Nicole's Birth

After a typical pregnancy, including a sonogram which detected no anomolies, Annette's labor started about 10:00 pm on Tuesday, the 23rd. At about 3:00 am on Wednesday, we started to prepare for our trip to Millard Fillmore Suburban Hospital. At about 4:45 am Annette was admitted and our journey began.

Nicole was born on Wednesday, November 24, 1993 at 9:27 pm. She weighed in at 6 lbs 10 ozs. Initially, the most obvious thing wrong was the fact that the middle three fingers on both of her hands were fused together. In addition, her little fingers were webbed with skin. This was quite a shock since during the sonogram the technician counted ten fingers and ten toes. Immediately, other nurses were brought into the birthing room to evaluate Nicole. Annette's doctor, nor the nurses, had any idea what was wrong with Nicole. All they could tell us was that her fingers and toes were webbed, and she had an enlarged front fontanel (soft spot in the skull). This was all occuring around 10:30pm Wednesday evening. At about 2:00 am Thursday, Nicole was transferred from Millard Fillmore Suburban, to The Children's Hospital of Buffalo (our home away from home).

The next day, Thanksgiving Day, Annette and I spent the day in Millard Fillmore, while Nicole spent the day at Children's. We were contacted by our Geneticist, Pediatrician and Annette's OB/GYN. Each physician tried to tell us whatever they could about the syndrome and provided a couple of pages copied from a medical text. By early morning, all we knew was Nicole would require several surgeries, and could have many complications due to Aperts.
We then began the process of calling friends and relatives to announce the birth of our daughter. It sure was awkward to try to explain to people about a syndrome we knew so little about. Everyone had questions, many of which we could not answer. We still have plenty of those. The next morning, when Annette was released from the hospital, we made our first (of many) trip to the Intensive Care Nursery (ICN) at Children's Hospital of Buffalo. For approximately 2 weeks, Nicole stayed in the ICN. What follows are the major events of each of those days.

11/26/93

We went to Children's Hospital to the Intensive Care Nursery to see Nicole this afternoon, after Annette got out of the hospital. Nicole was stable, but not taking any food via mouth yet. Today, her Mom and Dad got to hold her for the first time! It was a little awkward with all the wires and the feeding tude, but it was great to hold her!

11/27/93

We visited with Nicole again today. Her sugar was good, she was urinating OK and her vital signs were stable. She weighed 6lbs, 10ozs (down 4 ozs). They tried to feed her again today and retrieved a small amount of clear liquid from her stomach, but there was no more blood in it as there had been before this. She was being nourished and given antibiotics via IV. They took X-rays of her hands and feet today. At midnight tonight, we got a call from the Hospital. They told us that Nicole had developed an apnea (stopped breathing for short periods) and had been put on a ventilator.

11/28/93

Today they told us that they had attempted to feed Nicole last night. She had kept it down, but her stomach didn't digest it. They didn't know why. They took X-rays of her digestive tract, and everything looked OK.

11/29/93

They're going to attempt to remove the ventilator tube tomorrow. They have to wait until there is an ENT (ear, nose, throat doctor) present so they can scope Nicole's nasal passages and throat to see if there are any obstructions or anything else which may have caused the apnea. She seemed to tolerate some formula today. She was given small amounts (about 5 cc's at a time). About 3-5 cc's of mucus/formula came out when they drew it back. Her vital signs were stable. She weighed 6lbs, 8ozs (still going down).

11/30/93

Nicole really hasn't been tolerating the formula yet. They gave her an upper GI (gastrointestinal) series today to see if there is something which keeps her from eating. The ventilator tube was removed today. Now there is just a hood over the crib which supplies her with a cool mist (cool, moist air is easier to breathe). The ENT said everything looked OK and there was no visible reason for the apnea. Nicole does, however, have narrow nasal passages, especially on the right side. The initial indications from the upper GI were that everything is OK.

12/1/93

Nicole stayed off the ventilator all night. That was a big relief for us! Today they took her for a CT Scan to look at her nasal passages. She got 10 cc's of formula, and her bowels were filled with Berium from the upper GI series, which was a good sign. At 3:30pm, her nurse for the day (Dee Dee) said that she tolerated the 10 cc's of formula they gave her at 11:30am and they gave her another 10 cc's. YES!!!

12/2/93

Nicole had her feeding tube removed today! She ate from a bottle for the first time in her life. Annette was able to feed her for the first time today (more than a week after Nicole was born). Mom was thrilled! The Opthamologist examined Nicole and said that everything looked good for a child her age.

12/3/93

The hospital called today and told us that if we could aquire an apnea monitor and get trained to use it, we could take Nicole home on Monday (12/5). The Neurosurgeons office called and explained that we had to watch for the signs of fluid buildup on her brain (Hydrocephalus). She was doing well!. No more tubes, just the heart, respiration and ground leads were attached to her. Both her mom and dad fed her tonight. She rested comfortably and was very alert during the times she was awake. Doctor Molnar (a resident) told us that they wanted to perform a sleep study on her and the only time they could do it was Monday night, so we couldn't bring Nicole home until Tuesday.

12/4/93

We went to visit Nicole and she slept the whole two hours we were there. She's been sleeping pretty well, 3-4 hours at a time. She's now taking 2-3 ounces of formula at a feeding.

12/5/93

Nicole is doing better each day! We're making preparations for her to come home on Tuesday (tomorrow). Her Dad changed her diaper for the first time today. She's sure extremely content whenever she's being held. It's gonna be strange not to have to go to the hospital each day. Although were anxious to bring Nicole home, there's a sense of security associated with her being in the hospital. We know that if anything goes wrong, they can handle it immediately. This is an exciting day, and sleep is not something that comes easily.

12/6/93

This morning Mom, Dad and Annette's sister (aunt Rose Ann) went to Children's Hospital Home Care for training on an apnea monitor. We had to learn infant CPR in case Nicole stopped breathing and had to learn how to attach the monitor leads and what to do in case the alarm went off. Today, Nicole came home!!!