November 4

Goodness! I don’t write to you for a while and look what happens. So much is going on this week, I don’t know where to begin. But while you and Daddy sit in the living room waiting to see who will be our next president, I will catch you up a bit.

For the last few weeks I have been looking forward to your ptosis surgery which was scheduled for this Thursday. And in those weeks we have been fighting with insurance that refuses to pay for it. They don’t doubt the medical necessity of the procedure, but they tell us it isn’t included in our benefits plan. Since so often it is used for cosmetic reasons, they just don’t cover this surgery. Period. Necessary or not. For now insurance is a dead end.

So today I received a call from the surgery scheduler (whose name is also Audrey!) telling me they were going to cancel your Thursday operating room time. I asked her if I could just pay for the surgery out of pocket, and Audrey said she would advise against it since this condition isn’t detrimental to your health. I explained to her why I thought it was…at almost 5 months old you aren’t smiling, holding your head up, or rolling. All of this can be at least partially, if not completely, attributed to your lack of vision and I am not willing to put the surgery off any longer. She made some phone calls and asked me to meet with a TCH financial counselor after your dermatology appointment this morning.

So we met and while she finds it hard to believe insurance can justify not paying for the surgery, she had me fill out an application to have it done pro bono. I left her office with the peace of knowing that the surgery was still on for Thursday with or without insurance. That alone was a big answer to prayer—Daddy and I don’t care about the price tag on this surgery. We only care about the timing of it. But insurance hasn’t been our only obstacle this week…

Monday I started trying to decide the best way for you to get an IV for the surgery. The anesthesiologist was unable to get one in your tiny little veins last surgery so he recommended you come in the evening before to get a PIC line this time. This isn’t ideal for you because PIC lines have to stay a minimum of ten days, and it just seems silly to do that for an hour long surgery. The alternative is to go in Thursday morning and…well, I forget what this one is called…but basically they do an ultrasound to find the right vein to stick. This requires extra OR time which you don’t have (I have found it is all about OR scheduling). So while the doctors were going back and forth about what would be best, I asked the nurse if it would be safe to reverse the colostomy within the ten days following the ptosis surgery. I know for sure you will need a PIC line for that one since you will be on TPN for a few days and you blow IV’s so quickly. We could make the PIC do double duty. The ophthalmology nurse didn’t see why not since the areas to be worked on are on opposite ends and the ptosis doesn’t require a major cut. I called pedi-surg to see if the reversal could be worked into Dr. Kim’s schedule, but was told I wouldn’t get an answer until Wednesday morning. When I updated the other surgery scheduler Renee, suggested we do both surgeries at the same time. When I told her it was Dr. Paysse, the ptosis surgeon, who didn’t want to combine, Renee seemed surprised. So we left with plans for me to talk to Dr. Kim, Renee to talk to Dr. Paysse, and tomorrow decide if the two procedures should be done together or not.

I am all for combining the surgeries for a number of reasons. The anesthesia always worries me and the less you go under the better. Insurance would pay for the anesthesia, OR, hospital stay--all of the operation except for the ptosis portion. If separate you would be on stronger pain meds for the colostomy reversal than for the ptosis surgery, so combined your recovery would be less painful for the ptosis. The only drawback is that the chance of combining both surgeries for Thursday is next to none. That means the ptosis would be postponed until surgeons and OR could be coordinated. I want what is safest for you whether that means to do the surgeries separate to lessen the chance of infection, or do them together to lessen the risk of anesthesia. I pray that God will give us the wisdom to make the right decision.

Well, Daddy just came out to the office to tell me the race for presidency has been decided and Barack Obama won. History has been made, fireworks are going off in the neighborhood, and you are crying. Tonight I take comfort in knowing that in matters of both our country and our family, God is in control.

October 26

You have already "said" a few words.

Your first word was "ow". You say it a lot, although it usually has nothing to do with pain.

And I am positive I have heard you say, "Mama" before. Nobody believes me, and I don't have any witnesses, but I don't think it is so far fetched. You really like the "mmmm" sound and just by throwing an "aahhh" after it you have "Ma". Twice in a row and we are in business!

But this afternoon you said you first word in context! I was working in the back of the house and you and Daddy came to spend time with me. Misty Cat was on the bed and Daddy thought you two might like to visit. She wasn't feeling very social, but Nicky was lying on the floor taking a sun bath. So the three of you were on the floor together and when Daddy held you right up to Nick's face and you said, "Hi!". Daddy and I looked at each other laughing because it was just too cute and the timing was too perfect. I know it was unintentional...

...at least I think it was unintentional. Sometimes you are scary smart. Daddy and I try to get you in bed by 9:00, and so you are usually in bed by 9:30. You fall asleep quickly and we finish doing what we need to in order to get to bed ourselves. It doesn't matter how much time has passed from when we put you down, but every night for the last three weeks, you start to cry the second Daddy and I say goodnight. Without fail. So we started to whisper it to one another, or not say it at all. But inevitably one of us will say "I am so tired" or "It feels good to lie down" and set you off. The creepy part is that you don't even sleep in our room anymore. You hear us from your crib through your shut door and down the hall.

Genius baby.

October 13

This morning we were scheduled to go into TCH for an EUA and most likely glaucoma surgery. But about 30 minutes after you were taken the doctor had us paged. The best we could have hoped for happened and he decided surgery wasn’t necessary! He said your eye pressures looked great (as did the retina) and he chose not to operate! Praise God.

The only disappointment of the day was the inability to start an IV on you. An EUA begins by putting you under lightly with the air mask, examination to see if the surgery is necessary, and only if it is do they start an IV. Even though you didn’t need the operation, the plan was to go ahead and put you completely under to fit your eyes for contacts and check your prescription. However, after many unsuccessful attempts to start an IV (Daddy and I counted at least 12) they decided it wasn’t worth it and began to let you wake up. I had warned several people in advance that you have very small veins and are a hard stick. Unfortunately this message wasn’t relayed to the anesthesiologist until right before you were taken away. He later told me if he had known, he would have made sure you were the first surgery this morning. Instead your 8:30 surgery didn’t begin until 9:30 and your already small veins were dehydrated from 7 hours of no fluids and even more difficult to stick. His recommendation for next time is to continue feeding until just a couple hours before surgery and insist on being the first surgery of the day so that your veins will be as plump as possible. If that doesn’t work you will need either a PIC line or another central line.

Still, nothing can dampen our elation over the good news. We are all for less incisions and chances for infection and we were pleasantly surprised to be released by noon. So the next step is ptosis surgery, right now scheduled for November 6. I popped in to see the surgery scheduler today hoping to move up the date since you won’t be needing the recovery time we had anticipated. However, as of now no earlier OR slots are available. I told her we would be on standby and if anything came up to please let me know. I am anxious to get you into your contacts as soon as possible. The only hurdle in the meantime is insurance. Right now they are refusing to cover any of the ptosis surgery, since so often this is an elective procedure for cosmetic reasons. The doctor’s office has explained to them how critical this surgery is for developing your vision, but still they refuse to budge. Our caseworker is seeing what she can do—I have learned to have confidence that God will work it all out.

Ok love. I am missing you as I write this. It is time to head back into the house to cuddle with you and Daddy a few hours before bed. I love you so.

October 7

Last weekend was just full of “firsts”!

Friday you slept in your crib for the first time during your afternoon nap. You slept so well that I was brave enough to let you sleep in there during the night also! I was nauseous a few times, but you did great and it feels good for Daddy and I to have our bedroom back. Your bassinette, pump, suction, and soundmaker had taken over most of the room. And it is so nice to be able to put you to bed and then move around the house and talk freely with no worries of waking you.

Then Sam and Jason came to see you this weekend! We have been trying since you came home from the hospital to find a weekend that worked for all of us, and finally it happened. You were a very sweet girl and I was hoping you would convince them to start having babies so that you could have more playmates…they have sworn off kids any time soon, but we know how that goes, don’t we? (Wink, wink!)

Saturday you were invited to a friend’s birthday party for the first time. Elijah turned one year old this week! I just can’t believe it. Mommy took care of him while his parents went to work when he was three and four months old and you were still in my tummy. He couldn’t be any cuter and I think he has a crush on you! Either that or he really likes your stroller since we needed to stop him from climbing inside with you!

Since Elijah’s party was at the pool, you put on your suit, sunglasses and sunscreen and headed outside. I dipped your pretty toes in the water, but it was too cold for you. So instead we sat under the umbrella and played in the gorgeous weather with Sam and Grammy.

Later that night, Sam helped with bathtime and took some pictures of you with her new fancy camera. Mommy wants a new fancy camera for Christmas so I can learn how to take lots of pictures of you…tell Daddy for me, ok?

And then Sunday we all went to the museum for the first time! You were such an angel…quiet as a mouse until it was time to come home. It was a couple hours past naptime and you were in meltdown mode. I am pretty sure your crying the entire way back solidified Sam and Jason’s resolve to not have a baby right now. When we arrived home I walked you straight into your room, changed your diaper, laid you down, and you were asleep before I shut the door behind me. I don't blame you for being exhausted from the weekend!

October 3

Today we had a spa day, and you experienced your first pedicure. The plan was for me to do my toes, but I couldn’t resist doing yours first. However, yours took much longer than I counted on. I underestimated how hard it would be to paint tiny little squirmy nails. And then to keep them still while they dry. So my nails had to wait until later this evening when Daddy came home. But here we are, matching in “Dutch Tulip” by OPI. I was originally eyeing “I’m Not Really A Waitress Red” but I thought that might be too bold for your first ever pedicure. Next time!

October 2

You are Mommy’s biggest girl! Today your new OT Ms. Teresa came to see you and you did such a great job for her! You were very comfortable in her arms and very willing to cooperate. She worked on pre-feeding skills with you—she stroked your cheeks and upper lip and chin, worked her finger into your mouth, and you gave some consecutive sucks several times! You have never tolerated anything in your mouth that well and I was so impressed with both of you. After you had enough of that she stretched out your neck so that you will be holding up your head in no time! Ms. Teresa teaches me how to do these things as we go so that you and I can practice several times every day. Since this afternoon, I have done your oral exercises twice with you, and you have done an equally good job. This is proof you weren't just caught at the right moment earlier! I also learned a great tip; Ms. Teresa says to tuck your chin when you start to gag to prevent vomiting. I wish someone would have told me that a few months ago! You got an A+ today in school and I couldn’t be more proud!

I am so happy with our session today. We have Ms. Teresa through ECI, a state program about which I have heard conflicting things. The success of the child depends on the quality of the service provider you receive which apparently varies greatly. Since this costs next to nothing, my thinking was we would just give this a try and if it didn’t work out we would go elsewhere for services. But I am really so pleased with Ms. Teresa’s level of experience and knowledge. I can see that God has handpicked her just for you. The amazing thing is Ms. Teresa has visited our church the last couple of weeks! She has a son the same age as you—maybe you will get to play with him in the nursery soon!

October 1

I just think this is the sweetest picture of you "praying" tonight.