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.
Sunday, June 21, 2015
This little dude is knocking it out of the park! He even gave us a smile - pretty good Father's day gift I'd say. He only required pain medication once last night and once today so far. You can tell by the pictures he is out of his groggy haze of sedation and looking much more like himself! They are working on getting him off his drips and on to oral medication. He started continuous feeds yesterday and tolerated them, so now we are working on bolus feeds to get back to where we were. He is doing so well, in fact, that the nurse practitioner said if we get off our drips we can probably talk about leaving the ICU and heading to the floor tomorrow! Yippee! I can't even express how much more smooth this recovery is going compared to last time and I am loving it every minute.
Friday, June 19, 2015
I'm going to go out on a limb here and say that there is no feeling in the world like rocking your sweet baby knowing that you are about to send him off to the operating room where they will crack his chest and stop his heart. It's scary. You fight the what ifs and push them out of your mind as far as you can get them, but they float around at the edges. You feel a sense of urgency to soak up every moment of the squirmy, warm, sweet smelling little person that you love so much you feel like you'll pop. I guess in some ways you do pop, because the tears spill over.
This is just a tiny shred of what we felt yesterday morning. I rocked sweet Ty to sleep and looked at his perfect precious face - who would guess he was in such severe heart failure. Looking at this handsome little cutie, it was hard to believe that all this was necessary, but I know from what we have been though that he needed this surgery to get better!
So at 8AM they took him back.
At 9:30 they made the first incision.
By 11:00 they had stopped his heart and put him on bypass.
A little before 1:00 we were notified that the repair was complete and they were going to work on getting off bypass.
The entire process went much faster than Chris and I expected.
Then at 1:45 we sat with our surgeon to hear how things went. He said that he was "ecstatic" with how things went. He was confident the patch would hold, had repaired the valves and they were no longer leaking, believed his small left side would be adequate and had even found a defect no one knew about (that he's never seen himself), but didn't need to be repaired. Turns out that Ty has a valve on one of his valves... like a mini version of itself. It is fully functional and doesn't leak, so they left it alone and said it shouldn't cause problems.
It was a good 3 hours before we were able to head back to see Ty:
We have been cracking up at his tongue hanging out - that's a new one! He has been doing well so far. He actually woke up when they got him to the ICU, started wiggling and opened his eyes. They said it was because he has had all of these medicines before and knew all their tricks - so they had to up some of his doses to keep him comfortable. He still squirms and scowls if you mess with him, but he hasn't opened his eyes and if he doesn't settle himself quickly we give him morphine. It's good that he's aware enough to wiggle, but we certainly don't want him in pain.
This surgery was more invasive in terms of the heart - since the defect was in the middle of the heart, so rhythm can be an issue. Ty had pacing wires last time, but didn't have to use them. Last night he kept throwing a funny rhythm every now and then so they tried to cool him down to help. Chilly room and an ice pack on the head. He did get rid of that issue, but we still ended up needing the pacing wires and as of this morning he is on a pacer, but they are confident that it's just until he comes off a couple of the meds that slow his heart down. This is not a pace maker in his heart, but a little box that sits in his crib and is connected to the pacing wires that run to his heart for the post-op stage of recovery.
The recovery process is always a delicate balance of constant adjustments - tweaking doses of meds, getting him cooler, getting him warmer, getting his pressures up, taking his pressures down. So it was no surprise that we came back after dinner to heat lamps and blankets trying to warm him back up after trying to cool him down.
For those wondering about the blanket on his head - this is how you sleep in the dark in the ICU. lol. Every time they take it off, he won't sleep! He needs the room dark, like his mama!
These were taken this morning. He had a good night, but was "feisty" every time he had to be touched in any way.
This was the best sight this morning though:
This is the respirator - see the green line in the middle? See the purple lines within the green lines. This heart mama knew from experience what it means - I took one look at that bad boy and said, "He's breathing over the vent!" Yep - He's breathing well over the vent and this morning we will start trials to see if he can come off!
Let recovery begin.
Lord I am speechless, but you know the praises and gratitude in my heart. You also know what Ty needs and what the next few days will be like. We lean on you Lord and we praise you for where you have brought us. Thank you Father for your mercy and love and for taking care of our precious boy and allowing us to call your child our child.
Thursday, June 18, 2015
This heart warrior is at it again. As I type he is in the operating room and should be getting the first incision of his surgery at any moment. He will be in the OR for most of the day and it will be likely be this evening before we get to see him again. We have been here before, but for some reason this time carries more weight. We know him better... we know the joy of his smiles and the sound of his sweet voice "talking." We also know that by the books it is too early to be having this surgery. By the book he should be able to go a few years with his anatomy without any trouble at all. We also know that Ty doesn't play by the rules - he has never fit the mold. So at just shy of 3 months we find him in severe heart failure and in need of help. His slightly leaky mitral valve has become moderately to severely leaky. The right side of his heart is enlarged and the left side on the smaller side. His ASD in need of a patch and his VSD patched by whispy tissue that did so on its own needing to hold sutures, but dangerously thin and fragile. This surgery has more risks - there is danger of the valve leaflets not holding up to repair and requiring replacement, risk of messing with the electrical system of the heart and requiring a pace maker, risks of the patch not holding and tearing loose. This surgery also, however, has the potential to be beautifully perfect and the possibility to not only relieve all of his heart failure symptoms, but to free him from limitations and future surgeries. Ty is a fighter. Even in his degree of heart failure, sweating and breathing 100 times a minute, he smiles and coos and looks so wise. He's my hero.
Please join our family in praying. Pray for Dr. Mettler and that God will work through him to heal our sweet boy's heart. Pray for the surgical team. Pray for the holy spirit to be present, filling the OR. Pray for Ty's heart to be strong enough to hold the patch and the sutures. Pray that the left side of Ty's heart will be adequate and adjust to the increase in pressure and volume. Pray that this surgery leaves Ty healthy, free of symptoms, and repaired for life. Pray for God's will, His peace, and His presence with us as we travel this road. To Him be the glory.
My dear friend Kristin came Tuesday to visit and brought her camera (of course). I am beyond grateful for her generosity and for capturing precious moments of our little guy! Thank you for loving us - we love you! If you need pictures, Kristin is wonderful - look her up on facebook under Kristin Leisman Photography.
Sunday, June 14, 2015
A week ago tomorrow we were discharged. We were a little anxious after another extended admission to reboot and try home again. On discharge the attending cardiologist said it was a 50-50 shot that we'd got home and stay home for the full 3 weeks, but it was "worth a shot." We were told, "even if you only get a few days out of it, it'll be worth it. If you end up needing to come back, you know the way." So, home we went on Monday afternoon. I have to say, the days we got at home were the most enjoyable and relaxing we have had at home with Ty. We were a little more comfortable this time because we now have seen what Ty looks like on the decline and were a bit more confident that we would recognize problems before they got too bad. Monday afternoon and night were uneventful and we so enjoyed being together as a family of 5! Tuesday was another enjoyable and uneventful day, as far as Ty. His sats were good, his heart rate great, and his breathing was too fast for him to try to take any milk in a bottle, but not so fast to cause alarm. He had some retching and moments of being pale and sweaty, but hey, we know he is in heart failure, so not looking 100% all the time is kind of expected. Tuesday night Mimi came to spend the night with us so that that Wednesday morning we could take Ty in for his first cardiac clinic appointment and the girls could stay home and play. It was a great day and a pretty good check up. Ty was sweaty, pale, and breathing fast during his appointment, but our wonderful cardiologist confirmed that these were signs of his heart failure that we expected... the goal was to maintain. The rest of Wednesday was a really good day.
(Happy at home)
(Hooper home pharmacy - and this doesn't include what's in the refrigerator! #heartfailure)
(Good morning snuggles... don't judge, we're a paci lovin' bunch)
Wednesday night is when things changed a bit. Over the course of the night the monitor went of just a few more times than it had the two nights before. No major desaturations, but dipping to the lowest end of his goal and then coming back up subtle changes. Thursday morning I rolled over in bed to look at Ty sleeping in the bassinet next to our bed - I checked his respiration (we periodically do this all day) and he was breathing 102 times a minute. I made a mental note to watch him carefully, subtle changes. His sats were on the low end of his goal as well... floating around 90-93 as opposed to 95 or higher where he had been, this is okay for him to be at, but it's another subtle change. Chris had noticed too and we commented to each other that our time at home better be enjoyed while it was lasting.
Thursday was a great day. Ty was happy and smiling, not fussy. His respiration was again too high to take any by mouth and he retched a couple of times in the morning. He was really sweaty, but it came and went more or less. I caught him breathing over 100 times a minute a few times during the day and noticed that he wasn't getting lower than 75 times a minute even at rest. I knew we were headed down a familiar path, but wagered that we might get another day or two out of our stay if we were lucky... or at least one more night at home.
(Found my fingers - love to lick 'em)
Thursday later afternoon, the girls and I were hanging out on the back deck playing with the water and sand table when Chris came to the door and asked me to come in. I knew immediately he was concerned about Ty. He had retched again and then turned very gray. We took him out of his bouncy seat and laid him flat on a blanket and Chris went to get the pulse ox. He was sating in the high 80s and we decided to give him some time to recover, so I went back out with the girls. Ty fell asleep and we periodically checked his sats and respiration to see if he could recover on his own. After an hour or so he hadn't improved and actually started sinking lower and lower into the low 80s, even throwing a reading in the 70s a couple of times, so we called our cardiac clinic nurse. I was already packing my bag when she called back - we were asked to bring Ty back to the ER.
Upon arrival to the ER, Ty appeared happy as always and smiled at each person that came in. He passed his EKG, his chest x-ray looked good, and his sats had recovered back into the 90s. His respiration was still elevated, but not in the 100s. The one thing that had changed pretty dramatically was his BNP (indication of heart failure). We had gotten his BNP down to the 50s on our last discharge and when his labs came back at the ER, his BNP was back up to 385. That's a big jump in just a few short days. They decided they better admit us for overnight observation. I was still holding hope that we just jumped the gun and he was actually doing fine.
We got up to our room on the floor after dark. He settled into a good sleep and I headed to get something to eat. When I got back I got in some snuggles and then after 10 or so, I laid down to get some rest. Ty's monitor kept going off as his sats dipped just below 88 (his goal). They came in and dropped his goal to 85 and we continued to keep an eye on him. In another hour or so the monitor started going off as he dropped just below his new goal of 85. Before long he was setting off the red alarm as he flirted with the 70s... time for oxygen. He got about 10 hours of low dose oxygen and then weened back to room air. After his shot of o2 he maintained sats in the low 90s and his respiration settled out. Friday he had a great day with really good respiration rates and decent sats. They decided to adjust his feeds some, run a virus panel, and observe through the weekend - we'd either see a new man on Monday or we'd decide we need to stay until surgery (in which case they'll likely move surgery up). Saturday was perplexing, Mom and Sarah came to spend the day at the hospital and saw first hand how our little guy stumps everyone. He had slower respiration, but was sating in the low 90s slowly dipping into the 80s. Then we gave him a bath and the next thing I knew he was sating 100 - absolutely perfect!! Then the nurse came in and he was breathing over 100 times a minute. Now, it's Sunday and his respiration has settled into the 60s and 70s (not too bad for him) and his sats have stayed above 95 all morning. The attending wants to observe one more day before we make the call. So for today and tonight we are at the hospital, waiting and watching. Who knows what this next week holds - it could literally be anything between snuggles at home with our little guy to an expedited open heart surgery.
(Having Sarah and Mama here was good for my soul!)
One of the valuable lessons I have learned through this experience is to take life one day, sometimes just one moment, at a time. I can't plan ahead for days or weeks or months. This has been a hard lesson for me. Living in the moment is sometimes an unsettling feeling, but it is also very liberating. It actually feels really good to just lean on God and let him do the planning. So, today I leave you with two verses that I have held on to over the past months and that have truly developed meaning to me as I have had to trust these verses more deeply than ever before:
Sunday, June 7, 2015
Well, I'm tucking this little guy in tonight for the last night before (another) discharge. He has been stable and looking good for several days in a row now, so it's time to go home. We are thrilled he is doing so well, but so very anxious to head down the path we have started down what seems like many times before... leaving the hospital with a seemingly stable boy, only to head back in a downward spiral. Our hearts are filled with hope that this time will be different. We now have 5 medicines on board whereas in the past we have gone home on only one or two. With the help of the medicine, Ty seems to be managing his heart failure enough that they feel he can at least try to safely grow and strengthen at home for exactly 3 weeks. We are scheduled for open heart surgery on June 29. As parents we want the best for all three kiddos, of course. We want the girls to get to do fun summery stuff like swimming and playing outside and spending time together as a family of 5. We also want Ty well and safe and are ready to get this repair done in the hopes that afterward we can start a healthier, less-stressful childhood for him and all of us, really. He is the sweetest little boy and we feel like he is already wise - you can see it in his eyes.
I am so thankful to so many people, I can't even being to express our gratitude. The Facebook friends (and strangers) who have supported us in prayer.... the countless donors who have contributed to Ty's medical fund... the family who have pitched in, come to see us, done things for us and for our girls... the friends who have been there in prayer and in support in so many ways. We are so humbled. God has worked through each of you - you have literally changed our lives.
I have to specifically mention a few people on my heart tonight that fall into a special category. Those of you who have come, at some point or another, to love on and rock and play with Ty when Chris and I couldn't be there. Through the loss of Chris' father that kept us away for two days and through today when we had a special church service with his mom and then Lily's birthday celebration that kept us away all day. You have impacted our lives with your gift of time - which I know is so precious. I can't wait to tell Ty about all the special people that loved on him when we couldn't be there! So, thank you Lauren, Megan, Natalie, Sarah, Anne, Linda, and Donna. Also to Cindy, Sheron, and Jennifer - I know we had discussed y'all coming this week, but it looks like we won't be here. Thank you for the offer and there is a very good chance when we come back at the end of the month for surgery #2 we'll be calling on you again!
We feel so loved. God has put so many people in our lives and provided in so many ways that we are overcome with gratitude. Our situation and the outpouring of support has truly revealed that Christians really are the hands and feet of God. The Good far outweighs the bad. The Light outshines the darkness.God is good - all of the time.
My friend, Kristin, asked for a picture and some information on Ty today. She designed and printed the following pictures for something her church is doing. I was honored. She also asked for a Bible verse for Ty. For a split second I felt like I was put on the spot and my mind went in 100 directions searching for verses. Suddenly everything in my mind went empty except for Jeremiah 29:11, which was LOUD and CLEAR in my thoughts. I have no doubt that God decided which verse I should claim for Ty and made it perfectly clear. "For I know that plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." I claim this verse for Ty. Our hope is in the Lord and he will take care of our precious son - for he is really just on loan to us and is truly a child of God.
Wednesday, June 3, 2015
We have known since before Ty was born that he would require some assembly, so to speak. His aortic arch had to be reconstructed at only 9 days old and, as most of you know, we have been in the hospital for the most part since then.
Ty has been a bit of a mystery. Although we know he has a transitional AVSD (holes in his heart and a leaky valve), we also know that he should be able to live a pretty healthy life with his anatomy until it can be repaired at 2 or 3 years of age. Apparently no one filled Ty in on that plan. Our surgeon says he sees a baby like Ty about once a year. A baby that, for whatever reason, can't thrive with his given anatomy and needs a repair much sooner. Our goal was to make it to 6 months of age before the repair. After 6 months, the repair is much less risky. Unfortunately, given Ty's struggles, we moved our goal up to a window of 4-6 months of age for open heart surgery #2. Now we are changing our goals again.
Yesterday Ty headed into the OR for a sedated echo and bronchoscopy. We got a lot of answers that we have been seeking for some time now. First, we met with the pulmonologist after the bronch part of his testing. Ty has a few little quirks that are not uncommon in an heart baby that he will out grow. His airways are a little floppy and that may be contributing in part to his respiration difficulties, but will resolve with some age and size. The best news from pulmonology was a huge answer to prayer and what this mama has wanted to hear for so long: It is very likely that the pulmonary hypertension we are seeing in Ty is due in large part to his heart. They would expect and we will all hope, that after the repair his pulmonary hypertension will be reduced to the point of being a non-issue or even that it completely goes away.
The echo part of his test also gave us a lot of answers. They weren't necessarily the answers we wanted, but it is certainly nice to have answers instead of having a little mystery baby that no one can quite figure out. Let me tell ya friends, it's a little unnerving when an entire department of cardiologists at a premier children's hospital are scratching their heads about your little one. So what were the answers we found?
Ty's heart failure is getting worse. Now in addition to an enlarged right atrium, his left ventricle is beginning to enlarge. The added pressure has caused some LV to RA shunting in addition to the mild LA to RA shunting we were already aware of. His valve that we knew was a little leaky is now looking very leaky. He is overcirculating. We don't know exactly why his heart is reacting this way to a defect that others are able to cope with, but the evidence is there. In short, we can't wait any longer. Ty needs his heart fixed and he needs it fixed soon.
So, it looks like we'll be camped out here for quite a while longer. They are talking to our surgeon today and Ty will be a topic of cardiac conference again at the end of the week to make sure the whole department is on board with his treatment plan. Once these things have taken place, we'll have a surgery date. We were told that our surgeon may want to wait another two or three weeks if Ty can do okay during that time. It really is up to him, Dr. Mettler, who thankfully has already open Ty's little heart up and seen the defect in person. We have complete faith in God to watch over our sweet boy and to work through Dr. Mettler and his more than capable hands. We again feel so blessed to have been gifted such a talented surgeon and such a spectacular medical staff to take care of our baby boy.
We will keep you posted and as soon as we know our surgery date I will be certain to update everyone. In the mean time we are hanging in there, taking one day at a time, and soaking up the little moments of "normal" when we are able to get them.
We have been overwhelmed at the prayers and generosity that friends, family, and strangers have showered on us. We are humbled. Still people continue to ask, and some have even begged, as to what can be done to help. The number one thing we appreciate and covet is prayers and lots of them. We also enjoy visitors - especially during the day time. As hard as it is, we try to be home for dinner and evening hours so that the girls maintain at least a little bit of normal routine. We also appreciate close family and friends who are willing to give a few hours of time in a block to sit with Ty at the hospital (hold him, put him on his play mat, talk to him) so that Chris and I can spend time with the girls as a family or with each other. We are almost never all together at the same time and that is something that would be so meaningful. Especially with it being summer, we feel that it is important for the girls to get to do things with us that they normally would... we don't want them to feel like Ty is overshadowing them.
As for today, we are thankful. Ty has been trending in a good direction the past couple of days. His sats are good, his color is good, and this morning he had LOTS of energy to play on his little play mat - working on his grasp and kicking and waving and cooing until he was completely worn out and ready for some milk and and a nap! Through all of this we are learning to enjoy the small things, to look for the blessings in each moment, and to not take anything for granted.