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


1:30—Turn off feed


3:00—Start feed


4:30—Turn off feed


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.

August 12

Welcome home BabyGirl Bowers! (That’s how you were known at the hospital—when you were born the doctors were so surprised you weren’t healthy that in all the excitement they forgot to ask us your name!)

It is still a little surreal that we are back. I wasn’t nervous about a thing in the months leading up to your arrival. Not delivering you, not bringing you home, not taking care of you all day by myself. It wasn’t until after your due date came and went and I realized I should already have a baby at home did it seem real and I started getting a little anxious. Then you were born and I was crushed to have to leave you at the hospital. All I wanted was to bring you home; often I joked about trying to sneak you out in my purse or under Daddy’s shirt. Never did I worry about getting you home--until a couple days ago. One of your NICU neighbors was discharged and for the first time I realized that when it was time to go, parents just pick up their baby and walk out. All of a sudden the anxiety rushed in again. It seemed so unbelievable to me that you, Daddy and I would be able to walk out those double doors without any wires or tubing attached and no nurses stopping us at the door.

But it finally happened today. Nurse Daisy got us all packed up and we tied up a bunch of loose ends, and about 4:00 pm we headed out the door. Mr. Wil is a volunteer at the hospital who holds the babies while their parents are gone and he was always checking on you for us. It was a comfort to me when I wasn’t there to know that there was a chance Wil, or possibly another volunteer, would come comfort and cuddle you. He caught us on the way out the door with a gift for you. He is sweet to spend so much of his free time at the hospital.

When we arrived at the house it was all decorated for your homecoming. Auntie Shelby (she is your silliest aunt by are going to think she is so funny) had written on the driveway, fence, and street starting almost at the beginning of the neighborhood, there were banners, flamingos (my friend Bobbi said “you mean storks?”…nope, flamingos!), balloons, and streamers. We got everything in the house and you slept the evening away. I am not hopeful you will sleep tonight, but I don’t even care. I am just so grateful to be back.

Monday, August 11, 2008

August 11

Jesus loves you--this I know.

Before you were born, Daddy and I weren't far from living paycheck to paycheck. When we found out you were on the way, I panicked because I didn't have any health insurance. Daddy and I had only gotten married seven weeks before, and we hadn't yet signed me on to his plan. But God worked out a way; I was covered before the pregnancy was confirmed by the doctor and it wasn't considered a preexisting condition. Still there was the cost of diapers and supplies, baby furniture, maybe formula...babies aren't cheap! I knew God wouldn't give you to us and the not give us a way to take care of you. But as the weeks and then months ticked away, doubt crept in and I began to get anxious.

In the month before your birth it all came together. We got a large tax refund, stimulus check, I closed on two houses, and received a surprise inheritance check. With this money we paid my OB bill, prepaid the hospital for your delivery, outfitted your nursery, paid off our credit card debt and had a little extra to put towards savings. I was completely aware of how God provided for you financially. So why this weekend, when we were faced with another overwhelming expense, did I worry?

Your in home medical equipment is outrageously expensive--$2000 a month for a BP monitor, suction machine, G-Tube pump and ostomy bag supplies. Our insurance (although we are so grateful we have any at all) will only provide $1000 annually. That leaves Dad and I with a bill larger than our mortgage! All day I have been looking for another option, such as assistance programs or a way to move our insurance benefits around. No dice. The doctors decided we could do without the BP monitor as long as I go into the pediatrician several times a week, possibly daily, for you to be checked. That saves $700 monthly. The rest of the bill from that particular medical supplier is about $500 and will be covered by insurance for the next two months. A different medical supplier is renting us the rest of the equipment for $750. When I called to work out a payment plan, I was told the bill would need to be paid in full by 5:00 today if we wanted to go home tomorrow. I started to protest, requesting at least 24 hours to decide how to pay for it all. The lady put me on hold for so long I eventually hung up. But when she called back, she said the most amazing words I heard all day.

"It will be $150 a month, how would you like to pay?"

I needed her to repeat it. When she did, I didn't ask questions. I just said a stunned "Thank you Jesus!" and took care of the payment. Our out of pocket expenses for the next two months just went from $2000 to $150 in a matter of hours. This buys us some time to apply for a program which our case worker told us about and should provide an enormous help in the years to come. God is so good.

Tomorrow I take seven prescriptions to the pharmacy. Two are compounded and I have been told they won't be accepted by insurance. I am expecting a miracle.

Friday, August 8, 2008

August 7

On Tuesday you survived Hurricane Edouard! (It’s funny because, as usual, there was a whole lot of fuss but it barely even rained.) Your glasses were delivered around noon. I was so excited, I just about ran over to St. Luke’s, paid for them, and immediately put them on your face. Then you threw up. Whether it was because of the glasses or bad timing, I don’t know. The optometrist says that often happens to adults when they first put on such a strong prescription. So we got all cleaned up, changed your clothes, changed your sheets, and put them back on your face. Then you fell asleep.
I was disappointed. I don’t know what I was expecting. I knew there wasn’t going to be a moment where you looked at me and I saw a dawn of recognition on your face. But I was hoping you would be curious enough to try to see through them. I wasn’t expecting you to love them. But I was expecting them to fit well enough to not agitate you too much. They are the smallest size glasses come in, but they are still too large on you. I need to get creative on how I am going to keep them on your face. When the doctor told me contacts were easier for babies I thought he was crazy; now I am beginning to see what he meant. You do not care for them at all.

In fact, Tuesday you and I had our first power struggle. I wanted you to wear the glasses, and you did not. I had never heard your angry cry before—you are such an easy going baby. But that afternoon you were not happy with me. I held you as you bucked and screamed and thrashed your head around. Eventually you wore yourself out and gave up. I make it sound like a huge ordeal, when in actuality it only lasted a few brief moments. But when trying to stand my ground, it felt like forever. I am determined to win the “Battle of the Glasses”. I want you to know that wearing them is not negotiable and that throwing a fit will not convince me to take them off.

I was so impressed with how strong I was—until later that evening when my resolve faded. At night, as Daddy and I were tucking you into bed before we left, your anger turned into pain. I couldn’t tell if the glasses were giving you a headache, irritating your nose or head, or something completely unrelated. All I knew was that you weren’t feeling good and the glasses weren’t making anything easier for you. You have such a sad little cry when you are hurting. One thing I never expected from motherhood is how I physically feel your pain. When you have a bad case of reflux, I feel nauseous. After a surgery I am exhausted and achy. Your new glasses give me a headache. (Your ophthalmologist said that babies don’t ever get headaches from glasses. No matter if they are a strong prescription, weak prescription, wrong prescription. I can’t figure out how he could possibly know this. I bet he tells all the mothers that to make them feel better.) I had to fight back tears while you were crying, and struggled with the decision on whether I should save you from the glasses. I want to give you the best chance to have good vision, which means keeping glasses on at all times. But I want to do everything in my power to make you comfortable and happy. I felt like you were confused as to why I wouldn't help you. Tough love is so hard. As my internal battle raged, you fell asleep and saved me from myself.

The last couple of days have been easier. The first time I caught you peeking at me, my heart melted, knowing you can actually see me back. You are slowly getting used to the glasses. They don’t stay put well, but I am working on that. You do a fairly good job of focusing, although tracking is a ways off. In the mornings when I come to your bedside, I can tell you recognize me by my voice. I can’t wait for the day when you recognize me by sight.

Tuesday, August 5, 2008

August 4

Yesterday your Aunt Lori and cousins Audra, Fallon, Grace and Frank came to see you! Aunt Lori thinks you are beautiful and couldn’t wait to get her hands on you. We brought your cousins in one at a time to visit with you for a quick minute. Grace stood there and rubbed your head the whole time—you loved it! Frank had a million questions about all of your wires and monitors. And Audra and Fallon were happy just to watch you squirm. When you get bigger you are going to think all four are the absolute coolest.

We had more excitement Sunday at your noon feeding when Daddy noticed that the extension for the tube wasn’t connected, and milk was leaking everywhere. Within seconds of putting it back together it disconnected again. Our nurse experimented with it for a few minutes, and then called the charge nurse. Nothing would go in, and nothing could be pulled back. We called your surgeon Dr. Bloss to come have a look and I asked if we could go ahead and place the button. He agreed it was a good idea! So by 5:00 you had the button, a contrast study to make sure the placement was correct, and you were ready to eat through it again! The nurse cut open your tube to see what the problem was and saw the cholesterol supplements had clogged your tube over the last 3 days to the point that your milk wouldn’t go through at all. Now we know to flush the tube between each medication since it is so thick.

While Bloss was there I asked him what time frame he was thinking for your colostomy reversal. I wasn’t sure if I should be looking forward to a date, weight, age or what. He told me it would be soon, probably around the end of the year. I reminded him we were in the beginning of August and that did not sound soon to me. Then Bloss asked when I was thinking it would be removed—I told him I didn’t know but she is very stable and I would like to get rid of it as soon as possible. He considered for a minute then said they never reverse it less than 6 weeks from the initial surgery, and all her surgical teams would need to be on board with her having another major operation. When I told him the only other surgical team you have is the ophthalmology team, he said I could ask your neo what he thought. It sounded like Bloss might be considering reversing it in two weeks! So today I talked to your neo and he said we need to watch you for a couple more days to see how you tolerate feeds and then he will make a recommendation either to do the reversal or not. It would be wonderful if that could be done in a couple weeks. Originally I had been prepared for you to have it for another couple months. The only drawback to reversing in a couple weeks is that you would stay in the hospital until a few days after the surgery. There would be no sense in pulling your central line Wednesday just to come back in less than two weeks and have several more IVs placed during your next hospitalization. If they decide to wait on the reversal, I am still thinking we can go home by this weekend.

Your blood pressure is great—they started you on meds Sat and it has dramatically improved. Your OT is still working with you thinking you will start to like the passy if she doesn’t make you take the bottle. PT is coming by also to make sure your muscles don’t get tight. He is trying to train your ankles to fall in line by using tape, but you have some crazy adhesive repelling skin! Something stronger will need to be used. Your glasses were supposed to come in today, but for some reason the truck missed our stop! They have a priority drop off time tomorrow morning, but we are expecting a hurricane to hit Galveston around 7:00A. Hopefully the weather won’t be bad enough to prevent the carrier from delivering them. You are opening your eyes so much! I am so curious to see how you react to seeing for the first time!

Goodness, Daddy and I love you. My favorite part of the day is nighttime, after you get your bath and your jammies on and are all snuggled up in bed under the covers. You look so comfy and sweet—we just look at you and wish for these moments to last forever. I have spent so much time working with kids—nannying and babysitting, coaching and teaching. Before I knew I was pregnant with you, I was thinking I should take a break until we had our own kids. But I was especially tired of babies. My, how quickly that changed. You are so much fun, I would be happy if you stayed a baby forever!

Sunday, August 3, 2008

August 2

You are making such great progress towards going home! Today was your first day on full feeds, so this evening you were taken off the TPN. If you show you can tolerate the amount of milk, they will take out the central line this week! They have discontinued your order for Tylenol and Morphine, which before they could give you as needed. Ever since your diagnosis, I have been anxious to get you started on the cholesterol supplement, and yesterday was your first dose. I read that SLOS children most always are autistic, but cholesterol supplements lessen the severity. Sometimes SLOS children can even escape a separate diagnosis of autism, although many of the characteristics are still there.

SLOS is a tough syndrome to have, and while you have all the characteristics, it could be so much worse. Every time I get frustrated over our situation, I have to think about all the ways in which we are so fortunate. You were diagnosed very quickly. Now that we know what we are dealing with, we can take some preventative measures for the future. A lot of SLOS babies don’t start the supplements right away. The fact that we have you at all is an absolute miracle. About 80% of SLOS babies end in miscarriage. Of those that are born, 22% don’t live past the first year. One of your doctors at Women’s was a very compassionate woman, and every time she checked on you, she checked on Daddy and I. She told me that an unexpected syndrome is the second hardest thing a parent could go through. When I asked what the hardest thing was, her response was ambiguous genitalia. I absolutely believe that would be more difficult. Most baby boys with SLOS do have ambiguous genitalia. Thank God you are a girl or we could be experiencing both. You are so strong—when I leave you at night, I don’t worry about your heart stopping or your ability to breathe. Many babies are born with serious heart defects, missing kidneys, or a number of other potentially fatal abnormalities. None are the case for you. The only thing that has kept you in the hospital so long is figuring out how to feed you. What a healthy baby you are!

I just love you to pieces. It is amazing how the simple things you do, like yawn, hold your hands by your face, and hiccup are so adorable to me. You are really beginning to open your eyes and focus them. I know without your glasses you are still pretty much blind, but when your eyes are looking in my direction and you even lift your head towards me, it is the absolute best feeling. You are trying hard to see us, and I can’t wait until Monday when your glasses should arrive. You will be so surprised to see such a big world around you!

Sleep well Sweetness, because tomorrow you are having some very special visitors!