I was asked to start a blog way back when Bella was born, I didn't have time back then. I'm not sure if I have time now, but I think it might be therapeutic to write everything down. So this will be my honest and open day to day life with Bella.
Here is background information for the first year of Bella's life.
*Birth*
Bella was born on 9-12-07. It was an uncomplicated pregnancy, my biggest complaint was how swelled up my feet and ankles were towards the end. I went in for my 36 week appointment and because I was measuring small, they did an ultrasound. They found that Bella had an approximate weight of 4lbs 6oz, and decided to put me on bed rest for IUGR (in-uterine growth restrictions). They also d
ecided to induce a week prior to my due date. So on the evening of 9-11 off we went to the hospital. The next day proceeded to be a long day of laboring and around 8pm that evening I was finally ready to push her out. They brought in NICU nurses just in case, and I remember thinking to myself that it was unnecessary and she would come out just fine. Well I was wrong. After 30 minutes of pushing, Bella was born, weighing 5lbs 0oz and 18inches long. She came into this world and as most mother's fear, didn't really cry. The NICU nurses were busy working on her, and let my husband Jesse and I hold her for 30 seconds before they rushed her into the NICU. We were later informed that she needed to be immediately transferred to Children's Mercy.
*Our first night as parents*
As the doctors and nurses were prepping Bella to be moved to Children's Mercy, one of the pediatricians came to talk to us. She informed us that Bella had some signs that pointed to the fact that she probably had a chromosomal abnormality. They were unsure which one, and in fact thought it was probably a partial problem. They stated that she was born with a cleft palate, recessed chin, low and rotated ears, extra skin on her neck, a more rounded forehead, extra fat on her feet, and she was having breathing difficulties and possibly heart difficulties. This was a lot of information for my husband and I to take in. I remember thinking that this was unreal and that everything would still come out normal. In the 30 seconds I had seen her, I didn't remember seeing anything too abnormal. My only concern had been how cone shaped her head was from the birthing process, how had I missed all these other signs.
That night my husband and I went to bed in the hospital, all alone. Here I had gone through the biggest event in my life, and I had no baby to show for any of the hard work. I didn't feel like a mother.
*The next day*
The next day I was allowed early discharge so we could see our daughter. We had to go back home to change and pick up a few things, plus family members who had been anxiously awaiting Bella's arrival. I felt so horrible that my newborn was all alone in some big hospital that we had never been too. I couldn't make it there fast enough.
We arrived at the hospital, to what would be our routine for the next 3 weeks. And here is where I finally got a good look at my daughter for the first time. It's hard for anyone to admit that their child is different. And looking at her here, I knew she was different. The doctors were running millions of tests and at this point had no answers for us. But she was stable. She had been intibated, and had IV's in her belly button and hands, she was also on blood pressure medication, and needed a catheter.
*Diagnosis*
The original possible diagnosis given to us was problems with her 13th or 18th chromosomes. This was a trisomy 13 or trisomy 18. After given this information we ran to the Internet in the hospital and did some research. We found that both of these diagnosis gave the infants a shorten life span, normally around 2 years. These were very sick newborns, in fact most dies in-utero. I remember sitting with Jesse in the cafeteria and discussing these possible outcomes. Could our daughter really have these "things" and would she really only live to be a couple years old. What do you really do with that information. Not to mention the words attached the diagnosis "severe mental retardation". What kind of cruel punishment was this, and what had we done to deserve it?
I believe it was the next day the initial labs came back and Bella in fact did not have trisomy 13 or trisomy 18. So we would have to wait another week, for them to do a full blown blood test to tell us exactly what she had.
*Doctors*
In the meantime she was continuing to get the test done, and we talked with rounds and rounds of doctors and specialists. ENT doctors to discuss the recessed chin and the possibility and she would need surgery to extract the chin so she could breathe better (this was later ruled out). Also to talk with them about her failing of newborn hearing screens. Eye tests done, because even after a couple of days, she had not opened her eyes yet. Would she be blind? The opthomoligists were able to do the testing and found that she had normal eye structure. I believe it might have been around day 4 or 5 when she finally started peaking out with her eyes. We also had plastic surgeons come around to discuss the cleft palate surgery that would be performed around 1 year. Heart surgeons to discuss the holes in her heart (a PDA and PFO)...and on and on.
Other interesting notes were the social workers who would screen you for questions and backgrounds. I always felt like I was being questioned as to what had I done to make my child be born like this? I even had family that would ask similar questions, did I drink, do drugs, etc? The answer is of course no, I did none of this.
4 days after Bella was born we were finally able to hold her.
*Real Diagnosis*
Most days we stayed at the hospital during the day, and then would come home at night. I still have guilt about leaving my newborn all alone, every night, for 3 weeks. I have to believe that she doesn't remember it, and really there was no place for us to stay. It was about a week after she was born that the doctors called us one night at home to tell us her diagnosis. She was born with a partial trisomy of chromosome 11 that had translocated onto her 13th chromosome, which also had a partial deletion of itself. The next day the geneticist met with us, to discuss the diagnosis.
*What this means*
Well no one knows. In fact her diagnosis is the first of it's kind. There are some children across the globe (maybe 500 known cases) that have pieces of their 13th chromosome missing, and even less that might have a partial piece of 11 duplicated. But no child has been found to have both pieces. We were told that she would probably stay small, have feeding issues, developmental delays, and mild to severe retardation. Only time would tell. Which is pretty much the same motto we have today. All in all this was still a pretty devastating diagnosis. In fact I can say that most times I am still in denial over it.
*The next 3 weeks*
Bella spent a total of 3 long weeks in the NICU. We had to master feeding and make sure she could maintain body temperature and gain weight before she was able to come home. Feeding her was a major issue. Bella was never able to breast feed, being that she couldn't produce the sucking needed to master this. I was always busy pumping to give her milk. Initially she took this milk through and NG tube (feeding tube through the nose). We then began working with her on a special bottle that allowed us to squeeze the nipple so she could get milk. When we first attempted we were lucky if she took a couple of milliliters (less than 1/10 of an ounce). By the time we took her home, I believe she might have been taking about 1/3 of an ounce by bottle and the rest by feeding tube. She also got fitted for an obturator, which looks like a retainer and fits into the hole in her mouth, so she can create her own suction.
*Finally at home*
Here is background information for the first year of Bella's life.
*Birth*
Bella was born on 9-12-07. It was an uncomplicated pregnancy, my biggest complaint was how swelled up my feet and ankles were towards the end. I went in for my 36 week appointment and because I was measuring small, they did an ultrasound. They found that Bella had an approximate weight of 4lbs 6oz, and decided to put me on bed rest for IUGR (in-uterine growth restrictions). They also d
ecided to induce a week prior to my due date. So on the evening of 9-11 off we went to the hospital. The next day proceeded to be a long day of laboring and around 8pm that evening I was finally ready to push her out. They brought in NICU nurses just in case, and I remember thinking to myself that it was unnecessary and she would come out just fine. Well I was wrong. After 30 minutes of pushing, Bella was born, weighing 5lbs 0oz and 18inches long. She came into this world and as most mother's fear, didn't really cry. The NICU nurses were busy working on her, and let my husband Jesse and I hold her for 30 seconds before they rushed her into the NICU. We were later informed that she needed to be immediately transferred to Children's Mercy.*Our first night as parents*
As the doctors and nurses were prepping Bella to be moved to Children's Mercy, one of the pediatricians came to talk to us. She informed us that Bella had some signs that pointed to the fact that she probably had a chromosomal abnormality. They were unsure which one, and in fact thought it was probably a partial problem. They stated that she was born with a cleft palate, recessed chin, low and rotated ears, extra skin on her neck, a more rounded forehead, extra fat on her feet, and she was having breathing difficulties and possibly heart difficulties. This was a lot of information for my husband and I to take in. I remember thinking that this was unreal and that everything would still come out normal. In the 30 seconds I had seen her, I didn't remember seeing anything too abnormal. My only concern had been how cone shaped her head was from the birthing process, how had I missed all these other signs.
That night my husband and I went to bed in the hospital, all alone. Here I had gone through the biggest event in my life, and I had no baby to show for any of the hard work. I didn't feel like a mother.
*The next day*
The next day I was allowed early discharge so we could see our daughter. We had to go back home to change and pick up a few things, plus family members who had been anxiously awaiting Bella's arrival. I felt so horrible that my newborn was all alone in some big hospital that we had never been too. I couldn't make it there fast enough.We arrived at the hospital, to what would be our routine for the next 3 weeks. And here is where I finally got a good look at my daughter for the first time. It's hard for anyone to admit that their child is different. And looking at her here, I knew she was different. The doctors were running millions of tests and at this point had no answers for us. But she was stable. She had been intibated, and had IV's in her belly button and hands, she was also on blood pressure medication, and needed a catheter.
*Diagnosis*
The original possible diagnosis given to us was problems with her 13th or 18th chromosomes. This was a trisomy 13 or trisomy 18. After given this information we ran to the Internet in the hospital and did some research. We found that both of these diagnosis gave the infants a shorten life span, normally around 2 years. These were very sick newborns, in fact most dies in-utero. I remember sitting with Jesse in the cafeteria and discussing these possible outcomes. Could our daughter really have these "things" and would she really only live to be a couple years old. What do you really do with that information. Not to mention the words attached the diagnosis "severe mental retardation". What kind of cruel punishment was this, and what had we done to deserve it?
I believe it was the next day the initial labs came back and Bella in fact did not have trisomy 13 or trisomy 18. So we would have to wait another week, for them to do a full blown blood test to tell us exactly what she had.
*Doctors*
In the meantime she was continuing to get the test done, and we talked with rounds and rounds of doctors and specialists. ENT doctors to discuss the recessed chin and the possibility and she would need surgery to extract the chin so she could breathe better (this was later ruled out). Also to talk with them about her failing of newborn hearing screens. Eye tests done, because even after a couple of days, she had not opened her eyes yet. Would she be blind? The opthomoligists were able to do the testing and found that she had normal eye structure. I believe it might have been around day 4 or 5 when she finally started peaking out with her eyes. We also had plastic surgeons come around to discuss the cleft palate surgery that would be performed around 1 year. Heart surgeons to discuss the holes in her heart (a PDA and PFO)...and on and on.
Other interesting notes were the social workers who would screen you for questions and backgrounds. I always felt like I was being questioned as to what had I done to make my child be born like this? I even had family that would ask similar questions, did I drink, do drugs, etc? The answer is of course no, I did none of this.
4 days after Bella was born we were finally able to hold her.
*Real Diagnosis*
Most days we stayed at the hospital during the day, and then would come home at night. I still have guilt about leaving my newborn all alone, every night, for 3 weeks. I have to believe that she doesn't remember it, and really there was no place for us to stay. It was about a week after she was born that the doctors called us one night at home to tell us her diagnosis. She was born with a partial trisomy of chromosome 11 that had translocated onto her 13th chromosome, which also had a partial deletion of itself. The next day the geneticist met with us, to discuss the diagnosis.
*What this means*
Well no one knows. In fact her diagnosis is the first of it's kind. There are some children across the globe (maybe 500 known cases) that have pieces of their 13th chromosome missing, and even less that might have a partial piece of 11 duplicated. But no child has been found to have both pieces. We were told that she would probably stay small, have feeding issues, developmental delays, and mild to severe retardation. Only time would tell. Which is pretty much the same motto we have today. All in all this was still a pretty devastating diagnosis. In fact I can say that most times I am still in denial over it.
*The next 3 weeks*
Bella spent a total of 3 long weeks in the NICU. We had to master feeding and make sure she could maintain body temperature and gain weight before she was able to come home. Feeding her was a major issue. Bella was never able to breast feed, being that she couldn't produce the sucking needed to master this. I was always busy pumping to give her milk. Initially she took this milk through and NG tube (feeding tube through the nose). We then began working with her on a special bottle that allowed us to squeeze the nipple so she could get milk. When we first attempted we were lucky if she took a couple of milliliters (less than 1/10 of an ounce). By the time we took her home, I believe she might have been taking about 1/3 of an ounce by bottle and the rest by feeding tube. She also got fitted for an obturator, which looks like a retainer and fits into the hole in her mouth, so she can create her own suction.
*Finally at home*
Hi there. My name is Alison, I am British and I live in France.
ReplyDeleteI stumbled across your blog today and read it with great interest. Your story reminded me so much of my own, in particular those first weeks, when all those enormous questions remain unanswered.
My little girl was diagnosed at birth with the deletion of the tip of the long arm of chromosome 11. Despite my initial worries and refusal to accept it, today my Princess Abigail is nothing but a pure blessing. I can see that the same can be said for Bella. She suits her name so well : the Italian word for Beautiful Girl.
I look forward to reading more about Bella as she grows up!
Take care
Alison
www.thebernardbunch.blogspot.com