Tuesday, April 1, 2014

Changes

There have been several changes since my last post. I apologize for the length. This is what happens when I slack on my blogging ;)

Over a month ago we visited a nutritionist again. Since Ty started crawling near the end of January, he has had less patience for sitting still to eat. With Ty moving more and eating less, he was starting to look thin and tired. His body burns a lot of energy to compensate for his heart function, kind of like running up an escalator that's going down. The nutritionist put him on a renal formula that really packs a punch with 425 calories in every 8 oz can. Ty seems to like the vanilla flavor, and he already appears to be filling out. Here is a photo of Ty Man from about five weeks ago when he looked his thinnest. Consider this his "Before" photo. Hopefully soon I can share an "After" that will show significant growth.
Two weeks ago I took Ty to see the cardiologist, but the poor boy panicked and threw a screaming, writhing fit as soon as we walked into the exam room. Sadly this has been his normal reaction to medical personnel and offices lately. They tried to do an EKG, but Ty kept pulling the cords off, and eventually he was sweating so they wouldn't stick anyway. We decided to call it quits and reschedule. Later that week we returned so Ty could have his tests run again but this time under medication. That was an interesting experience. 

When we first walked into the hospital room, Ty started to cry again. The nurses gave him medication to calm him down, and within ten minutes he was acting loopy. I was cradling him in my arms and felt as he grew more and more relaxed. He then started to poke at my face repeatedly and in slow motion, and then he would giggle very slowly each time he got me. It was quite entertaining. Thanks to the medication his echo went smoothly and he was back to his normal self after a good nap. 
Several days later, Ty's cardiologist called. There are two things the cardiologist always checks: the narrowing of Ty's aortic valve (the stenosis) and the back flow of blood through the heart (the leakage). We've known for a while that Ty's leakage really couldn't get any worse, but now his stenosis has slightly worsened. Ty's doctor wanted to discuss his case with the other surgeons in a conference last Friday.

Today the doc called to inform me that their goal is to get Ty to 2 years old before surgery. First of all, I was shocked. I had no idea he could still go so long without surgery. Their reasons for waiting are these: it's easier to operate on him the larger he is, his kidneys could possibly recover some more before then, and the larger he is the more likely they can put in a larger conduit that would allow him to go longer (possibly into his teens) before he would need his next surgery. Essentially, if we can get him big enough before his first surgery, he may be able to have one less heart surgery later on in life. Bottom line: this is good news!

The doctor reassured me that the change in Ty's heart will be very gradual, and that as long as he is doing fine and still has plenty of energy there is no rush. I assured him that Ty certainly is not lacking energy. I can hardly believe how much that boy moves around for someone who is supposedly working harder to do so. 

That brings me to this: Ty is 14 months old now, and it seems he only stops moving to sleep. Even when he's sitting to eat, he's still swinging his legs, bouncing, or dancing in his chair. He is a big fan of the cozy coupe, walker, mini trampoline, and riding toys. He recently climbed his first set of stairs, and just yesterday he repeatedly climbed up and down the one step in our relative's living room. If he's in a stroller or shopping cart he wants it to be moving quickly, and although he isn't walking yet I imagine it won't be long before he starts. If he gets even more energy after having heart surgery I don't know how I will ever keep up with him!

In other news, Ty received his last synagis shots last month (to protect against RSV), and although we are thankful for them we are happy to be done with them until next winter. Lastly, there has been another change to Ty Man that you can likely spot from the pictures below. Ben finally convinced me to buzz Ty's hair myself, so he is now sporting a new 'do. Now to wrap up this post, here is a batch of photos taken since my last post. Enjoy! 

Wednesday, February 26, 2014

Fragile

This morning I woke up with a feeling that something was wrong with Ty. I definitely have my moments of paranoia where Ty is concerned: Are his lips blue? Does his breathing sound wrong? Is he tiring too quickly? It goes on, but this morning I had a reason to worry.

Ty has thrown up some in the last few days, but we weren't overly concerned about it because the feeding tube occasionally causes him to gag and vomit. Around 4:00 this morning Ty threw up in bed, but it had been hours since his last feed so a red flag went up. At breakfast he wouldn't eat, and he threw up after we started his pump. I waited for a while and restarted it, only to have him throw up again within a couple of minutes. That's when I called his pediatrician and left a message with her nurse.

As I waited for a reply, I started to consider whether Ty had shown any other signs of illness. He had no fever and seemed fine, but then I remembered something that had been bothering me. For the last two weeks or so, Ty's bowel movements have been ink-colored and sticky. Anyway, we had blamed the change on a new medication he started taking last month, but now I was starting to wonder if it meant something. I read more about the medication and discovered that very dark stool was listed as a serious side effect of the drug.

At this point I called Ty's nephrologist since he is the one who had prescribed the medication. He instructed me to take Ty to the Emergency Room at the Children's Hospital. The fear was that Ty had an internal bleed, which would have made his poop black and also caused his stomach to be upset. I felt so awful for not telling anyone sooner about the change in Ty's diapers. Now I was afraid of what it would mean if Ty had a bleed and afraid of what else it could possibly mean.

Overall we spent over five hours at the hospital. They needed to do lab work most of all, which was downright awful. Ty had finally fallen asleep in Ben's arms, so he was quite angry to be awoken and repeatedly stuck with a needle. On top of that, his vein blew three times. Ty was flat-out sweating by the time the nurses were done.
When all was said and done, everything seems to have been coincidental. His lab results didn't indicate that he had a bleed. They believe his stool has just been black and sticky because of a combination of two of his meds, so we're going to try giving those on a different schedule. We're not sure why he has been vomiting, other than he may have a stomach bug, so we were given medication for that.

I am certainly relieved that nothing serious was wrong, but it was definitely a stressful day. Usually it feels like taking care of Ty isn't much different than taking care of a healthy boy, but today the difference was clear. We are used to his medications, his frequent appointments, and his feeding tube. What makes the biggest difference with Ty is the fact that so many things that could be small problems for other children can be big problems for him. A cold could land him in the hospital. Vomiting or tiredness can mean heart or kidney failure.

At the end of today, I am thankful again for so much support from family and friends. Thank you all so much for saying a prayer or two or more for Ty today. Obviously we were blessed to find out that these symptoms didn't amount to something serious.

I want to end this post on a high note, so I will share this fantastic picture. Ty hasn't been eating very well lately, but last night he shocked us by devouring a tray full of pasta, blueberries, and chocolate chips. For the first time in his life, Ty was covered in food, and he looked pretty darn pleased with himself. We were happy too for the hope it gives us that he will eat normally some day, even if as Ben said, we have to feed him pasta all the live long day.

Wednesday, February 19, 2014

Food Food Food

Another month has gone by, and it was fairly eventful for Mr. Ty. At his one year checkup, he weighed in at 18 pounds and was 27 inches tall. Shortly after that visit, he had blood drawn to check on his kidneys again. His kidneys have been holding steady for several months now. Based on his lab results, the nephrologist calculated that they're functioning at about 50%.

Yesterday a couple of women came to our house to evaluate Ty to determine if he needed any therapy services. Before the visit, I felt confident that Ty wouldn't need any therapy, but during their assessment I started to worry that I had been wrong. Several of their questions brought to light areas of his development that I hadn't realized were lacking. Fortunately, his overall scores showed that he does not need therapy, but there were some areas that were low enough that I now have some specific areas to work on at home.

During Ty's assessment, he went through another hearing screening. He passed his test, but they discovered he had water around both ear drums. Today I took him to his pediatrician to have it checked out. Fortunately, the water is there just because of sinus problems, and his ears weren't infected.

The pediatrician and I discussed our concerns about Ty's eating. Ben and I think there is no way Ty is getting enough calories. He drinks two ounces of milk or water at most a day, and although he is not a picky eater, he still only eats the equivalent of a cup of finger foods on a really good day. It could easily be as little as a third cup on some days. I'd be lying if I said it isn't frustrating. I fret every day over calories and nutrition. I constantly wonder if there is some food, flavor, or method that will motivate Ty to eat better.

Ben and I have determined that Ty only views eating as a pastime, and one that only sometimes interests him. His pediatrician agreed that Ty's eating issues need to be addressed quickly. We think he needs to be fed something instead of formula through his tube, but his kidneys complicate things so we'll be seeing a nutritionist again soon.

I can see this blog post is getting to be quite long already, yet I haven't even covered everything that happened this last month. Early in February my grandpa passed away, so Ben and I traveled with the kids to be with our family for his funeral. I loved my grandpa dearly, and he will be sorely missed.

We also celebrated Valentine's Day, and that same week was Congenital Heart Defect Awareness Week. To keep it brief, I'll only share a few statistics about CHDs. First of all, congenital heart defects are the most common birth defects in the U.S., affecting 1% of the population, or about 40,000 babies a year. There are more than 40 types of CHDs, and they are the leading cause of all infant deaths in the U.S. Despite the prevalence and deadliness of the disease, CHD research is grossly underfunded. You can make a donation to The Children's Heart Foundation here: http://www.childrensheartfoundation.org/donate-now.

In other news, Ty is crawling all over the place, he just climbed something for the first time a few days ago (the fireplace hearth), and he has started covering his own eyes to play peek-a-boo (which is pretty much the most adorable thing ever). At last, here is the best part of my post: pictures! Enjoy!

Monday, January 20, 2014

The Big One

One year ago we were blessed to welcome Ty into the world.

I have felt a lot of emotions today as I have reflected on the last year, but I am not going to spoil this wonderful occasion with memories of hospitals and hardships. I don't want to associate Ty's birthday with the trials that came shortly after. I want only to remember what a miracle of a child he is.

Some day I will tell Ty about the day he was born and how it couldn't have been more perfect. I went into labor in the middle of the night, and Ben and I went to the hospital around 4:00 in the morning. There was no rush or fear, because we already had one child. Everything seemed a lot simpler this time around. We seemed to be the only ones in the maternity ward that night, and our room was perfectly quiet. It was still dark outside so Ben and I both fell back asleep. It was still quiet in the hospital when it was time for Ty to be born. Ben held my hand, and the nurses spoke gently as if they didn't want to disrupt the silence, and after only a short time Ty made his appearance. They placed him sideways on my chest, and the very first thought I had when I saw him was, "He has the Gustin toe-gap," and I chuckled to myself. Then I admired his head full of dark hair.

Ty spent his first day being snuggled by loved ones and sleeping in the arms of his mommy and daddy. He was easy going from the start, and we were completely smitten. Leah was smitten too from the moment she hopped onto the bed beside me to admire the little burrito in my arms.

Today I am thanking Heavenly Father for allowing our sweet little boy to stay on this earth with us. I am thankful for the opportunity I have to get to know Ty. Let me tell you about One-Year-Old Ty. He is 27 inches tall and weighs slightly more than 18 pounds. He is good natured, social, and very expressive. His favorite food is cheese. His favorite book is definitely Llama Llama Hoppity Hop. He will stop what he's doing and dance when he hears catchy music, and he seems intent on speaking louder than Leah so he won't go unnoticed. He loves when Leah plays with him, and he is very ticklish. His favorite game is peek-a-boo, which he has actually just started doing himself by turning his head away from us and quickly turning it back. He enjoys swinging and being tossed in the air, and he likes it when I sing to him and even laughs at me half the time.

The world is better with Ty in it, and I am so blessed to be his mom.

Here are some pictures from the party we had to celebrate Leah's and Ty's birthdays. We were fortunate that many of our family members could celebrate with us. It was a great day of good company, good food, and really good ice cream cake. As Leah exclaimed, "This is the best birthday in the whole world!"
Ben had the day off work today, so we had some more fun for Ty's birthday. We spent a few hours at the OKC Myriad Botanical Gardens and gave Ty another cupcake this evening so we could sing to him again.


HAPPY BIRTHDAY, TY!

Sunday, January 19, 2014

On the Move

Ty Man has had some big happenings lately!

First of all, Ty just had another appointment with his nephrologist. He enjoyed playing around in the doctor's office, but he instantly became unhappy once the doctor arrived. Actually, he was very opposed to anyone holding a stethoscope. The kid is definitely catching on.

Ty's results weren't as good as we were hoping. His creatinine has only changed from .55 to .53 so they have barely improved in that regard. There were some things that looked good, but the doc is starting Ty on another new medication and is increasing two of the medications he is currently taking.

Honestly, Ben and I were both disappointed with the results, but we weren't terribly surprised by them. The doctor had told me at Ty's visit that at this point his kidneys would likely reflect his heart function. It makes sense that his kidneys wouldn't have really changed since his heart function hasn't changed in a few months either. If I understand correctly, his kidneys probably won't improve at this point unless his heart improves, which is unlikely to happen without surgery. Despite what I have learned through all of this, life with Ty's medical issues always feels like a game of "wait and see".

On a lighter note, Ty hit a major milestone a few days ago. He finally started to crawl! We are so happy for him and his new freedom. He had been trying very hard to crawl for a while, and he was obviously getting frustrated, so we are all excited to see him moving. As you can imagine though, we also are a little busier now keeping our eyes on him!

Tomorrow is Ty's big day. He will be one year old. I look forward to sharing more then, but for now here are a few pictures from recently. Enjoy!

Tuesday, December 31, 2013

The Year of Ty

This time last year, Ben and I were excitedly discussing all of the big things we were expecting to happen in 2013: have a baby boy, graduate pharmacy school, receive Ben's first military assignment, attend officer training, and move. We knew it was going to be a big year, but we had no idea just how big it was going to be! Throw in Ty's little surprise and the unexpected decision to buy a house, and we had a year packed with our biggest highs and lows yet.

One thing I can say for 2013 is, despite being the most difficult year we have had yet, it was also the most blessed, and it certainly ended on a good note. We are so thankful that life is "normal" again (what is normal anyway?). We have a nice first house, Ben has a great job that he enjoys, we are close to family and friends, and most importantly, we have each other.

I am so grateful for the way our struggles brought our family together this year. We learned a lot that I hope we never forget. As Ben and I look ahead at 2014, however, we feel exactly the opposite of how we did last year. Ben and I are hoping for a very uneventful year! Personally, a year of very ordinary things like laundry and going to the zoo sounds really appealing to me right now, although I wouldn't oppose to a much overdue vacation ;)

I have good memories of all my family this year (Leah has grown so much and has kept us laughing throughout this year); however, to me 2013 will always be The Year of Ty. He definitely had a big year. Being born is kind of a big deal, and so is nearly dying. (Go here to see a photo review of Ty's year.) Now that he's been there, done that, Ty has some pretty big resolutions for 2014. His most pressing goals are: 1) Get rid of his feeding tube. 2) Learn to crawl. 3) Catch our dog, Patchy.

Happy New Year, everyone! Thank you all for following Ty's journey this year and for offering up your prayers in his behalf. God bless you all in 2014!

Sunday, December 29, 2013

1st Christmas

This Christmas was honestly one of the most enjoyable ones I've had. Leah is at an age where she understood and enjoyed more of the holiday, and having Ty with us this year was priceless.

This year we got Ty a walker in hopes that he will use it to follow us around the house. He is trying so hard to crawl, and we can tell he gets incredibly frustrated at not being mobile, so hopefully he will feel a little freedom with the walker. One day soon he'll be all over the place, and some day he'll be able to enjoy Leah's gift, a mini trampoline.

We were fortunate to spend a little time with both sides of our family in the few days Ben had off work. On Christmas Eve night we had a small birthday party for Jesus, and Leah happily assisted with the cake making but even more happily with the cake eating. Ty missed out on the cake eating part, but he'll get some soon enough on his first birthday (First birthday?! I know, right?).

Ty and Leah both had a great time visiting family. Leah loves her grandparents, aunts, and uncles, but she is especially fond of her cousins and always has a blast with them. Ty enjoys being entertained and passed around by all the adults. We were also happy this year that my grandpa was able to leave the nursing home on Christmas to spend the day with us. Ty and Leah are blessed to have three living great grandparents.

One of my favorite parts of Christmas this year was putting together our Christmas cards to send to all of the doctors and nurses who have taken care of Ty. It meant a lot to Ben and me to write our heartfelt thanks to all of them and be able to give them an update and a couple photos of Ty. It would have been amazing to do all of that in person, but hopefully those cards at least brightened someone's day. Writing our thanks and updates definitely gave us an opportunity to reflect on how we have been blessed this year. 

One of the other highlights this Christmas was our success in gathering toys for the Children's Hospital at St. Francis in Tulsa. With contributions from both sides of our family and ourselves, we were able to give two large boxes full of toys, ranging from rattles to mobiles. I look forward to many more years of service projects that Leah and Ty can eventually be involved with. 

What a blessed Christmas we had! I know Ty won't remember his first Christmas, but it was nonetheless special. Our Savior has been so good to us this year, and we thoroughly enjoyed celebrating Him. 
 Finally, here is the coolest present Ty got for Christmas this year, courtesy of his Aunt Bethany: