Friday, December 11, 2009

The Long Overdue Update

It's been so long since my last post that I hardly know where to begin . . .

First, and most importantly, Kaden is an extremely charming, happy and adorable 17 month old. He LOVES to laugh and play more than anyone I've ever known and is slowly showing me the ropes of stay-at-home motherhood.

Kaden's palate was repaired by Dr. Court Cutting at NYU back in June. Of course there were complications that kept us in the hospital longer than expected. In short, Kaden's body doesn't like antibiotics because they give him antibiotic induced colitis, a condition that would bring a grown man to his knees. So yes, we had another intense hospital stay. Thankfully, Kaden made it through and once again proved to all of us that he's the toughest little guy in the world.

Unfortunately, Kaden's progress in other areas has been quite a bit slower than we hoped. He's not yet walking but he recently started standing up on his own (holding on to furniture) and loves to be on his feet. It appeared at our last appointment with the orthopedic surgeon that his scoliosis is progressing and it's possible he'll need a cast or brace in the near future. Although I sincerely dread the thought of putting him through another drawn out and possibly painful medical process, we are of course prepared to do whatever is necessary.

He's getting weekly physical therapy as well as speech and feeding therapy -- still has absolutely no appetite -- and will likely start occupational therapy in the near future. I would be lying if I said that I don't worry about his delays, but he's shown me so many times that he's a lionhearted fighter. I believe with every fiber of my being that he's going to be okay. He's happy and healthy and that's more important than anything else in the world.

Since it seems to take me months to compose new posts (how is it that I have less time now than when I had a job!!!???), HAPPY HOLIDAYS!

Friday, June 5, 2009

Changes. Fears. Etc.

It's been far too long since I last updated this blog but I have a good excuse -- we've had several major life changes in the past 2 months. A new job for my husband, a move to a new city for all of us, and a new role for me. Yes, they said it would never happen (well, mostly I said it would never happen) but here I am, a stay at home mom. Now let's just hope Kaden takes it easy on me. I am new at this, after all.

Now for the hard stuff . . .

Kaden is scheduled for palate repair surgery on June 16th. I took him for all of his pre-op appointments on Monday, no easy task considering that Kaden and I both had colds that felt like the plague and Kaden topped his off with an ear infection. He was unhappy and uncooperative to say the least. He's been taking antibiotics and the consensus is that he'll be fully recovered in plenty of time for the surgery.

For some reason, I find myself filled with even more fear and dread than I did before the lip repair surgery. You'd think I'd be calmer because I now have a better idea of what to expect but it's really quite the opposite. I'm anticipating every agonizing step. It's torture.

Kaden's first birthday will be just 4 days after surgery. Poor little guy will be in arm restraints and probably miserable. It breaks my heart but I suppose we've all got to keep our eyes on the prize --Kaden will be healing and this long arduous chapter of his life will be completed.

Please keep us in your thoughts and, if you're so inclined, pray for a complication free surgery on June 16th and an easy recovery for our sweet little angel.

Tuesday, March 24, 2009

My How Time Flies . . .

It's been more than a month since my last post but it feels like just a few short days . . . my gosh, is Kaden's entire babyhood/childhood going to pass this quickly? I wish there was a way to slow it all down, to savor every moment.

Things have been incredibly busy the past few weeks. The good news is that we took Kaden to see an orthopedic surgeon and he said Kaden's scoliosis doesn't appear to be the result of any congenital anomalies. Quite a relief. In fact, the surgeon said it's the type of infantile scoliosis that may even resolve itself over time. Obviously there are no guarantees but we're very glad to know the outlook is good. We'll take that and run with it for now.
Unfortunately, Kaden continues to lag in the terms of upper body development. His first physical therapy appointment is later this week and we're hoping that he'll be able to sit up and crawl very soon. Poor little guy, you can just see in his eyes how much he wants to get moving when he's on the floor for tummy time. I suppose it's his first lesson in patience and perserverance.

I hope to post a little more soon. For now, here are a few more pics of our gorgeous little man.

Saturday, February 21, 2009

Kaden at 8 Months Old

Kaden is now 8 months old. As you can see, he's totally adorable and is healing extremely well from lip repair surgery.
He continues to be a happy and easygoing baby, though from time to time he does show a tendency towards willfulness (he is absolutely his mother's son). Let's just say that Kaden doesn't love being bottle fed formula. We're really looking forward to the day we can retire the Haberman bottle and feed him only solid foods.
We're now about 4 months away from palate repair surgery and facing a few more challenges than initially expected. Unfortunately, Kaden was recently diagnosed with scoliosis of the thoracic spine. Although it's not yet clear what that means for Kaden's long term development, in the short term it's contributed to gross motor delays. He hasn't yet hit milestones like sitting up on his own but the good news is that he'll be receiving regular physical therapy starting in March. With physical therapy and his tough little spirit, we're sure he'll be sitting up and crawling in no time.

The other good news is that, aside from a few stomach woes, Kaden has remained extremely healthy throughout this long cold winter. Thank God!

Thursday, January 15, 2009

Prologue to Kaden – Part 5 – Aftermath

I hope to finish up the “Prologue to Kaden” before time and everyday life dull my memory and make it impossible to accurately capture our pregnancy experience. I also hope to let go of the emotional baggage that I carry from the pregnancy and move forward with my wonderful son and husband. Writing this story and sending it into the ether feels like a good way to, literally and figuratively, release it all.

I have already written about the night my appendix ruptured in the post titled “Prologue to Kaden – Part 4 – Au Revoir Appendix.” In some ways, that was just the beginning. We figured that we’d already endured the hard stuff and the rest of the pregnancy would be drama free. That proved to be very wishful thinking.

Recovery from surgery was harder than anticipated. In addition to severe back pain and very limited mobility in the first two weeks after surgery, I had yet to feel the baby move and was getting more worried every day as good intentioned people asked me over and over, “How’s the baby?” I had no answer for that question. I hoped and prayed that Kaden was okay, but I had no way of knowing for sure. The last ultrasound had been done right after surgery and the doctors said he’d made it through. I was not scheduled for another ultrasound for about 4 weeks (and my doctor did not want to do it earlier), so all I could do was try to heal and hope that he remained okay in my belly.

When the ultrasound day finally arrived my husband and I were nervous and excited. At first there was relief, a strong heartbeat, Kaden was still in there even though I couldn’t feel him. Relief subsided into anxiety as the tech measured and re-measured multiple things: Kaden’s head, abdomen, legs. She asked if we had gotten an amnio. No, I told her nervously, we decided not to have an amnio. She left the room to get the doctor.

The doctor, a woman we had never met before who worked in a group practice with my original OB, told us that Kaden’s estimated fetal weight was in the 7th percentile. This is technically classified as Intrauterine Growth Restriction. Given the presence of cleft lip and palate, she said, this could be a further indication of a more global problem. In other words, she indicated, it was starting to appear more likely that Kaden’s cleft was not an isolated anomaly.

Then, for a reason that I still don’t fully understand, our dialogue with this doctor somehow became contentious. I asked her if it was possible that Kaden’s cleft and small size were not related. Yes, no, maybe, her answer was unclear. Could the fact that I had surgery five months into the pregnancy have caused the IUGR? No, she said. Studies of women who were pregnant during times of famine showed normal fetal growth so there was definitely no correlation in her mind between Kaden’s small size and the ten pounds I’d lost in the weeks following surgery. Not the same thing at all, but okay. She seemed to think we were trying to get her to commit to a diagnosis or a prognosis but we were really just trying to understand and absorb what she was telling us. She asked if we’d had an amnio (couldn’t anyone just read my file before asking me that question for the millionth time!!??). She told us we should reconsider the amnio and come back in two weeks for a follow up ultrasound.

Two weeks later, I was back in the office watching an ultrasound technician refuse to make eye contact with me as she measured and re-measured Kaden’s head, abdominal circumference and legs. Without saying a word to us she called in the doctor. This time, the perinatologist (high risk doctor) on duty for the practice group was the same doctor who had done our original twenty week ultrasound. We knew him, but not very well.

Although I don’t remember everything the doctor said that day, a few things do stand out. He started out by measuring everything again and then turned to me and asked, “Have you had an amnio?” I think I began crying immediately.

He said the baby’s estimated fetal weight was now in the 3rd percentile. He looked at me sternly and strongly urged us to have a n amnio so that we could “see what’s really wrong with this baby.” I asked again if there was any possibility that Kaden’s cleft and small size were independent things and he said, “Well, let me put it this way, lighting can strike the same place twice but it’s not very likely.” I’m not sure when he said it, but I also remember him saying, “Now we’re seeing multiple anomalies. It doesn’t look good.”

Complete emotional breakdown. My husband basically pealed me off the floor that day and carried me through the next several weeks. I was a basket case, calm one moment and bawling uncontrollably the next. I never went back to those doctors because, even if I had liked them (which I didn’t), I could not bring myself to walk into their office again.

Thank God for my husband. He pulled us through that very dark time through sheer force of will. I know that he was reeling on the inside but he maintained a stiff upper lip for me and, needless to say, I desperately needed it.

Thank God also for the new obstetrician my husband found. The first rays of hope were on the way . . .

Friday, January 2, 2009


What can we say about 2008?

It was, um, Dickensian (the best of times, the worst of times, etc.). It was a year of trials, of great joy and of complete transformation. Most importantly though, it was the year our beautiful little Kaden was born. It was the hardest and greatest year of all our lives so far.

As evidenced by this photo, Kaden spent the first moments of 2009 practicing his grip (on mommy's champagne glass). He is an active and wonderful 6 month old who can't stop rolling, giggling and growing every day.
Kaden no longer has to wear tapes across his scar. He's healing beautifully and seems to have already forgotten the NAM. His palate repair surgery is scheduled for June 23rd so we've got the next 6 months to enjoy without surgery, without orthodontic molding and without all the doctors (though we really do like all of them).
Thanks to all of our family and friends who have been so amazingly supportive throughout the past year. We sincerely wish everyone a happy, healthy and prosperous 2009.