Monday, September 29, 2008

September 29

Well Shnookie, after much persistence on my part, we have a new surgery date. October 13 you are scheduled for your EUA, and most likely, glaucoma surgery. We saw the ophthalmologist today and she confirmed what I already knew—you have ptosis (droopy eyelids). Even when you are at your most alert, those that interact with you think you are sleepy or sleeping because your eyes only open a crack. Your vision can’t develop that way, so we have an appointment to go see another eye specialist. She will recommend a separate eye surgery soon after you have a chance to heal from the glaucoma surgery. This puts off the ostomy reversal a bit longer. I am not sure who is more or me.

I am beginning to pray for this upcoming series of surgeries now. Best case scenario would be they get in there on October 13 and decide glaucoma surgery isn’t necessary. Then the doctor could just get your prescription and measurements for contacts, we could move on to the ptosis surgery sooner, and the ostomy reversal would not be delayed.

My spirits lifted when I got home and checked my email this evening. In my inbox was the link to the rest of your photos from Miss Kris. You are a beautiful baby. I love our little family.

Sunday, September 28, 2008

September 28

You are becoming stronger all the time and you have learned three new tricks:

1) The morning after Ike you were laying on your tummy with Daddy and you picked up your head and turned it to the other side! I was in the other room, so when Daddy told me what you did I wasn’t sure he and I had the same definition of head turning. He promised me it was true, and turned your head back onto the left side to prove it. You greatly favor your right side, and sure enough, you flipped your head over again to be more comfortable. You do it in two steps…lift up your head and put it face down, the lift again and turn to the side. Tears sprung to my eyes, I was so proud of you! Daddy and I kept turning you onto your left side so we could watch you do it over and over again. After about the sixth time you gave up and just took your nap on the left. Goodness you are a big girl! Since then you have turned your head several more times, especially if you are angry about something (usually your glasses).

This is a picture of you and Daddy snoozing right before you showed us what a strong baby you are.

2) Because of your reflux, you are a side sleeper. Twice this week I woke up to find you had rolled onto your tummy during the night! While I am very impressed, I’m not really loving this trick. I am afraid once you make it onto your tummy you will try to turn your head and not have enough strength to make it all the way over. So now I wedge a tiny little pillow by your lower tummy so that you can’t roll during the night. Leave your stunt work for the daytime Missy Moo.

3) You open your eyes for your Granddaddy better than you do for anyone else. He holds his finger out and says “That’s number one” and then holds two fingers out and says “That’s number two”. He also pulls out your index finger from your little fist so that you were counting along. While we were staying with him during Ike, you got a lot of number one and number two. The day our power was restored, Daddy and I left for a couple hours to clean out our fridge back home. When we came back we were told if he said “Show me number one” that you would hold up your finger with both hands on your own! I have not seen this one myself, but several eye witnesses tell me it is true. You must be a genius baby!

Tuesday, September 23, 2008

September 23

A lot has happened since I last wrote to you!

Last week Houston was hit by Hurricane Ike. We lost electricity in the early hours of the storm and it wasn’t restored till nearly a week later. Granddaddy and Grammy have a generator, so Saturday morning you, Daddy and I packed up and went to their house to stay until we got power at home. In the meantime, the city was blessed with gorgeous weather and we all were completely comfortable without AC. School was canceled for Uncle Clayton and Auntie Shelby, and Daddy had a couple days off work. We had fun playing board games and soccer, eating outside together, and sleeping in the living room with a big industrial sized fan on mattresses pulled from the bedrooms at night. The first few nights you felt a little homesick and didn’t sleep well, but for the most part you were thrilled to stay at Grammy’s where you were held almost constantly. Overall our damage was minimal, with the greatest loss being over 150 bottles of breast milk. Unlike formula, it has the cholesterol that is so important in treating SLOS and with your digestive issues it is much easier on your entire system. It was hard for me to have to throw it out when it thawed. But with the help of neighbors, we were able to save about 100 bottles. That sounds like a lot, but really is only about 10 days worth. Still, I am not worried. God knows what you need and provided you with plenty to begin with; I am sure he will replenish our supply.

The evening of Ike, when the wind was just starting to pick up, we went outside so you could catch your first breeze. We saw the first piece of debris come down the street and you, believe it or not, caught it! You are a natural athlete!

Then you started to blow away in the storm...but don't worry. I caught you. Look at your sweet little face! You loved the wind in your hair!

We had a couple of doctors appointments last week. We met your new pedi surg Dr. Kim—I like him a lot. He said your colostomy and G-Tube site look great, and that the anoplasty was a complete success. I asked him how long he thought it would be before reversing the colostomy and got the answer I was hoping for…he thinks you are big enough and ready for the reversal! Even though your stoma looks good and your skin hasn’t had any break down, it is becoming more difficult to care for your ostomy site. With each passing day you squirm and wriggle a little more causing the bag to leak more often than in the past. I never thought I would so look forward to changing dirty diapers!

But your eyes are the most important thing right now. We met with the glaucoma doc and the plan is to have an Exam Under Anesthesia (EUA) to check eye pressures. Depending on what they find, you will either have surgery while already under, or be fitted for contacts and a more accurate prescription. If surgery is necessary, you will take a few weeks to recover from that and then hopefully we will reverse the ostomy within the next month! That is about 10 more ostomy changes…let the countdown begin!

Sunday, September 7, 2008

September 7

Last night was Grammi the Great's birthday! We celebrated with a spa day for the girls and dinner at Escalante's with the rest of the Stephens side of our family. You never knew you had so many aunts and uncles and cousins. You snoozed most of the time...even through all thirty of us singing happy birthday and yelling "Arrrrrriba!"

This morning Miss Kris came over and took your first set of baby pictures! One of the major disappointments of your hospitalization was that I missed your newborn pics. Kris does such an amazing job and I was so looking forward to them. But at three months you are 9 and 1/2 pounds and 20 1/2 inches (still smaller than I was at birth!) and the pictures still show you tiny and precious.

Miss Kris was so considerate of your sensitive eyes and didn't use a single artificial light or flash. Everything was done with natural light. You were such a good girl and had only one accident on Mama and Daddy's bed! Fortunately it was on Daddy's side--since the pictures came out absolutely precious, it was totally worth it. At least for me. I hope Daddy agrees.

Kris let me see the first picture on the blog while we were still shooting and immediately tears pooled in my eyes. You are just so yummy and sweet I can hardly stand it! We can't wait to see the rest!

Friday, September 5, 2008

September 5

I used to not care for cats. Growing up we mainly had dogs, and the two cats we did have weren’t very friendly. In college I wanted a puppy so badly but Daddy said no. I think he knew that puppy would be like Mary’s little lamb, and everywhere Mommy went that dog would be sure to go. Dad feels about dogs like I do cats, and I think he didn’t want one visiting his apartment all the time. He did agree to a cat and I was so desperate for a pet I settled. Lucky for me, the cat we got knew I preferred dogs and did the best she could to act like one. Misty comes when you call her name, plays fetch, chews on small objects, gets into everything and I on several occasions I have caught her drinking from the toilet while a full bowl of water sat only a few feet away.

Two years ago, on Christmas Eve, Mema found a tiny kitten in the cold rain. Christmas day Daddy and I drove to Mema’s, washed him up and brought him home so I could take him to the vet the next day. He was malnourished, had all sorts of worms, mange, eye herpes—the vet wasn’t sure he would make it. But I woke up every two hours for a couple weeks to syringe feed him. We named him Nicholas, call him Nicky. He pulled through just fine and now he is a huge, healthy, beautiful cat. It’s amazing how pets become part of your family so quickly.

I woke up last night at midnight to feed you and while I was pumping Nicky jumped up onto the edge of your bassinet while you were sleeping. Immediately the adrenaline rushed in and I yelled at him “NO!”; I had visions of him sitting on you and suffocating you or accidentally clawing you up. Startled, he looked at me and jumped down, but when he did his weight shifted and your bassinette rocked. I chased him out of the room, down the hall and behind the couch threatening to clobber him if I ever caught him looking at the baby again. When I got back to the room I shut the door and decided all cats are banned from any room you are sleeping in. And just like that Nick went from being Baby Number Two to Public Enemy Number One.

As I write this I hear Nicky scratching at the door. I found enough grace to fill his food bowl this morning, but I am still fuming at him for almost hurting you. I feel bad because I know you scared him just as badly as he scared me. He tries to stay pretty far away from you, but he still thinks of your bassinet as his territory. The nine weeks you were in the hospital and Daddy and I stayed at Mema’s, Nick slept in your bassinet and Misty slept in your crib. I thought once you claimed your beds with your scent they would relocate. I think he just got confused. And even though the bassinet rocked a bit, it wasn’t even close to tipping over. As it is the cats must feel neglected since now all my attention is on you. Misty usually sleeps right next to me at night and Nick by my feet—I hate to take that time away from them. But then, I feel bad for feeling bad because it’s my job to protect you no matter the cost. So keep on scratching little buddy—it’s not gonna happen.

September 2

Daddy loves you so much. Sometimes at night you and I take a bath at the same time...while I relax in my tub, Daddy bathes you in your little tub by the sink. I can hear him on the other side of the wall laughing at you the whole time. Every so often I will ask what is so funny and he will say, “Nothing, she just makes the cutest faces!”

You sleep in the bassinet right next to my side of the bed. When I think you may be spitting up, I reach over and touch your mouth and the sheet beneath your head to make sure they are dry. Tonight Daddy got you settled into bed without me, and when I came into the bedroom you were on the other side of my nightstand. I started to move you closer and Daddy stopped me because he thought the movement would wake you up (doesn’t he know you could sleep through a tornado?). I had earlier considered moving you away from me at night little by little until you made it into your room. So I left you there even though I didn’t want to and climbed into bed. It wasn’t two minutes later that you made a strange noise and I flew out of bed to check on you. Turned out to be the beginning of hiccups (the first one fakes me out every time). Daddy just rolled over in bed and said, “Go ahead, move her back over”. How am I ever going to get you into your own bedroom? At least that’s one good thing about your slow growth…most babies would have outgrown their bassinet by now!