Monday, December 29, 2008

December 29

This provided me at least an hour of good entertainment over the Christmas weekend.

You are such a good dancer. Groovy baby!

Thursday, December 25, 2008

December 25


Merry Christmas my love!

There is a song, "All I Want for Christmas is My Two Front Teeth". We need to change it to "All I Want for Christmas is My Two Bottom Front Teeth to Grow in Straight". That's right, the teething has begun. For now I can feel and see the bumps on your gums, but they haven't yet cut in. I noticed this new change yesterday. I found you several times drooling, which you have never, ever done before. That was the give away. Overall, you are handling it very well. When you are sitting or laying by yourself, you are more likely to be irritable than usual. But whenever we hold you or rub our fingers along your gums you quiet down.
We figured you would have crazy teeth because most kids with SLO do. (And you happen to be especially predisposed--sorry.) But I was holding out hope that we would avoid this one syndrome related issue. No such luck. I can already tell they are growing out, not up. So we are praying that they self correct before they come poking out.

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!


So we saw Santa Claus at the mall (he loved you by the way). Last night we went to Grammi the Great's party and then on to our Christmas Eve service at church. We read "T'was The Night Before Christmas", and the REAL Christmas Story. Your toes were painted Christmas red, and you got a special set of Christmas jammies to wake up in on Christmas morning. We made cookies for Santa, but forgot about his reindeer. Still, your stocking was stuffed and after gifts we made a yummy Christmas breakfast. You recieved an ornament from me, Honey and Grammy, and I got you your first Snowbaby (whose nails were also painted). You fell asleep from all the excitement before we could go look at Christmas lights or watch The Polar Express, but we can always do that tomorrow. Tomorrow Daddy is home from work and Aunt Paula is visiting Houston so we will have another fun filled day. I am sure to see more of my favorite smiles like these.

Tuesday, December 23, 2008

December 23

I want nothing more than to write you today with good news from your surgery. Instead I am so disappointed to tell you that your surgery for yesterday was cancelled, again.

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

December 21

You are all snug in your bed and Daddy and I are busy preparing for your surgery tomorrow.

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.

Lesson #1
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

December 18

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 9:00 with the promise he would get us a surgery date as soon as possible. By 10:30 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

December 11


You had a hard recovery from the osotmy reversal. I was expecting you to sleep most of the first 48 hours or so, and for the pain meds to take away any other pain you were having. But you didn’t sleep almost the entire first 24 hours after your surgery. Until your bowel sounds started up again you couldn’t be fed and you were miserably hungry. Before when you were on no feeds they at least had you on TPN which made you feel full. This time you were completely aware that you were starving and as a result you only slept 15 minutes here and there. You were just exhausted on top of being uncomfortable.





You also had an allergic reaction to one of your meds. It was an antibiotic, epidural, or the combination of both. Over the course of two days you took turns breaking out in a rash, whelps, and rough patches on your face along with bright red hands. It was a scary time for us, since you haven’t had any sort of reaction like that before. We never did figure out what was the cause, but we need to know by your next surgery so it doesn’t happen again.





Your catheter, epidural, IV's, monitors and two incisions made it hard to hold you. And Daddy was sick too, so he couldn't hold you anyway! He had a sore throat and headache and lots of sniffling and sneezing. It was a rough few days!

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.
We took a picture of snow in your hair for more proof.

Friday, December 5, 2008

December 5

Last night was similar to a night almost 6 months ago when we arrived at Women’s to be induced and brought back a lot of memories. Like half a year ago, we arrived late in the evening, hours after we were supposed to have already been there. Driving down Fannin made me smile as I remembered how excited we were to know you were finally going to be in our arms the next day. When we arrived last night we were admitted, signed papers, and got IV’s started, just like June 8th. And just like before the night was full of interruptions and light on sleep. The nurses came in and checked on me often, and my contractions started early. The nurses came to check on you often and your tummy was aching from the bowel prep. Daddy had no problems sleeping through either night. And in both cases, though we were a little anxious about what was to come the next morning, we had been looking forward to it for a long time.

(Daddy was hoping we would go into labor on our own so that he could run red lights...I told him it didn't work like that but he wanted to pretend it was a stressful situation anyway.)



(This is you!)

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 8:30 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 11:00 the OR nurse called to say prepping had taken awhile and the surgery didn’t begin until about 10:15. 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 1:45 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

December 4

Daddy is inside with you packing up our things to go to the hospital tonight. Tomorrow your colostomy reversal is finally happening! So this evening you will go NPO (no feeds) and have a bowel prep to clean everything out really good. You are so much bigger now and more and more like a “normal” baby every day, so I can’t imagine it will be an easy night. You are going to be one hungry kiddo. But the good news is now you will have your own room, and Daddy and I can stay overnight with you! There is also no limit to the age or number of visitors, so all of your grandparents can be with us at the same time!

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

December 3



Happy Thanksgiving! On Thursday you laid down to take your afternoon nap and by the time you woke up your Papaw, Grammy, Grandpapa, Honey, Mema, Aunt Shelby and Uncle Clayton were here. We had eaten while you slept so it was time to play for a little while before everyone else went home. It has been a long time Young family tradition to give every family member an Indian name on Thanksgiving. This year you were “Princess Cute as a Bug” and wore a feather headdress. Here is a picture of you with Aunt Shelby, otherwise known as “Princess Silly as a Squirrel”.


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.

Tuesday, November 25, 2008

November 25

You are such a good kisser! Most babies give open mouthed kissed, but not my baby! From the very beginning I would kiss your lips and long after I pulled away I would see you instinctually pucker. Then one day when I came home from running errands Daddy dropped the bombshell—he told me you had kissed him back. It took him a while to convince me that you had in fact kissed him, simultaneously, while his lips were on yours. And when he did I was disappointed. I had so wanted to be the first kiss. I asked Daddy why you would kiss him and not me. And then he showed me. All he did was kiss you and wait until your delayed pucker caught up. Cheater! Brilliant cheater!

So what do you think I did? I kissed you like that dozens of times every day. I kept thinking that if I did it enough you would get the hint that my lips weren’t going anywhere until you kissed me back. Within a week or two you had it down! For the past couple of months Daddy and I kiss you all the time and your response is immediate. What a smart kiddo you are!

But within the last week your kissing has gotten sloppy. Once Daddy came home from work and you wouldn’t kiss him hello. Instead, when you felt his lips, you opened your mouth in a crooked grimace. He and I looked at each other wide eyed and wondered what was going on. We got worried because we didn't have any documentation. I thought maybe you just weren’t in a kissy mood, and sure enough later that night you got your groove back. But the next day you were hit and miss again. Now I think I have figured it out. I used to tickle your mouth to jumpstart a smile—I am pretty sure that I have thoroughly confused you so that you aren’t sure what I want when I touch your mouth. But really, I will take either one—a smile or a kiss will both make my day. In the meantime though, we are taking lots of smoochy pictures while it lasts.


Friday, November 14, 2008

November 14

I forgot to tell you last week with all the ptosis drama...

We had an echo done and it came back without any detection of an ASD or PDA! Jesus healed your heart!

November 13

Today your caseworker for Texas Department of Aging and Disabilty Services came to do your in home evaluation. Back in August I applied for MDCP—Medically Dependent Children Program through the DADS office. It is a Medicaid waiver program based on the child’s income alone (zero) with a very long wait list. If the child meets the necessity criteria for admission to a nursing home this program provides financial assistance for them to be able to live at home instead. The Money Follows the Patient (MFP or Rider 28) program is a way to bypass the long wait list. It works by putting the child in the nursing home for 30 days and when they are discharged the money (Medicaid) literally “follows the patient” home until 21. With a letter from the primary care physician stating a nursing home stay isn’t appropriate for the child (as in your case since you need constant supervision) the mandatory 30 day stay can be shortened to 48 hours.

So after three months we are still at the very beginning of this long process. Our caseworker estimates it will take at least two more months, probably three for everything to be finalized. But the very cool thing about all of this is that through this program we are required to have a predetermined amount of respite care each month paid for by Medicaid. Anybody of our choosing can be an “attendant”…even grandmothers! So when Grammy and Honey and Mema come over to help me by spending time with you, or ride with us to the hospital, they will now be paid to do it. Win-win for everyone!

November 12

This afternoon you were lying on the couch next to me, and had your glasses on. I was asking you to smile like I have a hundred times over the past week. When I started to sing Stevie Wonder’s “Isn’t She Lovely” you made eye contact with me and smiled! Happy tears immediately flooded my eyes but I didn’t stop singing or smiling because I didn’t want to break the spell. When I smiled bigger, you smiled bigger! A couple of times your eyes wandered away and your smile dropped a little. But as soon as your gaze returned it came back better than before. And it lasted forever—probably a good 15 seconds! I know that doesn’t sound like a lot of time, but I have been waiting 5 long months for that smile. If it had lasted an hour my heart wouldn’t have swelled any more.

Of course, I tried recreating the moment to show Daddy—you didn’t think my singing was as funny the second time.

November 10

This morning we went to our doctor appointments with Aunt Paula. First stop was to meet our new ptosis surgeon, Dr. Urso. We all liked him so much! Aunt Paula says he has the four C’s: Common Sense, Calming, Confident and Connected. She is so silly. When we explained the Medicaid situation to him he said not to even worry about it. If Medicaid didn’t cover it, he wouldn’t charge us for his portion of your surgery. How totally different from the other doctor! I wouldn’t ask him to do it free of charge, I definitely want him to get paid for his services. I just want someone to do it! So his surgery scheduler is supposed to contact me this week to set something up.

Then we went to TCH to meet with renal. Your blood pressure looks good! So we aren’t changing your meds any for now. He was going to do some blood work, but when he saw you had a surgery coming up he postponed it. Blood will be drawn pre-op and he can have his labs done at the same time, so you and I both appreciate his avoiding an extra stick.

Then we had a special treat of getting to eat lunch with Maria, one of Aunt Paula’s friends who works at TCH. Maria came to visit you during your stay in the NICU and gave you a CD she and her husband created. It is Maria you hear praying over you on your iPod, and her husband who is playing those beautiful versions of classic lullabies. Definitely our favorite night time music! I think you are smiling in this picture because you recognize her sweet voice!

Sunday, November 9, 2008

Smile!

You are five months old today, andI can't believe how much you have grown and changed in the last few weeks. Your hair is getting lighter and that awful first haircut of yours has finally grown back out. You are almost 12 big pounds now (although you haven’t gained any length so most of it is in your thighs). Your eyes are opening more and you are becoming more active and playful. Your cry sounds more like a baby than a newborn these days. And this weekend we hit two major milestones.
Thursday I decided you needed to learn how to smile and so I began to teach you. I would give you a big grin, point to my mouth and say “this is Mommy’s smile” and then I would pull your mouth up into a smile and say “this is Audrey’s smile!”. After a few times of this you would do a quick up down motion with your mouth and I would give you lots of praise. Then Friday morning after we got out of bed and dressed for the day I asked you to show me your pretty smile, and you did! I didn’t even have to do it for you the first time! This was so encouraging for me. The reason language comes hard for special kiddos like you is because they don’t understand symbols. That’s all a word is, a verbal symbol. So the fact that you understood so quickly what I wanted from you thrilled my heart. Most of Friday we kept practicing, and even if you couldn’t get a full smile, or hold it for very long, your mouth was busy and you were definitely trying. Then on Saturday we went to Honey and Grandpapa’s house for Grandpapa’s big birthday celebration! He held you and tickled your chubby chin and you just smiled and smiled for him. I couldn’t believe it! After I tried so hard to coax even a tiny one, you gave them all away freely to Grandpapa. But I was glad you two had that special time. I tried to capture your new smile in a photo, but someone was a little camera shy and this is the best I got.


Friday was also the first time you reached for a toy! Daddy and I gave you your first Christmas present last week since we knew it would help you learn and grow. It is a jungle mat with lots of toys and lights and music and different textures. Sometimes you like it, sometimes you don’t. Friday you were very interested and after lying real still and watching the lights for awhile, you then reached up and hit the little parrot! Not just once or twice but several times. I could barely believe my eyes. Grammy showed up just in time to watch you play. You were so cute! I have tried to get you to reach for the toy a couple times since, but this weekend you decided you would much rather be held than put on the floor to entertain yourself. Imagine that.
You saw almost every one of your aunts and uncles this weekend! Uncle Shane, Aunt Lori, Aunt Lesley, Aunt Paula, Aunt Shelby and Uncle Clayton. You have such a good time with them all. And you loved Grace and Frank. When they talk you concentrate and try so hard to see them. I think you know they are your cool older cousins and you love them. Aunt Paula is staying with us tonight and we had fun playing with your glasses.
Here is “Professor Aunt Paula”.
And “confused student Mama”.
And this is “annoyed cat Misty”.

Wednesday, November 5, 2008

November 5

Today Mama has been frustrated to the point of tears all afternoon. Audrey, the lady who handles Paysse’s payments, called me early this afternoon saying your surgery was going to be canceled because of financial reasons. Since the financial counselor is trying to get the hospital to accept you out of charity, the first step is to apply for Medicaid and be denied. Then the hospital decides whether or not to eat the cost for their portion of the surgery. We would have to pay the doctor her fee of $5000 out of pocket, which is a ridiculous amount of money for 45 minutes of work. Still we would still save thousands and you would hear no complaint from me. However, Paysse said (through Audrey of course--she wouldn't take the time to talk to me about this personally) she didn't want me to have to pay for it out of pocket if Medicaid fell through. I don’t understand her reasoning since when the Medicaid falls through I will without a doubt have to pay at least the surgeon’s fee. What is the alternative? Not have the surgery and let you go blind? So basically what she means is she doesn't want to risk not getting paid by me when we get denied Medicaid. I asked Audrey when she thought the financial decision would be made by TCH and she said by the end of the week. I was willing to postpone the surgery until next week in order to let all of this get straightened out (but not with the happiest of hearts).

The problem came up when I was told the next surgery spot available is December 4th. A whole month away! If we wait that long you will be 7 months old by the time we get you in contacts and actually seeing something. That is just not acceptable. I explained to Audrey how money isn’t the issue, that you have at least three grandmothers who would send Paysse her fee in a heartbeat. Timing is the issue and as it is I am annoyed that it took us 6 weeks to be scheduled for a surgery that should have taken place 3 months ago. I then offered numerous times to pay her today for tomorrow's surgery and she (through Audrey) refused every time. Apparently there are laws against surgeons accepting money from those who may be eligible for Medicaid, so with that ball rolling I couldn’t just pay her up front. I absolutely understand her not wanting to get in trouble with the government. What I can’t understand is why she wouldn’t just go ahead and do the surgery, knowing that I was so willing to pay her up front and that I would pay her as soon as allowed. Audrey worked hard for us and approached Paysse with our case at least three times I know, but eventually came back and said we can’t make her change her mind. I would think a doctor would be compassionate enough to give an infant every chance at vision she could, especially an infant with numerous other obstacles like you. I just can’t believe she would make you suffer for selfish, not to mention illogical reasons.

So I called our financial counselor, explained why they wanted to cancel our surgery and asked if it was legal for them to refuse you the surgery. She told me the surgeon is within her rights but that we had not officially applied for Medicaid yet and if I wanted to drop the application process I could pay for the surgery myself. I asked her to call Audrey for me so she knew she could accept my payment and was put on hold. When she came back on the line she very apologetically said they had already given my spot away and nothing more could be done. After I spoke with Daddy (who like me had been on the phone for the last two and a half hours trying to straighten this out), I wanted to call Renee and insist she get our spot back. But by then it was 4:30 and business hours were over.

To top it all off, we have been ready to reverse your ostomy for the past 6 weeks but were giving your eyes precedence (under the assumption they would have been taken care of long before now). Just this morning I spoke with Dr. Kim and scheduled the pull-through for December 5th. Now, with a December 4th ptosis surgery, the colostomy has to be rescheduled for Dec 23 (we would be in the hospital over Christmas) or January. By the time it is said and done we will have waited a total of 3 1/2 months to reverse the colostomy because of this ridiculous ptosis surgeon.

I am looking for a different surgeon tomorrow who will maybe put some urgency on our case, get us in more quickly, and treat you more like the sweet baby you are than a business transaction. If I can’t find someone to do the surgery more quickly we will stay with Paysse despite my bad attitude with her bad attitude. Your eyesight is too precious to put this procedure off any longer.

Tuesday, November 4, 2008

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.

Sunday, October 26, 2008

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.

Monday, October 13, 2008

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.

Tuesday, October 7, 2008

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!

Thursday, October 2, 2008

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.

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 disappointed...you 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.

http://www.krisevans.com/client/bowers/audrey/

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.

http://krisevansphotography.blogspot.com/


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!

Sunday, August 31, 2008

August 29

Today Daddy and I have been married for one year! And what a whirlwind of a year it has been. In some ways I can’t believe it has only been a year, and in others I feel like it was just yesterday that we were boarding the cruise ship for our destination wedding. I have heard it said that the first year of marriage is the hardest. I don’t see how that could be; Daddy and I had a wonderful first year and there wasn’t anything hard about it. As Daddy said, one down, a lifetime to go.

Daddy took me to see Mamma Mia tonight…I wanted to see it all summer, and it was so sweet of him to sit through such a girlie movie with me. There is a scene where the daughter is getting ready for her wedding and her mom is singing about how the time has slipped through her fingers. Something like that wouldn’t have gotten such a strong reaction from me before, but my perspective on so many things is different now. I started to tear up because I know, unless we get the big miracle, you and I will never share a day like that. While our relationship will be special, it won’t be typical of most mother daughter relationships. The major milestones, such as going to school, moving out, getting married and having children won’t happen for you. I probably would have been able to hold back the flood if Daddy hadn’t reached over to hold me. He knew without even seeing my tears what I was thinking and that I was hurting. And when I looked at him, I could tell he was just as sad for us as I was.

August 26

Today Mema came to visit and you just snoozed away. We went out to eat—you had never been to a restaurant before and you nearly slept right through it! You finally woke up for the last ten minutes or so. Mema and I got dessert and I put some whipped cream on my finger and put it in your mouth. You must have gotten your sweet tooth from Mama because you were willing to work for that! I need to become more diligent about working with you on your oral aversion. I think I have just accepted the G Tube as the answer and have slacked off on trying to overcome the eating issues. Most SLO kids have their feeding tubes for years, but that doesn’t necessarily mean it will be that way for you.

August 24

Friday Aunt Paula flew into town to see you! After I told her how you always slept through the night you went and proved me wrong. That night you were awake from 1:00a to 7:45a. You have never been awake for that long of a stretch…I don’t know how you did it! Daddy had a meeting, so yesterday morning you hung out with Aunt Paula while I slept for a couple hours.

Today was a milestone in that we went to church for the first time since you were born! Aunt Paula, Daddy, you and I all went to Sunday school where you were quiet as a mouse, and then we went to big church. You listened to the music at the beginning, and when things quieted down you had one little fuss. You and I went out into the hall for a few minutes where you quickly fell asleep and we snuck back in for the rest of the service. Then we went to visit the ladies in Grammy’s Sunday school class. They sure do love you!

When Aunt Paula was walking out the door to leave for the airport you started to cry. I think you were sad to see her go...don't worry, I am sure you will see her very soon! She can't get enough of you.

August 19

Today was our first full day together by ourselves. We have been home a week, but everyday either Daddy has been home, Grammy has come over, or we went to the doctor. Even so, we have a pretty good routine down. You always sleep through the night, but you still sleep most all day also. The mornings we don’t go to TCH we lay in bed and cuddle and read books. In the afternoon we do your PT exercises. I have a mat just for you to work out on. You stretch, I show you how to roll on your side, lay on your tummy over a pillow to strengthen your neck, and I massage your arms and legs. You are extra active after a work out! Daddy comes home by 6:00 and he plays with you and keeps you awake until 8:00 when you get a bath, take meds, we read a couple books, say prayers and have you in your bassinet by our bed by 9:00. Mommy tries to get in bed right behind you since I need to wake up again by 11:00. Daddy shoots to be in bed by 9:30 after he washes bottles and gets ready for bed himself. I wake up during the night to care for you since Daddy has to wake up by 4:45—he gives you morning meds at 5:00 and then prepares for his day.

August 15

Today we had our first appointment with your pediatrician. She is a special needs doc and I like her a lot. We were at the hospital from 11:00-6:00. We still spend so much time there I feel like I am only borrowing you from the hospital! We decided your cholesterol med was made wrong and that is why your button got clogged. There were also issues with two other meds, so we through all of them out and started fresh at a different pharmacy.

Honey, Grandpapa, Aunt LeeLee, Aunt Lori, Uncle Shane and your cousins Audra, Fallon, Grace and Frank all went to Hawaii today. You, Daddy and I were supposed to go with them. When we originally planned on going we didn’t know we would have a little tag-along (you). We debated canceling the trip when we found out you were coming, but decided we could still pull it off and have a great time. Now with your colostomy and G-button wounds we didn’t think the circulated air of the plane would be a good idea, plus you are so sensitive to the sun. That rules out most Hawaiian activities. We briefly considered going without you, but that would hurt our hearts too much. We would much rather stay with you. So this week you and I will veg out together and dress like we went anyway—you have some really cute Hawaiian outfits!

August 14

Last night you slept straight through to the morning! What a big girl you are!

I woke up at 6:00 to start your feed, and when I woke up at 8:00 to turn it off, the bag was still full. I assumed your tube was clogged, so I pulled out a new one and restarted the feed. This time I checked it in 15 minutes and it still wasn’t going through. I experimented with it and discovered your button itself was blocked. I called pedi surg and they had me come in immediately. A new button was placed in your tummy and we left by 12:30. But by then you were one hungry girl. I am so frustrated with your pump for not telling me it was occluded. I wasted two hours thinking you were being fed, so today I called and had them deliver you a new one.

You met Aunt LeeLee tonight! She loves you already. She and Honey helped with bathtime and we all think you are so cute in your poodle towel Auntie Shelby gave you.

August 13

Remember how I said I didn’t care if you slept? I take that back. Last night was a rough start t home. At 11:00 we gave you meds and hopped into bed. Here was my schedule after that:

12:00—Start your feed

1:00—Drops

1:30—Turn off feed

2:00—Pump

3:00—Start feed

4:00—Meds

4:30—Turn off feed

5:00—Pump

6:00—Start feed

6:30—Beg Daddy not to go to work today

Clearly this will not work. In between meds and food you fussed. I think you were homesick for your bed in G-Pod. Home is too different—too still, too quiet, and too dark at night. Maybe you knew nurse Kristine was working last night and you missed her—Daddy and I sure did. I was so ready to bring you home yesterday and this morning I wouldn’t have minded taking you back! How those NICU nurses handle four babies at once is beyond me.

So today Daddy stayed home and played with you while I took a morning nap and then got things organized. You have a lot of equipment and supplies that I need to have handy. Daddy also helped me by rearranging all your meds so that I only need to wake up during the night to pump and then feed you. Tonight should be easier than last.