug "looking" thing in her ear and the entire time Sylvia is trying to get away from her and she's saying "if she's jerky we can't complete the test". I'm thinking, well of course she's going to jerk, she's a baby! So she moved us on to the next part of the test. Basically the audiologist was in another room talking into a microphone that would come out of a speaker either on the right or the left side of her. I guess she was suppose to move her head to whichever way the sound was coming from. Well, like I said, she was a hungry little peanut and was crying. So the audiologist wasn't able to complete either part of her test. It was a good effort on her part.
After the audiologist we then went back to the Specialty Clinic. Keep in mind I had both boys with me, plus feeding her, and now pushing my empty stroller. (I remember when I was in the NICU and one of the nurses told me, "you will now have to grow eight arms". Any ideas on how that would be done would be appreciated).
They took us back in the room and weighed her and got her height. She weighs in at 13.6 pounds and I believe she was 25 3/4 of an inch or somewhere right around there. We had to meet with the Social Worker back there and some other lady who I'm still unsure of who she is! The Social Worker (who I'm not really sure how she plays into any of this, but is fabulous anyway) went and found my boys some books and puzzles to try to keep them occupied. I wish she knew my boys better, she would have came back with duct tape! Haha just kidding, I love them.
So they took us into another room where we met with the Cleft team! It was a very specialized team. We met with the plastic surgeon (who we've been meeting with this entire time), Oral surgeon, orthodontists, Ear Nose and throat Doctor, and the Speech Therapist. They had me in the middle of the room while each of them would take turns examining the baby.
As I'm sitting there, I had Ryan and Ben playing on the floor. All I could hear was "noooo benny" "share Ryan" "he hit me" "he talked to me". So I ended up excusing myself from the Drs. chatter and just separated them. I couldn't take it anymore! haha
So pretty much what I got out of this appointment was that Sylvia will have surgery in December. We'll go one more time to the surgeon in November to make sure everything is in order. She will most likely not have to have her lower mandible pushed forward. The oral surgeon would like to know who said that one child's mandible is the right size while the other's isn't. I'd like to agree with him. Her lower jaw has already moved forward a lot from birth, I think!
So then there was the ENT (Ear Nose Throat) who thinks that maybe at some point she'll need tubes in her ears. Which is fine, but she hasn't had any problems with her ears yet. I have a hard time doing this surgery for her if there really hasn't been any concern.
Next week we'll be making the jaunt again. We will be seeing the Cardiologist. Because Sylvi works so hard to breath my doctor just wants to make sure she's not doing any damage to her heart. So far everything has looked wonderful, but she wants to be sure to catch something early rather than later. That's why I love her. This entire time I've felt like she really does care about Sylvia, and she's not just another patient to get in and out for the next one.
Anyway hopefully the next appointment I can find a sitter. That way I can call my next post "Peace and Quiet" LOL....not likely! :)
Thursday, July 15, 2010
Appointment, appointment, appointment.
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! :)
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! :)
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!
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