A Very Nice Day

Merry Christmas. . .

Love, Kaden Claus

Happy Thanksgiving

We have quite a bit to be thankful for this year . . .

First of all, Kaden is doing extremely well. The stitches on his lip were removed the day before Thanksgiving and he looks absolutely wonderful. More importantly though, Kaden is back to his old pre-surgery self. He's been playful and happy all week and has lighted up our lives once again with his amazing little laugh.

Second, Kaden's mommy and daddy have each other. It goes without saying that this has been a difficult year. We found out we were pregnant last November and it's felt like a million mile marathon since then. We were best friends before but this has been the ultimate bonding experience. There is nothing in this universe more solid than our love for one another and for our son.

Finally, we have an exciting future ahead of us. Sure, there's still palate surgery and orthodontia, possibly bone graft surgery, etc., etc. For the first time though, it seems we can finally see the light at the end of the tunnel. We're beginning to daydream about trips to the zoo and baseball games. We're beginning to really appreciate the wonder and excitement of every new day with our little boy. We're starting to exhale and it feels good.

After Surgery - Day 7

Kaden had surgery to repair his lip, nose and gum line on Monday, November 17, 2008. It’s now 7 days later and he's well on his way to a full recovery. In the past few days he's managed to give us a few little smiles, which makes all the stress and worry worthwhile.

The picture to the left is the first picture we took of Kaden in the recovery room after surgery. After a grueling 6 and a half hours, Dr. Cutting emerged from the operating room to let us know that everything went smoothly and that he thought we’d achieved a good result (though it will take years to know the full result after healing). We relaxed slightly, but were extremely anxious to see our little one in the recovery room.

The anesthesia had not quite worn off and he was still mostly asleep. We weren't allowed to touch him at first, which was excruciating, especially when it became clear he wasn't breathing well without the oxygen mask.

The next 30 minutes were extremely scary as we watched Kaden violently gasp for breath while making loud rasping sounds. The nurses tried to remain calm and tell us everything was "normal" as they suctioned out secretions from his throat with a narrow tube. Kaden responded with more gasping, yelping and trembling.

The anesthesiologist was summoned and decided he should be given a steroid injection to reduce swelling in his throat from the breathing tube that was inserted during surgery. Another round of suctioning calmed him long enough for the nurse to put him in my arms. We sat for just a few moments before he began gasping for breath and jerking his body all over again.

My husband and I were absolutely beside ourselves with fear. The recovery team assured us over and over that he was okay and that he was having a reaction to the intubation which, they said, sometimes happens. Kaden was given a nebulizer and seemed to calm down though his breathing remained heavy for several hours.

The surgical team decided it was best for Kaden to spend the night in the pediatric intensive care unit for observation due to his breathing difficulties. My husband nearly broke down the second he heard "intensive care unit." I waited until we actually got to the PICU to have a crying meltdown that included screaming at a nurse who was trying to help us (I later apologized).

In between the recovery room and the PICU, our pediatrician (a former NICU doctor at NYU) came to examine Kaden and reassured us that his labored breathing seemed to be due to swelling in his nose and throat. She didn't hear anything is his chest or lungs and she was confident he was going to be okay once the swelling went down.

After a very long night at his bedside watching the heart rate monitor and trying to feed him small amounts of formula every 2-3 hours, we were relieved to find that he was okay and ready to be released in the morning. His breathing was still a bit heavy and raspy, but the heart rate monitor showed his oxygenation rate had been strong throughout the night. Although we felt a bit nervous about less access to doctors and nurses, we really wanted to get Kaden back home in hopes of diminishing the look of shock and confusion that had clouded his face since waking up in the recovery room.

The following days were brutal. My husband and I watched, fed, and comforted Kaden in shifts. We each got only 3-4 hours of sleep at a time. It was extremely difficult for either of us to feed or change him alone as Kaden proved to be extremely adept at wiggling out of his arm restraints.

Now, almost a full week later, Kaden seems to be settling back into the calm, happy and easygoing baby that he was before the surgery. Thank God. He's getting better every day and looking better too.

The stitches come out in 3 days. Stay tuned . . .

'Twas the Night Before Surgery

Tomorrow is the big day and we're feeling far more nervous than expected. It's one thing to know a surgery is necessary and that the doctors have performed it on hundreds of other infants, but it's another thing entirely to imagine handing over your own barely five month old baby to anyone for anesthesia or surgery. Dr. Cutting told us we can expect the surgery to last six hours. In other words, an eternity.

Let me just say for the record something that I hope Kaden will know deep within his heart as he grows up . . . he was, is and always will be absolutely perfect to his mother and father in every way. This surgery is for him and not for us. We'll miss his wide smile and the beautiful face that he was born with and we'll carry it in our hearts forever. We love you so much, Kaden.

Prologue to Kaden – Part 4 - Au Revoir Appendix

Just a few days after I fled the doctor’s office and decided not to move forward with an amnio, I woke up at 2:00 am with sharp abdominal pains. The pain was severe enough to keep me awake all night but not so bad that I couldn’t get dressed and go to work in the morning. My husband was leaving town for an overnight business trip to Boston and I reassured him that I would be okay, that it was probably just gas. I promised to call my OB as soon as I got to work to ask if there was anything I could take to relieve the pain.

By 9:00 am my doctor had given the green light to take Gas-X or Mylanta for what I assured him was probably just gas. He asked if I had any fever or vomiting. Nope, just the sharp pains. No bleeding. We agreed that I would call him at noon for a status report.

By noon the pain had increased. I was taking Mylanta as if it were candy but still no relief. Still no fever, vomiting or bleeding either so the doctor told me to go home and relax. If the pain persisted through the afternoon or I developed other symptoms I was to call him right away and go to the hospital for examination. My husband was nervous and decided it was best to make apologies to his boss and come back from Boston that evening in case I needed him. Thank God he did.

I threw up for the first time at about 5:00 pm but then, miraculously, I felt better. I called my OB and he was tentative. Maybe I had gotten out whatever was bothering my stomach. He told me to call him right away if I threw up again, the pain came back or I developed a fever.

Within an hour the pain returned tenfold. I was alone in my apartment and not sure that I had the strength to even call a cab to take me to the hospital. My mother in law, knowing I wasn’t feeling well, was on her way to the apartment to take care of me until my husband returned from Boston. She walked in the door at about 7:00 pm. Within minutes I was vomiting again. We called for a taxi to take us to the hospital. Because we live in the suburbs and my OB and hospital were in NYC, it took more than and hour to get there.

Here’s what I found out at the hospital: abdominal pain when you are 5 months pregnant is a complicated thing to assess. Since I had no fever, which is generally the first sign of an infected appendix, they performed other invasive manual testing to rule out pre-term labor and the like. The night was starting to get really scary.

My husband was by my side by 9:00 pm but we still had no idea what was wrong. Even worse, it was a busy night on the labor and delivery floor of our hospital and it seemed as though my belly ache was the lowest priority. We literally waited in the room for hours before an MRI machine was available for me at about 1:00 am. I will save for another time a diatribe against my original OB and the hospital care we received that night, but let it simply be said that I have never in my life felt pain as severe as my appendix rupturing and I hope that I never do again.

There was a point in the night when I didn’t need MRI results to tell me it was my appendix, the pain in that area became so penetrating and severe. My moaning turned into screaming and crying. Unfortunately the doctors did have to wait for MRI results so my husband, beside himself at that point, did his best to hold himself together and be there for me until they finally took me for surgery at about 5:00 am.

The hours right before the appendectomy are fuzzy to say the least. I was in a haze of pain, fear and morphine. I remember being met by a group of doctors right outside the operating room who asked rapid fire questions about my medical history and began explaining the risks associated with surgery, which I supposed was necessary for informed consent. Between grimaces and squirms I looked at the doctor and asked, “If I don’t have this surgery right away there’s a strong possibility that the baby and I will both die, right?” Yes. That was all I needed to know. I didn’t want to hear any more about risks or potential complications. I just wanted me and Kaden to survive and get to the other side of the whole horrific situation as quickly as possible.

I woke up from general anesthesia to the faces of my husband and mother in law telling me that everything was okay. The doctors had already performed an ultrasound and confirmed that Kaden made it through the surgery too. We were all so relieved.

I found out later that the doctors performed a laparoscopic appendectomy, which means they filled my abdomen with air, inserted cameras and thin instruments, removed my appendix and vacuumed my abdominal cavity to remove toxic matter that had leaked out. Fortunately, the perforation in my appendix was small and the leakage remained localized. How they were able to do all this without harming Kaden is beyond me, but I will always be extremely grateful.

My husband later told me how scared he’d been in the waiting room. How the surgeon told him before surgery that the whole procedure should only take 45 minutes unless the appendix ruptured, in which case things would be far more complicated and severe. After an hour and fifteen minutes passed with no word from the surgeon, he felt trapped inside the worst moment of his life. My appendix had indeed ruptured and he was faced with the unthinkable possibility of losing his wife and unborn son in an almost absurdly unexpected turn of events. I think it’s safe to say that was the longest hour and a half of his life. At least up to that point, anyway.

Countdown to Surgery

Kaden's first surgery is just over 2 weeks away and we're a bundle of nerves and excitement. After several weeks of aggressive NAM adjustments, teething and feeding issues, hysterical late night screaming fits and all day crankiness, Kaden finally seems to be settling down.

Now that we're in the home stretch, it's imperative that we all stay healthy. The slightest cold or even cut in Kaden's nose or mouth would be cause for delaying his surgery. That is especially problematic when you consider the Operating Room schedule at NYU is so tight that we'd likely have to wait several weeks for a new date. Kaden is a trooper, but I don't think he'd be able to stand another couple weeks of wearing the NAM. And neither could we at this point.

We went to the pediatrician this week for Kaden's 4 month "Well Baby" visit and vaccinations. His weight is still below the 5th percentile (10.8 pounds) but his length shot up to the 10th percentile (Hurray Kaden!). His pediatrician is a wonderful doctor named Edith McCarthy. She started a practice called Care Intensive Pediatrics after practicing at NYU Medical Center's NICU for several years. She's an excellent pediatrician and we feel really lucky to have her on our team.

Despite all the tears and screams of the past few weeks, Kaden remains a very happy and strong little man. He's just starting to develop a laugh that his mommy and daddy find endlessly adorable. He's always been an alert baby but now he's really starting to engage and communicate with us. It's been an amazingly beautiful thing to experience.

Just a few short weeks left. Wish us luck!

Prologue to Kaden – Part 3 – Screening Tests

After the initial diagnosis of bilateral cleft lip and palate at the 20 week ultrasound, our obstetrician suggested that we speak with a geneticist right away to learn more about the genetic implications and chromosomal “anomalies” associated with clefts. The doctor suggested this all be done immediately because we would not have the same options under the law after 24 weeks. Although I don’t recall whether he ever actually said the words, the meaning was clear: have an amnio so you can decide whether to terminate the pregnancy.

My husband and I were in such a fog that we got on the wrong train going home that day. My husband didn’t want to see a geneticist and wouldn’t even consider getting an amnio. This surprised me a bit because we’ve both always been very strongly pro choice. The thing was that Kaden was not a concept or a political principle. Kaden was his baby and he already felt strongly connected to him. He never wavered in his belief that Kaden was meant to be with us.

I didn’t know how to feel. I wanted to know but I didn’t want to know. The enormity of the decision we were about to make was staggering. Paralyzing.

I decided to see the geneticist and was not entirely sure my husband would be there until I saw him in the waiting room. I had a few questions that I needed to ask, the most important of which was whether there would be anything we could do in utero to help Kaden if an amnio detected a problem. The answer was no. Score one point in the “no amnio” column.

In a nutshell, the geneticist explained that in approximately 80 percent of cases a cleft is an isolated anomaly and there are no other issues. In roughly 10 percent of cases, cleft babies have one or more significant genetic anomalies that can have a wide spectrum of severity. Finally, in another 10 percent of cases there is a chromosomal anomaly such as Down Syndrome, Trisomy 13 or Trisomy 18, all of which can cause severe mental retardation, physical retardation and/or death. Although an amnio would be useful in identifying chromosomal and/or genetic anomalies, it could not rule out all potential syndromes or impairments. Also, the amnio would not indicate the severity of any conditions it detected, only the mere presence of the anomaly.

Prior nuchal transluceny screening, which was done at about 12 weeks, indicated that Kaden’s risk of Downs Syndrome, Trisomy 13 and Trisomy 18 were approximately 1 in 10,000, a very low risk level for my age. The geneticist told me that the presence of the cleft invalidated those results. Basically, Kaden’s cleft made it far more likely that this pregnancy would be that 1 in 10,000.

After wrestling with the million conflicting thoughts and emotions that flooded my brain as we sat in the geneticist’s office, I apologized to my husband and said I hoped he understood that I just needed to have the test (he did). I signed a consent form and waited with my husband for the doctor to call my name. My heart raced. I began sweating and felt the first pangs of a panic attack. I grabbed my coat, told the nurse I’d changed my mind and practically ran out of the office.

I never looked back. Not once. As difficult as not knowing would be, deep down I felt the same way my husband did. I desperately wanted to have the test and receive positive news. But what if the news wasn’t good? Well, I knew that I still wanted to have Kaden but I didn’t know if I could bear another 4 months of pregnancy, labor and delivery under the tremendous weight of a Down Syndrome or Trisomy diagnosis.

For the first time in my life, I had to completely surrender control of my fate to the universe . . .

Prologue to Kaden – Part 2 – Diagnosis of Cleft Lip and Palate

Our story continues at the 20 week sonogram. I’ve attached a sonogram picture from then so you can see things the way we did at the time . . .

We went to see our obstetrician and have the 20 week sonogram in January 2008. For anyone who has not had a 20 week sonogram, it’s the big one, the one where the doctor basically does a survey of the baby’s body and organs to determine if things are “normal” or if there are “anomalies”. I use the words “normal” and “anomalies” intentionally; they soon became obnoxious and intolerable to me. The first time around the sonogram technician was smiley and lighthearted, telling us things looked great and that we were having a boy. She called in the doctor to review and he informed us that all looked fine but we needed to come back the following week because he couldn’t quite make out details of the baby’s face due to the fact that his tiny little fists were balled up in front of his face. My husband picked up on a hint of hesitation and a look of concern in the doctor’s face and asked if he saw a cleft. The doctor said that he couldn’t say one way or another if there was a cleft because he just couldn’t see the baby’s face. I remember remarking that it wouldn’t be the worst thing in the world if the baby had a cleft, that was fixable, and the doctor agreed.

We left the office feeling happy and relieved that all seemed to be well with our little one. Secure in the knowledge that we were having a boy we agreed on a name, Kaden, in honor of my husband’s father (also a “K” name) who passed away when my husband was a small child. We mooned over the sonogram picture --- “Kaden has daddy’s legs” I remember saying. We were already completely in love with our little one and making plans for a great future together.

I knew something was wrong immediately at the next sonogram appointment. The technician was somber, quiet, she kept looking at the baby’s head – but not at his face – she kept reviewing and measuring his brain and his heart. I asked if she saw anything unusual and she didn’t answer. I said “I know you need the doctor but . . .” She cut me off with “I can’t say anything. I have to get the doctor.” She walked quickly out of the room. My husband and I exchanged a few nervous glances. He squeezed my hand.

The doctor entered the room and, without a single word to us, began looking at the same things the technician had: the head and the heart. After what felt like an eternity he told us that our baby would have a bilateral cleft lip and palate. I felt relieved to hear that was the only problem he saw but perplexed at all the measuring I saw of the heart and the brain. The doctor told us that in most cases a cleft lip and palate are isolated anomalies and the babies are otherwise healthy and fine. However, he then told us that in about 20 percent of cases cleft lip and palate are indicative of more global genetic or chromosomal anomalies, some of which are “not compatible with meaningful human life” and suggested that we have an amnio and speak with a geneticist to determine if we should move forward with the pregnancy.

Sucker punch. That’s the only way I can describe the way I felt. I didn’t know much about cleft lip or cleft palate but that wasn’t really what I was worried about. Not compatible with meaningful human life? Really? Had that phrase just been used in any sentence about my baby? Amnio? Geneticist? Oh God . . .

Prologue to Kaden – Part 1

Before we go any further, I feel it’s important to go back a few steps and tell the story of how we got where we are today. First of all, the story of Kaden cannot be told without some mention of the extremely traumatic pregnancy that led to the miracle of his birth. Second, his mommy is somewhat of a frustrated writer who’s probably never going to actually write that memoir she’s been contemplating since age 12 and she could use a little cathartic release at this point. Finally, and most importantly, it’s possible that someday another woman who is going through an extremely difficult pregnancy (perhaps involving cleft lip and palate) will happen upon this blog and take some comfort in knowing that she’s not alone – the way I did when I searched the internet for something (anything) that would make me feel a little better during the most gut wrenching and transformative time of my life.

Briefly, here’s the back story. Kaden’s father and I met in college 12 years ago and have been together ever since. We’re both lawyers, though I no longer practice, and we finally settled down in New York after several years on the West Coast. Though I always wanted to have children in a vague sort of conceptual way, there always seemed to be just a few more things we needed to do before I would be “ready” to be a mother.

We found out that I was pregnant in November 2007. I thought I had a virus. My husband looked at me with a big smile and said “You’re pregnant. I bet you.” He was right. Though it took us by surprise, we were both extremely happy. I had all these neurotic reservations up until the time I knew that I was pregnant. They all just melted away in the fog of happiness that ensued. We did all the nauseating things that expecting couples do: talked to my belly, bought baby name books, made plans to convert the spare room into a nursery. I remember going out to dinner with my best friend when I was almost 5 months pregnant (just starting to show) and telling her how extremely happy I was, how, for the first time in my life, I was feeling totally and completely happy. I should have known to be suspicious. Things were just feeling way too good . . .

First Post

Our beautiful little Kaden was born on June 20, 2008 with a bilateral incomplete cleft lip and palate. This blog is for him and will chronicle our journey with our very special and amazing little man.

As first time parents we're learning a lot, particularly in the area of cleft treatment and repair. Kaden is a patient at NYU Medical Center in New York City and is receiving treatment from an amazing cleft team that includes Dr. Court Cutting, Dr. Barry Grayson and Dr. Larry Brecht.

Kaden's treatment began just three weeks after he was born with the insertion of a molding device called a "NAM" (which is an acronym for Nasoalveolar Molding Device). He is scheduled to have his first surgery to repair his lip, gums and nose on November 17th, 2008. As we understand it, this surgery will be the first step in a treatment process that will include additional surgery, orthodontia and speech therapy.

This is where Kaden's cleft repair process begins . . .