Tuesday, September 1, 2015
Ty is playing a major game of catch up and he's winning!
This little guy turned 5 months old on the 24th and is growing in so many ways. He's added squeaking and squealing to his vocabulary. He has added a tooth to his mouth. He has even added two new talents - rolling from front to back and back to front - which he learned in about a weeks time! Way to use that big noggin' son!
We are still sporting the feeding tube, but we are making progress! Ty has discovered "the tube" and it's location so it has become a favorite toy. I often catch him pulling it, holding it, chewing on the end of it, or removing it all together. In fact, this morning when we got home from taking Ava Grace to Wee school, I discovered that after I started his feed, Ty had removed his tube and was feeding his car seat all the way home. Fun times! We have, however, made great strides. Ty will take an average 40-45ml when offered the bottle (when he is willing to take it at all). This is up from the 5-15 we had been stuck on for so long. We have also started some baby food at the recommendation of the feeding therapist. Ty doesn't complain, he just lets me stick it in his mouth and promptly spits it out. It doesn't matter how far I get it back in there - the kid is a professional spitter outer! But we keep practicing... we'll get there eventually. We are just praying we get there before they make him have a g-tube (directly into the stomach instead of through the nose) put in. Worse things could happen, but we'd like to avoid another surgery and skip that step if possible.
The coolest thing we have seen in recent days is the healing process on the inside showing proof on the outside. Ty's oxygen saturation varies throughout the day ranging from 100% to 90%. From the time he came home for good until about 2 or 3 weeks ago, his sats would drop every evening when he fell asleep. From about 6:00-10:00 (and I'm assuming any time he deep sleeps, although we don't put the monitor on him during the day to know for sure), his monitor would go off every 15 or 20 minutes as his sats would drop to 88, or 87 and then return to 90 or 91 where it would sit most of the night. Well, about 3 weeks ago, his monitor started going off less and less. In fact, this week it hasn't been going off at all! His sats now stay above 96 almost always - usually floating around 98-99! It is such a great feeling and we are praising God because we know this is proof that Ty is growing into his new pluming and God is healing him from the inside out!
In other news...
A fellow heart Momma and her hubby have started a non-profit organization called Project Heart! They are doing exactly what Chris and I have pledged to each other to do as well - spreading awareness and raising funds to further research and support families effected by congenital heart disease. Did you know that more children die from CHD each year than all forms of childhood cancer combined? CHD awareness and ministering to CHD families is a big cause and needs support in all forms! Please take a moment to check out the Project Heart website and find them on facebook to "like" their page! Click here to be directed to their website. They have some really cute shirts for sale too!
Thursday, July 30, 2015
I find it harder when home (as opposed to the hospital) to sit down in front of the computer to update. With all these cute kiddos running around and the usual home-making stuff on the to do list, time is precious and spare time is hard to com by. However, I know that several of you out there don't follow facebook, so I am sure you are wondering what the latest is on Ty. This week he graduated to the feeding seat so that he can now sit at the dinner table with us!
It wasn't as exciting as he thought it would be... either that or all the dinner activity and conversation was exhausting. He is turning into a very social baby and wants to be around us. He is still doesn't care to be held a lot - part of his disposition and his history of starting life in an isolette not being able to be held, I'm sure. He has been in his swing near the table while we eat dinner every night, but that wasn't close enough to the action and the last few nights he was "complaining" about missing out. So we got the feeding seat set up on one of the dining room chairs and now he is happy to be included in dinner conversation. Ava Grace, who gets to sit beside him, is the most excited about the new development.
Yesterday Ty had his 4 month well visit. He checked out just fine and is growing BIG TIME. He is weighing in at over 14 pounds and has moved up to 19% and 21% on the charts for height and weight. We are going to see a craniofacial guy because his fontanel is a bit on the small side, but it shouldn't be a problem as long as it stays open to one year of age. We are getting it checked out just to be certain that all we need to do with watch it.
Ty also saw his geneticist a few days ago. That visit went great as well. They were very pleased with his appearance and he isn't showing any outward signs of problems from his chromosomal abnormality. There is such little research out there on males that have 45x/46xy with a dicentric Y, but we believe that Ty will likely have little or no effect from his genetic mutation. He will possibly be sterile, but that's not a certainty. His heart was likely due to his genetics, but we are already dealing with that. They still believe that although so rare on paper, this may be one of the most common genetic mutations out there - it just has such little effect that most people probably assume they just have reproductive issues for an unknown reason. Without testing for other issues, in this case genetic testing because of his heart, they believe most people who have it just never discover it. We are going to an endocrinologist and a urologist to check him out thoroughly on the inside and make sure everything is as it should be. With all the testing and scans he has already had in his little life, we don't expect surprises, but want to be thorough. He will be followed by all of these doctors as he grows to make sure we stay on top of any arising problems.
For those of you keeping track, Ty is now being followed by 7 different types of doctors! He has a cardiologist, cardiothoracic surgeon, pulmonologist, urologist, endocrinologist, craniofacial, and general pediatrician. And he starts feeding therapy tomorrow. Oh. My. Word. My kid is well looked after. Thankfully the little guy knows no different and just rolls with it.
Enough about doctors...
At home we have been soaking up the love. The last four months have been a blur for all of us and it is hard to believe that summer break is over in a week! We are thankful that we got ANY days at home as a family, but it's hard not to wish we could enjoy a few more before work starts again. We have been making the best of our time playing the days away. We still live in a bubble for Ty's protection for the most part, but we have begun to venture out a little and that has been fun too.
We have found lots of fun things to do at home though. Thanks to Pinterest, we found this new activity that is a favorite of Ava Grace's and mine too! Freeze little dollar store dinosaurs (or princesses, or any other kind of little plastic toys) in layers of a block of ice. Then equip your little one with "tools" (we used a grapefruit spoon, salt, and syringes) to rescue the toys!
This was new and exciting for Ava Grace and afforded this mommy a full 45 minutes of time! That's right moms, she played on her own for 45 minutes straight! Mom win. You're welcome.
We have spent quite a bit of time on our front porch. We love our porch swing and have watched a few thunderstorms blow in, a few sunsets, and just enjoyed good swinging and conversation out there.
We have also ventured to he pool a few times. You know I am a water bug and just couldn't stand the thought of the kids not swimming this summer. We mostly go to the indoor pool at the civic center so that I don't have to have Ty out in the heat and so I don't have to sunscreen Ava Grace's sensitive skin. We did, however, catch one cloudy and sprinkly day that was perfect for a dip in the outdoor pool. It was cool enough and there was enough thick cloud cover to not worry about heat or sun screen and we took our nephew John Harris with us! So fun.
(Ava Grace had pringles for the first time in her life! lol. Quack!)
Overall, we have had several days of summer fun. We count each and every day a blessing. I look at Ty several times a day and thank God that he is here with us. I can't put into words fearing for your child's life, but I can tell you it gives you a deep appreciation for every second you get to spend with them.
My brother and sister-in-law are facing some big decisions right now and need lots of prayer healing and good health. God has already answered prayers and worked miracles in front of our very eyes, so we praise Him and ask for continued prayers from you.
Last, but not least, I have to share a couple of Pinterest recipes I tried and we loved! Click on the pictures below for the recipes. They are both EASY, QUICK, and DELISH! As in faster and cheaper than actual take-out. The whole family liked it. Another mom win for sure!
Friday, July 24, 2015
I know I sound like every other parent out there, but I have to say that it's hard to believe that Ty is already 4 months old! I thought time flied with Ava Grace! Time is going even faster with this little guy. Part of it was the period of hospital stays that makes us feel like we missed his first three months, but part of it is that life as a family of five is full and fast!
Ty has been busy making up for lost time at home. He spends equal time asleep as awake during the day and is growing like a weed. He sleeps 12 hours straight at night, but that doesn't translate to sleep for mommy and daddy because he is still using a feeding pump. He eats every three hours on the pump, so mommy and daddy have to get up to turn the pump on, and then off again after his feed - so we are up 6 times a night! All that eating translates to lots of growing. Ty weighs in at over 13 pounds and is holding steady on the small end of the growth chart around the 15th percentile.
His favorite thing to do is chew on his hands! He loves his hands and they are forever in his mouth. His second favorite new trick is getting a hold of his feeding tube and chewing on it! He pulled it out again yesterday, so we took advantage of it being out and took his "official" 4 month pictures here at home before we dropped a new tube.
Ty has also discovered his tongue and it spends a lot of time sticking out of that silly little mouth! He loves playing on his play mat and batting at toys. He is getting better at gripping toys and pulling them to his mouth, but still a work in progress. Head control has come a long way. We have been able to remove his head support in his car seat and bouncy seat, but he still has a long way to go. He does tolerate tummy time a littler better and although I wouldn't say he lifts his head to look around, he does turn it side to side while on his tummy so he can actually breathe - this is a big improvement. If I hold him in a seated position, he does pretty good holding his head up with minimal bobbing and the same when placed on my shoulder. He's getting better about not spitting up every time we hold him upright as well, so that helps. Every time I begin to think about him being behind I remind myself all he has been through and the fact that his chest has been cracked TWICE... if I were him I wouldn't enjoy laying on my tummy/chest or using those muscles to hold them up either!
Overall, we couldn't be happier with his growth and progress at home. Mostly we are grateful that we have been able to stay home and not be readmitted to the hospital. That is certainly a first in his little life.
Today we head for our weekly trip to Vandy. This time it is to meet with his geneticist. It will be interesting to see what they say.
In closing I would like to request prayers for two things. One, that Ty will make great strides toward eating by mouth. He still only takes a tiny amount by mouth before feedings and we'd like to see this improve rapidly. We start feeding therapy next week. Ty is the only thing holding him back from getting the tube out - as soon as he'll take his whole bottle we can get rid of that thing! I also would request prayers for my family as a whole and specifically my brother and sister-in-law. I will leave the details for them to share, but they are facing some life-changing battles and decisions today and in the coming days, weeks, and months. Please pray that God will work miracles for them and bring healing.
Thank you Lord for your abundant blessings. Thank you for using even the most confusing and scary situations to bring glory to your name.
Sunday, July 12, 2015
We have officially been home for two weeks. 14 whole days. There was a time that 14 days straight at home was a dream and now it is a reality and we are still going strong.
Our days are full and so are our hearts! We have had quite a few doctor visits, but in between those we are enjoying being home so very much. Ty is doing awesome! His sats are stable and although he still breaths too fast off and on, it is no longer the constant struggle. Every now and then we catch him with a respiratory rate of 80-90, but for the majority of the time he stays in the 60, which is really good for him. He still retracts some when he breaths, but they expect the high rr and retractions to get better as he grows. He also isn't doing well feeding by mouth. He can, but doesn't seem to want to - please join me in praying that he will simply decide to start taking his bottle! In the mean time, we are still on the feeding pump.
We have had to adapt as having Ty around changes quite a few things. He isn't quite ready to be out and about and is still recovering. We also want to avoid having him outside in this extreme heat and humidity, so we have tweaked our summer activities from the norm. We are staying home and spending less time at the pool, but we are still having fun!
I am slowly helping the house "recover" from three months of neglect as I dig out from piles of laundry and empty bag after bag of stuff we had packed to take to or brought home from the hospital on our many trips back and forth. The girls have been enjoying lots of craft projects, which they both love!
Yesterday we created a little indoor herb garden. Ava Grace checks about every two hours to see if there are leaves yet, bless her little hopeful heart. Today we are going to make peanut butter bird feeders so she can see a more rapid result to one of her projects!
Ty has been cleared for Tummy time, but still has lifting precautions (he has to be scooped up from bum and head instead of under the arms). He has been working on some catching up too! He's a little behind, but we are making progress. His head control has improved enough to remove the newborn head support from his car seat and swing, but he still doesn't lift his head when placed on his Tummy. Instead, he acts like we are absolutely crazy and lays there, face down, waiting and fussing. He'll get there. We have also been working with him on grasping and swatting and he's coming right along!
Lily is our aspiring chef. There isn't much on TV these days that a family can watch together, but we have discovered that we all enjoy several shows on The Food Network and they are (mostly) appropriate in content and language. Lily's favorites are Chopped, Next Food Network Star, and Master Chef. She genuinely loves them and has taking a big interest in cooking. I have always encouraged the girls in the kitchen and they almost always "help" me when I cook, but I have realized Lily needs to take on more of a leading role in the kitchen. Sometimes kids are capable of so much more than we expect if we just loosen up and let go of the control! This is particularly hard for me in the kitchen, but yesterday we gave it a go. I sat at the bar and simply instructed as the girls made a HUGE batch of from scratch Tennessee Spice Muffins together! (Did you know you can freeze muffin batter in muffin cups and bake them straight from the freezer later?) We stocked the freezer with muffins yesterday that will be oh so yummy this fall on cool school mornings!
The girls have enjoyed "coaching" Ty. Here they were coaching him through Tummy time and showing him what to do! It is so fun to watch all three of my littles enjoy each other!
This week we plan to enjoy more time at home adjusting to our family of 5. Ty has cardiac clinic on Tuesday and he will get an EKG and an Echo, so I am excited to see those results. Ava Grace has a dentist appointment for a second opinion on a dental issue, so I am hopeful for good results there as well!
Outside of our doctors appointments we plan to do a lot more of this! Cuddling, snuggling, crafting, cooking, and maybe some indoor swimming too!
And last, but not least... I have some news. I saved the BEST news for last, of course!!
This beautiful girl, my precious step-daughter, is now also my sister in Christ! Lily got saved last week at revival at her Mom's church. I can't even put into words the joy in my heart. Thank you Lord for your grace, your love, your sacrifice, your forgiveness and your gift of eternal life in heaven.
Happy Sunday y'all! I hope you each have a blessed week.
Friday, July 3, 2015
Five days ago I loaded Ty up in the car seat and walked out the doors of Monroe Carell Jr. Children's Hospital at Vanderbilt and drove home. Five days. It seems like a huge accomplishment given the past three months with our little guy. He never really follows the plan.
We had planned to discharge a week ago, on a Friday morning, but he threw us a curve ball with his blood pressure. So we tweaked his meds and planned to head home Friday evening instead. He had other plans. So we aimed for Saturday morning. Still not ready, but maybe at 4:00 Saturday evening - nope. Then we shot for Sunday at actually made it.
It has been a WONDERFUL five days home. The girls have enjoyed having him home and so have Chris and I. I think the most enjoyable part for all of us has been being able to be TOGETHER for a change!
We have taken it easy and each day has held some hesitancy on the part of Chris and I. We know that Ty is better - he looks like a new baby, but every time we attach him to his pulse-ox monitor at night I think we hold our breath a little waiting for the number to come on! Ty has, for five days, held steady above 95 % oxygen and a healthy heart rate in the 130s for the first time in his life (at home).
We have ventured out a few times. Once for a visit to the pediatrician. Ty has, understandably, been slow to grow, but he is still on the charts! His percentiles are as follows - 10% in weight, 14% in height, and 26% in head circumference. On Thursday we had 3 appointments scheduled - caridac clinic at Vandy for Ty, a blood draw at Centennial for Ava Grace to be allergy tested, and then feeding therapy in Hendersonville for Ty. Being himself and never sticking to the plan, Ty ended up having to be xrayed and his cardiac clinic appointment turned into a 4 hour event that caused us to cancel the other two appointments! Thankfully, his lungs looked good even though he was retracting a little. We don't go back to clinic for almost 2 weeks - they thought he looked great!
Today we ventured out to the civic center to take the girls swimming at the indoor pool for an hour while Chris worked out! Ty slept for a few minutes, then got out and laid on a beach towel and talked with me while the girls got in some summer fun - finally!
Overall it has been the most fun week of the summer by default. It's the ONLY week of the summer we have been home to spend time together and not been COMPLETELY stressed out.
The girls have had fun being together and at home! They have played and baked and laughed their way through the week
Ty looks so good and is doing things that sweet babies his age should do. Today he discovered his hands and spent some time gazing at them. He has some catching up to do - he is no where close to holding his head up yet and he can't even do tummy time for 4-6 more weeks, but we'll get there. In the mean time he is "talking" non-stop, grinning like a fool, and we have even caught him laughing in his sleep two times!
I tell myself every day I will never ever take this for granted. When I first wake, when I lay down at night, and countless times in between I find myself in prayer repeating, "thank you Lord... thank you Lord... thank you Lord." This has changed us for the better and I am forever grateful to our Father in heaven for choosing us for this precious miracle and for allowing him to stay here with us. We pray that Ty continues recovery safely here at home and that his health continues to improve and that he thrives. We pray that we all thrive as a family and that God is glorified through our story.
Friday, June 26, 2015
We are ready to take our little man home... and they are ready to send us home... but in typical Ty fashion, he is changing our plans!
Yesterday they *almost* sent us home, but he had a couple of low blood pressure reading and we needed to tweak his blood pressure medication a little and watch him over night. On the new dose, we have watched today and his pressures are still low, little stinker. No cause for concern, his repair is great and is echo looks terrific, it is just the human element - finding the right dosage of the right prescriptions. So as of just a few minutes ago, they decided we better stay the night again. We are dropping one of his diuretics and reducing his other diuretic (yay!) and leaving his bp med at the new lower dose to see if that does the trick! Eventually we'll hit the perfect combination for our little guy and we'll get to go home!
In other news, post surgery #2, Ty wants nothing to do with his bottle. We are having to do all his food through his tube. Today we tried waiting longer to get him nice and hungry and put some vanilla flavoring in his formula to help with the taste... he was slightly more receptive, but still only took 2 ml. After all we have been through, having to use the feeding tube is not that big of a deal, but I'd still like to ask for prayers that Ty will begin to want to take more from his bottle. We are anxious to see him do all the "normal" baby things.
I wake up every morning with a song in my heart - singing praises to our Lord for the wonderful work he has done in Ty! I can't say it enough - Praise the Lord! He is Good. We are blessed.
Tuesday, June 23, 2015
One of the determining factors on when to have heart surgery is "the ability to thrive." A baby who is growing and gaining weight at home is considered a baby who is thriving. A baby that is not doing those things needs surgery or intervention on some level. Well, we haven't made it home quite yet, but this is what thriving looks like to me! Look at that grin! Look at that handsome pink-skinned little boy! I look at his monitor and see nothing but good solid numbers - 100% oxygen saturation, a healthy 131 heart rate, and breathing 42 times a minute at the moment - half of what he was doing in heart failure!
Here he is with ALL of his lines out - pacing wires gone, RA line gone, chest tube gone... the only thing left is his pic line which stays in place until discharge to give us easy access (if we need it) to give medicine or blood or to take blood for labs. He is off all of his drips and on oral medication only! He isn't on any cardiac meds at all - just meds for reflux, constipation, and blood pressure... that's pretty good in my book! We hope to see all of those become unnecessary over the next few weeks or months as he adjusts to life with a healthier heart!
Here Ty is with one of our heroes! This is Dr. Mettler, the surgeon that did both of Ty's repairs. I'm kind of at a loss for words when it comes to him... he is kind, caring, confident, and so good at what he does! He is the kind of surgeon you would hope to have. I hope we never need his services again, but I know that Ty is always in good hands in Dr. Mettler's OR. The Lord is doing great work through this man's hands and mind and we are overcome with gratitude. How do you adequately express appreciation for the man that saved your child's life... twice? There are no words, but our hearts are full for him and his family. We have prayed for him since the moment we found out that our cardiologist chose him to operate on Ty and we will continue to pray for him and the work he does for the rest of our lives.
It'll be a few days yet, but we got our going home shirts ready! My friend graciously gifted these to us, but they actually have a business, so if you need cute shirts, you can find them on Facebook:
(I also had her save this design - I'm getting shirts for the girls that say "brother" instead of son and for the grandparents - if anyone else wants one, let me know!!)
Today Ty graduates from ICU. We have a bed upstairs waiting for us as soon as they finish rounds down here. Ty also gets to try a whole bottle by mouth to see how far he gets. He may have to work up to it as he gets stronger and his stamina increases, but we are going to let him try to see how he does.
I have leaned heavily on the Lord and tried not to worry over the past weeks and really months. No matter how much I gave my stress to the Lord, there was always an inkling of worry and "what if" that would play around the edges of my mind. I would pray and push them away, but they would come back... it was a constant battle and vicious cycle. Last night as I drove home I noticed that I was smiling. It was a smile that wouldn't fade and I noticed that my soul was quiet and calm. It is well with my soul. The fear and anxiety on the fringes of my being have faded, at least for now. The journey with congenital heart disease is a life long one. Ty's battle is not over, it will never be over until he walks with Jesus, but we have come leaps and bounds and are in a much safer place now. His heart is mended and it feels good. Praise God from whom all blessings flow. He chose to let Ty stay with us and I believe He has big plans for our little guy with a very special heart.