Things went seemingly well, until October when I had my second ultrasound, and the tech told me that she couldn't get a clear view of the heart. As if that didn't stress me out enough, the doctor later told me she actually found an ecogenic foci on the heart which would need to be reassessed. An ecogenic foci is a "soft marker" for Down's Syndrome. My doctor, knowing how nervous I was, sent me to Boston to see a specialist. I saw the specialist a few days later, and he saw enlarged kidneys in addition to the ecogenic foci. He assured me that he felt that the baby (who he said was a GIRL!) was perfectly healthy, but my chances of a baby with Down's just went from 1 in 2500 based on bloodwork, to 1 in 450. My OB/GYN said that an amnio would determine Down's or not, but the risk of an amnio was much greater than my risk of a baby with Down's. I knew I wouldnt terminate the pregnancy regardless, so we decided to take both doctors advice and didn't get the amnio. For the remainder of the pregnancy I did have a horrible fear that something may be wrong.
On February 24, 2010 at 2:09 PM, a beautiful baby girl, Olivia Dianne Kelly entered the world via Cesarean on a rainy, cold day. She was perfect. 7 lbs, 14 oz and 20.5 inches long. AMAZING in every sense of the word. When I was able to hold her I literally wept tears of pure joy because this little girl was finally here, and healthy! I kept staring at her checking for signs of Downs. There were none. And so we went home....and life began as a family of 5.
My husband took a job in Illinois 3 weeks after Olivia was born and it was up to me to take care of her and my other children, Christian and Julia.
And so it began. I have always been an obsessive mother. I check my children to make sure they are breathing several times a night. One night, I didn't like the way Olivia was breathing and took her to the ER. They said it was a cold. Around 2 months old, Olivia started vomiting every meal. We both went through about 6 outfits a day. We discovered Olivia was allergic to milk. Now the easiest solution to that would be to put her on formula. Unfortunately Olivia hated bottles. And after 12 hours of trying to bottle feed her, and both of us in tears, I decided I would just eliminate all dairy from my diet until she either outgrew the allergy or decided she would take a bottle.
A few months went by, and by May I knew something was off. I brought her in to the doctor and they said it was broncholitis. Two days later we were back because her breathing was distressed. The doctor said it was an ear infection and that maybe her acid reflux was contributing to the breathing issue. So off we went with some antibiotics
By July, Olivia's breathing was awful. She wheezed constantly. She coughed a lot. The doctor tried a nebulizer, that didn't work. He then tried steroids, which I thought worked, but really was just hoping they did. My days became filled with nebulizer treatments and antibiotics for the repeated ear infections. We were at the pediatrician at least once a week. Each appointment he would say her wheezing was getting worse than the last visit. Her lungs sounded awful. I could feel the congestion in her lungs when I held her. She had a chest X in late July that showed "reactive airway disease" which is really a blanket term for when they don't know why there is any sort of breathing issue. He just kept trying and trying. Eventually the doctor said we would have to go to Children's and see a pulmonologist.
The pulmonologist (who has since been fired and replaced) ordered an upper GI to assess reflux. Olivia showed no signs of reflux on the GI. In the meantime, we had set up appointments with Otolaryngology to assess her 4 ear infections in 3 months and Gastroenterology to assess her milk allergy. One week we were at Children's 3 days in a row.
The pulmonologist then said we needed a sweat test for Cystic Fibrosis. This doctor liked to stress me out. The test came back inconclusive because Olivia didn't sweat enough. That was a very bad day. Next the doctor wanted to do a swallow study, or modified barium swallow. We actually had an argument about her doing unnecessary testing on my 5 month old baby but I relented and decided we would have it done. The doctor said she really didn't think Olivia was aspirating, but the modified barium swallow would rule it out completely.
So on August 23rd, we went in for this swallow study. My mother in law came with me. I planned on another appointment in which i would leave with no answers. I could not have been more wrong. The test began and it was very difficult for Olivia because she had not used a cup or bottle prior. After a few minutes, she finally got a drink and I saw on the screen the liquid go down, and then right back up. And that's when the team of medical professionals behind the glass exclaimed "She aspirated!" I had no idea what any of this really meant at that time. They tested a different consistency and again I heard "She aspirated". There were probably 5 people in the room with me, and 4 behind the glass watching the video. They told me they had to call the doctor for directions. Still none of this was sinking in. I thought, OK, they know what the issue is, they will be able to fix it. I kept saying "They can fix this right?" And no one would answer me. I started to cry and the nurses comforted me but then escorted me to a waiting area while they waited for the doctor to call back. After what felt like an absolute eternity they came back and said Olivia had to be admitted IMMEDIATELY because she could not ingest any liquids safely and would need to have a Naso-gastric (NG) tube placed. Bear in mind, my husband is 1200 miles away. Thank GOD for my mother in law who stayed with me, and even stayed while they inserted the tube and i went home to pack a bag of clothes for our week long stay. I had NO idea this was going to happen. Before i knew it, Olivia was on a feeding tube, had a whole team of doctors in and out of the room, and my sweet innocent baby girl was "broken" and I didn't know how to fix her. I spent the whole night crying to the nurses. They all sat and listened to me and helped me through. After a week of teaching me how to care for a naso gastric tube, we were discharged to home care, where we would have a visiting nurse a few times a week.
I remember walking into my house that had just got our shipment of medical supplies. Everything was a mess. There were syringes, tubes, feeding pumps, IV poles, IV bags, formula, everywhere. It was a disaster. Olivia also decided she hated the tube. Who wouldn't? So she would pull it out every chance she got. And that was quite often. I said that i wouldn't be able to insert it myself no matter what they told me, but after the sixth call to the visiting nurse to replace it, I realized I had no choice but to figure it out. Inserting a naso gastric tube is PURE TORTURE. To have to hold down your screaming child, wrapped in a blanket to keep her from fighting, and then putting a tube in her nose down into her stomach is enough to make anyone vomit. And then, you have to check the placement of the tube over and over again to make sure it isn't placed in the lungs, which of course, would be an emergency. But I did it, and I did it again and again. And I re taped the tube to her face again and again, and as much as she hated it, I knew it was saving her lungs, and her life.
In September, Olivia had ear tubes placed as well as a triple scope, of her lungs, stomach and throat. They found significant signs of aspiration, so getting off the ng tube was a very small possibility. They also discovered Olivia has a very mild Type 1 laryngeal cleft, which could or could not be the reason she aspirates. Laryngeal clefts only affect 1 in every 10000-20000 births, and is considered a rare congenital disease.
By mid September I couldn't deal with this awful NG tube anymore and the doctor said it was time for a gtube. This would require another trip to the operating room, just 10 days after the first surgery. At first, I was very sad that my daughter would need yet another surgery, but knew in the end it was best for her. No more pulling out the tube, no more stares from rude strangers. She got the Gtube and was discharged the next day being dubbed a "rock star" patient by the nurses for being so happy.
Things were pretty quiet over the fall and the holidays. Olivia was doing well, gaining weight and using the Gtube well. She then was able to advance to thickened liquids by mouth which was a huge victory for her. The doctors were even discussing the possibility of removing the tube all together in the Spring. Unfortunately, Olivia failed her modified barium swallow test again on January 24th. She is still unable to drink thin liquids. Namely, things as basic as water. As of right now, we are waiting to see yet another specialist to see if a surgical repair of her laryngeal cleft is in order. The surgery is complex, so the doctors don't want to rush it. Our next stop is the Center for Digestive Disorders at Children's Hospital Boston. http://www.childrenshospital.org/clinicalservices/Site2024/mainpageS2024P0.html Until then, we will keep taking it day by day.
Everyone says that they don't know how I do it, how I hold it all together. The answer is really quite simple, I have no other choice.
