Excerpt of Chapter One

* The Pain of Discovery *

Drew was born March 25, 2001. He was only 5 lbs. 3 oz. even though I was almost 38 weeks when I had him. We discovered after delivery that the placenta was unusually small- dangerously small. His umbilical cord was so short that I couldn’t put him on my stomach after delivery. No TLC’s “The Baby Story” moment for me. I had to hold him dangling angrily between my legs. Boy, that kid couldn’t get a break from day one!
We found out on our detailed ultra sound at 22 or so weeks that Drew had multiple birth defects. Apparently, our ultrasound tech was near getting her ultrasound sainthood, because she even noticed Drew’s heart defect. All fetuses have a hole between the top two chambers of their heart until just before or shortly after birth. She amazingly noticed that the hole in Drew’s heart was different than “normal” (a word I have come to see in a different light).
When I say ‘we found out’ I really mean ‘I found out’. That’s right- your worst nightmare. I was alone. This was the first visit that my husband Ryan couldn’t come to without rearranging his work schedule. I told him not to worry about it . (How brave am I?) You see, we had had an ultrasound by the Certified Nurse Midwife every appointment so far and she hadn’t seen anything that worried her. I was confident that everything was going to be “normal” (there’s that word again). It was eerie, really. I was lying there, watching the ultrasound on the monitor. I was a nurse, myself, but with little experience in ultrasounds (that was soon to change). I started to feel very light-headed. This is not uncommon for pregnant women lying on their back. It had never happened to me before. I remember feeling a sudden attack of panic, almost. I should have known. I think the ultrasound tech took that moment to tactfully do what she knew she had to do. She left to get me some juice and some one to take my vital signs. She returned with a doctor. My midwife had that day off. I really should have known that something was going to happen. They spoke cryptically for a couple seconds and then after a few utterances of “Oh, I see it,” and “Okay, I agree with you,” the doctor told me that my baby had a cleft lip and most likely a cleft palate and that he probably had a heart defect too. Everything from here turns into what I could later term as a “Matrix moment”. It seemed like sounds were almost distorted and that people were moving in irregular fashion. I remember sitting in a room I had never been in before- I think it was his office- as they got me an appointment with the perinatologist. I navigated my way downstairs and out the door. As soon as I hit the frigid December air, my insides crumpled together and I started bawling! I couldn’t hold it in anymore. I remember being so shocked by the ferocity and the duration of my tears. ‘Pull it together,’ I kept thinking. There was just one problem… I couldn’t.
I knew Ryan couldn’t take phone calls at work. We had only been married for seven months, so my in-laws weren’t even on my “Help Radar” in times of extreme trauma when I wasn’t thinking clearly. I also knew that my family had started gathering for Christmas at my parents’ house and someone had to be there. I called my parents’ house on my cell phone and my older sister answered. She was pregnant with her second child. I don’t know if this made it harder for me or not, or if it was just the familiar voice, but I started crying with increased intensity. Caller ID had never been more valuable. I am not sure what my sister would have thought of the psycho on the other end of the phone call had she not known it was me. She asked me if something was wrong with the baby (very astute) and I made some grunt of acknowledgement, I finally was able to utter some kind of explanation one word at a time. After speaking to my mom, I drove myself home (in peril of death the entire drive as I was crying so hard I could hardly see, let alone think or reason!). I dashed to the computer and immediately used Instant Messenger to tell my husband what had happened. He came home straightway and we pack and left immediately for my parents’ house (our original plan was to leave the next night).

*And then there’s… *

Feedings were a nightmare. I was using a breast pump to get breast milk and then we would feed that to him. That lasted for seven and a half months before I started losing my milk supply. Between working full time and medical appointments and all the care Drew needed- when did I think I had time to pump?! Drew had tube feedings for about 5 weeks. At that time I was going back to work and Ryan was really uncomfortable with doing the tube feedings. Drew had gotten to the point where he could take an ounce and a half in about 20 minutes with his special bottle, so we let the tube feedings go. In hindsight, that was probably a mistake. However, he was soon taking two ounces in 20-30 minutes and slowly increasing his feedings to a point where we felt really comfortable doing only bottle feedings. Drew woke up three times at night for feedings as he could only take two or three ounces at a time. Drew was still waking up at least once a night for a feeding at 19 months. I know he was hungry because I could feel his empty little stomach rumbling under my fingers when I’d get him out of bed!
Ear infections are common in kids with cleft palates. There is a medical explanation as to why, but that is not the point of this book and I am sure most of you couldn’t care less! Drew had tubes put in his ears when he was 3 months old at his first surgery. We had anticipated his first surgery would be cleft related, but Drew wanted to do things the hard way! At 6 weeks of age (about 3 days after I went back to work) Drew developed bilateral inguinal hernias. They had to be repaired first. Sigh. At least we could get the tubes in his ears at the same time before he started getting ear infections- HA! The boy had his first ear infection AFTER we put the tubes in! The ENT did say that there was a lot of thick fluid behind his ear drums and that can make it difficult for the child to hear correctly, so I always try to console myself that way. Drew had more ear infections than I can count after that first one. His pediatrician finally decided to culture the drainage to see what we were fighting and why it wasn’t going away. The results came back as staph. Those of you who are non-medical people, think gangrene. We cultured it a short time later and it came back strep. I had the joy of cleaning out the copious drainage one day only to smell bread raising. I wasn’t making bread. We cultured it again- yeast. The joys of motherhood are magnified tenfold with special needs kids! I want to meet the mother who can say she has put Lotramin in her child’s ears. I have!
Early Intervention services are a gift and a curse (I am taking that from one of my favorite TV shows, ‘Monk’). They are provided by the government in most cases. Don’t we all love and cherish the government? I was so pleased to be getting help for Drew. They sent out a speech professional to help him with speech therapy and an early intervention specialist to help with the developmental delays that had been identified through assessment. He also attended a playgroup. How fabulous is that?! As our first child, he really had no other children to interact with and learn from. Shortly after we started using the services, the government decided that families should pay for these services based on their ability to pay. Just like the government! Don’t they realize that most families with special needs kids don’t have “extra” income floating around? And those that do should be able to focus it on private services. I have mixed feelings about this, but in general, I feel that families with special needs kids DO NOT GET A BREAK! Early Intervention could be one place that we could give it to them!
Surgery- this is something I am sure many parents face at least once in their parenting career. We have done surgery 12 times so far with Drew. At the time that I wrote this book, Drew was 6 years old. Most of his surgeries went as we had expected. His first surgery, he was EXTREMEMLY sleepy. We spent almost 6 hours in post-op trying to get him to take two ounces. He wouldn’t wake up! His second surgery, in speaking to the anesthesiologist, we decided that it was the narcotics that did this. So, they went light on the narcotics. They give kids narcotics after surgery not only to manage pain, but to manage a less known side effect. Children respond negatively to anesthesia. I like to think of it as waking the sleeping bear by putting the wakeful child to sleep. Drew came out of his second surgery screaming! They gave him a half dose of narcotics and he calmed down. There were only two other times that surgery didn’t end up as we expected. The first was the tonsillectomy. Eight days after the surgery Drew’s scabs fell off and he started to hemorrhage. Let’s all think back to what I said about Drew in the very first paragraph. This kid can’t get a break! The only reason I knew he was hemorrhaging is because he had a small amount of blood around one corner of his lip. Ryan asked me if he had fallen as we were getting in the van to go to Wal-Mart to get diapers. We called the ENT resident who told us to come to the ER at the children’s hospital where the procedure was done and to tell them when we got there to page him. In a blur of activity after that, they determined that Drew was still actively hemorrhaging and needed to have emergency surgery to stop the bleeding. I will relate more about this experience in a later chapter. We had to stay the night to make sure the bleeding stopped (just a protocol as they hadn’t had a patient need to go BACK into surgery in their experience). By 4 AM I could see fresh blood on the pillow. By 7 AM Drew was back in emergency surgery. The other surgery that didn’t go as planned was his hard palate repair. This happened 3 months after his tonsillectomy. It was supposed to take an hour and a half. After three and a half hours, we were worried. The surgeon walked into the waiting room as I was standing to ask the receptionist what was going on. The surgeon told us that the soft palate repair had come undone, so he had to re-repair that. To make matters worse, Drew was bleeding so heavily during the procedure they were spending all their time cauterizing and not repairing. So, they stopped and did lab work and determined that his clotting times were increased and his blood count was low, but that they could continue. They were able to finish without too much trouble. Drew was lethargic for months after that surgery!

*Twice the Fun*

Evan was born December 14, 2003. He was three weeks early, but weighed 7 lbs. 12 oz. He was vigorous and healthy! He had all his fingers and toes and… face. We were so happy. We felt we had really taken a chance in having another baby. Every couple on the planet has approximately 1 in 750 chance if having a child with a cleft. After having a previous cleft child, your risk is more like 3 in 100. Ryan was reasonably scared. I thought because we had no family history of birth defects it was probably an environmental thing and we were relatively safe. And here was Evan- our miracle after a storm. Drew had already had 5 surgeries by the time Evan was born. We were ready for a reprieve and Drew was ready for a sibling!
Evan was a smiley, happy baby. He grew quickly, reaching 18 lbs. before he was four months old. He had all his vaccinations on time. He babbled and cooed. Most parents take this for granted. As the parents of a child that had struggled to make any recognizable sound, we reveled in any sound Evan made that sounded like a “normal” baby (yes, still with the quotes). Evan had some respiratory issues that worried me a bit. I have a brother that had severe asthma and Ryan had a brother that struggled with asthma as a child. I knew that we could be facing asthma in Evan’s future.
Around the time Evan was 8 or 9 months old a whirlwind of activity started. Evan was introduced to peanut butter by his helpful older brother and he had what appeared to be an allergic reaction. I told Ryan it was IMPERATIVE that we keep Evan away from any and all forms of peanut and peanut exposed foods. A month later, Ryan called me from his mom’s house (I was scheduled to work and then put on-call after Ryan and the boys had already left for Nana’s house) and told me that Evan had swiped someone’s PBJ and taken a bite. The result was hives and swelling. They had given him Benadryl, and the hives were going away. The coughing spells were getting worse. I knew we were dealing with a child who needed medical intervention. His pediatrician and they put him on Xopenx, a medicine that opens the bronchiols. We were using it so frequently I called my parents and got the name of an asthma specialist. It was weeks before they could get me in. We would wait the two weeks. At this same time, but completely unrelated, Evan stopped babbling. I didn’t think much about it until 10 months later. We were dealing with his physical health, possibly life threatening stuff. I’m not saying I would have put more stock in it if he had been physically healthy, but we were justifiably distracted with a higher priority. Evan was diagnosed with asthma and considered “severely allergic” at 14 months. We started carrying an EpiPen (thank heavens he was a chunky kid- most 14 month olds aren’t big enough for the EpiPen Jr.). We bought a nebulizer. I pitied myself a little bit that I had two kids with special needs. Ha! I should have saved it for later!

Circle, Circle, Circle, Circle…

At 18 months, Evan was still completely non-verbal. We suspected that it had something to do with the fact that his older brother had unintelligible speech. His pediatrician recommended… you guessed it, early intervention. They tested Evan and he was developmentally delayed in both expressive and receptive speech. Again, EI is a blessing and a curse- they sent out an early intervention specialist but not a speech professional. I was “okay” with it because I felt I had other resources. I had talked to Drew’s private speech therapist and we had scheduled an appointment for her to assess Evan after his 2nd birthday if he was still not talking. We started to notice some other things about Evan. He didn’t really like to play with other kids. He often didn’t respond to his name and I wondered if he had hearing problems ( a quick trip to an audiologist showed that he had better than average hearing for a 2 year old). Evan rarely made eye contact, even with people he knew. He didn’t really point to things in books or around him. He occasionally walked on his toes. It was at this point I though life handed me a big fat lemon! What actually happened was I was getting ready to make a cool pitcher of lemonade. Evan’s early intervention specialist got promoted. So, we got a new specialist. She seemed so cold and matter of fact. I thought I hated her. In reality, she was about to give me the most important training I was ever going to get. She was about to teach me how to deal with my Autistic child.
When Evan was about 29 months old he started to notice circles. He would trace around and around the circle. I noticed his interest and told him it was a circle. Boy howdy! I didn’t know what I was starting! From then on, every time Evan found a circle, he would trace around it and say (yes, say!) “Circle, circle, circle,” over and over until someone redirected him. We were all just excited that he was speaking. (Okay, I WAS a little dense- or maybe hopeful. I still didn’t fully accept and understand what was going on). Shortly after that, I was holding Evan’s shoes. He looked up at them, and said, “shoes.” I was ecstatic! He had referenced an object and correctly labeled it! I tried to recreate it for Ryan when he got home, but to no avail. Then, later that night, Evan was walking around reciting the word ‘shoes’ for no one in particular and definitely not to identify shoes. It was a fascinating new sound, but he did not identify that it was the label for his Elmo sneakers!
About a month later, we were at speech therapy for Drew. I would take Evan with me and he would play in the waiting room while Drew did his one hour session with his speech pathologist. Maybe Evan was learning by diffusion (look it up, osmosis is a process that requires water) but that day something extraordinary happened. Drew, being particularly rambunctious that day, headed out of the door into the hall. We could see Drew in the hall because the Pediatric Rehab waiting room had a series of large windows looking into the hall. Evan looked up to me and said- plain as day- “Mom, Drew went outside.” I was flabbergasted. I couldn’t believe it. Not only was he talking, but he was using four word sentences!