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Almost 4 months old!

10/8/17

I’m feeling super emotional this morning and needing to get my thoughts out of my head and this seems to be the best venue for that. I am sure a lot of my overly emotional issues this morning stem from lack of sleep. I still don’t have nursing help. That whole process continues to be a nightmare. But Kaden is doing really well, and I’m still so grateful to be at home. This morning one of the children of a family that I knew during my stay at Ronald McDonald House passed away. He needed a new heart, which he finally got, but his body rejected it so he didn’t make it. It has just had me reflecting on how blessed and grateful we are to have Kaden safely join our family. I don’t know why God allows some children to stay while others have to return back to Him, but I know His plan is perfect. Please join me in praying for this family during there time of sorrow. They have already expressed they know their son is with our Heavenly Father at peace and that they are grateful he no longer has to struggle with the challenges his mortal body had.

10/26/17

Well I’m grateful to be sleeping again! I realized that those six weeks that I cared for Kaden w/o any nursing care will forever be such a precious time in my life with him. Almost every morning at 5 a.m. I would pull him into bed with me, him laying on my chest and we would sleep that way for a little while. I’ve only had nursing help less than 2 weeks, but I miss those special mornings of bonding time. Now I am back to full time caregiver for Joslynn which I am LOVING!, but I soak up as much time with Kaden as I can whenever she doesn’t need my attention, which is rare.

Snuggling my Kade-bear

This morning I am at Cook Children’s hospital with Kaden. He is having an MRI so we can determine the best course of action to move forward with his care. I feel like we just got home and settled and now we have to prepare for the next phase of his journey. Right after his MRI, I will meet with an interventional radiologist to discuss his results and the potential for sclerotherapy treatments. I will take his results to meet with a lymphedema specialist in Dallas on Monday, and then on to Houston on Nov. 3rd where we will follow up with his Houston surgeon  (Dr. Olatoye) and other team members. So we will be making more big decisions for Kaden in the next couple of weeks again and appreciate the continued prayers that we can make the best decisions for him. In the mean time, we have found a lymph drainage therapist that is helping us learn techniques we can do on Kaden to help his lymphs find natural drainage channels. Kaden really is such a sweet, happy baby and is growing well. We are so grateful for the amazing care he is receiving and optimistic for his future.

Kaden loves his aquarium and lovie!

 

    Playing is such tough work for a little guy.
Can’t get enough of these cuddles! I know they’ll be gone before I know it.
Such a happy, smiley boy! 🙂

***I know some of these pics are sideways but I’m doing this post from my phone so I’ll have to fix them when I can get to my computer. Sorry :/

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Home at last…and on to the next chapter!

Truly, I had NO idea what I was in for when we got home. I thought I knew how things would go, but I was SO wrong. I pretty much immediately had WAY more gratitude for Kaden’s nurses and caregivers. They would tell you I was doing pretty much everything for him the last couple of weeks he was in NICU, but it really doesn’t feel like that was the case because taking care of him by myself (with the help of my family, of course) is WAY HARD! I have very few nursing hours right now while we wait for insurance issues to be resolved and the few I do have I’m using sparingly to get a few hours of sleep. And maybe caring for Kaden wouldn’t seem so hard and overwhelming if it weren’t for the (seemingly) million other things I have to micromanage like insurance issues, medical supplies and equipment being delivered, and correct when they get here, nurses (scheduling and dealing with them being late or not showing up at all), doctors and appointments, and on and on. I feel like I spend so much of my day on the phone running the caring for Kaden business. People that have been in my shoes tell me some day it won’t be so overwhelming and exhausting, but it’s hard to believe at this point. All that to say, I really am SO happy to be home and absolutely LOVE taking care of this sweet Kaden boy. He is such a good baby, especially considering all he has to deal with. And it’s so nice to be Mom to all my amazing kiddos again!

But let’s back up for a second. On my last post, I mentioned it was time to hunker down for the hurricane. That was on Saturday, Aug. 26th. I had stayed in Kaden’s room the night before and got no sleep. It felt like the hurricane was all hype as it was only a little cloudy and barely drizzling. The news was saying it wasn’t going to get bad or start flooding (if it really was going to, I still didn’t believe it) until early Sunday morning so I decided to go back to RMH and get a good night sleep. BIG MISTAKE!! I got up around 6am on Sunday morning to head back to the hospital. My car was in the garage below RMH so I drove out of the garage and toward the road and right into a river (it was still dark outside). REVERSE!! I backed up so quick. Then I headed to the other side to try and drive out that way only to come to another river. I was trapped! RMH was literally an island surrounded by rushing water all around. It was so hard not to panic, but I knew Kaden was safe and I was safe so all I could do was try to keep busy and not go crazy. When one is put in this situation, one tends to get a little creative in their thinking…I thought maybe I could put my suitcase in a trash bag and pull it behind me while I swim to the hospital. I also wondered if I took one of the wheelchairs at RMH and tried to use it like a boat to keep myself above water by standing on it, but I lacked an ore. I’m sure there were many other crazy ideas I had, those just seemed the most plausible (HAHA!). There was plenty to do at RMH and I really enjoyed spending the day serving. I could see the road (actually a river) in front of RMH, the one leading back to the hospital, so I just watched it like a hawk, all day and most of the night until around 6am on Monday morning I was able to see the road and thought I’d try to get back to the hospital. I was able to get about a quarter of a mile down the road, just enough to turn into the medical center and get into an above ground garage which put me close enough to walk to Kaden through connections between the hospitals. It was so super eerie being outside the morning after the devastation. My prayers continue to be with the many many people who have to deal with the severe consequences this storm has on their lives.

Many of the care givers required to be at the hospital to help me complete things I needed to do to have Kaden discharged to get home couldn’t make it in to the hospital for several days after the hurricane which we thought was going to push our discharge date back quite a bit. But it ended up that we were able to get things done and were only delayed by 1 day which allowed us to discharge on Friday, Sept 1st. That put me in Houston almost exactly 3 months, with a 65-day NICU stay for Kaden. 

Leaving TCH was one of the most bittersweet experiences in this journey. Kaden pretty much had the same several nurses and we came to love them like family. As you all know, I have spent a good deal of time in hospitals and with countless doctors/nurses/therapists with my other 2 medical kiddos and I feel like they received great care, but nothing could come close to comparing to the exceptional level of care Kaden received in the TCH NICU. The care I received from my fetal intervention team before he arrived was the same. They were not only outstanding doctors/nurses/therapists, they also cared for us like family. I could feel the love they had for me and my sweet boy and I’ll never be able to adequately express how grateful I am for that. We were all so excited for us to get home and working so diligently towards that goal that it was shockingly sad when it came time to actually leave. I felt like a part of my heart, my family, my life, was being left in Houston. I am so grateful for social media so we can continue to keep in touch and am already looking forward to our follow up appointments in Houston in the coming months and years so that we can visit our TCH family.

So here we are, a little over 2 weeks at home again, and beginning to feel like we are settling in a bit. There is a long road ahead on this journey. We have come a long way through some very rough, stormy waters, but with our loving God at the helm, we will make it through and (hopefully) learn a little something along the way 😉

8/28/17 Kaden is 2 months old!
This was Kaden’s first time outdoors. It was the Tuesday after Harvey and the first time the sun came out since the storm.
We were abundantly blessed with the most extraordinary nurses! Here are a couple more of our favorites, Lauren and Ashley!
Kaden with one of the best, Esmeralda 💞
Dr. O came to tell us goodbye the day we were leaving. We will miss this magnificent man!
These sweeties stole my phone and took this pic when I popped into the restroom on our way out. Love them!
This is the look of excitement and anxiety. I was so happy and ready to go home but so scared and sad as well.
Claire and Esme helped us pack up the car and get Kaden settled in for the journey home.
Holding hands on the drive home🤗
All of my amazing kids, finally together!
Kaden with Aunt Angie!
MY BOYS! It took Judson some time to feel ready to hold this sweet brother that has so much going on, but it was so special when he did 😊
Oh how I missed this! Can’t get enough!!
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The countdown begins!

I’m sorry I missed my weekly post on Wednesday. Taking care of this little boy is extremely busy. I’m even trying to factor in how to care for my other children and run a household while caring for his many, round the clock needs. But I’m super excited to get home and figure it all out. We won’t be receiving as much nursing care as we were originally led to believe, but I’m thinking it’ll be okay because I don’t know that a nurse would have anything to do since I’m more of a do-it-myselfer. Kaden has been doing well with the exception that he started throwing up the end of last week. Not frequently, but enough that it has raised some red flags. There’s just so much going on that it’s hard to pinpoint why, but he continues to be stable and do well so I don’t think they will end up keeping us for this reason. At least that’s my hope. In other amazing and spectacular news, they’ve moved up our discharge date to August 31st! Again, I’m being very careful to not get my hopes up too high, but everything seems to be falling into place. Now, it’s time to hunker down for this hurricane. Good thing we’re in the safest place we could be! Hope you all enjoy your weekend and everyone has a good start to the school year!

I came in one morning to find him all sprawled out like this. Doesn’t look comfy to me, but whatever, lol!
This is Dr. (Shweta) Parmekar. All the nurses call her Dr. Shweta. She was Kaden’s longest attending Neonatologist. She is the sweetest, most caring lady and I always knew Kaden was on her mind and that she was giving him her BEST care. LOVE HER!
CLAIRE!! She is Kaden’s trach nurse and the one training me on how to care for him. She is SUPER fun, caring, and awesome at her job! She pushes me, but I will be ready for anything because of her.
We put a mat on the floor in Kaden’s room so I could have some “real world” cuddle time with him.
Time for our wagon ride! This is the first time Kaden has left his room since birth, except for surgeries, of course. We took Claire and Derek (the one who brought and trained me on all of Kaden’s equipment, and also a respiratory therapist) “in case of emergency”, which they did create, which I did fail and cried through, but I’m going to remember the beginning of this trip when I was still smiling 😉 The next day we did another wagon ride and I was SUPER prepared and did GREAT in the “emergency” situation.
When it was still a fun ride, lol!
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7 weeks of survival

As I was visiting with Veronika from PR here at TCH, I was telling her about this blog and the wonderful support you all provide, always telling me how strong I am. I told her I don’t really feel like this journey is a matter of strength, but rather one of survival, and maybe endurance. If I could choose NOT to go through this, I would! I think what you all may perceive as strength is really just me choosing to find as much joy and peace in this trial as possible. I see so many families around me being sad and negative, and rightfully so. I don’t want to take from what they are experiencing or going through. And it is important to feel those feelings and not supress them. I have certainly done my fair share of crying and complaining. But I realized the sorrow and negativity doesn’t do anyone any good; not the doctors, nurses, or any care providers, and not the families and babies. There is no denying that being in the NICU with a baby, especially for a prolonged period of time, is mentally and emotionally exhausting, but there is also much to be grateful for each day if we are willing to see it and focus on the good and blessings in life. On top of all that, when I’m happy and cheerful, the nurses, doctors, therapists, EVERYONE I come in contact with each day is typically happy in return. Smiles are contagious for sure!

Moving on…Kaden is 7 weeks old today and I’m excited to say that I can finally see the light at the end of what has been an extremely long tunnel. We have a projected discharge date of September 5th! As long as Kaden stays on track with the weaning schedule set for his medications, continues to do well off the vent, and I stay on my training/education schedule, then we’ll be home in 3 weeks! I can hardly believe it! And I’m trying really hard not to get my hopes up in case we have a setback in one form or another and end up having to stay a little longer. So we’ll just be here working, playing, and praying! XOXO!

Playing and sleeping

Smiling at Daddy
Joslynn is SO excited we get to hold Kaden now 😉
Grandma Lee loving on Kaden
Lots of Mommy and Me pics

A couple of Kaden’s favorite nurses…Jo on the left and Kelly on the right.
My dear, sweet friend, Jodie, came to visit for a couple of days.

Me doing trach care on Kaden.
This is the first time I was able to hold him stomach to stomach because we had to let his g-tube site heal and here he is off the vent on his trach collar (heated humidified air just near his trach) so there aren’t so many cords to deal with.

 

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Busy Busy 6 week old

Kaden is 6 weeks old today and we are busy busy! The days are going by so fast now. And getting to hold him is AMAZING! Kaden is busy weaning his trach vent and meds, and learning and growing, of course. He started speech and occupational therapy and will start lymphatic massage soon as well. He will also have a medical stroller to help him sit up and gain muscle strength and head control. I am busy learning how to take care of him! I am pretty much doing everything for the “cares” that happen every 3 hours…diapers, temps, feedings, oral care and a few other things that would be hard to explain. I have also done 3 trach cares now and Jason and I will do his first trach change this weekend. The nurses are loving me more now that they don’t have to do as much 😉 I also am spending a good bit of time working with care cooridinators to get Kaden’s medical team ready for him at Children’s Hospital in Dallas as well as home health nurses and equipment. There is still lots to do and learn but we definitely have the ball rolling.

Jason, his Mom, and Joslynn are coming this weekend, then Brie and Jud come Monday for a couple of days again, so I’m really looking forward to that and spending time together before life gets crazy with back to school. Hope you all enjoy these final weeks of summer. This is not how I expected or wanted to spend this entire summer, but when I look at this angel baby sleeping in my arms, it is all worth it! It’ll be over and we’ll be home before we know it 😁

My first time holding Kaden…SO SWEET!!
Kaden’s NICU care team the first day I got to hold him. Such wonderful, special ladies!
This is Dr. Rosenburg, Kaden’s ENT surgeon. She is AMAZING!!
More snuggles!
Look at this sweet bear 🙂 Big boy in his big boy bed with clothes on!
My handsome little man.
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Misunderstood, but moving forward

I adore him!

Kaden finally started to stabilize on Wed. with a few dips and small setbacks here and there but yesterday and today he’s been pretty much back to his baseline and happy when he’s been awake. 2 more days and I’ll get to hold him!! Monday is going to be such a huge payoff 😄

Yesterday I was thrown for a major loop as I found out I’ll be here for at least another month, where in my mind I was going home in less than 2 weeks, per a previous conversation with a doctor.  Some days you feel like you can face anything and others you feel like you’ve been knocked off your feet. Today is the latter for me, but I’ll get strong again and make it through the rest of this journey.

So learning how to take care of Kaden’s trach and Gtube is quite a process. There will be lots of education classes, bedside training from the nurses,  and even a test I have to pass. It will take a while to wean him from the high doses of morphine he’s been on. Getting his care transferred and having home health care established will be quite a process. Anyway, there’s so much more but I’m trying not to feel overwhelmed. We’ll just take it one day at a time and I’ll work as hard and fast as I can to learn it all and push everyone to get things in order for him as quickly as possible. The hardest thing is I will not be home to send my kids back to school. Hopefully I’ll be back by the first week in September though.

Learning how to feed him through his Gtube
So I can’t feed him orally, but I get to put my milk on his tongue and he LOVES it.

My little (even though he towers over everyone in our family now) brother Brandon has been here the last couple of days. I have really enjoyed his company. He makes me laugh, keeps things light-hearted and positive, and helps me keep things in perspective, which I really needed after yesterday’s disheartening news. He picked up this quote outside Kaden’s room…”God does not give us everything we want, but he does fulfill His promises, leading us along the BEST and straightest paths to Himself.” Perfect timing, as usual. Thanks for your continued love, support, and prayers.

My brother, Brandon, is here!!
Wide awake talking to his uncle

Heartbreak and challenges continue outside this little NICU room for your families, I know. I had a cousin and a friend’s 5 month old baby pass away unexpectedly this past week. My heart and prayers go out to their families in this time of sorrow. How grateful I am to know our God has created a perfect plan wherein we will be reunited with our loved ones again and then have forever to spend with them. Hug your loved ones often and never let a chance to say I love you pass you by. Life is short and time with loved ones is so very precious.

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Fighting strong at 5 weeks!

Kaden went in to surgery about 8 a.m. yesterday and finished about 12:30. All of his procedures went very well (tracheostomy, g-tube placement, and circumcusion) but they’ve had a hard time getting him to stabilize after surgery, so it’s been kind of chaotic. His heart rate is low and blood pressure is high, on top of several other concerns like a low hematocrit and hemoglobin and high glucose levels. He even had to have an EKG, which came back abnormal but acceptable due to his high level of sedation. We’re still working on getting him stable, but he’s starting to do a little better.

He is supposed to stay in a paralyzed state for 3 days, but he hasn’t been stable enough to give him the paralytic, so he is super sedated and we have to stay close to his bed so if he starts moving we can stop him. They’ll start letting him move around a little on day 4 and 5, and then hopefully will do a trach change on Monday at which point I would be able to hold him 😄

The swelling on the back of his tongue and down his throat is much more significant than it was during his initial surgery. His surgeon showed me the pictures and he most definitely would not be able to breathe without a trach. The swelling is due to lymphatic fluid backup on top of irritation from having the breathing tube down his throat for so long.

I had my big kids (Brie & Judson) here most of Monday and Tuesday so they were able to wait with me while he was in surgery. They were a wonderful distraction and comfort. I really enjoyed my time with them and can’t wait to get home to be full time mom again to all my awesome kiddos soon.

Waiting for Kaden to get out of surgery.

People keep asking how I’m doing and, honestly, I don’t know yet. I haven’t even been able to process this due to the chaos of just trying to get his vitals back to a good place. The nurses are starting to talk to me about how to care for his trach so I’m trying to internalize the things they’re saying now. He should get his first feed through his g-tube tomorrow so then I’ll get to see more how that is going to work. My very dear, sweet friend that lives down the street from me, Chanda, came to be with me yesterday evening and today. She has a toddler that has a trach and g-tube so she is a great support and resource!

Chanda came to help!

We had to stop his sirolimus (the drug that has been so good at bringing down his lymphatic swelling) for him to go to surgery but we will re-start it in a week once he’s had a chance to recover and is no longer at high risk for infection. I’m being told that after his initial trach change on Monday, it’ll take about a week to educate me on how to care for him at home and then we’ll be headed that way! However, he will not have anymore surgeries for at least 6 months, so, when you see us, and his deformities, just know we have more work to do. It’ll just be a long, slow road from here now with his care transferring to Children’s hospital in Dallas and several trips back to Houston over the next few years. I don’t know why but it’s been hard for me to hear questions like “when are they going to fix that?” Or “is his tongue always going to be that big?” I think that’s why I’ve chosen not to post pics of his malformations. I just really need him to be loved and accepted as he is.

All of my favorite nurses are here and will be here for the rest of the week which is such a huge blessing and comfort. It’s the only way I can even leave his room or go get a few hours of sleep. I know he is in the BEST hands!

Thanks for all the uplifting messages, kind thoughts, and prayers! You all are keeping me going! Hope you and yours are enjoying these last few weeks of summer. Love and hugs!!

 

 

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Change in plans…

I’m doing an update that’s not a “weekly” update because his 5 week update will be 1 day post op now. Yes, a lot has changed in the last 48 hours. 

Friday afternoon, ENT had to come readjust, re-suture, and re-tape Kaden’s ET tube (his breathing tube) for the 3rd time in his short life. One of the ENT fellows, Dr. Hill, who had previously done this for Kaden, had one of the head ENT doctors attending with her while she did this procedure. Apparently, that doctor was very unhappy that Kaden still has his ET tube, which is considered a critical airway for him, and lit a fire to get him a more secure airway ASAP. None of this was discussed with me on Friday afternoon/evening, and is wasn’t until I asked the night nurse where his evening does of sirolimus was that I found out they were stopping that medication because they needed to start a steroid so that he could go into surgery early next week. WHAT?!?!?!?!? So, as you can imagine, I pitched a holy fit and had my nurse start paging everyone (ENT, surgery, attending NICU doc, etc.) to try to get to the bottom of it. If you remember, Kaden wasn’t due to go in for surgery again until Aug. 7th. His main doc and surgeon, Dr. Olatoye, is in South Africa until the 6th. At this point, everyone is gone for the weekend because it’s Friday night at 9pm. So, I told the NICU doc to give his sirolimus and that no plans for Kaden are to be changed until I get some answers. I was back at the hospital very early Saturday morning so that I wouldn’t miss any doctors, since I knew they would be looking for me to see why I was going against their plans. I started with a visit from Dr. Hill. She explained to me what had happened the previous evening and said they hadn’t talked to me because it was still a discussion and not a plan. Then why the heck were there orders given to stop a drug that is having a very positive impact on Kaden?!?!?! Apparently, this discussion (which was happening over text) between Kaden’s head team members went on well into the night on Friday. She was able to answer all my questions, share with me the reasoning that this is suddenly so urgent, and reassure me that ultimately, the decision to follow their advice and move the surgery date up was ours to make. After visiting with her, I did understand she had some valid points in that Kaden’s airway becomes more and more compromised each day but I was still feeling very uneasy about Kaden going back into the OR without Dr. O. Shortly after visiting with Dr. Hill (ENT), Dr. Lee (surgery) came to visit with me. He is one of Dr. O’s associates of 8 years and explained to me that the surgery team is in full support of the ENT team in getting Kaden to the OR ASAP. I shared with him my anxiety about going into the OR without Dr. O and he assured me that Dr. O trusts him completely and they are very like-minded in care of their patients. He said he thought if Dr. O was there to assess Kaden, he would agree. He answered my medical surgical questions and then I told him I needed to move this to a spiritual level. I told him I know that even though Dr. O isn’t here to assess Kaden’s situation, he would know if it is a good idea to proceed without him because God will tell him. He agreed and told me he would share my concerns with Dr. O and then let me know as soon as he heard back from him. He then shared with me the scripture I shared on FB, Jeramiah 29:11, as he is also a Godly man. When he left, I sat down and looked up this scripture. It gave me a great deal of peace, so I prayed to know if I needed to put my own anxieties about proceeding without Dr. O aside because it is what Kaden would need. Shortly thereafter, Kaden started having a hard time when they would suction his ET tube and I had a very strong impression that his airway was not likely sustainable for another 10 days. He is also getting more strong and wiggly as he’s getting older and has found ways to get his hands free from the swaddles and wraps we use to keep his hands contained. If his hands get free, he could reach up and grab his ET tube which would be the worst-case scenario. At this point, I’m realizing that I really need to start wrapping my head around a Tuesday surgery date. So, I sit down to pray and ponder some more and open my prayer list notes. Yes, I have so much to pray about these days that I have to write it down, but I’ve also seen that when I pray more specifically, I get more detailed guidance. The top 3 on it were for Kaden to have his surgery and recover quickly enough for me to get home before my big kids start back to school, for Kaden’s swelling in his tongue to continue to come down so that he won’t have to have a tracheostomy, and for his doctors and medical teams to know how to best care for him (I promise the list is long and not only about Kaden, but many of YOU!). At this point, I realized all those prayers are being answered, just not necessarily the way I wanted them to be. So, I had my answer and, thankfully, Jason was here so I was able to share the events of the morning, my thoughts and impressions, and hear his. All that was left was to hear back from Dr. Lee that Dr. O was in complete support of the new plan and that Dr. Rosenberg, the ENT that was with Dr. O in Kaden’s initial BIG surgery, would be the surgeon to perform Kaden’s DL&B (Direct Laryngoscopy and Bronchoscopy, basically looking around in his airway to see how well it’s healed) and potentially his tracheostomy should SHE decide it’s necessary after every other option has been exhausted. I am still hoping for a miracle here, but I’m being told and I understand it’s more likely that he will have to have a trache. I had my hopes set on this one more week before surgery for the sirolimus to bring down the swelling in his tongue more, but his doctors all agree that they believe it has done all it is going to do. Let me repeat, I have not lost hope in a miracle here. Dr. Lee did come back in the afternoon to confirm Dr. Rosenberg will be the surgeon and Dr. O gives his blessing for Dr. Lee to take his place and proceed without him. I still don’t like that this is happening without Dr. O, but I do now know this is the best plan for Kaden. Ok, that was a super long explanation of why we are moving his surgery date up but it was a mighty struggle so I wanted to make sure I have it written down. I also want you all to know that I know God hears and answers prayers exactly when we need him to and provides peace and comfort when things feel scary and chaotic. Please, keep the prayers coming! Especially on Tuesday morning, if you think about it, please offer a prayer for Kaden and his surgeons and medical team.

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Kaden is 4 weeks and going strong!

Kaden is 4 weeks old today. It feels like I’ve been here in Houston for an eternity, yet hard to believe this little boy is already 4 weeks old. Kind of feels like I’m stuck in a time-warp. Anyway, we had some good news the end of last week. We found out that Kaden does not have Joslynn’s COLA1 gene mutation (the cause of her brain small vessel disease, epilepsy, hemiplegic cerebral palsy, developmental delay, and autism), nor does he have Judson’s NDI (Nephrogenic Diabetes Insipidus, a kidney disease). This is very exciting as we can now turn our full attention to moving forward on his path to recovery without worry of other medical conditions. We also found out that he will go back into the OR on August 7th. When Dr. O gave me that date last week my heart kind of sunk. August 7th seems so far away, but Dr. O, his surgeon, wanted to really give the sirolimus medication more time to diminish the size of his tongue as much as possible so that we’ll know we gave him the best chance at not having to receive a tracheostomy. His tongue IS diminishing in size, so we’ll just keep hoping and praying it continues to come down over the next week and a half. He will, however, definitely be receiving a G-tube since it will still be a long process to ensure he is able to swallow and use his airways appropriately. After his next round in the OR, he will need about a week to heal, a week to educate me on home care for him and make sure I’m comfortable with it all, and then we may get to come home!! His docs and I set a goal to get me home before the kids go back to school. Please pray for that for us!

Jason thought I should mention some of the many miracles we’ve received through this process. We can look back and know for certain that God’s hand has been in this from the beginning. Due to the concerns I had about Kaden’s potential genetic issues based on the medical challenges his siblings have struggled with, my first OBGYN, Dr. Tse, and I decided we would have the high-risk doctors do more in depth genetic testing than what is typically done and have that team follow me with my pregnancy where genetic issues may be concerned. My initial genetic testing didn’t show any issues, but with the concerns about fragile brain vessels like Joslynn has we determined that my anatomy ultrasound at 20 weeks should be done with the high-risk doctors because their eyes are more highly trained to see any potential issues like that. That is when we found Kaden’s neck mass. Had a regular tech been doing Kaden’s anatomy ultrasound, this could very easily have been missed. The other miracle in working with the high-risk doctors is that Dr. Anderson, who initially found the neck mass, referred us to see the surgeon at Cook Children’s, Dr. Thomas. He was certain he could handle removing what we thought then was a cervical teratoma but encouraged us to come to Houston to consult with the doctor he had trained under, Dr Olatoye. Had we not gone through the chain of events that we did to bring us to Houston, Kaden may very well not have made it after his delivery. If you’ve been keeping up with my blog from the beginning, you’re well aware that there are many many other miracles we’ve experienced through this journey. We continue to see God’s hand in our lives daily and feel the presence of guardian angels.

My nieces, Faith & Brynnley, sending their support with a Ronald McDonald pic 😊
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3 weeks old!!

Sweet hands
Peek-a-boo!

Kaden is 3 weeks old today and 16 days post-op. I have been in Houston for 46 days. That’s quite a few numbers, but who’s counting?😉 Can you tell I’m anxious to get home? But still no closer to knowing when that could be a possibility. ENT wanted to take him back to the OR tomorrow to look in his throat and see how well he’s healing inside, but it is being put off for at least another week. His surgical team wants to give him more time on the Sirolimus to see how much more swelling we can get to come down, especially in his tongue, because when they do go back into the OR, they will remove his breathing tube to see if he can breathe on his own and if he can’t due to his tongue still being too swollen, they will trache him (perform a tracheostomy). They may still have to even with waiting another week but at least we will have given him a better shot. I have been told to plan on him having a g-button (feeding tube going right into his stomach) regardless of when they go into the OR. And whether or not he can breathe without a trache, he will still need many procedures in his mouth and throat and they want him to have a way to eat throughout those procedures. So for now, we continue to watch and wait, praying the medicine helps but being willing to accept whatever is best for Kaden’s success.

Saturday evening we had a little scare. Kaden’s breathing tube had slipped down too far and was making it so he had a hard time being comfortable and getting good air. So the ENT team and anesthesia team had to come to his room (seriously, like 10 people) to reposition and re-tape it. Since it’s a critical airway, they have to be prepared to do an emergency tracheostomy should they lose his airway during repositioning. Thankfully, they were able to get it all taken care of with no issues and he has been resting comfortably every since. He still hates being turned, repositioned, and having his diaper changed, but other then that, he seems to be tolerating everything he has to deal with quite well.

Another Ronald pic 😉 This time with my sweet friend, Jeni.

I am so grateful for the gospel of Jesus Christ that allows me to have the comfort and support of a loving ward family wherever I am. I feel such wonderful support from family and friends at home (Thank you Jeni and Tricia for being my companions last week) and throughout the country but am also receiving such sweet kindness and caring from the local ward I’ve been attending here in Houston. The sweet sisters of this ward check on me consistently, send gifts and care packages, and come to visit Kaden and I. THANK YOU WEST UNIVERSITY WARD RS SISTERS! I feel so sad for the families that have babies here and seem so alone and unsupported. I try to befriend them and offer a smile and encouragement. I have even had the opportunity to share my testimony of the love and care I feel from my Heavenly Father and Savior and the perfect way he has set up his gospel to give me the support I need, right now especially.

The spirit is so strong in Kaden’s room. I know those who enter can feel it. He definitely has a very special purpose in this life and is already fulfilling it on some level. I have lots of special spiritual experiences daily and can see and feel God’s hand. For example, several days ago, there was an area of Kaden’s surgical site that was looking as though it may be getting infected. I know Dr. O is super busy so I don’t request him at Kaden’s bedside very often. He has fellows that check in on Kaden daily. But this particular morning I knew it needed to be Dr. O to look at and assess Kaden. I asked the attending doctor to page him and prayed it would work out for him to get to swing by at some point in the day. Not 20 minutes later, we started rounds (where the NICU doctors and nurses caring for Kaden that day meet and discuss how he’s doing and make any changes to his care they deem necessary) and Dr. O walked up. The attending doctor hadn’t even had a chance to page him and mentioned as such. At that point I said, “well, I prayed him here so he didn’t need to be paged” to which he replied “and now you all know who I work for.” He has helped me have such a deeper understanding of our Savior’s love and ability to always be present in our lives when we need Him. He healed the sick, and Dr. O is serving as His humble instrument to heal my sweet boy. All of Kaden’s doctors, nurses, and care team have been spectacular which shows me HE IS HERE.

In case you’re not on FB and didn’t see this post…I don’t have any cell service in Kaden’s room, which is where I am 90% of the time. FB Messenger works great in here for phone calls and messages. If you text or call and I don’t get right back to you, this is why. Thanks for the continued words of encouragement, all the checking in to see how I’m doing and how Kaden is healing, and, of course, for the continued prayers!