Monday, December 29, 2008
Thursday, December 25, 2008
As for your first Christmas, you had a great day! We saw Honey's side of the family last night, and then today Mama's side of the family and Honey came over to eat dinner and exchange gifts. Anytime there is that many people to hold you, you are happy. Not to mention you got a lot of fun gifts that will help you learn and grow! On days like this I wish you were a little more aware of what is going on around you. Still, we started new traditions and did all the things we would do for any other baby. I realize the chances aren't high that your annual Christmas ornament will ever go on a tree in your own home, as intended. If you don't ever leave the nest it will go on a tree in your own room. But imagine if we don't prepare you now and then we get the big miracle. Your Christmas tree would be naked--what a shame that would be!
Tuesday, December 23, 2008
We were supposed to have been at the hospital at 6:30a. So Daddy and I woke up, got everything together, and were saving you to pack up last. At 5:40, right before we were about to get you out of bed I felt the need to call the hospital with a question. Daddy did it for me and that is when we were told your surgery had been cancelled and to call Dr. Feldman’s office. We double checked that our surgery would not be happening at 7:30a, so we went back to bed until the office opened at 9:00a. All the while we were hoping it was a misunderstanding and somehow we would get working in later that day.
About 11:00a I received a call back. Insurance had denied our claim once more. Apparently when our insurance year started over in November, it changed so that it no longer covers any sort of glaucoma care. Dr. Feldman’s surgery scheduler had left a message on our home phone Friday afternoon asking us to call her back. We never use that phone, so we didn’t get the message until Sunday and at that time there was no one in the office to call back. A surgery can’t be pending over the weekend in case someone else needs that OR spot, so they cancelled the surgery until we worked out cash prices. And this time finances aren’t the only reason the surgery was cancelled. Dr. Urso has to submit his paperwork showing he meets Memorial Hermann’s surgeon reqs before he can operate there. So I am grateful we called the hospital, because I would have been extra cranky if we had schlepped all the way down to the medical center for nothing.
If I had known on Friday that the surgery was cancelled, I would have done several things differently. I wouldn’t have cancelled your contact fitting last week. I was advised with her surgery so soon it would be best to wait until after, because we have to pay for the fitting and contacts out of pocket. If something does need to be done about your glaucoma, it would change the shape of your eye and require a new fitting. Now the surgery will be January 12 at the soonest and I am willing to risk being out of hundreds of dollars in order to get some sort of lenses on you. Your glasses aren’t doing you any good and this is getting ridiculous. I could have ordered the contacts 5 months ago, but we keep getting strung along with the surgery. I am afraid if I don’t get the contacts now, January 12 will be cancelled again and I will have regretted putting it off again. So I am going to schedule the next possible appointment.
I also wouldn’t have stayed up the night before making Christmas treats for your surgeons and their families. I wouldn’t have cancelled your appointment with your pediatrician Monday morning so that your immunizations could be updated. And Daddy wouldn’t have taken the day off work (although I am glad he did!). But most importantly I would have had you dedicated at our church’s Christmas Eve service tomorrow night. It would have been a great night to do it for so many reasons, and we have been waiting for so long.
I am sad that you are 6 ½ months old and you still can’t see anything. I am sad that you are 6 ½ months old and you still can’t hold your head up. I am sad that you are 6 ½ months old and you still haven’t been dedicated.
But I have to keep telling myself that God’s timing is perfect. He knows what our needs are and has never left them unmet. I just would love for us to see eye to eye on this one.
It was about this time, on this day 13 years ago that my Poppy, your GreatPoppy died. I so wish that you two had met on this side of heaven. He wouldn't have been able to resist you.
Sunday, December 21, 2008
It is ironic to me that you are just beginning to open your eyes now, when we finally get the surgery scheduled. Before people used to ask me what color your eyes were, and for the longest time I couldn't really say. I could only see the smallest slit and there wasn't enough to be able to tell. Now I can confidently say blue--the same color blue as your Daddy's. Now when we go out people don't assume you are sleeping. They only assume you are sleepy. Surgery is still necessary, especially since your left eye is a little droopier than the right. Symmetry is important. But I love the way you always look toward the light. It tells me that you want to see. And I am encouraged by the improvement you are making in tracking and focusing. In about a month your contacts will be in and you will be shocked at the world around you.
P.S.--As I learn life lessons the hard way, I am going to pass them down to you in these letters.
When you get a haircut, don't be too chatty. If your hairdresser starts telling you her life story, she might get carried away with the sissors...
Thursday, December 18, 2008
Yesterday we had a full day at the doctors with Honey! First we went to see Dr. Feldman, a new glaucoma doctor. It is about time for your next glaucoma EUA (exam under anesthesia) and I realized that by combining it with the ptosis surgery, insurance should cover the hospital and anesthesia fees. Since our regular glaucoma doctor doesn’t operate at the same hospital as Dr. Urso, he referred us to Dr. Feldman. We left Dr. Feldman’s office at with the promise he would get us a surgery date as soon as possible. By I got call from Urso’s office saying he and Feldman had spoken and agreed to do your surgery Monday!
I am so grateful to both doctors. Each of them understood my anxiety to do the ptosis surgery, and both went out of their way to get it done quickly and affordably. Dr. Urso not only coming in to work on his off day, but he is doing it free of charge. They are our vision heroes.One thing I have learned from all this is that TCH isn’t necessarily the best place to have everything done. It is a fabulous hospital, and I love many of our doctors there. But it might not always be the best fit for you. I prefer both of these doctors to the original ones recommended at TCH. Their compassion, bedside manner, time spent with us and eagerness to help you far exceeds the others. It doesn’t hurt to “shop around” and when we aren’t happy with the way things are going, it doesn’t hurt to at least consult with another. If we had met Dr. Feldman four months ago, I have a feeling he would have gotten the ptosis surgery taken care of four months ago.After Dr. Feldman’s office we had a follow up with Dr. Kim for the ostomy reversal. He said everything looks great. Your incision is pretty much healed. It just has a scab, and the stitches haven’t yet melted away. But you are completely off pain meds and good to lay on your belly and curl up. Your bottom is not nearly as sensitive as it was and is starting to heal also. Dr. Kim told us we have to start dilating your bottom twice a day. We put a tapered plastic stick up your bootie to make sure it doesn’t close up from the stitches, and you and I hate it. Last night and I insisted Daddy go first. I told him how Dr. Kim said to do it, and Daddy didn’t even hesitate. He made it look so easy! Then I started to try a couple times, but couldn’t make myself do it. Finally I tried, twice I met resistance and gave up for the night. Tonight went much better. I got it on the first try. For now we use a “9” stick, and next week we move up to a “10”. The goal is a”12” and as you grow we will go up in size. Even though it is yucky and uncomfortable for you, it is totally necessary and the least painful route. And today you had your first two normal stools! So we know your new pooper works! One day you are going to read this and be so embarrassed that I put it online. Sorry.
One more thing. Today you and I went on our first outing all by ourselves! It was only to the grocery store up the street—I can get there by driving through the neighborhood, so if you throw up I can pull over easily to suction you. But it felt so good to go without having someone go with us. I am so appreciative that your grandparents are willing to come pick us up and take us everywhere so that there is someone in the backseat with you. But I miss my independence! I look forward to the day that I can just pack you up and go anywhere we need to on a whim.
(Notice your very expensive necklace...that is pretty much where those glasses stay.)
Thursday, December 11, 2008
Now we are home and everyone is doing much better. You are still getting (and needing) your pain meds every four hours, ut as long as you are being held you don’t complain. The worst thing for you so far has been diaper changes. You scream and wail whenever we change you, which is often. The surgery and stitches by themselves would give you a reason to hurt during a diaper change. But on top of that, since your bottom isn’t used to being dirty, your skin hasn’t toughened up and is fresh like a newborn’s. We are slathering cream on you; still, your skin is super sensitive as it is and it is hard to keep it from getting diaper rash. I thought a nice warm bath would make you feel better tonight. Boy was I wrong. Usually you love to lounge in the tub like Mama, but not this evening.
As for your abdominal incision, it looks great. It is about three inches long, horizontally. We change the dressing a couple times a day because it is still weeping a little. You don’t care to sit up and put too much pressure on it yet, but I can tell it is healing quickly.
Yesterday was your first snow! Mema was over and I went out to move the car and saw little flurries coming down! I ran inside, grabbed the camera, bundled you up, and we went to the front yard. You just had to experience the snow, if only for a minute. You are so warm natured, I think you enjoyed the brisk weather! Later it got cold enough for the snow to stick a little, but then you were in bed. So even though you can’t see the snow in this picture, you and I know it was there.
Friday, December 5, 2008
This morning got off to a fairly early start. Daddy had to go to work, but the timing was perfect so that he gave you goodbye kisses and left right as the nurse came to take the rest of us downstairs. We had our final discussions with the doctors and you were taken away about with the assurances that the OR nurse would call my cell to update us every hour and a half or so. Grammy, Honey, Mema and I ate breakfast and talked in your room while we waited to hear an update. At the OR nurse called to say prepping had taken awhile and the surgery didn’t begin until about . So we killed some more time and ate lunch. Daddy met us in the food court after he got off work early to come spend the rest of the day with us. It was about when I saw a doctor standing a little ways off and thought he looked an awful lot like Dr. Kim. He turned around and made eye contact and my jaw hit the floor. It was Dr. Kim! He walked over to our table and I said, “What are you doing here?” He laughed and said he decided to take a lunch break, and then he thought he might take a nap before finishing up on you. I didn’t believe him for a second and said, “No really, what are you doing here?” He told us that he was looking for us because you had been out of surgery nearly an hour and a half and they couldn’t find us. He was trying to have us paged, but since the nurse had my cell phone number, we never picked up a pager. Missing you in the recovery room seems to be a sad trend of ours. But the good news was that Dr. Kim said everything went great. There were no problems intubating and nothing exciting happened at all.
We rushed to the recovery room just in time to walk with you back up to your room. You have an epidural in so you weren’t in pain, but you were telling me all about your bad Friday morning. Your voice is so hoarse…you sound like a little baby again. And your gums were raw from the tube in your mouth. But other than that you looked great. When we got up to your room Grammy had set up a little pink Christmas tree (which all the nurses love), and Honey brought a bright pink Supergirl balloon! You definitely are my Supergirl.
You had a fever for a little while this evening…100.3 degrees. It normally wouldn’t count as a fever, except you usually run in the 96 degree range. I was worried for awhile that they might want to do a spinal tap since that position would be so uncomfortable for your incision. But with some Tylenol the fever is back down around 98 degrees. You have a catheter in since you have an epidural, and I spotted some blood in your urine. Right now we think it is just trauma from the cath being moved around, but we are keeping an eye on it. And you just blew your first IV. Thankfully the doctors had the foresight to put in a back up IV during the operation so we are using that one now. We pray it will last at least another 24 hours.
The last several weeks you have become almost OCD about rubbing your eyes. You do it almost all day long, often double fisted for both eyes at once. Since your IV was in your left hand, that frustrated you to no end. You kept the other fist right up to your mouth and it almost turned pruney from being sucked on so much…Ms. Theresa will be happy to know you got lots of oral stimulation in this weekend! Because you were hungry and uncomfortable it took you until just now to fall into a good asleep. You have got to be exhausted. Daddy and I sure are. Sleep sweetly Little One. Tomorrow we will have all day to cuddle.
Thursday, December 4, 2008
Tonight I will change your ostomy bag for the last time. Then in the morning, about 8:00, you will go in for the surgery. Dr. Kim will make the incision on your stomach a little wider, cut out the part of the intestine that has no nerve ending and pull the rest down to be reattached. It isn’t going to fun for a few days, but after you heal up, it will be much better to not have that itchy bag anymore. Mommy and Daddy never thought we would be so excited to change dirty diapers!
I am going inside to get our final things ready to go while praying for an uneventful surgery and a quick recovery. I love you little Shnook.
Wednesday, December 3, 2008
On Friday we packed everything up (and I do mean everything—you are not a light packer) and headed off to Weatherford for your first road trip. You have been doing much better in the car recently, so I made you hold off on your nap and was hoping you would sleep most of the way. That backfired. You were past the point of sleepy when we finally got in the car and melted into a puddley mess. The usually 4 ½ trip was closer to 6 and you cried for about 3 of them. We got to Uncle Shane’s and Aunt Lori’s house to find most of the Bowers’ family to waiting to meet you. Everyone loves you and was happy to see how big and healthy you are!
The rest of the weekend was spent relaxing with friends and family. You absolutely love your cousins Grace and Frank. Whenever they are around you listen to them very carefully and try to see what they are doing. They are, for the most part, the only kids you have been around and you know there is something special about them. And they love you too. Frank tells me several times a day how cute “Baby Audrey” is, and Grace is always giving you kisses and encouraging you to play. We don’t get to see nearly enough of them.