Carter's First Surgery

After many times of going back and forth, we've finally decided on a surgeon to do Carter's first surgery. A plastic surgeon, Dr. Siddiqi, will be doing it on August 26th. His plan is to repair the lip, insert a prosthetic hard palate, and stitch together the soft palate on that day. Carter will also get a tube put in his ear. He will have to spend at least one night in the hospital, maybe more depending on how well he does afterward. When he turns one year old, they will completely repair the soft palate and replace the prosthetic with a bigger size. At the age of two, they will completely repair the hard palate. We met with the doctor today, and he also wants us to get a test done soon to find out if there is anything they can do to help Carter with his facial palsy. Michael and I are really excited for Carter's surgery, but know that it's going to be bittersweet since our baby's face is going to change drastically. Carter is scheduled to have another echocardiogram done tomorrow to check his heart. After that we are free from major appointments until July 14th.

Not much else to report around here. We've just been hanging around the house. Michael got the kids a really cool swimming pool and they played in it ALL.WEEKEND.LONG. Needless to say, they were exhausted by the time Monday came around. Mikey's still being an awesome big brother and always concerned if Carter has his "ochijen" in his nose, and Jovie's mostly concerned with if Carter has a dirty diaper or not. Leave it to the man to be concerned with the really important stuff and the woman to worry about the smaller things lol!

Why I Love Holland

When Carter was born, Mike's Aunt Patti sent us a copy of this piece written by Emily Perl Kingsley...thank you by the way :)

Welcome To Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Today I truly appreciate Holland. I've become a different mother since Carter was born. The things that used to seem huge to me are no longer a big deal, and the little things really count. As a family, all of our priorities have shifted to the things that are really important. Sometimes when people hear about Carter's condition, they get a sad face and tell us how sorry they are. I REFUSE to be sad about who Carter is and who he will become. He's our baby, and he's already moved mountains in my eyes. Last night we noticed that Carter was actually starting to look at his play gym toys. I mean REALLY look at them. He was studying them for a long time, and it was hard to pull him away when it was time to get him ready for bed. Today, he's sitting in his swing and he's watching the lights above him flash. For any other kid, this would seem like an easy task and something that wouldn't need to be celebrated... but for Carter this is HUGE. Just watching him is bringing tears to my eyes. So for right now, at this very moment, I am going to enjoy Holland and be appreciative that we are lucky enough to spend some time here.

We're Complete

I finally got some pics of the kids all together today. Mikey even took some pics of Carter and I, and Jovie and I. Jovie took the one of Mikey and I. I've decided that there aren't many pics of the kids with me since I'm typically the one taking pics, so I'm going to try very hard to work on getting more pics of myself with the kids. I even snuck a pic in of Carter without stuff on his face. What a cutie!

Things are getting a little more normal around here now. The kids are a bit bored, but I'm trying to find things to keep them busy. Luckily, Mikey's got T-Ball games twice a week. We're going to have to keep Carter on lockdown for awhile, so it's a summer of homebound for us. Carter has an appt with his G tube surgeon tomorrow to hopefully get his button. I'm also meeting with the cleft palate nurse to discuss some things.

My grandma and grandpa visited last week, and we had an awesome time. Thanks for all of your help G&G. We love you, and wish that we could have spent more fun time with you.

Another Appointment

Carter had another appointment today. This time it was with Urology. I thought that it was going to be really hard getting him in and out of the hospital with oxygen and monitor in tow, but with the stroller it ended up being pretty simple. It just took me a long time to get everything loaded and unloaded. The appointment went well. The doctor said that Carter's urine refluxes from his bladder back up into his kidneys. We already knew that, but he was just confirming the diagnosis. He thinks that Carter will probably outgrow it by the age of 3, but if he doesn't then he'll have to have a surgery to fix it. Until then he has to stay on a low dose of antibiotics to prevent a urinary tract infection. The doc also said that his kidneys, although fused together, look perfectly healthy and he has no reason to believe that they won't stay that way. We go back in six months to get an ultrasound to see if he still has the reflux. Yay! The next appointment is on Friday when we see an Opthalmologist and his regular pediatrician.

Carter's still enthusiastic about the bottle. He took another 30 today!

Bottles

Carter started off the day with a huge bang when he took 28 cc's from a bottle. That is a HUGE step for him since the most he's ever taken is 20 and that was on a rare occasion. It wasn't even so much the amount he took, but more his enthusiasm for taking it. I can see that he's really starting to enjoy bottle feeds which can only help him to improve. His Occupational Therapist wants him to try taking the bottle with every feeding during the day. We only got to try it a few times today because of a doctor's appt, but at his night feeding he took another 35!!! That's half of a full feeding for him. We couldn't be prouder of our big boy.

He had an ENT appointment today, and it went pretty well. Nothing much happened except for making a game plan for Carter's future procedures. The doctor told us that he's going to wait until September to fix Carter's lip and put a tube in his ear. We were told in the NICU that it would happen in a couple of weeks, and the thought of a hospital stay so soon was pretty daunting so I must say that we feel relieved that Carter can have some time to just grow.

More Appointments

Carter is still doing very well. He's kind of gotten his days and nights a little mixed up, but we're working on that. My grandparents are visiting, so Carter got held for a long time by his great grandma today which he thought was freakin' awesome! His new occupational therapist came for a visit this morning, and gave us some ideas on how to get Carter to improve on his bottle feeding. It feels really good to get started on this stuff, and to feel like there's somebody there with experience in this area to help. Afterwards we took Carter to his pediatrician for a follow up. Carter now weighs 8 lbs 1 oz! The doctor really wants to see him gain weight a little quicker, so we adjusted the amount he'll get per feeding. Hopefully that will work. I'll update again next week after his ENT appointment on Monday. We should get an idea of when Carter's lip surgery will be after that one.

Thank You

Carter's still doing wonderfully. He really seems to have adjusted to life in the McMerrick household. I think that Daddy buying him a crib toy just like the one he had in the NICU has helped a lot as well (I knew that we'd end up with those monkeys somehow). Life has definitely been hectic, but it's getting easier as we all get used to it. We wanted to just say thank you to everyone who's supported us through all of this. Thank you to those who have helped us out during this last week. We really appreciate the love and support you have given, and the exellent dinners ;) . Also, thank you to our railroad family for the adorable train bank and perfect card and note for Carter. He loves it!

10 Weeks 1 Day Old

Carter's still doing great at home! He did decide to pull an all-nighter last night... he wasn't fussy, but didn't want to sleep. He was fine as long as I was holding him...go figure :) We can definitely tell that he is much happier here, and loves all of his new toys which would include his brother and sister. We're starting to get into a routine, and I think that by the end of the week we'll have it all under control. Thank goodness Michael is off from work until next Monday. There's NO WAY I could have done all of this without him. It's hard enough bringing a new baby home, but add monitors, oxygen, g tube stuff on top of that and it gets really overwhelming. I think that we finally figured out what Carter's problem has been with the bottle, so I'm hoping that we're on the right track with that now. He took the most that he's ever taken in one feeding today with 20 cc's. He did that really fast too, and that's close to one third of a whole feeding. Yay Carter! I've started to make his follow-up appts, and most of them are in two weeks. We're going to be traveling back to the hospital quite often for awhile.

Picnic Day

We finally went on our picnic! It was a marvelous day. Carter handled the car ride home perfectly, and the kids were thrilled to finally meet him. He's been wonderful all day, and it's amazing to see how much better he's doing now that he's home. I expected subtle changes, and am pleasantly surprised by how much he's improved in such a short period of time. The updates will probably come a little less frequently now that we've got our hands full, but we'll be sure to update when we can. Thanks to everyone who's helped us through this tough time. We couldn't have done it without all of you.

Tomorrow

Hopefully there won't be any rain at the picnic tomorrow :)

That's really all I have to say.

Getting Ready

We're getting ready for picnic day. It's happening very very soon. Carter had an echo today, and had to be sedated for it. Luckily, he had no negative reaction to the drug that they gave him. We also got all of the home care equipment ordered, and will be going to the hospital tomorrow to learn how to use it. All that will be left is the mountain of paperwork, and saying goodbye to the support system we've had for 10 weeks.

He's Still There

Ooooops. I guess that that I made the post sound like Carter went on a picnic yesterday by saying the ENT wanted to see him in two weeks. He's still up at the hospital, but is anticipating his picnic on Thursday or Friday. We think that Thursday looks like a beautiful day for an outing, but we'll have to wait and see what the doctors think.

Meetings

Today was quite the busy day for everyone. I met with Carter's new developmentalist, and I must say that I was very impressed with her. She seemed very optimistic about what Carter can do, and enthusiastic about getting started. She will be the one who oversees his developmental therapy. She said that an occupational therapist will come to our home 1-2 times a month, a hearing specialist will come once a month, and a vision specialist once a month. Carter doesn't seem to have anything wrong with his vision, but he can qualify for services just because he can't close that eye very well. We'll take all of the help that we can get.

Carter's ENT came to see him today and decided that he didn't need the sleep apnea test. The only time that he's had problem with apnea is when he was on sedation, so they feel there's no reason for it. They want to see Carter back in two weeks, and then he'll have his lip surgery done two weeks after that. He'll get the tube put in his ear at that time as well.