One crazy Sunday

This past Sunday Laura and I took a day trip with my mother. We drove over to San Antonio to visit my aunt and cousin. They both have birthdays in July, so we drive over, go to lunch and celebrate their birthdays.

The drive to San Antonio was fairly uneventful. A little annoying, but uneventful. All of you people that get in the left hand lane and do the speed limit or less get out of way. The left lane is for passing slower moving traffic, not slowing everyone else down. We did stop at Buckee's for restroom breaks for all three of us, and to give Laura a snack. She enjoyed her orange juice and a couple of cheerios.

We planned on eating at The Alamo Cafe on 281. It is one of my favorite places in the state of Texas to get Mexican food. I really like the atmosphere. We first suspected something had gone terribly wrong when we looked over and saw Sea Island at the Forum shopping center. My mother and I looked at each other and thought "this is not right."

We promptly exited 35 at the first opportunity. Yes I know. We made the turn from 10 to 410. but we missed the turn that would have kept us on 410 heading west toward the airport and 281. So we made a u-turn under 35 and headed south. we turned right on 1604 heading west thinking it would intersect 281. After what seemed like forever we were rewarded with spotting 281. We then turned left and headed south on 281 hoping we would see the restaurant. After a quick stop to get Laura some whole milk, we managed to find The Alamo Cafe.

In addition to my aunt and cousin, my cousin's husband and my mothers best friend from high school joined us. Laura had a taco (minus the shell), tomatoes, cheese, green beans and a flower tortilla. Laura is feeding herself. She really enjoys food. She loves getting it all over herself, her chair, the floor and anyone she can fling it at. And she really appeared to enjoy this lunch. Further proof she is my daughter, she likes Mexican food.

To my knowledge this was Barbara's (my mothers friend) first time to meet Laura in person. The two of them spent a good 30 minutes playing after we finished eating.

Usually, when we make the trip to San Antonio we also go by two cemeteries where my grand parents are buried. This first picture is Laura sitting on my grandma's lap. She did lean forward several time to touch the headstone. While we were at this cemetery Laura played with my cousin and my aunt for quiet a while. All three seemed to enjoy the activity.

Next we went to Fort Sam. Here she got to sit in my Oma and Opa's laps. While we were here we gave Laura another snack of cheerios and orange juice. Then the three of us hit the bathrooms and we started back to Houston.

So we get on 410 heading south to I10. Unfortunately we were stuck in the right hand two lanes and could not get over far enough to avoid being forced to exit 410 heading toward the sporting center close to 410. It was only a minor side track so it was not big deal.

We eventually find our way to I10, and I turn right heading west. Yes, Houston is east of San Antonio. Yes I headed the wrong direction. So I exited I10, made another u-turn and headed east on I10. Finally headed in the right direction, what could possibly go wrong next? Famous last words.

As we are driving east we encountered slower moving traffic in the right hand lane, so when the opportunity presented itself we moved into the left hand lane to pass the slower moving cars. Then the left hand lane slowed down. The speed ups and slow downs were random and unpredictable. On many occasions we did see that the person at the front of either line was on their cell phone. This situation begs two questions. First, don't most cars on the road today have cruise control? Most of the offending vehicles were very large very expensive SUV's, and the drivers either did not understand how to use cruise control or the y could not maintain a constant speed.

The second question that gets raised is this, do you really think it is a good idea to answer your phone while traveling in a large vehicle in excess of 70 miles an hour? I realize you are trying to be safe by slowing down to 50 but wouldn't it be best if you just let the call go to voice mail? Or not make the call until your are stopped some where safe? Just some food for thought.

And the next thing we knew weather turned on us. At one point I do not think I could see more than a few feet in front of the car. The rain lasted for the better part of an hour.

Then just west of Columbus traffic ground to a halt. I am not sure why. Never really saw a reason. But this woke Laura up and she started crying. So we exited I10 and took refuge from the craziness in a McDonald's. I had a large vanilla milk shake. My mother had a large diet coke. Laura had water and yup you guessed it, more cheerios. We all used the bathrooms. and then we were off.

Traffic was at least moving, slowly. But forward progress is still progress. the crazy slow drivers in the passing lanes continued to be a theme through out the drive to San Antonio and back. even once I10 opened up to more than 2 lanes things only marginally improved. We got on the road to come back to Houston after 4 pm. We did not get to Voss/I10 intersection until nearly 8:30.

But as this last picture shows, I may have a different and much bigger problem on my hands since Laura was in the car for so long. Oh dear.

First's

Laura has had a busy week this week, and it is only Tuesday.

Yesterday (Monday 5-24-10) Laura decided it was time she helped to feed herself. This is something that Tara and Laura have been working on for some time. The closest Laura has gotten to accomplishing this goal, was to be able to grab her bowls, bang them briefly then toss them on the floor. A big mess is sometimes made (if there was food in them), and big laugh is had by Laura and whoever saw her do it (this makes me wonder if she has my diabolical streak), then we clean up and try again.

Yesterday, at her snack time, she purposefully reached forward and pulled her snack to her mouth and began chewing. She was working on two different items. The first one is a little cloth like baggy that you put chucks of fruit in to. The purpose of this device is to teach children to chew. The theory is that the child bites down on the fruit filled bag and some of the juice from the fruit comes out. To me it sounds kind of weird, but it is actually kind of cool. Laura was able to pick her fruit baggy up several times, and get it to her mouth to chew on. She did this with little help and allot of encouragement from Tara. She even worked on transferring the bag from one hand to the other.

Laura also took a rice cracker from Tara's had and chewed on it. In the past, the closest Laura had gotten to something like this would involve her grabbing one of our hands that had some of her food in it, and she would then pull that hand to her and we would have to guide the food into her mouth. However, yesterday she took the cracker from Tara's hand and chewed on it several times. I am hoping to have a video of this posted on my FaceBook page later today.

Beyond the chewing, she is getting better at standing. And, she happily drinks her bottle through a straw. We are still sometime away from her drinking out of a cup, but we are getting closer. She can hold a cup or glass all by herself though. I know these may only seem like little things to some people, but to us they are huge, and we are very excited.

Getting back to a routine.

Well, we have been home for about a week now. In some ways it seems longer. In some ways it seems like only a few days. Laura is doing great. She either sleeps, or demands to be the center of attention.

As I have said in a previous post, this is new territory for Tara and I. Neither one of us wants the spot light. But all is good.

I am still amazed at how much more active she is than before the surgery. Everyday, she is awake a little longer than the day before. Everyday she fight sleep a little harder. This is going to make the coming years very interesting to say the least.

We had our first visit with Laura's E.C.I. therapist this morning. Liegh was very impressed with Laura's suck. This is big news, because as most of you know for almost a month before Laura's heart surgery she was feeding mostly through her NG tube. She just tired out so quickly when she would try to bottle feed. Tara and I kept doing Laura on her exercises as best we could once she was on the NG tube completely. We are hoping it will pay off soon.

Our plan, and Leigh agrees, is to start slow. We are continuing Laura's exercises from before her surgery. We are also putting a little of her food in just the nipple (not giving her a bottle yet) and letting her get used to that. The down side to exclusive NG Tube feeding is that Laura (and most others who have to be tube fed) develop a food aversion. That means they either do not like the taste of food of the feel of it in their mouths. Another weird idea to me, as I believe eating is a very good thing. On top of the food aversion, we are trying to get Laura past a bad gag reflex as well. So these are our current challenges.

Some of you may have noticed there is a new web site in the list. The Oley Foundation is a nonprofit that tries to provide support for families who have a member that must be tube fed. I checked out their web site, and they have some good information out there.

So we are home. We are feeding every three hours. She is more active and more motivated. She tracks with eyes much better. When she focuses on you she actively tries to interact with you. She makes sounds, smiles (all the time now) and just seems to be enjoying life. Tara and I are very happy that she is doing so well. We thank God daily.

Finally, Welcome Nathanael Miller to the world. Congratulations to Rachel, Matt, Gabriel and Jonathan on finally getting to bring the newest addition to the family home.

The latest info

Yesterday, Laura had a check up with her Cardiologist after being home only 4 days

I could not think of a better way to present this information than how my wife, Tara, put it in an email earlier today. That is right, I am blatantly stealing from my wife.

"I cannot express how deeply thankful Marcus and I are to each of you for your prayers for Laura. We truly believe in the power of prayer.

Laura is doing very well. She had a great checkup yesterday with the cardiologist. Her lungs are still a little wet, but not congested. The medication will continue to improve this. She weighs 13lbs. and is 22.5” long, and is such a wiggle worm! She is definitely going to keep us on our toes.

Laura still needs the feeding tube, while she works on bottle feeding. This is a slow process, because she has a very sensitive gag reflex. Please pray that we will be successful with this."

In addition to the above information, Laura also had her stitches out yesterday. She did not enjoy this process. However, she did calm down once they were out.

Laura is much more active now. This is both fun and challenging. Challenging because we find our selves ducking and dodging legs and feet during diaper changes. Nothing like getting kicked while trying to change your daughter.

She smiles constantly, which just melts our hearts. The bottom line is that she is just to cool for words.

Stage 2 is now complete. The stage in review

"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."

Psalm 5: 11


Well it is Saturday and we have survived stage two of the crucible. Tara and I are tired. Laura is still going strong.

If my grammar and word choice is off, I apologize now. It is 7:30 am, and as most of you know, I am not exactly a morning person. In the mornings I am not very pleasant. I am liable to growl at you just for having the nerve to be in the same zip code as I am. On top of that, the brain does not work very well for the first couple of hours after I wake up. It feels fuzzy and sluggish. No, eating something with protein does not help. Sometimes a shower does, but not all the time. As an example, after getting Laura's bottle ready this morning I decided I needed a glass of water for myself. So I went in to the kitchen to get it. I looked around and could not find my glass. I looked for it in our living room and our bed room. Nothing. So fearing the worst (it had disappeared in to some alternate dimension that my SciFi loving brain had cooked up) I asked Tara if the dishes in the dish washer were clean or dirty. She said they were dirty, and then reminded me that I had emptied the clean dishes a couple of days ago. All I could think of is how rude she was to speak.

Yup being a non morning person is great. I am just glad that Tara is not much of a morning person, and that Laura appears to be following our lead. It makes things a little easier since we are all on the same page when we get up. That being, who ever invented the idea that we had to rise with the sun should be taken out beaten, drawn and quarted, tarred and feathers, have bamboo stacks shoved under their finger nails, sit and listen to someone drag finger nails across a chalk board and then shot. And that would be the first stage of punishment.

I really do not like the mornings or morning people. When I was growing up my dad would wake me up on a Saturday and tell me day light was a wasting and that I needed to brush my teeth and then come down and eat breakfast. A grumbling, grouchy teenager who just wanted to sleep was beyond his comprehension. Took make matters worse, if my grandparents were in town, I was not even afforded the ability to sleep to 9:00 am. Paw-paw (my grandfather) would get me up at 6:00 am to help him with some project around the house. It was incomprehensible to him that I would want to sleep past that time. If I did not get up he would make my life miserable until I did get up. My father apparently enjoyed this, as he would sleep until 8:00 am, then put on his bathrobe, get a cup of coffee and come smiling to see what we were doing. His smug expression really pissed me off. He really enjoyed it (he is probably reading this and smiling).

Let see, this was the week of doctors and birthdays. The doctor visits all went well. Dr. Pielop, our pediatrician, is very pleased with where Laura is and how she is progressing. He also gave Laura her two month shots. She seemed handle them with out to much trouble. She cried a little, but the rest of the day she seemed fine.

Our cardiologist, Dr. Macicek, started Laura on a new medication that is in addition to the Lasiks. This medication will help lower Laura's blood pressure, so her heart does not have to work as hard to push blood through her system. This new medication, called Captopril, is the second in the cascade of medications that she will be on before her heart surgery. Laura gets both the Lasiks and Captopril every 8 hours.

Dr. Macicek has said that Laura will likely have her heart surgery in September. This is not written in stone, but he wants to get Laura onto the surgeons radar. this was not surprise to Tara and I since Laura's breathing has changed in our opinions. She also seems to start labor more quickly when she feeding or we are working with her.

Tara started back to work Thursday. She said it was very hard for her. We are lucky that Second Baptist has a day care program for their employees. However, not everyone get is. There are a limited number of spots for each class. A new class is formed each year for the newborns, and that is it. We got the last spot for this years class. Laura's class is down the hall from where Tara works, and is in the same building. This is great, because Tara and Laura are so close together. We are very lucky to have access to such a program

Tara has said it is hard for her to leave Laura's room and go to work. She would rather stay with Laura. I cannot blame her for that. I found that I was very bothered Thursday by the fact that all of my girls were not home (our dachshund Jenna obviously opted to stay home). I have met and trust the folks up at Second that are taking care of Laura. They do a great job. They are very sweet and loving. They are excited to learn how to care for Laura with her special issues. It just sucks that Laura and Tara are not home. Something about them being here, even when I am at work is reassuring to me. So Thursday I had a hard time as well.

Tara has loved getting to show Laura off. Who can blame Tara. Laura is beautiful. From Tara's descriptions, I would say Laura is the most popular person at Second for now. This is as it should be.

Thursday was Laura's Grammy's (Tara's mother) birthday. We took Grammy to a restaurant that we all like. Laura had a good time. She got to eat with us (more or less) through her feeding tube. I spent about 20 minutes with my hand in the air holding the tube up so that gravity could do its job. I felt like should be in a class room trying to ask the teacher a question. We all (there were 5 of us) spent most of the time sitting and staring at Laura. I cannot figure out why?

Tara, Laura and I went to see The Ugly Truth. This was a truly funny movie. I would caution that there is allot of fowl language and blatant discussions of sex, but a fun movie for a married couple to go see on a date night.

We are now on the down hill trek of the crucible. For the remainder of August, the birthdays are more spread out. There are also fewer doctors appointments. We are hoping to get a little better routine established by the end of the month.

The end of appointments for now.

"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."

Psalm 139; 13 - 14


Laura is 1 month old today. That means it is all up hill from here. This is going to be exciting.


OK, today ends the latest round of doctors appointments. 3 appointments in 2 days is allot if you ask me. Our pediatrician agrees, and was sympathetic.

Yesterday, I went over the results of Tara's doctor's appointment. I also discussed our appointment at Texas Children's Hospital. However, I did not give those results, and I am sure many of you are curious.

Over all Laura's cardiologist Dr. Macicek, was pleased with her. She was a good weight and was growing nicely. Her x-ray of her lungs looked good and did not show any problems. He wants to do a couple of things in anticipation of her coming downward trend. First, he wants to get more calories into Laura at each feeding. To do this we are going to mix her formula a little thicker. His goal is to store extra calories in her while she is still doing well. That way, when we hit the point where she starts her downward trend, due to her heart issue, she will still have the calories to burn and stay healthy, even if her caloric in take starts to drop.

We needed to meet with the Nutritionist to determine what ratios we need to mix Laura's formula at to get the intake the cardiologist wants. That is when all of the hoopla began that I wrote about yesterday. We have started mixing the formula at the desired ratios, and are looking forward to seeing how it affects her.

Second, during the check up yesterday the Cardiologist noticed an unusual heart beat for Laura. He assured us it was being caused by her heart condition. We did not have the heart to let him know that our pediatrician had noticed the same thing 2 weeks ago and was not concerned. Strangely, both our cardiologist and pediatrician described it as an almost absence of quiet.

The third thing he wants to do, is to see Laura again in 2 weeks to see how she is doing. At this point we may start Laura on Lasiks. It will depend on how she is doing and responding. We need to keep an eye out for circulation issues which could present as a blue tint in her hands and/or feet. The x-ray and the check he did this time did not reveal any fluid on the lungs. Dr. Macicek did indicate he wanted to try to get ahead of the curve for Laura as quickly as we could.

Today, we had a weigh in with our pediatrician. Laura is coming in at 8 pounds 7+ ounces. Meaning, she is starting to gain weight at a smidgen over 1/2 an ounce a day, which is amazing considering how much goes in to her. Dr. Pielop is quite pleased with her growth and weight gain.

To resolve the feeding issue from yesterday, we decided that it would be best to let Laura tell us when she is hungry. During the day we will wait until she makes the feeding motions and noises or until 4 hours pass between feedings. This will allow her to realize she is hungry and still let her pack on the calories. It will also give her the opportunity to get the feeding down. This afternoon she seemed to be getting hungry at about 3 1/2 hours. As we talked this through with the pediatrician, he deferred to whatever the nutritionist wanted. Which is fine, we just would have preferred a better attitude.

We just had two firsts with Laura. It is quite exciting. The first new thing we did was that we took Laura out to dinner with her Granny, Tara and I. We went to restaurant close to our home that we all enjoy called Buffalo Grill. The staff there were extremely happy to see Laura for the first time.

The second first happened while Tara was feeding Laura. Laura decided she needed to soil her diaper. And boy did she. I was in the next room and heard it. Unfortunately, Laura was sitting in Tara's lap taking her bottle, when the blow out happened. And by blow out, I mean out the side of the diaper and into Tara's lap. I am very excited (especially since it did not happen to me, yes I know it will). This was the first time Laura has done this trick. I am sure it will not be the last. Still, it was impressive.

We received a call from The Rise School today. They called to schedule a tour for either tomorrow, or next week. We had to opt for next week. I go back to work tomorrow, so that was not an option. We are looking forward to the tour as it is the first step to get Laura into their program. After the tour Laura goes on a waiting list for the school. We are hoping that we will not have to wait long. Unfortunately, we did not get her signed up before she was born. The school is that exclusive. If you are pregnant and have a confirmed diagnosis of Down Syndrome check out their web page. I have link to it up in the top right hand corner of the screen.

OK, folks it is getting late and I am getting tired. I will try to post tomorrow, and let you know how I handled going back to work. I am pretty sure I am going to be miserable being away from her all day.

Hope and Pain

"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I the Lord?'"
Exodus 4: 11

Well today (Wednesday 7-8-09) was a day of hope and pain for Tara, Laura and I. I love and hate days like these. It actually started yesterday (Tuesday 7-7-09). Laura got to go for an unscheduled car ride, so daddy could make an unexpected run to the eye doctor. Nothing major, but I still needed to go. The long and short of it is that I have to put a bunch of eye drops in my eyes during the day, and some goop in my eyes before I go to bed each night. The goop is a little weird.

Then Laura's Granny came over yesterday evening (7-7-09) to play with her. This allowed Tara and I to get out and run an errand and go to dinner. Later yesterday evening we did the tummy time exercise again. It went very well. Laura was able to hold her head up and turn it and lay it back down with pretty good control. This was enough to have us just about jumping out of our skins in excitement. Then she amazed us even more by actually scooting on her belly just a little. The end result of that, was that she actually spun herself about 90 degrees. It was just so amazing to watch her do this all by herself, with no help from mommy or daddy.

However, she was not yet done with us. A little later when Tara was putting Laura back in her crib, Laura (who was on her back at this point) lifted her head again. This, in and of itself, is not that big a deal, but Laura did it right when Tara was about to adjust the sheet the she was going to swaddle Laura in. It was as if Laura had figured out what was coming and decided to help Tara.

Today (7-8-09) Early Childhood Intervention came by to do an evaluation. After many questions, and some hands on work, they determined that Laura is right where she should be for a baby of three weeks and three days old. We decided that our goal for the next 6 months would be to get Laura off of her NG tube, and to be feeding either by bottle or breast (with some rice cereal being worked in, with our Pediatrician's approval).

They also gave us some things to try with Laura to help her figure out her feeding. These included stroking her cheeks. This is to get her to pucker in preparation for the feeding. They also suggested that we gently tap around her mouth to further encourage the sucking motion. This made Tara and I very happy.

Once again her Granny came by to play with her for a little while. Then this evening we did the tummy time exercise. Again, she amazed us by picking her head up and turning it even more smoothly to the other side than she had done last night. She did this a couple of times for us. Who would have thought that such a simple thing would have brought us so much joy and excitement.

Then about an hour before one of her feedings she began her sucking motions. This caused Tara to lactate before she was ready. We jumped on the chance, and breast fed Laura. It was one of the best experiences that we have had yet with breast feeding.

So at this point you are thinking I see the hope Laura (a Down Syndrome baby) has given you, where is the pain? Well after the breast feeding I changed Laura. No big deal. She seemed much happier (which is normal for her) after her diaper change. We then moved her NG tube to the other nostril. This really sucks. First, you take it out. Not that big a deal. She fusses a little, but calms down once it is out. Unfortunately, you have to put it back in. Then NG tube runs through the nose to the stomach. Laura does not like this part of the procedure (not that I blame her). It is one of those thing you have to do, even though your baby does not like it. Our hearts break every time we have to do it, because she hates it so. The only thing that gets us through it, is that we know it is best for her. Otherwise it is a gut wrenching, awful experience that I HATE having to go through.

The best thing about the NG tube is that after placing it, and taping it down, is that we get to hold Laura afterword. This calms both her and us down. We will be so glad once that thing is gone.

A day in the life

"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the Lord?'"
Exodus 4: 11

Our day goes something like this. Tara gets up about 7 or 8 am to change and feed Laura. Soemtimes I get up with her, ussually I sleep through to the next feeding though. This is usually an hour long process that includes both breast and bottle feeding (for about 20 minutes total), with anything that is left from the bottle going through Laura's NG tube. Normally, Laura does not eat much at any of the morning feedings. Then, Tara will pump for 20 minutes. After that, there is the clean up of all the equipment. This process repeats itself every three hours, 8 times a day. I usually handle most of the duties for the othe 7 feedings, so I do not feel to bad abnout sleeping through this one.

This process can be a little frustrating for Tara and I, because Laura does not appear to be a morning person. She normally sleeps, or is only barely awake, through it all. Then in the late morning to early afternoon she wakes up. She eats more from the bottle which means she gets less in the NG tube.

This routine also means that Tara and I get less than 2 hours of sleep at a time. Which is not good for us. We are very tired. However, we are excited to see that Laura does not appear to be a morning person either. We hope that her current sleepy nature in the morning means she will let us sleep in later in life (unlike a good friend of ours and her family). The key word there is hope, since we have a long way to go yet.

Then, today we went in for a wiegh in for Laura, and Dr. Pielop asked us to alter our routine. He suggested that we only feed her 7 times a day, or every 4 hours. We got very excited because that means we will get closer to 3 hours of sleep at a time. That 1 extra hour at the time sounded so good to me that it was all I could do not to fall on my knees and kiss Dr. Pielops feet. We are very excited about this. The other good news is that Laura currently weighs 8 pounds 3 ounces. She has gained 3 ounces since last week. That translates to about 1/2 an ounce a day. Dr. Pielop was very pleased with this result.

We have also started a little game called tummy time with Laura. Basically, it goes this way. We put Laura on the floor (on a blanket) on her belly for a minute. This allows her to try to lift her head. It helps her work on her gross motor skills. If you do this once a day a new born will start to lift her head. Most babies will not like this the first few times you do it. They will figure it out though, so stay with it. Once the baby gets the hang of it you can go longer periods of time. The obvious long term results are that this exercise leads the baby to figuring out how to turn themselves over, push themselves up and even begin to work on sitting and standing. Today Laura was able to lift her head by herself for about 10 seconds. We are very excited about his.

If anyone knows of any other activites like this one, please feel free to mention them in the comment section. I will try to find a way to list all the exercises in one place on the blog so everyone can find them.

Later this week we have another meeting with Early Childhood Intervention to do an assment of Laura's capabilities, and to see what kind of therapy she will need. The results should be interesting.

We hope you had a great fourth weekend. I will tell you about ours in a later post.