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.







Wednesday, September 1, 2010

Belly Belly Belly Star!!!



It's been a while. Really, I've just been preoccupied. I had no idea I would struggle so much having two kids to take care of. I was concerned about how Julia would feel when we brought Elias home. I never thought that I would be the one dealing with such intense emotions. I think in the first week or so, I made Julia feel worse than she did because I was a basketcase... always worried that if I was holding Elias too much, Julia would be jealous. Or if I was playing with Julia, Elias would feel lonely. The guilt was eating me up. I would be lying if I said I'm over it now, but it has eased some. Having Julia back in school has helped a lot. I was trying so hard to make her summer fun that I was stressing myself out over it and instead of going out to have fun on the playground, Julia found herself dealing with a high-strung, low-patience mother that she didn't recognize. Now that she is back in preschool, she's not sitting in front of the TV watching reruns of Dora the Explorer all day because that's all her mommy can manage. She's playing and learning and getting exercise and I don't care what anyone says - the price is totally worth it.

Part of what has made me so stressed out is the fact that Elias is not an easy baby. I was spoiled with Julia, who seemingly never cried. Elias has some sort of colic, although I am sure that there are babies out there who have it worse. He cries and screams incessantly 4-6 nights a week from early evening until midnight or later. When he's not sleeping during the day, he's fussy. He won't sleep for more than a half hour or so in a swing or bouncy seat. Sometimes I just have to let him cry because I have to get Julia in bed, or dinner just needs to be made. And then I feel like I am failing him. It hurts me to see him hurting and know that there isn't anything I can do to make him feel better. I just pray that holding him while he cries (whenever I'm able) brings him some measure of comfort, no matter how small.

As for his general health, he is thriving. Despite the colicky episodes, he has gained more than three pounds already! Last I weighed him he was 12.8 lbs. Granted, he was wearing a diaper and a onesie, but still he weighs more than 12 lbs. His belly star is all healed and the surgeon said he looked great at his two week check-up. He also did super well on his newborn physical.

There is still the question of whether he has BWS or another syndrome. He has many of the markers for BWS: high birth weight, omphalocele, low blood sugar at birth, stork bites on his forehead and face. However, he is lacking two of the most prominent markers: the ear pits/grooves and the oversized tongue. I have noticed that his tongue is lopsided and seems to be growing larger only on his right side. At times I think I see it in his face and then at times I think I might be seeing things. The medical term for overgrowth of one side of the body is hemihypertrophy or hemihyperplasia. It could be just his tongue, his whole face, a limb, or the entire side of his body. Eudes thinks I should let the doctors decide, but I have done nothing but research about everything related to omphalocele since March and I know my babies. That being said, nothing can be done about any of it right now. If he has BWS, he will have a blood test every 6 weeks and abdominal ultrasounds every three months until he's about 7 years old to check for cancer. If he does get cancer, it is usually cureable. If he doesn't develop cancer by the age of 7 or 8, his risk decreases to that of any other kid. So, totally manageable as far as syndromes go. We were told that a geneticist will contact us to set up an appointment for Elias at around three months of age. Haven't heard from them yet, but sure we will soon.





Monday, August 2, 2010

WE'RE HOME!!!

After just 6 days in the hospital, we have brought Elias home! It feels so good to be back in our own home.

Julia is awesome with her baby brother. She wants to share everything she owns with him. She wants to show him her room, lay with him, hold him, kiss him, feed him, you name it. She also wants to play with him and it is hard to have to tell her over and over and over that he can't play with her - he's too little. Eventually she will get it. Our friends, Cisco and Stacey, gave Julia a baby doll as a gift and it was the best present EVER. Whenever I do anything for Elias, she does the same thing for her baby. It's very sweet.

I feel like our house and our family are complete now! It's a beautiful thing!

Friday, July 30, 2010

Still Smooth Sailing

Today was a great day. I slept well last night, despite having to pump every three hours. My roommate had gone home yesterday afternoon, so the room was quiet. Since I cleared the first 24 hours, the nurses didn't have to come in to measure my output or take my vitals continually. It was peaceful. At 4:30, I got up to pump and then went to visit Elias in the NICU. I got to hold him for about an hour before I was beckoned back downstairs by a resident who wanted to check my tummy. She asked me if I wanted to be discharged Saturday or Sunday and said it was really up to me. I told her that as long as Elias was still here, I would stay as long as they let me. So as of then, we were looking at a Sunday discharge.

After that, I went back to sleep. I slept until 8:00 when they brought some breakfast. I pumped, ate, and Eudes arrived soon after, looking refreshed and rested. At 10:30, we went up to the NICU to check on our little one.

The nurse told us that the surgeon wanted Elias to take two feedings of Pedialyte before trying the breast. Daddy fed him 10 CCs and he sucked it all down in the five minutes it took for me to run downstairs and get the camera. So we staged a picture! He took the 1:30 feeding the same way, so at 4:30, it was go-time.

He latched on immediately without any problem. He stayed on each side for 10 minutes, which is as long as they will let him nurse right now. They don't want him to get too full. Afterward, he fell fast asleep and we came downstairs for a little party with Meghan and Dan (my cousins). We ate pizza and wings and cheesecake and it was so nice to see them.

Then Daddy left to go back home to Binghamton for the night.

Then Meghan and Dan left, too.

And I got lonely!!!

At 7:30, I went back upstairs to feed him. He did well on the first breast, but fell asleep when he was on the second breast and I could not wake him enough to take it. So when I came back downstairs, I pumped. Then I took a little cat nap.

I just came back from his 10:30 feeding a little while ago. When I got upstairs, a nurse was holding him and he was ALERT like I had yet to see him. His eyes were WIDE OPEN and he was looking around. What a cutie pie!!! The nurse said he was going mad with hunger. He fed well from both sides, even gave me a little burp. Then I laid him down and came downstairs to meet my new roommate. Now I am thinking that the sooner I can get out of here, the better. I will try to get discharged tomorrow. Then Eudes and I will stay at his buddy's apartment, which is just a few miles from here. We'll come spend the day in the hospital so that I can be here for his feedings. Then I'll pump for the 1:30 and 4:30 feedings and bring the milk.

Although this is all subject to his release, which, between us, the nurse said could be as early as MONDAY MORNING. Keeping our fingers crossed, knocking on wood, etc. etc. Overall, it was a very productive and successful day!

Thursday, July 29, 2010

And Now a New Belly Button, Too!!!






Elias underwent his surgery today right on schedule. At about 4:30pm, the surgeon came to our room to tell us how wonderfull he did! He took the anesthesia like a pro - so well, in fact, that they were even able to remove the breathing tube before returning him to the NICU for recovery. Within an hour, he was completely stable. We just came from visiting him, and he is still groggy and sleepy, but looks fantastic! We were not able to get a peek at his new belly button, but the surgeon assured us that he made it look like a lightning bolt, just like Eudes requested (kidding). No, he said that they pulled the skin in together and stitched it from the inside somehow and, well, we'll just have to wait and see! Overall, everyone was, once again, impressed with our little super trooper.

So that's the BEST news of the day. They said we can probably start feedings in the morning, and that's the second BEST news of the day. The third BEST is that we both got a chance to hold him today! He's a chunker!!!



No More "O"!!!








Ok, so you probably saw the last picture with his omphalocele hanging out and thought, "YIKES! That looks BIG!" At least that's what I thought. Well, after my big wait yesterday (from the time he was born until 7:15pm), the pediatric surgeon came in to give us the best news EVER: they had already put his intestines back inside his belly and he was doing perfectly well! I was so shocked that they were able to do it so quickly, easily, and painlessly. Of course, I was a bit skeptical because everything I have heard, seen, and read has suggested that just stuffing all of those organs back inside is dangerous and certainly not comfortable for baby. The surgeon seemed so confident, though, and I wanted desperately to believe him. Still, I had to go up to the NICU to see for myself.

So around 7:30, Eudes and I went upstairs and I got to touch, speak to, and love on my little boy for the first time. And the surgeon was right! He seemed content and comfortable. His belly was slightly distended, but it truly didn't seem to be causing him any distress. What was a big dressing is now just a little gauze and saran wrap. What was an omphalocele is now just the end of an umbilical cord. The surgeon had said that it was less of an omphalocele repair at this point and more of an umbilical hernia operation, and he is right. Elias will not have a giant scar that runs the length of his belly. He will simply have a large, odd-looking belly button.

So his surgery has been scheduled for 1:30pm today. Assuming all goes well, we should be able to start feedings as early as tomorrow. Hopefully we will be going home in about a week or so.

This whole thing could not be going any smoother. Everything seems to be falling into place. It is difficult at times... knowing that he is hungry and would like to breastfeed but that he can't... but we have been so lucky and so blessed that it would just be selfish and foolish of me to complain. He is so beautiful and so strong and so perfect!!! Thank you God and family and friends!

Wednesday, July 28, 2010

WELCOME, BABY ELIAS!!!




Well, everything went perfectly for the birth of our baby boy, Elias Matthew Clarke!

He was born this morning, at 11:11. He weighed 9 lbs 1 oz!!! BIG BABY!!! He received a perfect Apgar score, and is healthy, healthy, healthy...

We were able to see him before they took him to the NICU. We then went to recovery and soon after, Eudes got to go up and spend a couple of hours with him. He is not on a respirator, and so far no news on what they will do about the omphalocele. Here are some pics from his birth. ENJOY! We will be updating frequently.



Tuesday, July 27, 2010

Bye Bye Baby Belly!!!


Just a quick picture as a reminder of how HUGE I am!!! Here are some comments I've received in the last couple of days:

"Are you sure there's only one in there?"
"Oh my God you're HUGE!"
"You aren't having twins, are you?"
"You should've popped, like, yesterday!"
"Holy PREGNANT!"

Am I sad that soon this baby will no longer be moving around inside me? HELL NO! Get him out!!!


I am sad about the ending of an era, however. The last few weeks have been tough on me mentally and emotionally because, as much as I want this new baby, Julia and I have been "buddies" for two and half years now. She will never be the youngest again. She will never be my only (biological) child again. She and I have grown so close, I don't want that bond to weaken. So I have been trying, as best I can, to make every moment count... make it last. I will miss our "girl time" when Elias comes home, but I hope that she will always know how much I love her. She is my baby girl. I can't help but feel a certain sense of loss at our gain of this new life.















Well, folks, to quote Sylvia Plath, "I've boarded the train/ There's no getting off"

Until tomorrow!!!

Friday, July 23, 2010

Preparing...

It is Friday evening, July 23rd. Elias Matthew Clarke will be here in approximately 4 days, 10 hours, and 30 minutes.

Our last ultrasound was at 36 weeks and it was performed here in Binghamton. At that time, baby Elias measured in the 75th percentile (again) at about 6 lbs. 8 oz, and his O was about 5 cm in all proportions and stable in growth. I am now 38 weeks, 5 days, so he probably weighs about 7 1/2 lbs. or so - about the same as Julia did when she was born. Our last two appointments were in Syracuse. Although we did not receive measurements, everything checked out fine. So I think we are all set for his birth. He should do well. Eudes and I both feel (instictually) that he will do better than expected.

Everything here is ready for him when he is ready to come home.

The plan is this: Tuesday night my mom will come over and spend the night. Eudes and I will leave at about 7:00am Wednesday for the hospital. I have to be there by 8:30. The c-section will begin at 10:30. This is, of course, if there are no emergencies occuring that will delay our procedure. Assuming the timeline holds, he will be born by 11:00. They will clean him, wrap the O, get his vitals, and whisk him away to the NICU. In the NICU, doctors and nurses will do a thorough assessment of his health, including examination of the O and its contents and an additional fetal echocardiogram to ensure that there are no defects that weren't detected in the first one. They will hook him up to an IV for fluids/nutrition/medication, place a tube into his stomach to suck out the contents, and attach an oxygen monitor and possibly a ventilator (amongst other tubes/wires, most likely). They will then decide on a course of action for repairing the O.

Meanwhile, they will stitch me up and I will be sent to recovery. Before moving me to the room where I will stay for the next 4-5 days, they will wheel me to the NICU to see him. Daddy, of course, will go too. He might get to go even sooner than I will, which is preferable, as I'd feel better having him present to comfort our little guy and hear what the doctors are saying. I'm not sure at what point they will discuss "the plan" with us, but I'm assuming within the first hour or two of his birth. It's my understanding that we will be one floor apart while I am recovering in the hospital, and that we will get to stay with him pretty much all day, if we choose.

Eudes will be staying with me in the hospital for those four days. My mom will take care of the kids and our home and dogs while we are there. She will bring them up to see us, but as I've said before, no one is allowed in the NICU except parents and grands. If anyone would like to visit Eudes and I, we are more than happy to see you! I will post directions/hospital info/room number as soon as we are settled. Just give one of us a heads up first so we can make sure to be in the room when you arrive.

We will bring our cameras and laptop so that we can download and post photos both here and on Facebook. I will have plenty of time to blog, and I will include each and every piece of info we receive ASAP.

I cannot wait to meet him! For the longest time I had a fear that all I would see is the defect, not the baby. But now when I think about him, I see a whole and complete being, with a body, face, voice, and personality, and although I simply can't imagine loving anyone as much as I love Julia, I know my heart will instantly and exponentially increase in its ability to love as soon as I see him and hear his cry.

A very special thank you to all who were involved in the planning and/or who were in attendance at my SURPRISE baby shower! I was truly shocked. We had a great time and it was so nice to receive so much love and support from all of you! We are beyond blessed to have such amazing and generous family and friends! We love you! Talk to you all soon. Take care!

Thursday, June 24, 2010

6 lbs. Already???

On Tuesday I went to Syracuse for yet another biophysical profile and non-stress test. Our little guy weighed in at 6 lbs. even! That means that he gained a whole pound in one week, and he is above the 80th percentile for growth. This is excellent because most O babies are underweight. Because he is head down and facing my spine/left hip, they couldn't get a good view of the O, and they were unable to measure it at all. His kidneys are slightly enlarged (+2mm), but the perinatologist indicated that he would only be concerned if they were 10mm+ larger than normal. So no real concerns there.

Everything else looked so good that my perinatologist said it would be ok to see my midwife here in town for another two weeks. That means I will only have two appointments in Syracuse before I deliver. WHOOP WHOOP! Only 4 weeks and 6 days until he's "out of mah bellay!"

Today is my last day of work. I am psyched about it, but a little concerned that I won't be able to muster the energy to keep up with Julia in these last weeks. It will be an adventure, I'm sure. Until next time...

Friday, June 4, 2010

A General Update

Well, in the past month we have had 4 ultrasounds and non-stress tests - one each week. Every one has been good news. At our last appointment - 31 weeks - our baby boy measured 4 lbs., 2 oz., which is in the 76th percentile. That's a really good thing, because it means his abdomen is not lacking in circumference and there will be more room more quickly for the intestines to descend.

Which leads me to my not-so-good news. We were originally told that our baby's "O" was relatively small and that, shortly after birth, they would take him into surgery to return the contents to the abdominal cavity and then sew up the abdominal wall. We were looking at a stay of 1-2 weeks in the NICU. However, we met with the pediatric surgeon on May 12th, and he indicated that, based on the size of the omphalocele (now measuring just over 5 cm in its largest dimension), our baby will have to undergo various procedures over the course of a month. First, they will sterilize the area and place a plastic silo (or dome) over the omphalocele. They will keep him on his back in the NICU with a mesh "chimney" wrapped around his middle to keep the silo centered over the opening in his abdominal wall. There will be slight pressure applied to the sac. Hopefully, the combination of pressure and gravity will help the intestines recede back into the belly. This may take days or weeks. We won't know until it's happening. During this time, they will place an IV either in his arm, leg, or scalp to feed him. As he grows (which they assure us he will using the IV feed), there will presumably be more room for his bowels on the inside. Once the majority of the intestines have returned, they will force the rest and then close the abdominal wall, leaving a rather larger, vertical scar. They will attempt to create a realistic-looking belly button for him, but the surgeon warned that it is nearly impossible to duplicate a real belly button.

If all goes well with the procedure and the surgery, we should be able take him home as soon as the stitches can be safely removed, he is nursing and having normal bowel movements, and there is no threat of infection.

During this month or so that he will be in Syracuse, we will be trying to manage life as best as possible. On one of the discussion boards I follow online, a woman said something that I found very reassuring. The NICU nurse that was in charge of care for her infant told this new mom, "Your baby will know when you're here, but he won't know when you're not." I plan on repeating this to myself often, and hopefully that will take the rough edges off the guilt that I am already experiencing. The NICU visitation rules are super-strict. Only parents and grandparents are allowed. There can only be two visitors at a time, and one MUST be a parent. So even my parents can't go see the baby at the same time. And being that Julia will not be in daycare, either Eudes or I will have to stay with her while the other visits the baby, and then we'll have to trade off. It's sad to think that we won't get to spend time with him together very often.

We CAN stay at the Ronald McDonald house in Syracuse while the baby is in the hospital, but the more we consider this, the less viable an option it seems. Both Eudes Jr. and Isaiah have camp Sertoma every day - Papi as a pair counselor and Isaiah as a camper - up until the second week in August. They need to be here in Binghamton to catch the bus in the morning and afternoon. Julia needs us. We have the dogs, the cat, the fish. The lawn needs to be mowed and the house vacuumed. So our current plan is to drop the boys at the bus stop each morning, drive together to Syracuse, and one of us visit the baby while the other takes Julia somewhere in Syracuse to do something - whether it's a park or a beach or the zoo or the mall - for a couple of hours and then we'll switch. I have considered putting Julia in daycare a month early, but Eudes seems to think this is a bad idea. He says that her life will already be disrupted by having a new sibling and that we should try to make it as "normal" for her as possible. I feel torn. I think it might be better for her to be at school, where she doesn't have to spend 3 hours a day in a car. In any case, it seems impossible that we would stay in Syracuse for any length of time beyond my recovery from the c-section.

Even though I can't quite comprehend how everything will work out, I know it will. And even though it's going to be tough, I am still excited about meeting our new little one. I can't wait to see what he looks like and touch his soft skin and smell that newborn baby smell. We may not be able to spend as much time with him as we'd like to when he's in the NICU, but I know we will compensate for it when he gets home. As of now, we only have 7 weeks and 4 days to go. I have three weeks left of school, my brother's wedding, two more weddings, and then he'll be here. It's not that long...

Last thing - I know this is a crazy long post - we think we have settled on the first name, although the middle name is still in limbo. We think we will name him Elias. It's a combination of all three of the other kids' names and it's original. Middle will probably be either James, after my father, or Joseph, after Eudes' mother (her middle name is Josefa). There is an outside chance that we will choose a middle name that is NOT a family name. When we know for sure, we will certainly let everyone know.

Thursday, April 29, 2010

More Good News

On Tuesday we went back up to Syracuse for our ultrasound and fetal echocardiogram. The ultrasound showed excellent growth of our baby boy - at 26 weeks he weighs approximately 2 lbs. 5 oz.! Chubby! The omphalocele has grown in size, but proportionately so, which is to be expected. It is about 3-4 centimeters in diameter, or an inch and 3/4. Not too bad considering he is probably about 14-16 inches long from head to heel.

The fetal echocardiogram went smoothly and the results were also excellent. Baby has no visible heart defects! The pediatric cardiologist went on to explain that, under normal circumstances, the chance of a baby being born with a heart defect is about 1 in 100. After checking the heart from many different angles and ruling out 96 various defects, our chances of the baby having a heart defect that wasn't identified on the sonogram is about 1 in 10,000. He said that there are four different defects that cannot be 100% ruled out on sonogram. One of those, called a Ventricular Septal Defect (VSD), is sometimes associated with omphalocele. This is a hole in the wall between the ventricles - or bottom chambers - of the heart. They tried to get the best view of that structure that they could and couldn't find any defects there. When the baby is born they will perform an echocardiogram on him to be sure, but the cardiologist seemed pretty confident that they won't find anything.

Overall, it was a great day! We received more pictures, though none of them were 3D or any better than the ones I've already posted. As the baby gets bigger, it gets harder to see a full profile. I know this from the many ultrasounds I had when pregnant with Julia.

So what happens from here? On May 12th we will meet with the pediatric surgeon who will be performing the surgery to repair the omphalocele. We will hopefully get an idea of what that process will look like in terms of type and number of operations, length of stay in NICU, etc.. Starting in two weeks, I will be visiting my regular mid-wife's office weekly for non-stress tests and fluid level checks. This means that I will sit in a nice recliner with a cup of juice while they hook two monitors up to my belly: one that measure uterine contractions and the other that monitors fetal heartbeat. Then they will measure my uterus to make sure it's within normal range. Additionally, we will continue to go to Syracuse for growth monitoring ultrasounds. We will have one at 30 weeks and another at 34 weeks, and then I think they will start seeing me weekly for ultrasounds at 36 weeks. By this time school will be out, so it shouldn't be too bad.

Then, provided all goes smoothly, I will return to Syracuse on July 27th for blood work and to meet with the anesthesiologist. On the 28th of July, Baby Clarke will be born via repeat c-section at approximately 10:30am.

Although I still feel a certain sense of loss because this pregnancy is not perfect, I am overjoyed and feel incredibly blessed that the dark side of this situation is only a brief shadow. He will come home with us and live a completely happy, healthy, and normal life. There was a point in time when I felt cheated out of my "natural birth" plan with Julia. I felt I had somehow failed as a mother because I needed modern medicine to safely deliver my child, and was constantly thinking, if this had been a century or more ago, one or both of us would most likely have died. Now I thank God for the advances in medicine that have made and will make it possible for us to raise this family. I feel very fortunate. I also feel very, very, VERY fortunate that we have excellent health insurance!!!

Thanks once again to our family and friends for the support. I'm sure some of you probably feel like it's all we talk about these days. I know that gets tiresome - hearing someone whine about the same issue over and over again. We appreciate your patience and willingness to listen, your generous offers of assistance, and your undying optimism. We love you guys!

And no, we are no closer to settling on a name than we were two, four, six months ago. We are not withholding - we simply can't decide!!!

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.