Elias Update

For those of you (if anyone) checking in from time to time, I thought I would update you as to the status of our not-so-little guy.

Elias is 9 months old already! He is about 29 inches long and weighs nearly 24 pounds! What a big guy. He is a very fast crawler and is even cruising around furniture. He has let go and stood unassisted for a few seconds at a time even. I think he'll be walking within the next month or so. As you can probably guess from his weight, he LOVES to eat. I am still breastfeeding and pumping, but he is on regular table food and will eat just about anything. And everything. He can drink out of a cup, and we will be getting rid of the bottle as soon as I am finished with the school year. He is a content baby. He loves his big sister and brothers. He has such a kind and patient spirit. I can't imagine my life without him.





As for his BWS, it is so mild most people don't notice any difference. I see no difference in his limbs, only a slight discrepancy in his face. He has received a clean bill of health from the surgeon and at all of his regular physicals. He has consistently been in the 97th percentile for weight, and is about at the 50th for height. In December, he was seen by a genetic specialist and was given a clinical diagnosis of BWS. However, the doctor said it was an extemely mild case. And since he was treated for his hypoglycemia at birth, he has been on-time if not ahead for all of his milestones. He will need a lift in his shoe as he grows because his left side is longer than his right by just over a centimeter. The lift is only to ensure that he does not develop scoleosis as he grows. He will probably be fitted for that this summer, when he returns to the geneticist for his one-year check-up. He will also see the surgeon again at a year, but his belly star is perfect. It's slowly moving toward being an innie, even. Just amazing.

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.

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!

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!

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!

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.