Wednesday, April 29, 2009

April 29


I forgot to show you this picture from the morning of your surgery. Remember how I told you that we missed each other all day Thursday? Well Friday morning Daddy got you out of bed while I got dressed and packed to head to the hospital. And when I came in to say good morning, you kept smiling and smiling at me! I am sure part of it was that you were excited to get your eyes fixed. But I think really you were just glad to hear I was around. And the fact that you smiled like that at me at 4:30 in the morning says volumes...you and I are not morning girls. That smile totally made my day! This was just one of the many big grins we caught on camera.

video

And this is a video of you from tonight. Daddy was doing his ab excerises on the floor next to you and you thought it was so funny. You laughed for several minutes at his breathing. Cute, cute baby laugh. If that isn't motivation for Daddy to do his work outs, I don't know what is!

Sunday, April 26, 2009

April 26

Hey Sweetness!

I am so happy to say that the surgery on Friday actually happened and you have your eyelid lift! I was worried for that morning because you weren't taken away for our 7:30 surgery until about 9:30. Whenever we run behind schedule, your veins shrivel from dehydration, and a very difficult stick becomes nearly impossible. In the past we have had one surgery cancelled because they couldn't start an IV, and a couple others that have taken at least a dozen attempts. I kept warning the nurse about our past problems while we were waiting, but there was nothing that could be done because our doctor had an emergency 6:00a surgery and was still in the OR. Sure enough, when it was over the anesthesialogist apologized for turning you into a pin cushion; Daddy and I came home to count 27 stick marks. I am just so grateful they finally got one, because if they had cancelled this surgery, it might have been months before we got another chance.

Right now you are doing really well. You don't seem to be in too much pain or even very uncomfortable. The worst part for you is going to sleep. You have always been a good sleeper, and go down without a fuss. But the last couple of nights you have cried for 30 mins to an hour, I think out of frustration. You want to go to sleep, but getting there is hard when your eyes won't shut. Thankfully, when you do finally drift off, you seem to sleep well with your eyes open.

This has been a really tough surgery for Mama. We have had either nine or ten surgeries in the last ten months, and this one has been by far the worst for me. Probably not for you--I think the ostomy reversal was the most painful. But I have had a hard time seeing you look the way you do. For the first time I cried when I saw you in the recovery room. Your eyes were so swollen, bruised and bloodied--I wasn't prepared for that. I should have been. Other SLOS parents whose kids have had ptosis surgery warned me that it would look like you had been thrown through a windsheild. I just don't think there was a way as a parent to possibly brace myself for the way you would look. Plus, with your eyes pinned open, your expression (although normal for any other kid) looks surprised and scared to me, since I am used to your cute little sleepy look.

Because of all this, I haven't handled this weekend like I wish I could have. I have somewhat withdrawn from the situation, shied away from being the primary caregiver, and asked Daddy to do most of the dirty work. I went to work for several hours Saturday morning, and when I was home and you cried, suggested Daddy be the one to comfort you. Even when it was up to me, I averted my eyes from you and didn't look you in the face often. I am sorry. It wasn't that I was squemish of the blood or the way you looked. And it definitely wasn't because I didn't want to cuddle you close. It was because it looked so shockingly painful, and I was afraid of hurting you. I have had to do a lot of things for you that caused pain, and have seen you go through more than I would have ever imagined. This one was too much.

I began to question myself a little if this was the right thing to do. I started thinking how well you were doing before the surgery with opening your eyes, and how you loved wearing your contacts. Grammy assures me it was necessary, and while we thought you looked like you were opening your eyes more, those who didn't know you still always thought you were sleeping. And I know how critical this surgery is to being able to hold your head up, which leads to the rest of your development. It was the right choice. But it is a terrible thing to see you go through.

I don't have any pictures for you. Maybe I should have taken a few for other parents whose children will have this surgery, so that have some idea of what to expect. Perhaps it will be easier to see on a child other than their own in order to mentally prepare. And maybe I still will, for their sake. But for me, I have no desire to capture the image on film.

I am not sure how long recovery will last. Already the swelling has gone down quite a bit, the bruising has lightened, and the bleeding has stopped. Your eyes are staying moist, which is the biggest hurdle. And I just keep reminding myself that even though the SLOS group told me it was the most difficult surgery to go through, it had the biggest pay off in the end. Already Daddy and I think you are holding your head straighter, and not as far back.

You and I are so blessed that you have such a strong, sweet Daddy. He took over and did a great job mothering you this weekend. Tomorrow he goes back to work and you and I will be just fine. It helped me to watch how he held you, to see you aren't as fragile as I thought. And the highlight of our weekend was the handful of smiles and laughs you gave us. That shows me more than anything that it looks a lot worse than it feels.

I love you so much, and even though it still isn't very pretty, I love seeing your big, blue eyes. It is going to be so worth it little one, you'll see.

Thursday, April 23, 2009

April 23

Hey sweet baby, I missed you today.

This morning I left home early for a house closing, and Honey came to stay with you before you even woke up. I came home a little after 2:00, and I had an hour and a half at home before I needed to leave for swim team practice. Of course, it was during your nap time. And when I made it home a little after 8:00, Daddy had you all tucked into bed. I have a whole new respect for working moms! It is tough to see you so little. I love and am grateful for both the real estate and coaching jobs, but the next few weeks are going to be hard on us until the school year ends and summer starts up. We just have too much going on during the week.

Daddy left for the gym, and you started fussing. I like to think it was cause you missed me too. Usually we don't come running when you call out from bed, and so usually you don't call. If you are in your crib, you know it means sleep is your only option. But tonight I just had to go pick you up and cuddle my baby for awhile. After a few minutes we both felt better and you were able to go to sleep.

Which is a good thing because you need your rest for tomorrow! Finally we are having your ptosis surgery! The OR is scheduled for 7:30, so we need to be at the hospital by 5:30. That 4:30 alarm won't make any of us happy, but you are going love the difference when you won't have to hold your head back to see. So sleep sweetly, love. It might not come as easily tomorrow night.

Friday, April 17, 2009

April 17


Look who's the biggest baby, practicing eating her prunes!! (Yes, prunes. I am hoping if I can get you to eat a daily serving, then we can cut the Miralax.)

You seem to like them...they are good and messy. I am pretty certain some of them actually got in your mouth!

Tuesday, April 14, 2009

April 14

You were so cute for your first Easter!






We went Saturday night to see the Easter Bunny in your bunny hat that Aunt Shelby gave you, but the line was super long and the bunny...not so cute. So we just waved to the bunny and went shopping for your Easter dress instead.


Sunday morning the Easter Bunny dropped off a basket of goodies for you--a couple toys, hair bows and ties, and some candy. I guess Mr. Bunny didn't know that you don't like chocolate, so Daddy and I have to help you out there. Then we got all dressed up for church, put your hair up for the first time and you looked "faaabulous daaarling".




After church we went to Papaw and Grammy's house for Easter lunch and had a great time. When we got home late Sunday night, Daddy and I went to take out your contacts, and the left one wasn't in there! We looked and looked, but it is just gone. So today I ordered another one, but most likely it won't be in for a couple of weeks. By that time you will have had your ptosis surgery and won't be able to wear them for quite awhile anyway. I am so dissappointed. The good news is that the sty in your right eye has cleared up, so I am praying we will still be a go for surgery on April 24th!

Monday, April 6, 2009

April 6

Hi my big girl! As always, things are changing quickly with you.

We have made the permanent switch to formula. It is going fairly well. As expected, you immediately became constipated from it, so you are on a daily dose of Miralax. It also has made you vomit more often, and at a higher volume, which is rough. The worst part for all of us is when you wake up sick in the middle of the night--usually at least twice. But we didn't really expect you to make a seamless transition. Formula intolerance is just another part of the syndrome. Yuck.

We have been practicing eating orally, and you have been doing such a good job! Thicker foods, such as thin rice cereal seem to be the easiest for you. I am most pleased with the way your tongue goes toward the cheek the food is in. You seem to really want something in your mouth, and chew on Lambie, your sleeve, a burp rag, your hand--whatever is convenient--most all day.

A little over a week ago we did another glaucoma exam under anesthesia. Always the trooper, you came out from the OR not feeling too badly. Your IV was infiltrated, and your left arm is still swollen. Other than that it went as well as we could hope for. No operation was needed, and we don't have to do another EUA until December.

We have gotten your new contacts and you are loving them! You are so much more active and alert, reaching for more things and having better coordination. A sty developed in your right eye over the weekend, so the contacts are out until that heals up. Boo.

You are becoming a silly girl, with a sense of humor the rest of us can't quite figure out. Something will make you laugh one minute, but when we try to recreate it, it just doesn't strike you as funny anymore. We live for those laughs--truly the most beautiful sound to our ears.