Thank you so much to those who have been reading and have told me you’re praying for little Jaxton. He’s still hanging in there and his parents have many things to praise God for. I’m going to do the same as last time and copy the latest updates on Jaxton from his mom, Lisa’s, blog. They have posted photos of Jaxton on their blog and I don’t feel comfortable taking that much and posting here, so please, if you’d like to follow Jaxton’s progress and see pictures, check out their blog here.
26 Feb
Saturday 4:30am {Pee, Poop & other fun stuff}
Posted by Lisa Husmann in Jaxton’s Story. Tagged: GOD, Heart, Jaxton Husmann, NICU, Omphalocoele, semi-lobar holoprosencephaly, Trisomy 13. 7 Comments
Hi!
So many things have been going on here!!!
Jaxton’s ph level is now 7.32 ideal is 7.4 which is an excellent change from his original 7.02 ph!
They adjusted his ventalator and he is handeling the change well according to the respatory therapist. He originally was on 100% oxygen and now he is at 85%. I think they are trying to get him to room axygen which is like 25% (don’t quote me on that… there are to many numbers around here to remember them all)
Earlier today the doctor was concerned about how little he was peeing and then he surprised us all and has peed off the charts good! He only needs 2 oz minimum an hour and he has consistantly done 23 oz in 3 hours!
Crystal his nurse JUST told me that he has been absorbing ALL 6 ml of the colostrom which he had trouble doing with the formula. I’m sooooo thrilled!!! I have been producing twice as much as he needs at this point which everyone is so surprised considering the lack of sleep, emotional stress and having gone through the pain of a surgery. He just makes me soooo happy I think my body wants to reward him any way I can.
I have been loving and flirting with him this whole time. Kissing every sweet little part of him and whispering prayers and I love you’s. He has been tugging at my heart strings and making me fall more and more in love with him! He decided to flirt back with me and opened his eyes about 6 times and has been holding my finger.
I am loving towel bathing him, giving massages and lotion rub downs. He loves his feet and legs rubbed. He is responding to our touch which makes us smile!
I have decided that there is nothing better than seeing my hubby kiss, love and hold our sons. I have fallen even more in love with Josh just being so in love with our boys.
Jake was able to visit today and I loved seeing him running around and being his fun self. He was being so funny it was almost too painful to be around because it was making my incision hurt every time I laughed. I think he is starting to hint at wanting to be potty trained. Apparently he has been taking off his diaper A LOT and even went pee in the potty once on his own! (Big thanks to the Niccum family for putting up with the diaper situation! sorry you had the luxury of dealing with that.)
My heart is so full right now for Josh, Jake and Jaxton but for you all, the nursing staff and especially my friends and family. I’d like to work on a post here soon about how much you all have touched my life! It may take me a while to write because I have soooo much to say.
Right now Daddy is holding Big Jax and I’m due for a nap!
I am so thankful to God, Jaxton’s creator, for his tenderness and mercy with our family. He has been blessing us abundantly in so many ways. I’m almost moved to tears at how he has been so gentle with our hearts and answering prayers and questions right away. We have been able to pray over Jaxton and read scripture to him reminding him of how great and wonderful the LORD is! Father God… I LOVE YOU SO MUCH!
We could use prayer for the decisions about his nutrition intake, breathing on his own, NO Trisomy in his DNA and extra prayers for his heart!
Friday 3:13 p.m. – Update from Josh
Posted by Lisa Husmann in Uncategorized. 43 Comments
Jaxton is doing well! Thank you for your continued prayers!! God really is working and hearing your prayers!!!
Jaxton’s levels continue to improve! He’s still hooked up to a ventilator, but he is taking some breaths on his own, which is a great sign! He is moving more and we’re getting to know his personality a bit more!
Lisa wants to thank the entire staff here at IU North in the NICU! They really have been incredible and gone above and beyond to help make sure Jaxton knows he’s loved. Shari, our current nurse, made Jaxton a bracelet with his name on it and a cross. She also made scrapbook and gave him a personalized teddy bear! Our very first nurse, Erica, gave Lisa a book with Bible references according to theme (she’s also planning on coming to the next Vision Experience for Mercy Road!). She had brought the book to work a week ago and hadn’t known why. She told us she knew it was for us and she personalized the front of the book.
The nurses, respitory therapists, doctors, and surgeons have just been amazing and we’re truly thankful for each of them!! Lisa has been praying for the nurses and doctors since we found out about Jaxton’s condition.
Jaxton is doing well please continue to pray for him. We made a list of what to pray for in the previous post. We’d also love if you would pray that Jaxton begins to breath completely on his own and continues to do so! Also, pray for NO SEIZURES. He hasn’t had any yet, but it’s a possibility with his brain issues.
Thank you all so much and we’ll try to update when we have more news!
– Josh (Lisa’s husband)
Post by Josh – Thursday 5:43 p.m.
Posted by Lisa Husmann in Uncategorized. 82 Comments
Hey everybody, this is Josh (Lisa’s husband). We want to thank Aimee for endless hours of no sleep to keep everybody updated on Jaxton’s status. I honestly don’t know what the last update said, so I’m just going to share where we’re at now.
Lisa and I are spending some time with Jaxton. Right now she has him on her lap and is talking to him. It’s beautiful. She just told me, “He moved his leg!” Movement is something we get excited about.
Jaxton is coming up on 24 hours of life! This is a huge praise!! We almost lost him last night. In fact the doctor has given Jaxton no chance of long term survival. Yet, he’s still alive. In fact, we just found out his blood PH is up to 7.227, which is much better than it was this morning! We get excited for each positive step he takes. The guy is a fighter!!
It’s been an emotional roller coaster so far of highs and lows. Jaxton was not breathing when he was born. He’s been switched between multiple ventilators, but now has one that is helping him keep stable.
For the left-brainers here’s the major medical issues Jaxton has: holoproscencephaly (brain), multiple heart defects, and the omphalocele (some of his intestines are in a sac outside his abdomen wall). We had a tough decision last night of what to do. We decided to ask the surgeon to put in a central line. This is a catheter in his chest that is getting needed medication to his heart.
If you’re reading this THANK YOU SO MUC H FOR YOUR PRAYERS!! WE CAN REALLY USE THEM NOW!!!! It will definitely take a miraculous healing from God for Jaxton to live. We definitely haven’t given up hope! We also have learned to embrace whatever path God has for Jaxton, as difficult as that is for us.
Here is what you can pray for:
1. His heart defects would miraculously heal.
2. His brain would heal and function at a high level.
3. His blood PH remains at a good level. 7.4 is best.
4. His omphalocele heals quickly and well.
5. That he would begin to move a lot. He rarely, if ever, moves beyond his tongue.
6. For our whole family during this time and for Jake as friends and family are watching him (thank you Niccum’s and sorry for Jake repeatedly taking off his clothes and diaper!!)
7. That Jaxton does not feel pain or experience much discomfort as he begins to try to move.
Thank you all so much!!!
4:54pm
Posted by Lisa Husmann in Uncategorized. 9 Comments
hello everyone. i am writing from my home in dayton, ohio. i left the hospital at 2:30 and mom, dad, and jaxton were doing ok. jaxton and lisa were spending quality one on one time while josh got a couple hours of sleep. praise the Lord that the hospital has fantastic accomdations for everyone, including friends and family that come to visit. they have taken great care of everyone! i made the difficult decision to come home beacuase i knew that lisa, josh, and jaxton were in great hands and there was nothing more i could do. there will be very few updates as it is a waiting game now. i also wanted to give josh and lisa lots of quality time as a gamily without too many extra people hanging around. it has been such a priviledge for me to update the thousands of people that are praying for this family! if/when i hear anything i will post from home. if /when there are big changes for jaxton i will most likely head back to indy to be with lisa if that is what she needs from me.
please pray that jaxton continues to be comfortable and that he and mommy and daddy get lots of time together! please pray as the doctors continue to diagnose and treat jaxton with all the challenges that his timy body is presenting. please pray that God will continue to show Himself through the lives of the husmann family and their faith through this difficult time in their lives.
thanks again! aimee
10:36am
Posted by Lisa Husmann in Uncategorized. 24 Comments
hello friends. i am sorry that the last post was so long ago! i am also sorry for all the typos and errors…i hope you can still follow along. at different points throughout the last day i have been a little preoccupied and spelling errors were not on my radar! things are still going here. at this moment josh is with jaxton and lisa is taking a much needed rest. this couple has had a very hard night, but they are both holding up with such grace and peace that i know only God can give. little has changed with jaxton. he has his times when things look very good and we get excited. there are also moments when we are reminded that his little body is fragile and we dont really know how this is going to go. jaxton is in no pain and is still sedated, much to josh and lisa’s dismay. lisa would love to see him squirming around and opening his eyes…please pray that happens while she is there to see it! jaxton loves to be held by his mommy and daddy. last night they took turns and tried to rest on their “off shift”. rest is hard to come by becuase they do not want to miss a single thing. at one point lisa and i were talking, she was facing me and when she turned back she said “oh, i just miss him so much when i am not looking at him!” she desperately wants to soak up every minute and study his every little feature. she is healing very well from the surgery…she has been walking, eating, and drinking like a champ. josh has been an amazing support both for lisa and for jaxton. he jumps to attention with every little noise and he is on top of knowing what is going with jaxton…there is alot of information flying around and they have both been great about digesting that information and making decisions. please continue to pray in that way. please pray that God would make it very clear as to what they should do regarding care, medications, treatments, etc. i have been so blessed to see lisa be real with me over the course of the last day. she is trusting God but still crying out for Him to heal jaxton. the realization that that may not happen is very sobering. i have to keep telling myself that God is so much bigger than this, that i need to be praising Him for the fact that He can do this!
thank you for your continued prayers for josh, lisa and jaxton!! thank you for your continued patience with me as i try to post for them…sorry they are not as visually appealing as lisa’s…i promise she will be back soon! love, aimee
“Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, ‘Be strong, do not fear; your God will come with a vengeance; with divine retribution He will come to save you’.” Isaiah 35:3-4