OUR BABY!!!

Name: Elias Matthew Clarke
Birthday: July 28th, 2010
Time: 11:11am
Weight: 9 lbs. 1 oz.
Length: 19 and 1/2 inches
Hospital: Crouse Irving Memorial, Syracuse, NY
Babies make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for.







Tuesday, March 30, 2010

Upcoming Dates

I am going to continue updating this blog as we go, though my entries may be few and far between until he is born.

The Perinatal Center called me this morning with appointment dates and times for us.

They are as follows:

APRIL 27th - Ultrasound at 10:00, Follow-up with Dr. at 11:30, Fetal Echocardiogram at 1:00.

MAY 12th - Pediatric Surgeon Consult at 10:30.

And can I just say, I am SO EXCITED for Spring Break! I can't wait! It will be so nice to spend time at home, relaxing! Hope everyone has a happy, healthy holiday!

Friday, March 26, 2010

GREAT NEWS!!!

For those of you who have not heard yet, we got the results from our amnio today and they show NO CHROMOSOMAL ABNORMALITIES!!! It seems that aside from this small omphalocele (still only about 1-2 cm in diameter), he is perfectly healthy! Thank you all for your prayers and well wishes. They made a difference! Thank you, Lord!

Now, we sleep soundly for the first time in three weeks...

Tuesday, March 23, 2010

Still Waiting...

Just a quick update:

We called the Perinatal Center yesterday to see if our results were in. They were not. They said to call Friday if we have not heard by then. However, we have an appointment on Friday morning at 10:15 for another Level II ultrasound, so if we don't hear by Thursday night, I guess there is little point in calling Friday morning. I am fully expecting to have to wait the rest of this week out.

Thursday, March 18, 2010

Reflections

Almost a week has passed since our appointment in Syracuse and our amniocentesis. That means that they could call any day with results.

I had a dream a couple of nights ago that our baby boy was born with curly, light hair, a tiny, beautiful face, perfect miniature hands, fingers, feet, and toes, and a rather unsightly omphalocele. In my dream, they repaired the O and I had him in my arms within hours after birth. And he was fine.

Every time I think about getting the results back, my heart just drops right out of my chest and into the pit of my stomach. I feel heat rising up through my body and filling my head until it presses outwardly on my skull. I get nauseous and dizzy. But that being said, it is getting easier to deal with all of this. The more time I have to think about all of the different scenarios, all of the various outcomes, the consequences - the more comfortable I become with it all. I know it sounds crazy.

My greatest fear is that the results are inconclusive, which could happen. It's amazing how we never want to hear bad news and yet in these circumstances, we'll take bad news over no news at all. This is why I hated my Medieval Philosophy course in college. Trying to figure out the truth from a list of unknowns was frustrating, agonizing.

So today is another day. It's sunny and warm. I will get outside (at some point) and enjoy it while it lasts.

Saturday, March 13, 2010

Friday's News

We arrived in Syracuse at 8:30AM on Friday morning. After the paperwork was completed, we settled in to our chairs in the waiting room. We waited until about 9:25 before being beckoned into the ultrasound room.

The technician performing the ultrasound let us know right up front that all she would tell us was what she was looking at, unlike our sonologist in Binghamton, who let us know at every opportunity that things looked good. So right from the start I knew I wouldn't get any information until we met with the doctor.

The ultrasound proceeded rather normally. It took a long time. The sonologist (Katie) took a very involved look at every single part of our baby. Many, many times she applied color in order to see blood flow. She told us what we were seeing on the screen for the majority of the ultrasound. However, she stopped talking halfway through, and that's how I knew she was looking at the "O". After measuring the omphalocele from various angles and applying the color, she "switched cameras" and soon we were looking at 3D pictures of our baby boy! Some of them were really cool - we could see his facial features, his arms, belly. But there were parts that were scary, like the omphalocele itself.

After about an hour of laying on my back, turning onto my right side, my left side, and the table tilting so that my feet were above my head, we were sent back to the waiting room. We spent only about ten or fifteen minutes out there, and then we were called back to a tiny consultation room where we would spend the next two hours.

A nurse came in to take a medical history. Then we waited for the doctor. We spent 45 minutes waiting in this room. I went through periods of high anxiety during this time. The room was about 10' X 12' and painted in beige with white and light blue stripes. There were three magazines to look at and several pamphlets and brochures. I went through all of the reading material in the first 20 minutes, then sat there in agony for the rest of the time. I couldn't think straight enough to care about anything else.

The doctor finally came in. His name is Dr. Nosovitch. He introduced himself and then began a 45 minute lecture on everything he could possibly think of related to our situation. He was very knowledgable and very kind, but at the same time, very direct and straightforward. Every time a question formed in my mind, Dr. Nosovitch answered it before I even had a chance to form words. It was like he was reading my mind.

So here's the long and short of it:

The good news is that the baby is essentially healthy. There are no detectable defects in brain, spine, heart, face, arms, legs, other organs, etc. The only problem is the omphalocele itself, according to the ultrasound. The bad news is that only bowel (intestines) was detected in the omphalocele. I originally thought this was a good thing. Then the doctor said that omphaloceles that do not contain any part of the liver have a higher correlation with chromosomal abnormalities. In fact, the chances are 50/50. I processed this news like this: one out of every two babies with an omphalocele containing only intestines will have either Trisomy 13, 18, or 21. I don't like those odds.

Trisomy 21 is Down's Syndrome. Trisomy 18, also called Edward's Syndrome, has about a 95% mortality rate. Most die in the uterus, but those who are born live usually die within the first three days. Of the very small minority who survive the first three days, most die within the first year of life. Trisomy 13 has a slightly lower mortality rate, but the life expectancy of a Trisomy 13 baby (also called Patau Syndrome) is only 10-15 years. All three of these chromosomal abnormalities carry with them definite, severe mental and physical disabilities.

Another possibility is Beckwith-Wiedemann Syndrome, which is characterized by oversized organs (mostly kidneys), oversized tongue, sometimes disproportionate sides of the body, and an increased risk for developing childhood cancer. This cannot be diagnosed prior to birth in most cases.

The best and most optimal outcome is just an isolated omphalocele. If that's the case, we are in good shape, because the omphalocele is small and only contains bowels, and the rest of the baby appears healthy at this point. We are hoping, obviously, that this is the case. This would mean an operation shortly after birth, a few days to a week in the hospital, and most likely a full recovery.

Dr. Nosovitch offered us amniocentesis, which we decided to go ahead with. We would like to know what we are dealing with. The amnio itself was not painful. They cleaned by belly, swabbed it with iodine, used the ultrasound to find a pocket of fluid, inserted a very small needle, withdrew two tablespoons of fluid, removed the needle, cleaned my belly again, and we were on our way. The whole process took less than ten minutes. Then I got a shot of Rhogam in my ass. That hurt.

We left the doctor's feeling resolved. We treated ourselves to Dinosaur Barbeque, and then went home. We are proceeding with life as normal.

We will receive notification of the amniocentesis results in 7-14 days. I want to know as much as a I don't want to know. I am taking refuge in these next couple days, knowing that the news we receive will be dramatic either way. I am trying to stay busy and not think about it. Everytime I start to feel scared or sad, I think about my beautiful baby girl and how very lucky we are to have the life and family we have. We will be okay regardless.

If there is one lesson I have learned already from this experience it is that we are all vulnerable. Tragedy can happen to anyone at any time without any notice, and I have always taken my good luck for granted. Not so anymore.

Thursday, March 11, 2010

The Beginning

We started this pregnancy with a cautiously optimistic outlook because of our previous miscarriages. Who would have thought that we'd have to maintain that outlook for the entire nine months?

After the initial two ultrasounds, one at five weeks and one at six, we started feeling better about the future of this pregnancy. Everything seemed to be in order. At ten weeks, I heard the heartbeat for the first time on doppler, and I had felt even more reassured. When that twelve week marker came, we were so thrilled just to have made it that far! Our fourteen week appointment went well, too. We heard the heartbeat again, blood and urine levels were on target. I let myself feel the pure excitement and joy that is supposed to come with being pregnant. It was the first time since the test read "positive" that I completely let go of worry and just celebrated.

We scheduled our eighteen week appointment for March 4th, and I thought that the day would never come. We both thought it was a boy this time - things just felt different than they did with Julia - and we couldn't wait to find out. I thought I wanted a girl at first, and then I thought, no, a boy. I was back and forth for weeks. After a while I realized that it didn't matter as long as the baby was HEALTHY. And quite frankly, that's what I expected.

The morning of the appointment did come, and I can remember telling Eudes how excited but nervous I felt. "I just want to make sure it's healthy," I told him. "You know, no heart defects, not missing any appendages, its intestines are not outside of its body. It doesn't matter what the sex is." It was said in jest, because no one ever thinks that it could happen to them. We're healthy, so what could go wrong?

The ultrasound began just like any other: "This is baby's profile, here's its belly, its little leg, and - you two are good at this - it's a boy!" I had fed him chocolate while sitting in the waiting room (not for me, of course!) and he was definitely enjoying the little sugar rush. He looked perfect on that black screen. The technician went on to measure the head, the abdomen, the arm, the leg, the feet - all good numbers. She looked at his heart - four chambers - and the vessels going to and from. She looked at his spine - perfect - and his kidneys - look good. She did some things I didn't know they did during a routine ultrasound, like measure skin folds on the brain and the amount of skin on the back of the neck. She looked very closely at the umbilical cord for three vessels (two arteries, one vein) which she said the baby seemed to have. It felt like it took a lot longer than it should have, but I didn't mind - it was more TV time for us! The last thing she showed us was a portion of the cord near the insertion into the abdomen, and there on the screen was a white mass. She explained to us that this was not normal. It's called an omphalocele and it is a protrusion of internal organs through a hole in the abdominal wall and into the umbilical cord. I remember feeling all of my breath leave my body. She didn't explain much of what this meant. She was reassuring that it looked small and everything else looked normal, and said my midwife would discuss it with me further during the consultation which was to follow immediately.

I was feeling just a little scared and nervous until she asked, "Are you going to be okay to sit in the waiting room?" I though to myself, why wouldn't I be? Maybe this was more serious than she was letting on.

We sat in the waiting room, sending out mass text messages to all of our family and friends saying, "IT'S A BOY!" I called my mom and told her there is a problem but that I didn't know the details. I would call back after I spoke with Elaine (my midwife). We waited, and waited, and waited.

About half an hour later, they called us back. Pee test, weight, blood pressure, then the real pressure. Elaine explained that she had never dealt with this issue before and that she had little expertise in the area. She told us we would have to go to Syracuse for further testing and that most of our appointments would probably be up there from now on. We should also plan on delivering up there.

So we left the office feeling, once again, cautiously optimistic. Just this one thing... no big deal. Everything else looks good. She doesn't think it's life threatening. Yes, omphalocele babies usually have other issues, but your baby looks healthy in all other respects. For a full 24 hours we dealt with this news more internally than externally. Eventually, I started to research online, became terrified with what I read and saw, thought the worst, cried, felt depressed.

Then I realized that whatever this is, we can't change it. We can't control it. What will be, will be.

Basically, what we know is that our new baby boy has an omphalocele. The list of things we don't know goes on and on... Is it small, large, or giant? Does it contain the intestines, stomach, liver? Is there a chromosomal abnormality such as Trisomy 13, 18, or 21? Does he have Beckwith-Wiedemann Syndrome? Will he be born with other defects: heart, diaphram, lungs, digestive, urinary? How many surgeries will he have to have? How long will he have to stay in the hospital? Will I be able to breastfeed? Will this compromise his quality of life later on?

For now, all we can do is hope, pray, stay healthy, and wait for answers that may not come until after he's born. But we are hoping for some tomorrow when we have our first ultrasound with the specialist.