It's hard to believe that one year ago today we were sitting in Grant Hospital waiting...well, I won't say patiently, but we were waiting for Catherine Therese to be born. Below is Nicole's submission of our story and experience with Catherine for a blog photo contest.
Below the story is a video birthday gift for Catherine from Annapaola, Laura Maria, and family. Thank you again for sharing our life and your talent Annapaola, again! Brava Annapaola!!!
Happy Birthday Catherine, we all love you so very much!
My 5th pregnancy progressed normally until approximately 30 weeks when I was measuring about 3 weeks smaller than I should have been. My OB did an ultrasound immediately and discovered a small baby with a “double bubble” sign. He told me that this indicated a problem with the baby’s intestines and could also indicate Down’s syndrome. He sent me over to a perinatologist to have another ultrasound that afternoon. I was shocked and scared as I called my husband and told him the news. The fear of something being wrong with the baby was always something that had been in the back of my mind with each of my pregnancies, as it probably is with most pregnant women. My husband met me there during the ultrasound and we watched silently as the technician took many pictures of our baby. Finally the doctor came and confirmed what my OB had discovered, an intestinal defect called duodenal stenosis. He told us that this was a narrowing of a part of the intestines and would require surgery shortly after birth. He also told us that with this defect there was a 30% chance that the baby would have Down’s syndrome. There was no way to know for sure with ultrasound, but an amniocentesis would provide a definitive diagnosis. He did not advise it because there was nothing to be gained except knowledge and there is a risk to the baby. We agreed and elected not to have the amnio done. We were monitored for the remainder of the pregnancy with non-stress tests twice a week and ultrasounds every two weeks. Since the baby was small they wanted to monitor the weight gain to ensure as healthy a baby as possible. We also had an echocardiogram done that showed a normal heart. I knew that Down’s syndrome babies sometimes have heart defects so we were relieved to hear this.
We had not found out the sex of our babies before birth with each of our four boys, but things were a little different this time. We wanted to name our baby and to pray for him or her by name. We learned that we were expecting a little girl and named her Catherine Therese. My husband learned about St. Catherine of Sweden and that she suffered from gastric/intestinal problems. She was the perfect person to name our little girl after and to ask prayers from. Learning that we were finally having a girl took away some of the sting of her diagnosis for me. I finally warmed up to the idea of having a child with Down’s syndrome. They were happy children and I knew that growing up with a disabled sister would be good for our boys. Of course I didn’t know for sure that she would have Down’s syndrome, and that was probably the hardest part, not knowing. The possibility of other chromosomal abnormalities was mentioned at the time she was diagnosed but it was not something that I considered seriously. I truly tried during the remainder of the pregnancy to trust in God’s will for our daughter and our family.
At 36 weeks it was decided that Catherine was no longer growing very well in utero and I was induced for IUGR(intra uterine growth retardation). The labor went more slowly than my other labors. I remember the nurse kept increasing the pitocin to strengthen my contractions. Throughout my labor Catherine’s heart rate was very strong and indicated that everything was fine. Finally I went from 3cm to 10cm in about 30 minutes and my doctor barely made it before she was born. She weighed 4lbs. 7 oz. and was 17 in. long. When she came into this world she was very blue and not moving at all or breathing. The doctor quickly cut the cord and handed her off to the neonatologist that was there for the delivery. We waited for what seemed like an eternity for her to cry. I never did hear the loud, strong cry that I heard with each of the boys, but I was somewhat relieved when I heard some small grunts and baby noises coming from her. Suddenly my OB delivered the placenta and told me in a shocked voice that the placenta had abrupted. I knew that that was potentially pretty serious for both me and for Catherine. I knew that I was fine, but then the neonatologist brought Catherine to me with a bag of oxygen near her face and I knew that she was having trouble. He let me hold her for a few minutes, long enough for all of our family to come in and see her and for her to be baptized. She was looking bluer and bluer and I finally gave her to the neonatologist. My OB commented that considering the placental abruption he expected that her heart rate would have suffered during the delivery but she had showed no signs of distress until after she was delivered. He later told me that her umbilical cord blood gas levels had been awful and that he usually sees a very low heartbeat with levels like hers, but again, her heart rate had showed no signs of trouble. This was the first sign that our little Catherine was a fighter!
The neonatologist finally came and talked to us. He said that they were going to transfer her to Children’s Hospital but they wanted to stabilize her a little more. He said that she had aspirated blood during delivery due to the placenta abruption and that she was continuing to have respiratory difficulties. We were not as shocked as we would have been if we had not been expecting problems. We knew because of her intestinal defect that she would be transferred soon after delivery. We did not expect the respiratory problems however. I did ask the neonatologist if she looked like she had Down’s syndrome and he said that he could not tell one way or the other.
Catherine was intubated and placed on a ventilator before she was transferred. I was not overly concerned at this point. I figured she would be on the ventilator for a few days to give her lungs time to heal and then everything would be fine. The next morning I received a call from a nurse practitioner who, after giving me an update, told me that Catherine was very sick and that her condition was very serious. I will never forget her words because it’s when I first became afraid Catherine might not make it. Shortly afterwards I was discharged and we left to be with Catherine. I could not stop the tears from falling as the nurse wheeled me out to the car. My arms were empty and I was afraid I would lose her.
The next week was a whirlwind of prayers and tears. Her lungs were very fragile due to the blood aspiration and she developed persistant pulmonary hypertension. She was sedated to keep her calm and quiet. All of the doctors and nurses who were working at her bedside spoke in a whisper so as not to agitate her and put more stress on her lungs. Not only were her respiratory issues a concern but there was now concern not of duodenal stenosis as previously thought, but of intestinal malrotation and a possible volvulus. A volvulus is a condition in which part of the intestines are twisted on itself causing loss of blood flow to the affected area and is considered a surgical emergency. If she had surgery, her lungs may not be able to take the stress. If she didn’t have surgery and she did have a volvulus, her intestines may die which would seriously impact her health. So with Catherine just over 24 hours old, the decision was made to risk it and do the surgery. It was one of the most difficult moments of our lives. We had to tell her goodbye and leave her in the hands of her surgeon, not knowing if she was going to be able to live through it. After a couple of hours, the surgeon came and told us that the malrotation was corrected and her intestines appeared healthy. It was not without consequence to her lungs however. She remained in very serious condition for the next several days as they debated on and off whether to place her on ECMO, a heart/lung bypass machine. This huge machine sat outside her room for a few days, and we were relieved when it was removed because it was no longer felt that she would need it. After ten days she improved enough to be extubated and taken off the ventilator and we felt we could breathe a sigh of relief.
During this time we spoke to a geneticist about the chromosome issue who took our histories and had us give blood to have our chromosomes tested. Catherine had blood drawn after delivery to test her chromosomes, but we had to wait a few days for the results to come back. I had looked at my daughter while she was so sick and I thought that she looked different. Maybe it was her eyes, maybe it was just me, but I thought that the results would come back abnormal. The geneticist also examined her, but Catherine was so swollen with fluid from the surgery and from being so sick that it was difficult to tell if there were physical abnormalities. As her swelling subsided I did not think she looked different anymore, only the most beautiful baby I had ever seen!
About a week after her delivery we learned that Catherine did not have Down’s syndrome but that there was something else going on with her chromosomes. We learned that one of her 13 chromosomes was attached to one of her X chromosomes and that where they were joined together there was some missing genetic information. The geneticist was unable to tell us what this would mean for Catherine only that her disorder was very rare and she couldn’t find any reference in the literature to her chromosomal abnormality. Honestly this information did not shake us or shatter us. After everything Catherine had been through we were just so glad she was alive! We were so glad that our little girl was with us and getting better every day. We were also not terribly shocked because we had been prepared during the pregnancy for the possibility of Down’s syndrome. It was a little frustrating not knowing what the future was going to look like for her. I almost wished she had Down’s syndrome because at least there was more information on what her life might be like. I didn’t understand why there wasn’t more information for us about her condition. Hadn’t they just finished the human genome project? Didn’t they know what each gene does and couldn’t they just tell us which ones she was missing and then we would know how this would affect her? I soon found out it doesn’t work that way and that genes are more complicated than that because they interact with all the other genes in ways we don’t fully understand. The geneticist was very optimistic because Catherine did not seem to have very many serious health issues aside from her respiratory issue, which was not related to her chromosome disorder, and the intestinal defect. She did say that missing genetic information usually means at least developmental delays and learning issues.
A few weeks after the first surgery and after attempting feeds she began vomiting. It was discovered that she did indeed have duodenal stenosis as was initially diagnosed and she underwent another surgery to repair it. She spent 4 months in the NICU with feeding issues, reflux, and slow weight gain. It felt like 4 years. The progress she would make would take so long and then there would be another setback. It was very frustrating at times. We received wonderful support from all of the doctors, nurses and nurse practitioners who were involved with her care. My husband was off of work for the summer so he was able to watch our boys while I visited Catherine every day and worked with her on breastfeeding. She was not able to tolerate large amounts of milk at one time, so she finally had a g-tube placed so that she could receive her feeds at a slower rate at night while breastfeeding during the day. Since she’s been discharged she’s been diagnosed with a mild hearing loss and now wears hearing aids (pink ones of course!). She also had surgery to correct strabismus (crossed-eyes). She will turn one on May 2, I can’t believe everything that has happened in just one year! She receives physical, occupational, and speech therapies. She is very close to rolling over and is working on sitting and on gaining greater head control. We have begun feeding her solids but she is not very interested. She continues to make progress, but it is slow. I have learned to appreciate all of the milestones much greater this time around. We cheer her and tell her how proud we are of her when she would pull her eye patch off or when she pulls her hearing aids out!
Catherine is such a joy to us. We are so lucky to be her parents. Her four older brothers all enjoy holding her and talking to her and giving her kisses. If we are having a bad day all we need to do is look at Catherine and she smiles at us with her whole body and lights up the room. We know God has a plan for her and for our family. I am learning to trust in that plan even though I don’t know how it will all turn out. When I look at the picture of her chromosomes that the geneticist gave us, I can’t help but be in awe of how God made us, and at how complex and unique we all are. I can’t believe that Catherine’s chromosomal arrangement is an accident. I believe that it’s evidence of God’s unique plan for Catherine and for each one of us. We wouldn’t change a thing about her!
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