bethysmalls

•Forgot what day it is which allowed me to,
•Forget about my infant’s well baby visit,
•Cared for two children by myself until 10:30 or so when,
•I hosted my first 2×2 children playdate where I,
•Ate 2 donuts. And despite that, I
•Put on a pair of regular jeans for the first time.

My c-section incision makes it impossible for me to wear pants at a non-mom-jeans level. I’m officially part of the club now.

Anyone?

When someone has perfected that, please do let me know as I’m about to lose my mind over my first born’s inability to go the eff to sleep. My newborn, however, whose routine we just switched up for the benefit of my toddler, is sleeping soundly in his bassinet despite the fact that Mom and Dad are downstairs watching TV. This feels all wrong. And it didn’t even work.

Tonight, in an attempt to help Bruno deal with the jealousy he was having with Felix getting to sleep in our room and be with us after he goes to bed, we all put him down tonight as a family. We even let Bruno read Good Night Moon with us. And come Bruno’s bedtime, he still acted like a total turd and got out of bed and just over all was a turd. Did I say that already?

Harumph.

My new baby has arrived. Felix was born on August 9th at 1:04pm. My platelets were just below 100 so I was able to be awake for the birth, thank the heavens.

We didn’t know Felix’s sex going into the surgery so there were a LOT of unknowns. How serious is the palate, will this person be able to grow a mustache some day and hide the inevitable scar? Is there really something wrong with the baby’s hands or has my denial been well placed? Should I have waited to see if the baby would flip on its own? Is there even an answer to that question?

As my husband came into the OR, I was already close to tears. All this emotion sitting just below my very pregnant surface was about to spill on to the floor. The baby’s sex was the first thing anyone knew since the wrong end came out first.

“It’s a boy!” my OB said and I bawled.

“How’s the palate?” I asked, because I’m very sentimental.

“There’s a cleft..” someone said, and I bawled.

“but I don’t think it will affect feeding.” And I bawled. All happy tears now.

When my eyes finally focused on the baby in the warmer, my sweet Felix, I realized there was indeed something wrong with his hands and this time, I wept. “I’m so sorry, baby” I said to him. Over and over. I looked at my husband who is the most amazing man ever and he was smiling. Just smiling, able to see the new baby as just a new baby and not be angry and upset about all the challenges ahead that we weren’t even fully aware of.

The pediatrician in the room came over and while standing between me and the baby told me he thought the hands and feet had been affected by something called Amniotic Bands which can wrap around the baby in utero and bind things so tightly that they can amputate. He told me he didn’t think it was Ectodermal Dysplasia which was one of the possible problems our genetic counselor had mentioned that can affect both hands and face.

I was… relieved? There was an explanation. But so much more to find out. My OB came in to talk to me after the delivery and explained that surgery would be able to help my baby’s hands. Some of the fingers were missing from mid finger on but some of them were wrapped up in these bands and it was possible to free them and restore function. Again, relieved? More surgery, but at least there was an option.

Over the next few days in the hospital we found out more and more about this strange…thing… that afflicted our son. It might have caused the cleft as well. It could have been SO much worse. Limb amputations, miscarriage, or a far more devastating cleft. And it’s rare, something like 1 in 2000 live births, so again, we beat the odds. Amniotic bands happen, sometimes, for no reason at all and nothing anyone did was going to change that for us, unfortunately. It’s also random so there’s no indication that this will happen again should we have another baby. Nor does it impact Felix’s genetics. It appears as though all these structures developed normally before being bound.

We also learned plenty about Felix, too. He’s a great nurser! He is so much smaller than his brother at 7lbs 8 oz. (but Bruno was born at 41.5 weeks, so), and he’s pretty darn cute, totally precious and I can’t even tell you how chill. He has all his toes and the thumb and index finger on each hand. He has parts of all the other fingers but we don’t know yet what kind of function he’ll get out of those.

I love him more and more and more every second and that makes the pain of what has happened to him all the worse. He was supposed to be safe in there. Instead, he was bound up by these things and robbed of some misty future where he could have been a world class pianist or at least someone who wouldn’t need to ever tell people “what is wrong” with his hands.

Another thing my OB told us is that she had a friend in med school who was missing some fingers and he turned out to be a surgeon. She gave us another example of a friend with something something something but I was still processing/just out of surgery/crying and don’t remember what but I appreciated it immensely.

We are home now and doing really well. I had a mild anxiety attack at the pediatrician’s office because of people “looking at him.” But the appointment was great, he’s gained ounces since discharge from the hospital and the doc told me about another patient he has who is 9 now and how his fingers look great. So.

I know it’s going to be fine. I just wish it wouldn’t take so much time and so much cutting and pain for my son.

Welcome, Felix!

Sup, dudes?

It started on my birthday. Not the pregnancy, but my realization of it. I took a test first thing in the morning on my 30th birthday as my friends were having a little get together for me and I wanted to know, if possible, whether or not I should “do it up, proper” as they say. The faintest of lines! Hooray! I allowed myself 1 glass of wine, because, I told myself, most people wouldn’t even know yet!

A few weeks later, I headed to my brother’s for Christmas Eve celebration with friends and, as my brother is an aspiring home brewer, I sampled his holiday concoctions. The next night while preparing Christmas dinner for my and my husband’s family, I had a half a glass of white wine.

Throughout all this I was struggling to remember to take my multivitamin. It was a two pill regiment this time around with one that had to be taken with food or else you burp up fishy tasting gas all day. Not a huge issue but a big enough one that I was having a hard time with it. Not an uncommon thing with second pregnancies, so I hear, but I was stressing about it. I knew there was a family history of cleft lip and that taking folic acid early in pregnancy can reduce the risk of that specific birth defect not to mention countless others. I confided my fears to a couple of friends hoping to reverse-black-cat the situation. It’s how I handle problems. I worry about them as a form of prevention. “If I’m thinking about it, it can’t sucker punch me and what kind of bad news wants to be expected? It will likely just avoid me, therefore.” Air tight logic.

At the 20 week ultrasound, I was excited. Excited and ready to have all my worries washed away. The us tech was making a thoughtful face and tilting her head to one side, then another and I asked her, “what are you looking at now?” “The nose and lips.” she said. “Everything look good?” I asked and she smiled and said, “The doctor will be in and talk about everything with you.” and I laughed because I know she’s not allowed to say anything about the results, good or bad, and I have a history of being neurotic so I still thought nothing of it.

The meter was about to run out so my husband left while we waited for the maternal fetal medicine doctor to come. When he did, I was alone in the room and the doc brought another doc. A resident if I remember right. A young woman with light hair. He said to me, “you know you have a big ovarian cyst?” I told him yes, that I had seen it on the screen and that I had had a doozy before. I’m not sure what that made me think but maybe something like, “if he’s talking about that, the baby must be fine.”

That didn’t last long. He fired up the machine again and began looking at… something. “What are you looking at?” I said in a wave of deja vu. “The nose and lips.” he said and I knew  that my worries were coming true. I took a few deep breaths and then he told me that the baby had a cleft lip and palate and I immediately lost my cool all over the place. I knew it. I knew something was wrong. I must have blubblered something about not taking my pill every day and he did his best to try and convince me that there was nothing I could have done, aside from taking a specific anti seizure medication that could have caused this. “This isn’t because you had a glass of wine. This isn’t because you smoked 4 cigarettes. This isn’t because you had sex and this isn’t because you had a fight with your mother. This just happens sometimes. Prenatal vitamins are useless in this country. Unless you are 14 years old and weigh 85 pounds. Americans get everything they need from their diets.” When I sobbed that I was embarrassed for getting so upset over something that is essentially cosmetic, he said, “Nobody wants this for their child.” That doctor pretty much wins at life. I haven’t been able to forgive myself completely for not being as cautious this time around but whenever I get really down, I remember what he said to me that day and I feel a little better.

Then the questionable hands. They were in fists. Then the amnio. Then the 2 weeks of waiting for the amnio results to let us know whether our baby could survive outside the womb. Then the Midwife appointment in those two weeks where the baby’s heart rate was irregular and I was sent for monitoring at the hospital which turned out to be from the fact that I had hardly eaten since getting the amnio and was likely dehydrated.

The amnio results being normal was a huge bright spot. Don’t get me wrong, when I got that news, it was like nothing else mattered. Not the cleft, not the other possible problems the baby might have that can’t be tested for, not the private hell I’d been in for the previous month. My baby was going to LIVE and that was a high like being in love.

Unfortunately, that high wore off and the reality of the difficulties we were up against slowly set back in. Then my platelets continued to drop meaning I might not be able to have an epidural or even a spinal block. Then the addition of the hematologist to my ever expanding cast of Doctors I Need to See All The Damn Time.

The past few weeks, I’d been driving my husband nuts with declarations of, “The baby’s head is in my flank.” And, “I think it’s down now.” And, “I think it’s back up in my ribs.” It probably wasn’t so much the declarations but the things I was doing to attempt to correct the positioning. My Amira’s Belly Dance & Yoga for Pregnancy being among the LEAST ridiculous things. And most of all, the amount I was letting myself get stressed out about it. I wanted to try to labor again. My induction was awful and by the time I had to decide on the C-section or not, I was in so much constant pain, I don’t think I could have really thought about anything seriously. And I “hired” a doula! I say “hired” because she was still in training and didn’t charge me for her services. But at the last two check ups, despite there being at least one flip in between, the baby was breech. And has been steadily, head-in-ribcage for days. I was 38 weeks +2 days at my last appointment and scheduling a c-section takes time. Waiting another week to see what would happen didn’t seem logical and, frankly, I was tired of all the freaking unknowns. I was ready to relent and let them tell me when my baby would be born.

And then as the doc was on the phone with the schedulers… Well this is how I heard it:

“When is your next available c-section slot?… hmmm… and the next one after that?… hmmm… and after that?  That’s… disappointing.”

The doctors from my practice were in the hospital Monday, Tuesday and Wednesday and they were all completely booked. There was one slot on Thursday with a surgeon from another practice who I’d obviously never met before. Not the worst thing in the world but not ideal, which actually sums up the last 4 months of my life since getting the news that this baby would have special needs. But thankfully, no one expected me to go into that doctor and the OB I saw yesterday had an option for me. “Let me talk to your doctor tomorrow and I’ll call you first thing in the morning. Maybe we can work something out for Tuesday.” I was relieved. I think he felt bad for me and I don’t even mind. The odds of having a baby with a cleft in our situation is, like 2%. The odds of having gestational thrombocytopenia is 8-10%. The odds of having a full term baby in the breech position is 3-4%. Yes I’m lucky to be having this baby and yes I’m lucky that the cleft isn’t something worse but when you beat the odds in the wrong way enough times, it starts to wear on your spirit.

The doctor didn’t call this morning. I spent the day tending to “injured” campers and trying not to end up in a puddle of tears on my office floor. I had come to the conclusion that I would just have to wait until I went into labor on my own and then they’d HAVE to do the c-section. I had flash backs to the 10 days of waiting I did between Bruno’s due date and the day he was born and, let’s just say it didn’t help my mood.

I got a phone call tonight at 7:45. The OB I saw yesterday “twisted a lot of arms” and got me in on Tuesday when, according to their estimated due date for me will be 38 weeks and 6 days. According to MY due date calculated from my basal body temperature chart, it puts me at 39 weeks exactly. So, I’m fine with it.

Keep your fingers crossed, people. I still have a course of steroids to take to see if my platelets can go up and if they don’t work, I have to go under general anesthesia. There’s a 1 in 3 chance they will work. 33%? Ain’t no thing.