In His Honor

Sorry for the long post, once again, I’ve waited wayyy too long to make another post with some updates. While I have the time, lets catch you up…

Jaxtyn completed the phase 2 trial in STL. YAY!!! This rockstar of a son completed all infusions and made great progress through the 8 months he was back and forth from San Antonio to St. Louis. His liver function tests improved and his liver size overall did decrease. Hallelujah. He will always have an enlarged spleen and liver (due to NPC), but any progress is better than none. We already miss STL and all of the amazing staff we worked with at St. Louis Childrens Hospital and Washington University. They loved Jax dearly and treated him so well. Our bonds will last a lifetime, and we will keep in touch with many beyond this trial.

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JAXTYN TURNED ONE!!

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Jax had a blast at his Dino themed birthday party!! We had so many friends and family from out of town come visit this special little boy. He was blessed to be loved on by everyone at his party.

NEW TRIAL

Jaxtyn, myself and Bae all traveled to Bethesda, Maryland to the National Institute of Health (NIH) this last week. Jaxtyn is involved in a life study that will follow how he is affected by NPC throughout his life. This study helps gain information that will hopefully help Dr’s in the future to coordinate care for those affected by NPC. Jaxtyn underwent many tests in the three days that he was being seen at the NIH. He had labs drawn, liver Fibroscan, liver ultrasound, hearing test, barium swallow study, skin biopsy, and a neuro/psych evaluation. Besides his large liver and the correlated labs everything else was normal. He highly impressed the ladies who performed his neuro eval, as well as his Momma who sat amazed at some of the things he was doing while they were testing him. He tested as high as an 18month old in almost all areas.
While our visit there, we got to meet up with some old life group friends and see a little bit of Washington D.C.! Jaxtyn really liked the Smithsonian Museum; he ran around laughing and looking at all that was on display.

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One of the interesting facts I found out from our visit with the Dr at the NIH, was how fast hearing could be lost once intrathecal infusions begin for Jaxtyn. A side effect of Cyclodextrin being administered intrathecally in these kids is hearing loss. I’ve always imagined it being years down the road with a slow loss, but we were informed that it COULD happen immediately after the first dose. This is not always the case, in fact it’s “rare”, but the possibility is there. Otherwise, they said within 1 year it’s normal to have signifiant hearing loss. Hearing aids are going to retro this loss. With all of this information, including how advanced Jaxtyn is currently, the Dr feels comfortable waiting another 6 months to allow Jaxtyn to build up his speech and re-evaluate him in May. As soon as there is a plateau or regression in his development, treatment will begin. Until then, we continue to watch this miracle boy progress and learn as much as he can.
We returned home and immediately met for his annual review with is early intervention team here in San Antonio. He no longer needs his occupational therapy, and we are SO SAD to no longer have his therapist with him weekly. She has been such a great help, and we appreciate everything she has done for our family. Jaxtyn will now be getting speech therapy weekly. He is not technically “behind” developmentally in speech, but as I mentioned, we really want to have Jax excel in speech before he NEEDS intrathecal infusions.

During our travel back to San Antonio, we sadly missed a presentation that was given at the Childrens Hospital here in town by our genetic councilors. They were involved in Jaxtyn’s care when he was diagnosed in utero and now as he is followed by genetics. They presented to many physicians and staff at the hospital and even got to share updated pictures/videos of Jax. I was notified first thing Monday morning that the presentation went very well and Jax caught the attention of the Obstetrician-in-Cheif with Maternal Fetal Medicine. They now want to share Jaxtyn’s story across a few different media outlets.
Any way to spread awareness about NPC and share how many resources are available is a great opportunity. 🙂

I will try to update as we maneuver through this holiday season and all we have coming up! Happy Thanksgiving, Merry Christmas, and Happy Holidays! Just in case. 😉

We appreciate the constant prayers. In God we Trust!

In His Honor,

Momma and Jax

Hello for all that have hung around long enough for this post! Life seems to get going and be crazy these days. Momma thinks about updating the blog more than she actually sits down long enough to get something typed out. Ha ha

Jaxtyn is 9 months old! Holy moly, where has the time gone! He is WALKING and talking and doing all the things. This boys never ceases to amaze anyone; Drs, therapists, strangers, family or friends. He never meets a stranger either, it may take a minute to check them out and watch their behaviors, but he warms up quickly and loves unconditionally.

Since being home from STL (oh you know like 3 months ago), a lot has happened for Momma and Jax. Momma is working and its been a life changer to actually have normal hours mon-fri and be able to not worry about “on-call” hours or having a crazy unruly schedule. She loves the time she gets to spend on the weekends with this precious baby boy. Her job allows her to serve the best population of patients as well, the retired SAPD and SAFD. (They are amazing!!)

Jaxtyn is busy spending his summer with Mimi part-time and with his sweet Nanny Jessica the other days. Mimi and him have a blast splashing around in the pool on the back deck, and singing and playing around the house. When he’s with Jessica he feels right at home! He plays and spends time with her whole family including her two children who adore Jax. He loves going to Miss Jessicas and being active with all of the learning and fun adventures they have.

Jaxtyn has blown his occupational therapist’s mind and has exceeded all of the goals set forth for him. Every couple weeks she’s having to come up with something new for Jax to work on since he picks it all up so fast. He has [pretty much] fully mastered the gross motor developments expected for 1 year olds, and is getting close to mastering fine motor skills. He is walking very well for a 9 month old (started when he was 8 1/2 mo), and gets so excited when he’s walking — almost running. He can say “Bubba” and “Momma”, he waves “hi”, claps his hands in rejoice to anything exciting or fun, and shakes his head side-to-side with the biggest grin. Jaxtyn has completed 4 swim classes and can successfully hold his breath for 2 seconds under water. This boy LOVES the water.

Jaxtyn continues in phase 2 of the trial and has been doing well medically. He weighs around 23 pounds and is super tall (ht?) for his age. We travel to STL every month for an infusion, the last one will be in October. Pretty sure the staff at STL Childrens Hospital look forward to the days Jax comes in, they all love him so much! Thank you to Mimi for taking Jax the last two months so Momma didn’t have to request off anymore days of work. She has been a trooper traveling with an 8 and 9 month old on a plane and keeping up with him during those long infusion hospital days. This last month aunt Judy traveled along to team up with Mimi since a walking 8 month old is HARD TO HANDLE. Momma will be traveling the next three months with Jax to finish out this trial! She’s got this, right?

We will continue to keep updates as we progress through all things life throws at us. We are not 100% sure what will happen after this trial is complete; there are many Dr’s who would love to follow Jaxtyn and monitor his development as he gets older. What we do know is that there are many many advocates out there fighting for the NPC community, and lots of prayers from Jax’s supporters. Jax is a fighter and with God on his side, NOTHING is impossible.

In His Honor,

Momma and Jax

It’s been a hot minute since I’ve written an update, I’m sorry y’all! 

We are officially in the home stretch with only two more weeks left. Jax only has three more infusions left to do, one being tomorrow! Momma can’t wait to get that PICC line out so that we can dunk that sweet boy in a POOL, uh I mean bath tub! 

We had a bittersweet visit from Mimi over her spring break!! We were enjoying showing her around St Louis and catching up with old friends. But one night in the middle of Mimi’s visit Jax got really sick and was vomiting and having diarrhea really bad. The next morning was an infusion day and the Dr got to see first hand what Jaxtyn’s vomiting was like. She sent us to the ER to be admitted for observation in order to keep him from becoming dehydrated. So an overnight in the hospital again for Momma and Jax, but this time Mimi was with us! ❤

Jax seemed to recover from the worst part of the virus  norovirus after about 12 hours, but we had been warned that it was highly contagious!! 

THEY WEREN’T KIDDING! 

Immediately following his infusion the next day Momma started vomiting and three hours later, Mimi started! We thanked God for our friends who drove all the way form Ohio to visit us, while it wasn’t the trip we all intended, they graciously kept Jax overnight while Momma and Mimi fought the virus. Sadly enough, the day before our friends were supposed to leave, THEY GOT THE VIRUS. *insert palm to face emoji * 

Im glad to report that everyone recovered well and got back to 100%. 

The following weekend we had a visit from our family in the Missouri area who all got to meet Jax for the first time! It was a blast. Jax went to the Zoo for the first time and we got pictures of ALL 8 great grandchildren in the family. 

Other than all that, we have pretty monotonous weeks going to infusions two days, and spending our other days walking around the medical center/university area. We cannot wait to get home. Momma needs some rest and Jax needs someone else to make funny faces at him and carry him around. 

Thank you to all who have kept us in prayer, God hears them and has definitely kept us under His wing. The team doing the trial have reported an improvement with Jaxtyn’s blood levels for the liver and spleen! Although they haven’t noticed a significant decrease in the size, any improvement anywhere is hope. It looks like he will be approved for the second phase of the trial which involves an infusion of the drug once a month for the following six months. This will eventually be set up in San Antonio, but until that process can be completed, we will have to fly to STL for an overnight visit for the monthly infusions.

16 days left out of 50

In His Honor, 

Momma and Jax

Time seems to move at different paces around here. Some days go by fast and some are so drawn out and exhausting. We are moving on to week three tomorrow (thats almost half way there!!). 

Jaxtyn was discharged last Thursday from the NICU and we’ve had a good week together in the hotel room. We are very lucky to have a family friend checking on us and getting us out every few days. Days when its just us two, we walk around the hotel ‘people watching’, eating popcorn and fresh baked cookies, and when it’s not snowing outside we venture out to Starbucks and Whole Foods (our favorite spots). 

Mondays and Thursdays are the days that Jax has outpatient infusions. We arrive at the hospital at 9am and he finishes around 2pm. During that time he gets all of his labs drawn, the Dr does a physical, and once a week he gets his dressing changed for this PICC line. He’s been such a trooper during this whole adventure and adapts to whatever is going on! I couldn’t have prayed for a better baby! 🙂 

We are super excited to have Mimi come into town tomorrow for a long visit. 

In His Honor, 

Momma and Jax

Monday, day four, was very monotenous as we just filled the day with playing and trying to get in naps like a “normal” day back at home. Momma got to meet up with an old friend from here in STL and finally ventured outside of the hospital. A lunch break and grocery shopping is exactly what Momma needed to replenish her tank! 

February 26, today/ day five (these days slip away from you) 

Today Momma’s friend returned with some clean laundry and spent some time with Jaxtyn so Momma could get things together in the hotel room and get a nice good nap!! AHHHHH! 🙂

What would we do without our “village”?! 

This morning like normal, the Dr’s rounded on Jaxtyn and mentioned that we are aiming for discharge on THURSDAY! Yay! After his infusion of the drug on Wednesday, he only needs to be monitored for 24 hours, so depending on the time he gets the infusion on Wednesday we may be able to leave Thursday afternoon. 

Today Jax tried a new multivitamin that didn’t seem to settle too well with his tummy and he vomited his 8oz feed with the vitamins. Quite the mess! But he got a nice unscheduled bath, clean bed sheets and his third new outfit for the day!! 

Jax had occupational therapy that tired the little man out! We learned new exercises that will promote strength in his legs and arms, and ones that teach little man how to sit up with little support. How is he getting so big so fast?!

Current Weight: 15.67

In His Honor, 

Momma and Jax

Day Two

We are officially settled in and are starting to feel more comfortable. We thankfully have an amazing team that is working with us and check in on us constantly to see how we are doing. Jaxtyn got lucky to have the same day nurse as yesterday and she is awesome! Nurse T is one of the best and we have had many heart to heart conversations, I’m so thankful for how loving she’s been towards us. 

Today was a super easy day as Jaxtyn had no major events and was able to catch up on sleep and do some playing. The NICU and hospital staff have graciously found so many different toys and supportive aids to ensure Jax is entertained and progresses with his development milestones. 

Day Three

It’s still early in the day, but all seems like it will be very similar to day two! Just monitoring Jax and playing around in his NICU room. He will get a little bed bath and possibly some real food besides just milk. (Yay for bananas and apples) He has increased how much he drinks from 6oz to 8oz in the two days we’ve been here. Growing boy needs more! So far he loves sitting up in his highchair and playing in his little mobile/bounce seat. Momma got some sleep last night, a whopping four hours, but it felt like an eternity and was refreshing! 

Happy Sunday everyone! God bless!

In His Honor, 

Momma and Jax

Here we are sitting in our NICU room after a long day of traveling and admission to the Children’s Hospital in STL. 

I guess as many have already heard or read, we decided to partake in this unique opportunity and enroll Jax into the clinical trial 900+ miles away from home. One of the hardest decisions to make yet, but one that has also brought so much peace and answered prayers. 

First of all, THANK YOU so much to all who gave to Jaxtyn’s Go Fund Me Account in order to cover so many costs that we run into as we travel and are away from home for 2 months. Being unable to work is a stressor in itself, but add everything else going on and it can seem so very overwhelming. My family and friends have sure stepped up tremendously to make sure money wasn’t a burden during this time. So to every single donor I can’t thank you enough, and I hope you all follow along the journey with us. 

Travels:

This morning Jaxtyn and Momma loaded up the car around 3:20am as Mimi drove us to the airport. Eager and exhausted, and slightly sick with the common cold symptoms, we got checked in with our two bags weighing 75# and 50# along with a carseat and stroller in toll. Mimi was lucky enough to join us all the way to the gate and wave us off as we boarded the plane. Thank goodness for a super early flight, the plane only had 90 souls aboard and there was PLENTY of room for us in our own row of seats. Jaxtyn fell right asleep in Momma’s arms as soon as all of the friends we made within eyesight of Jax finished “oo-ing and aw-ing” over how adorable he is. He is cute though! Asleep Jax stayed until we landed in St. Louis at 7:15am. 

We were picked up by a nice lady who has helped so much in preparation for this trial. The NICU room was ready for us as this was our first destination! You can’t even imagine the faces of the nurses as they saw 15 lb/ 26 in/ 4 month old Jaxtyn Carter come through their doors. They were immediately smitten and so in love with his smiling giggling self. They weren’t quite prepared for such a character, they ordered a crib STAT considering they only had an isolate in his room. (He barely fit head to toe touching the head and foot of the isolate) 

Then came the hard part. TEST AFTER TEST / Dr after Dr after Dr after Dr….., seriously though, I can’t tell you how many people I met within a few hours. Ha Ha [and all were fully gowned up wearing masks making it impossible to remember names and faces]

Jaxtyn underwent a hearing test (passed), abdominal ultrasound (no new finding beyond liver enlargement/ NO ascites), liver elastography (tests the firmness/scarring of the liver), nasal swabs, anal swabs, urine catch, continuous vital monitoring, nasal sedative, peripheral IV insertion, deeper sedation, PICC line placement (right calf), occupational and physical therapy eval, head to toe assessments by at least 4 doctors, AND FINALLY the very first infusion of the test drug. He was SUCH A TROOPER!!!! 

Momma met with a genetic physician and genetic counselor to go over Jax’s story and how we got to where we are today….(I should just pass out business cards leading them here to this blog) Hehe!

Finally Jax got some food in that empty belly and fell fast asleep! Momma went and got checked into her hotel room and unpacked quite a bit, cleaned an outfit that we had a poop blowout in, and quickly grabbed stuff to stay night 1 in the NICU! 

Here we are now! We are both doing great and are in good spirits. 

Short updates will hopefully come daily as we progress through each day! I want to keep everyone as updated as possible! We are all on this journey together, no matter how far, no matter how we know each other! We love every single one of y’all, and are so grateful for the prayers that have been lifted for us. 

In His Honor, 

Momma and Jax

HELLLLOOOOO dear friends,

Jax and Momma hope that this new year is providing you with a fresh new start and bringing as much joy as it has for us! 

A little update for all keeping up with us:

Jaxtyn is a growing boy! This little chunk weighs 13.1 lbs and is 25 (ish) inches. [Every Dr’s office seems to get something around that length] We are strictly formula now (HALLELUJAH for Momma), he’s drinking 6 oz every 3-4 hrs! This boy loves his milk! We are fully transitioned to a crib and he is working on getting consistent naps every 2-3 hrs! YAY!!! 

At the end of January we had a routine follow up with Jaxtyn’s gastroenterologist/hepatologist. We reviewed some blood labs that were drawn the previous month and spoke about different specialist’s that are intrigued by our little man. This Dr is the one who most closely follows Jaxtyn along with his diagnosis of NPC and is in communication with many other physicians world-wide to see what resources are available. 

Our other visit in January was with a genetic specialist. Let’s just say they had heard ALL ABOUT US. We had been on their radar since back in September (before Jaxtyn was born) as every Dr has been trying to get us an appointment with this office. Well, we finally got in! By the time we left it was just us and the Geneticist in the office, he spent ample time with us going over possibilities, talking about ‘what ifs’ in the future, and looking over Jaxtyn.

The first person we met with was a genetic counselor who gave us a big folder with lots of information. Pretty sure I’ve got a collection of these now. One of the most important clippings in the folder was a clinical trial that the genetic counselor found that opened up in January 2019 specifically for infants between the age of 0-6 months. This is the only trial of its kind that involves babies as little as Jaxtyn’s age. Most trials for NPC involve patients age 4 and up that have neurological problems already present. The trial involves testing of the drug that is being evaluated for symptomatic treatment in patients with NPC. All other trials test the effects on current symptoms within patients who show neurologic or muscular degeneration, but this trial tests how the drug effects the liver in patients who present with only liver enlargement. (Jaxtyn’s only symptom thus far) FDA has not approved this medication yet, which is why many trials exist, to test the effectiveness. With how rare this disease is, it is hard for these clinical trials to get an accurate depiction of how the drug effects this population. 

With all of that being said…… We come to the point where decisions need to be made about whether to enroll Jaxtyn in the trial. We are down to a short time frame to make the decision since he caps out of the trial at 6 months and would not be able to participate thereafter. He has met all inclusion criteria so far, and will have more blood draws tomorrow to send off for the trial. I don’t want to get into all of the specifics with the trial just yet, but it entails Jaxtyn and Momma traveling to St. Louis, MO and spending 7 weeks up there!! The first week we would spend in the NICU and have a PICC line placed, and the following six weeks we would be in a hotel attached to the hospital. He would go twice a week to get the medication administered through the PICC line. 

There are SO many factors that effect this decision that make this terrifying, exhausting, exciting, etc. 1. Momma can’t have a job and be gone for 7 weeks 2. How do you actually decide to put your 4 mo old into a clinical trial 3. How will we get through this just the two of us (We heavily rely on our village!) 4. 5. 6. The list goes on. The trial is open to 12 participants, and Jaxtyn is the ONLY infant that they know of diagnosed with NPC at this time. Sooo, unfortunately there won’t be any other participants to have as a support while we are up in St Louis. (The trial is open until 2022, so they are hoping to find 11 other participants….) (LOL)

Please pray with us as we have to make decisions quickly, and that Momma has clarity on what is BEST for Jax. 

More to come..

In His Honor, 

Momma and Jax

I have started many blogs since my last post almost a month ago with the intention to get short updates to all of our followers, but being a Mom means some things get put on the back-burner, am-i-right or am-i-right!? 

Jaxtyn had a GREAT first Christmas! He was introduced to the many traditions that I grew up with like decorating the Christmas tree (he was a great observer as he loved the lights), cutting and decorating Christmas cookies (our favorite!!), visiting with Santa, and attending the Christmas Eve candlelight service at our church. Christmas Eve we spent precious time with extended family celebrating the birth of our Lord and Savior, our Healer and Redeemer. 

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Christmas morning we woke up and had a great breakfast – this chunk enjoy his milk. Jax was showered with gifts from his Mimi and BAE, it was a memorable morning.

The afternoon was spent delivering gifts to the NICU’s in San Antonio. We have had the privilege to partner with Bryce’s NICU Project, a non-profit organization here in San Antonio that delivers gift bags to the parents who sit up in the NICU’s with their sweet babies over the holidays. Even though Jaxtyn was only in the NICU for a week, I can attest to how horrible it is to see your little one go through test after test and just praying they pass it so you can be one day closer to taking your precious gift home. What I can’t imagine is how much harder it must be to sit there on a holiday. It is the tiniest sacrifice of time in order to possibly brighten someone else’s day, and remind parents that others have been in their position, a slight glimpse of hope for them. 

The evening Jax spent time with his Daddy, he sure loves talking to his Daddy and laughing with him. 

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After Christmas was over Jaxtyn had his first follow up with his cardiologist to checkup on his echocardiogram that came back abnormal at birth. Little man got a 12-lead ekg and an echocardiogram done, he was a CHAMP. Oh and by-the-way, this chunk has reached 11.7 lbs and is 24in!! The cardiologist came in and said everything looked GREAT, there were absolutely no concerns. You know what makes a great doctor? Transparency. His cardiologist said he spent some time prior to entering the room looking up information about NPC to see if Jax would need further cardiac follow ups due to the progression of the disease. I am thankful for honesty when Dr’s admit they remember nothing about this disease and actually research a little before coming face to face with a Momma nurse who has done her fair share of research! Looks like we get to cross off one of the specialist Jax visits on a regular basis! Praise the Lord!

New Years was a hard one for Momma. These first holidays can tear you up after separation from what was so special for many years prior. Beginning a divorce during the holidays is hard, but WE CAN DO HARD THINGS! (Thanks Auntie M for that reminder)

We wish you all a very Merry Christmas and a Happy New Year, 2019 will hopefully be filled with much more ups than downs. I pray for a great year for you all. 

In His Honor, 

Momma and Jax

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P.S. Follow Jaxtyn’s Instagram account to see all of the amazing photos we got from his newborn/lifestyle photoshoot. Instagram gets daily photo/video updates!

When everything seems to go wrong, will anything go right?!

There are some crazy birth stories out there, and I have sympathy for those mommas, so i can truly say I was blessed during my labor & delivery. 

So much stress and anxiety built up for me prior to this big day. With the fractured relationships between my family, myself and Jaxtyn’s dad I was picturing how this labor process would pan out. I cried and got angry when I thought about how the day SHOULD’VE GONE as we welcomed our new baby boy to this world, making us a family of three. Separating fantasy from reality I processed how this day would really go. 

Would I end up going into labor spontaneously? Who would be there? Would Dad even make it to the hospital? Who do I let be in the room with me? What kind of emotions will surface throughout labor? What if something happens?

With so many unknowns and stress building, I just had to let go and let God. God guided me through this entire process and He has shown me how to look beyond ‘myself’ and see “What Jesus would do” (WWJD, remember that?) 

Slowly things seemed to come together.

My OB made the decision along with my Maternal Fetal Specialist that the best scenario would be to induce me around 39 weeks (full term) and have a NICU team prepared in the room at delivery to evaluate baby boy. I was progressing well through the last few weeks leading up the delivery as my body was surely preparing for labor. I met with an entire team prior to delivery day at my hospital so we could all be on the same page. They asked me questions about what my thoughts were involving the hard decisions that would possibly need to be made, intubating baby if he wasn’t breathing and lung weren’t working, would I want him to be taken to the NICU and be separated from him or for him to be kept in the delivery room if there were only hours of life for him. All of these being “what-if” situations and having to talk this through without the support of my spouse was scary. We ended the meeting with a birth plan, the team was so supportive and stated that they understood circumstances change when you’re actually in the moment, but that they had a general idea of my wishes. 

39 weeks rolled around and it was the night before induction day. I was scheduled to be induced at 4am on October 5, 2018. BAE (Best Auntie Ever), aka my sister, flew in to be there for delivery. With much discussion and the Holy Spirit leading my heart we came up with a morning plan. What else breaks up tension and an uncomfortable situation other than FOOD? Mimi, BAE, Momma and Dad all met for breakfast at JIMS at 2am to fuel up for our long day ahead. This is Momma’s last chance to eat food before powering through labor. 

Dad and I checked in and got taken to the delivery room where I was admitted and had my IV placed. Mimi and BAE joined shortly after. The rest of the day continued..
6am. pitocin was started
8:30am. OB arrived and broke my water
8:50am. NEEDED EPIDURAL
9:30am. got epidural 🙂
1:15pm.  dilated to 10cm and ready to push
1:20pm. was told the NICU team was in an emergent delivery and asked if I could hold baby boy in until they were available
2:30pm. EVERYONE ready to go. started pushing… 3 cycles of 10 pushes later and
2:57pm. JAXTYN CARTER ESCOBEDA was born

The NICU team and OB decided prior to delivery that delayed cord cutting would benefit baby boy, so he was immediately placed on my chest while the team counted down one minute before Dad was able to cut the cord. Jax was taken by the NICU team to the crib beside me and they started their evaluation. The NICU Dr noticed that Jax wasn’t breathing as deep as he should be and his oxygen saturation was not where it would be. They placed oxygen on him and decided it was best to go ahead and admit him into the NICU for further work-up. They let me hold him one more time before taking off with him, but little did we know that this would be the last time I would hold him for the next 72 hours. Dad was instructed to follow baby boy and not leave his side, and he did just that. Dad texted Mimi all updates as they ran tests on baby. Jaxtyn’s blood sugar was low and a couple labs were off, he needed an IV at just two hours old in order to be placed on TPN. 

I was told that as soon as the epidural started to wear off and I could stand to get into a wheelchair I would be able to go down to visit my baby. You bet I was wobbling up on my dead legs that felt heavier than ever as soon as possible.

Within the first 24 hours, Jaxtyn had 2 chest x-rays, abdominal ultrasound, echocardiogram, brain ultrasound, central line placed through his umbilical cord, and multiple heel pricks. He was eventually placed under the bili lights in hopes to prevent jaundice. 

All in all, while this wasn’t the smoothest post delivery it’s the BEST outcome when things could have gone much worse. God created a perfect little man who is 98% Dad and we’re still searching for the 2% Momma 😉 (JK). But he passed test after test proving how strong he was and that this disease won’t hold him back! 

Thank you Jesus for your presence throughout Jaxtyn’s delivery, for His peace within the room, and His healing power over Jaxtyn and Momma as we both recovered to 100%. 

In His Honor,

Momma and Jax