Kyle

Many of you who are my facebook friends saw me post about Kyle or share Team Kyle updates from time to time. I wanted to share a little more information about this amazing boy.

On January 8, 2013, Kyle passed away at home with his family. He was 8 years old, had the nickname “Big”, and he taught tens of thousands of people to Live Life for Today during his all too short time on earth. I met his mother through the March of Dimes, and I have seen her in person and hugged her several times….

I am trying to process the loss of Kyle, and imagine what Kate and the whole family is going through right now.

Nothing I write would do justice to Kyle or his family, I just need to get out all of the emotions I am dealing with, this is more of a post to explore all of that. It is, as usual, all over the place.

We know instinctually that parents are not supposed to outlive their children, it doesn’t make any sense. We are meant to care for our children and see them grow up. Preemie moms and mito moms know this is not always the case, and I know many babies and children that have gone to heaven long before their parents. Babies that fought alongside Tucker for months passed away right before Tucker came home, and another one a few months after. We mentioned their names often, asking them to be with Tucker and watch over him. Samuel’s name is mentioned often in our home.

The Sandy Hook elementary tragedy was so awful, I heard reports of it through facebook then I watched online news, it was so hard to believe. As the reports kept coming, and we learned the victims were mainly 6-7 year olds, I was glued to the TV, learning all about the kids. I was so angry at the one news channel that kept showing the killer’s picture and talking about him instead of the victims. The other channel showed pictures of each child-one little boy on a 4 wheeler, one little girl who asked for cowboy boots for Christmas (like my 5 year old cousin), one little girl playing the piano with her little brother….then I learned that two of the children had special needs and/or were nonverbal. I know that their families’ lives likely revolved around therapy schedules, dr appointments, arranging schedules to avoid meltdowns, and putting so much energy into helping them reach their potential. That is all over for them now.

While so many people reacted by demanding stricter gun control, asking for better mental healthcare (as they should), I just felt very overwhelmed and tired. Not the physical exhaustion I felt when Easton was just home from the hospital, up every 3 hours to eat, and then I had to pump, and then be up all day with Tucker…more of the emotional exhaustion from trying to comprehend how something like this could happen to families like mine. As the country has kind of moved on just a month later, I still wonder about the families. One of the articles I read explained that this tragedy particularly hit parents of 6 year olds, as most of the victims were around that age. It explained that we know what 6 looks like, sounds like, how its hair smells so clean after a bath, how 6 delights in learning new things….6 is our whole world, and we can’t fathom it being ripped away. Although Tucker is not a typical 6 year old, about 90% of the article applied to him, and also my 5 year old cousin.

Tucker’s anxiety increased tremendously during the Christmas break, he really needs his routine. He is having trouble sleeping, crying real tears a lot, throwing fits, chewing his shirts up, and grinding his teeth. We can never tell if he is sick or if this is all behavioral and anxiety related. He can’t tell us….and that is hard. I called his neurologist and she is decreasing his dose of SSRI meds and adding risperadol for the OCD and anxiety to hopefully help his compulsion to chew and grind his teeth. We got him chewy tubes to gnaw on which he uses often, but sometimes they are just not enough. This has added to my feeling of being just plain tired and wishing things were different.

January 8 started out as a good morning. I woke up on time (this never happens!), DH helped even more than usual with both kids, Tucker was well behaved and excited about school, and Easton was smiley and so very good, as usual. I had a decent ride into work with my sister, and I settled in to check emails then had a quick peek at facebook. This is where I learned that Kyle had passed away, in his home, with his parents and his "kids"….the wind was knocked right out of me. I couldn’t cry, I didn’t really believe it. I looked at Team Kyle’s page, at everyone’s statuses, and they all were telling me it was true. There are so many reasons why my heart is broken, I met Kate on several occasions, our babies’ stories started out so similarly, she provided me so much support and advice over the years about tube feeding, life with so many people observing you, the feeling of not being able to help your child… I never met Kyle, but as many others know, we didn’t need to meet him to love him. Kate probably didn’t get a full nights sleep in over 8 years, yet I know she’d gladly live that life forever if it meant that she was up caring for Kyle.

I heard this song in the car that day as I was at my lunch break http://www.youtube.com/watch?v=UUEy8nZvpdM , and I couldn’t stop crying, sobbing really. Kyle, you touched so many lives and taught us all so much, now you have gone to rest. The work for your family of learning how to be on earth without you is just beginning, I will hold the St Clair family in my hearts forever.

Easton's Arrival

I've tried to put together most of the story of my pregnancy with Easton and his arrival. I'll go over my emotions about Tucker and his transition in another post.  I have been working on this post for a while, just whenever I have a few minutes when no one needs me ;) So it may seem all over the place, and it's very long. Enjoy! 

 

"Well no matter who you are, and no matter what you've done,

there will come a time when you can't make it on your own.

and in your hour of desperation, know you're not the only one

praying Lord above, I need a miracle."

 

After Tucker's birth, long hospitalization, host of medical issues, and multiple diagnoses, Chris and I weren't sure if we were going to have more kids. We love Tucker so much, and we are great with kids....but we were scared to death of another NICU stay and/or another bout with pre-eclampsia that could put my health in danger again.  Then Tucker was diagnosed with mito, and we realized that any future babies could have health issues regardless of their gestation at birth....

For years I couldn't look at babies...but over the last few years God started working on my heart, and giving me hope that a second pregnancy could be different...and even if it wasn't different at all, it would still be worth trying.

 

This pregnancy was rough on me...emotionally and physically...I had morning sickness that lasted all day and night, I was sleeping up to 16 hours each day for the first trimester, on 3 meds for nausea, and still having no relief. When that ended at 14 weeks, I started having uncontrollable asthma symptoms. I started 3 more meds for that, and got it under control. I cried hard at least once per day throughout the whole pregnancy, so scared that if my body couldn't handle the baby at 8 weeks or 17 weeks...how was I ever going to make it past 27 weeks? What would it do to me, Chris, and Tucker if we lost the baby...or if I had to spend months on bedrest, or months in the NICU with a sick baby?

 

My OB sent me to the high risk doctors at 12 weeks, where I had one of the specialists describe pre-eclampsia to me in depth....he went over how the pre-e basically starves the baby, and he or she has no nutrients. I cried my eyes out and wondered what the heck I was doing.  My OB and the high risk doctor told me that I had about a 10% chance of having pre-eclampsia again, and that as long as the baby was growing well, things would be good. I was followed by the high risk doctors and my OB, so I had ultrasounds every 6 weeks, along with many tests.   My first set of labwork looked great, then all of the preliminary tests came back normal throughout the pregnancy....which was different than Tucker. I started to feel like maybe things would be different.

 

At 24 weeks, the high rish doctor released me, he said the baby looked great and that I had a great chance at getting to full term. Then at 27 weeks, my blood pressure went up for a few days. Then it went back down. My OB ordered a urine test and bloodwork, and it all looked good. I felt like I was being over cautious, but my OB said she'd do any tests I needed.

 

At 30 weeks, 5 days, we had another ultrasound. Easton measured perfectly at 3 pounds 15 oz, Chris and I were thrilled. We thought he'd be huge by the time he was born. For about one week, we were so happy. Around 32 weeks, my body blew up..I was so swollen all over, which is a sign of pre-e. But my blood pressure was still low. My OB was still concerned, so she ordered another 24 hour urine test (I was getting used to filling up the big red jug by this point!), my protein was up to 600....which was high, but not terrible. She ordered another 24 hour urine test and moved me to weekly appointments. At 33 weeks, 1 day, the OB asked me to come in for a BP check. My BP looked great in the office. She said if my BP was higher she would have admitted me because of the protein level. She ordered another 24 hour urine test, and told me to stay on bedrest at home over the weekend, then turn in the urine that Monday. We'd get the results by Tuesday, when I'd come in for another appointment. (The new hospital opened on August 5, and the new Physician's tower opened August 6. Within the first week of it being open, I was there 3 times! I knew the building and parking lot better than some of the employees.)

 

Over the weekend I rested a lot! I felt great, my swelling went down, and my mood improved.  I packed my hospital bag for Tuesday morning just in case, as being stuck in the hospital with nothing of your own is awful (and I would know!).  At 33 weeks, 5 days, I had another growth scan. Easton was measuring 4 pounds, 8 ounces....he had only gained half a pound in 3 weeks. I knew at this point that something was very wrong. I had been taking my blood pressure several times a day at home, and it was high sometimes, but as soon as I'd lay down it would go down. My protein level went up to 1400 in just a few days and my blood pressure was measuring 150/100 in the office, so my OB admitted me to the hospital for bedrest.

 

I felt like I was in good spirits at first....I was so much further than 27 weeks, and I knew that was good. But then I was more honest with myself and realized I was terrified. I know babies who were born at 33 weeks, 34 weeks...and have needed to be intibated, have spent months in the NICU, have gone on to have long term health complications. and of course this would be Tucker's little brother we're talking about! I wasn't going to have my happy birth experience, where I got to hold my newborn right after delivery, and we got to have family and friends all come in immediately to see us all, and introduce Tucker to his baby brother. Even in the best case scenario, I'd be spending weeks in the hospital away from Tucker, and my maternity leave time would be used up for bedrest, not for being home with my baby.

 

Within hours of being admitted, I realized I was having way too many contractions (I didn't even feel them!) so I got a shot of brethene and they calmed down. I received the first round of steriod shots to help Easton's lungs, and my BP was monitored every hour. My OB knew that I was terrified of being put on magnesium. With Tucker, I was so sick that I was put on mag right away and left on it until over 24 hours after he was born. Mag is (I suppose) a great drug, it can help stop labor and it also saves the mom from seizures and other problems that pre-e can cause. But it feels awful!! It makes you feel like you are boiling, and no matter how much ice they put on you and or how cold the room is, you feel miserable. Your whole body feels very heavy, and you feel drugged, so you can't really talk or get out of the bed. I was so scared that I'd be on mag during bedrest, but thank goodness I wasn't! So I was able to think and talk during bedrest, and even have bathroom priveleges (which is a huge deal! lol). I decided this wouldn't be so bad.

 

Then on that first night my dad and sisters came to visit me and to deliver medicines that I needed from home. I was very happy to see them, and they stayed for just one hour, but after they left, my BP was the highest it had ever been. I knew if my BP got too high that they'd deliver Easton, so I decided then that I wouldn't have any visitors other than Chris or mom.  I wanted Easton to stay in at least long enough to get two rounds of steriod shots, and my goal was really to get him to 37 weeks.

 

The next few days were kind of boring, but very restful. My swelling went way down, the carpel tunnel syndrome that had hurt my hands so badly during the pregnancy disappeared. My OB rounded on Wednesday and said that if the 24 hour urine test came back around 1400 again that I could go home for bedrest and move back to weekly OB appointments. I was thrilled! Of course it came back at 3600 (they deliver at 5000) so I was there to stay.

 

I kept requesting a visit from the NICU team, desperate to have some idea of what we were expecting with a 34 weeker at the new hospital.  The doctors weren't very concerned, they said that 35 weekers usually don't even go to the NICU. Well, this was a boy (wimpy white boy syndrome) and Tucker's brother! So I knew that a 34 week pregnant woman wasn't the NICU dr's top priority of the day, but I was so relieved when I saw one of the doctors come in to see us (of course I knew she was a NICU dr because she had taken care of Tucker).   She remembered us (as did many of the respiratory therapists who saw me during bedrest) and told us what we could expect at delivery. I was so very scared and sad about being separated from Easton at delivery. During bedrest, he was still with me. I knew that as soon as he was born they'd take him away, and I was worried that I'd be inconsolable.  The dr said that this wouldn't be anything like Tucker's delivery-best case scenario was that Easton would breathe on his own, and Chris and I could both hold him before he'd spend a week or two in the NICU. 

 

I would still be on mag for at least 24 hours (I kept asking my OB if each day was "the day" I'd be put on mag, everytime she saw me), so I wouldn't be totally "all there" for the delivery, but I should be awake at least and be able to understand what was going on. I just prayed and prayed that Easton would defy all expectations and give us a best case scenario, even though he wasn't getting his full 40 weeks.

 

On August 20, 2012, after 34 weeks and 4 days of pregnancy (including 6 days on hospital bedrest), Easton arrived, and we got our miracle.

 

 He weighed 4 pounds, 1 ounce, was 17 inches long, and was born breathing on his own. He started screaming as soon as my OB held him, and that was the best sound I've ever heard!

 Chris got to hold him right after he was born.

 And once my c-section was done, so did I!
My OB took a while to finish my section, so the NICU team was ready to bring Easton over to his room. Chris asked them to please keep him in the delivery area so that I could hold him. I don't think Chris will ever understand how much that meant to me.

These moments were so happy; unfortunately, after this Easton had to go to the NICU while I went up to recovery. Then I couldn't get out of bed for 24 hours while I was on the mag so everyone else went to visit him while I stayed in my bed. And once I was off of the mag, I fought pain and exhaustion to get over to the NICU to see Easton.  He spent 8 days in the NICU; while that was nothing compared to the 8 1/2 months Tucker spent there, it was still very hard for this mommy to be away from her new baby. All of the emotions from Tucker's birth came back, and the sadness from being parted from Easton were added to them. I knew that Easton would do better than Tucker did, but I also knew that I'd be leaving the hospital without him, and that he may stay for 3 weeks or so.

We took this picture about a week after Easton came home.

The way that Tucker has taken to Easton is also its own miracle, but I'll have to devote several posts to that subject.

Dusting off the blog....

Over the past few months Tucker’s blog has been so neglected…we have had so much going on, and no time to process any of it.


The summer is very busy for Chris and me both at work. We also try to fit in many appointments over the summer so that Tucker doesn’t miss too much school. Then in early June Chris sprained his ankle (badly) and added to the dr appointment/medicine/daily needs list around here….and we were really reminded that caring for Tucker is a two-person job! This pregnancy has been hard on me (everyone keeps praying for September to come so that they can say they’re ready for it to be over, haha), so I have not been nearly as useful as I like to be. We take care of Tucker in certain ways, and we have just been unable to do that lately.

Tucker had a very hard time transitioning from school to the summer time….bringing back behaviors that have been gone for over a year since he started ABA therapy. Weird behaviors like chewing on his shirts until they’re full of holes, stereo typical autism behaviors like playing with poop (thank God that one ended quickly!). Dangerous behaviors, like escaping from the house and walking down the road, long enough to be picked up by one of Chris’s friends….enough to make this mommy cry her eyes out for days. He developed a bald spot from pulling on his hair from anxiety…luckily we think it’s growing back.

Tucker has 35 hours of ABA therapy per week, and his team this summer has been amazing. With my pregnant brain and my hectic work schedule, I haven’t had to worry about them missing any shifts or neglecting anything. His feeding is getting much better, he is learning all of his letters, and they take him all over town for rewards, like playing in the McDonald’s play land and going to the mall. He can now wait for 8 minutes….which is such a big deal I can’t even explain that. Chris and I can barely wait on things we want for eight minutes ;)

I don’t have much leave time off of work…well, I do have a lot of time, the issue is that I use it up very quickly with Tucker. There are dr appointments, procedures, IEP meetings and conferences at school, then the regular events that all parents want to attend like field trips, etc. Of course this spring I used a lot of sick time for OB appointments, time off for asthma and morning sickness, etc. so we have been rationing out my remaining leave time over this summer so that I’ll have a few paid weeks off when the baby arrives. This means that Chris and his brother Andrew took Tucker to Houston for a 24 hour EEG while I stayed home to work. This was back in June, and I was a nervous wreck. I was so upset when I realized that the tech had to restrain Tucker physically to get all of the leads on his head….I never would have allowed that….ever. Chris said Tucker wasn’t acting up, the guy just came in and said they restrain all the kids, so then Tucker started crying and didn’t stop for pretty much the whole 24 hours. He and Chris were miserable. Tucker is usually so interested in the medical procedures, well during that hospital stay he cried every time he saw scrubs. The following week Mom, Gina, Jene’e and I took him back to Houston for a sleep study. He started crying when he saw the guy come in to attach his leads, but luckily this tech was amazing and Tucker just needed me to hold his hand to sit still.

Mom, Gina, and Jene’e had an adventure around Houston after 9pm trying to find food for the starving pregnant lady ;) It was scary, to say the least, but I was so grateful they were there. Tucker has also seen the eye dr, pediatrician, surgeon, immunologist, and dentist. We missed seeing the mito specialist in June because she was on maternity leave.

Despite all of the craziness this summer, Tucker has had a lot of fun as well. Chris and I took Tucker to Kentucky in early May to visit my family. We had been promising Tucker that we’d take him to KY for months and months, but it never seemed to work out for us. So we decided that early May was good for both of our jobs, and I was about 18 weeks pregnant, so not too sick anymore, but not too big or worried about blood pressure yet to stay home. Tucker had so much fun! And so did Chris and I, Chris even went to the KY Derby with my uncle and cousin. We made the 12 hour drive in 13 hours with stops on the way, then took more time on the way home. Tucker was so good in the car, we hope Easton likes the car as much as Tucker does!

We started the summer out by celebrating Tucker’s 6th birthday in Lake Charles. This is pre-sprained ankle, haha, so Chris and Tucker had a blast playing in the water park with Morgan, Grace, and Molli. Tucker is the odd one out being the only boy, so he played dolls with Molli and Grace and then got upset when we wouldn’t let him take a bath with the girls! On the way home we brought Tucker and Molli to Chik Fil A to play on the playground, they were so happy.

At the beginning of the summer we spent a good bit of time at Susan and Joey’s swimming in their pool. Tucker loved that, but as the summer went on I got more tired and Chris couldn’t really swim or climb into the pool with his ankle. Matthew and John Michael came down from Kentucky and spent a week with the family, so that was a lot of fun. There were BBQs, trips to the movies and pool, and of course video game times. Tucker is so funny with the boys, he sits right in the middle of them and acts like he belongs with teenagers.

During our trip to Houston, we finally brought Gina and Jene’e to the Galleria mall (it’s not really called that anymore, but we still call it that). They shopped while Tucker made another Build a Bear and then played in the huge kiddie play area. I had to drag him away because it was time for lunch and another surprise-the double decker carousel. He got to ride it once before lunch, and then once again after lunch. He was so happy.

We signed Tucker up for one week of summer day camp. It was at a Baton Rouge park, and the first day I brought him he cried for an hour. He knew the playground was outside, but he couldn’t go outside because it was inside time….so he cried and cried. By the second day he was up at 5am asking to “go to summer camp.” On Tuesday they took the kids to the movies, on Wed they spent the day at the camp, then Thursday they went to the water park, and on Friday they were back at the camp. Tucker’s therapists went with him each day, the other campers were jealous of his “girlfriends.” We didn’t sign him up for more time at camp because it was a very long drive from our house. I just learned of two other camps that are closer to our home and meant for special needs kids, so next summer he’ll probably go to the nearby camps for several weeks.

Sissy and Pops treated the 3 of us to a weekend in Biloxi at the end of July. It was very nice to get away, and the weekend was full of Tucker’s favorite things-staying in a hotel room, swimming in a pool, and playing on playgrounds. We even took him for a short trip to Wal Mart (I drink 5-6 bottles of water per day, and I ran out), where he got a big bag of Cheetos. We also took him to two different arcades where he “rode” the motorcycle games. He really just pretended to ride them, he also used all of Chris’s quarters in the claw machine trying to win a stuffed animal. I hope he doesn’t expect every hotel we stay in from now on to have all of that fun stuff!

As of today, I am 33 weeks 3 days pregnant. This is over 6 weeks more pregnant than I have ever been. This is fantastic and amazing….it is also surreal. I am such a first-time pregnant lady, asking my OB so many questions, wondering about delivery, bottles, breast feeding, etc. Things that moms with one kid should already know. I had never heard of getting asthma during pregnancy (which I have) or carpal tunnel syndrome (which I also have) or all kinds of other odd maladies. I have heard of the hormones and crying, I think Chris just avoids me now because he is scared he will say something that will make me cry ;) We went to an ultra sound at 30 weeks 5 days, and Easton weighed 3 pounds 14 ounces…Chris and I were in complete shock….I said “no wonder why my back hurts! There is a real baby in there!” hahaha, Tucker never had a chance to get that big and cause all of this craziness…so by now Easton should be well over 4 pounds, that is just insane to me.

Tucker knows all about Baby Easton….well he thinks he does! He can’t wait to change his diaper….over and over again, so we better stock up now. You ask him “what do you do with a baby?” “how do you make a baby stop crying?” “what are we going to do when Easton is born?” and the only thing he answers is “change his diaper.” He practices putting the baby doll to sleep, just to “wake” him up a few minutes later to fake change him. We are going to have to lock Easton in his room so that Tucker can’t go in there to bother him.

Tucker starts Kindergarten next week. He will spend about 60% of his time in the special needs classroom, and about 40% of his time in the typical KG class. We will see how this all works out, Tucker has been wanting to go back to school ever since his last day of PreK, but of course KG is a whole new world, so hopefully he loves it too.