5 Years Old

Hello Everyone! It has been 5 years. This blog was unmaintained for years; however, Becca and I wanted to bring it back up and provide an update on Jackson five years down the road. Jackson is preparing for kindergarten! He is a fun boy with no side effects to the ECMO treatment he received when he was a baby. He loves puzzles, coloring, legos, and all things superheroes. As a review, due to his treatment, Jackson's right jugular vain and carotid artery were cut to allow the ECMO machine to pump and oxygenate his blood. When he was released from the hospital we were told that he is more likely for progressive hearing loss and to develop slower in reading and math. He has always been strong and has exceeded his developmental milestones.  He is reading Bob Books and can hear just fine, though he doesn't always listen. He is our little miracle boy. Since our adventure with Jackson we have added two other kids to our family: Abigail Jane and Bailey Mae. We love our children! We have been through a masters program and The Ohio State University and now live in the Washington DC area where I work and we own a townhouse. We feel so blessed. I would like to thank all of you who gave so much, whether it be money, emotional support, prayers, or thoughts, we felt them all! It was a hard time filled with emotion and worry, but your support was invaluable.

What is left from Jackson's Scar

Portrait of Jackson

To anyone who is going through something similar with their child, you are not alone! There are many outcomes to the life and death situations in a NICU. We are grateful that we were able to keep our precious Jackson; however, I promise for those children who do not live, Heavenly Father will take care of your precious ones until you see them again.

"All things are done in wisdom and order" Mosiah 4:27, Book of Mormon

Thank you again to all of you!

Family Picture People left to right Jackson, Becca, Bailey, Aaron, Abigail

Our Superman

Well, it's been 10 1/2 weeks since our little boy was born. We are loving every minute of our time with him. I remember sitting in the hospital at Jackson's side while he had his breathing tube in; I would've given anything to hear a sound, a cry, or something from him. Now, he's babbling and cooing...and crying at times. I have to remember to be grateful for the cries...it means he's still with us after all he went through :-)

This last week we took him to a hearing center for a follow-up appointment to check his hearing. Because of being on ECMO, the heart and lung bypass, the Doctors told us Jackson was at increased risk for hearing loss. He failed his newborn hearing screening while he was at Primary Children's Medical Center; his left ear wasn't registering low pitches and the auditory nerve in his right ear wasn't giving good signs of hearing. He passed his hearing test and all the issues from the initial screening were cleared! What a blessing!

Jackson is his daddy's boy. At his 2 month check-up last week, the nurse had to measure him twice to make sure he was really as tall as he was! He is in the 98th percentile for his height at 25 1/4 inches and 68th percentile for his weight at 12 1/2 pounds. 

We've been able to do some fun things with our little guy. The week after he was released from the hospital, we went to Sun River, Oregon.  It was a very long car ride, but Jackson did pretty good. It was an awesome Butterfield Family reunion! Jackson went swimming for the first time with his Dad. We've been on several stroller rides, trips to the mail box, visits to the neighbors...you know, pretty awesome adventures!

Aaron started back at BYU-Idaho this last week. He will graduate in April in Physics, but has changed his career focus pretty dramatically. The Lord allows us to experience challenging times to help mold and strengthen us and direct us in the course he would have us pursue. This challenge with Jackson has opened Aaron's eyes to a career in healthcare. At Primary's we met the doctor who invented two machines (oscillator ventilator and the ECMO) that saved Jackson's life. It got Aaron thinking a lot...he LOVES research and he wants to go into a field where he can make a difference.We are still praying about it and moving forward with faith; so far, we feel good about him pursuing an MD-PhD. What is that, you ask? It's a degree in medicine and research. It will be eight more years of school...I'm still coming to grips with that, but the Physics route would've been five more years, so it's really only three more than we had originally planned :-)

He is working part-time for Idaho National Laboratories (INL) through the remainder of his schooling and he'll be able to work a lot from home. He did his internship there this summer and they kept him on because he was "impressive." :-) The Lord is definitely mindful of us. Aaron loves what he is learning there and he's going to get his name published in a paper or two!

I finally feel like I'm coming out of the post-pregnancy/c-section funk. I've gone to the gym a couple times this week and I actually went jogging with Jackson in the stroller! I am very humbled...I have to start from the ground up when it comes to exercise, but it's all worth it. I have a new-found respect for any mother who gets out of the house to exercise! I will start up at work again on Thursday (I work on a post-surgical floor as a nurse). Nervous? Yes. I will be working full-time for four weeks, then go part-time! What a blessing...there was a part-time position available that will only require me to do six 12-hour shifts per month! Aaron has class on MWF and I'll work TThS so that one of us can be with Jackson all the time. Once I go part-time, it'll allow me to be the mommy more often and Aaron will pick up more hours at INL on Tuesday and Thursday.

We have certainly seen the Lord's hand in our lives this summer. We have felt the tangible strength that comes from prayers and we know the Lord is mindful of us and the blessings we need. It's amazing how much peace we have felt, even during crisis. We're grateful for our miracle boy! He's a happy, healthy and very sweet little boy and we can't wait for the adventures that lie ahead!

Here's his SUPERMAN pose!

Smile!

Jackson has EATEN his way OUT OF THE HOSPITAL!!

So we are very excited to announce that about 11:00 AM on Tuesday, August 7, 2012, little Jackson was released from the hospital. We now have the opportunity to have our little boy with us wherever we go.

It started on Saturday night. He just woke up and decided he was going to eat all of his feeds. We came in and the nurse practitioner mentioned said he had eaten 94% of his feeds so they were going to try to feed him ad lib by mouth. He did wonderful and gained weight for two days and is now home!

We stayed at grandma's house for two days and then went home, to Rexburg on Thursday evening. It has taken us a little while to update the blog. We apologize. It is amazing how having him home takes up a lot of our day; however we are so grateful to have him home. As far as the future is concerned, we were told to treat Jackson like a regular boy. There is still follow up that is needed to check his hearing. He failed his newborn hearing screening, but we will follow up in six weeks for another hearing screening. The only thing that we have to give to Jackson is a multi-vitamin.

We are so grateful for you love, support, and prayers. This experience, though hard, has taught us about the power of prayer. Many times Becca and I have mentioned the power we feel from the prayers of you all. We thank you for your continued interest. Though we don't understand fully all the life lessons learned, we are confident that Heavenly Father has a purpose for these experiences. I know that he lives and loves us. I know that he loves all little children and is always mindful of what we go through and what they go through. God has a special interest in little children. He loves our son Jackson.

Our little boy continues to make progress

The last few days have been a little bit slower and steady progress. We're so grateful that the things we're focusing on now are not as critical as the initial issues. Jackson's lungs are doing great and he spends the majority of his days off oxygen. We are hoping not to take him home with oxygen. He is getting the sucking reflex down really well and he's been able to breast and bottle feed for the majority of his feedings the last couple days. It is so precious to have the opportunity to feed him and make that connection.

The biggest goal right now is to wean him off Morphine. Morphine was used as a sedative when he was in critical condition and the poor boy is now accustomed to having it and it would be a shock to his system to stop it completely. After he was taken off the continuous Morphine drip, he started out at 0.9 mg of Morphine every 4 hrs. He is now weaned to 0.3 mg every 8 hrs, so he's made a ton of progress. As he continues to do well, they'll decrease his dose.

I love being able to console him when he is fussy and talk with him when his eyes are big and awake. He loves looking around at the mobile on his crib and looks at you when you talk to him. He is such a sweet boy with a calm temperament. Just as any new parent experiences, bonding with a new baby is one of the most amazing things.

I just look at our little son who just came from Heaven and I have to thank Heavenly Father that we still have him with us and that he has recovered so well. All the nurses and doctors who have taken care of Jackson remind us often that it really is a miracle that he's doing so well. We have such grateful hearts for all the prayers people have rendered in Jackson's behalf. We have been told of so many who have put Jackson's name on prayer roles throughout the country. We have been strengthened, sustained and supported by loving friends and family. I know that Heavenly Father is so aware of all his children and he has a plan for all of us. He knows what things will challenge and strengthen us.

We're hoping to take Jackson home within the next week or so and start some more adventures together!

Progress

So, I first have to apologize that I haven't updated the blog for a while. Jackson is still making grand improvements. Jackson has moved from a high flow nasal cannula to a regular nasal cannula. He is still on 28% oxygen. He has been feed through a NG tube for some time and is about 2 ounces every three hours. Yesterday, Becca was able to try to breast feed. Today he eat about 1/2 and ounce to and ounce of breast milk from Becca and was feed the rest. He is getting the hang of it. We are proud of our little guy. There are three things that need to happen for little Jackson to leave the hospital.

1. He has to gain weight by eating orally, from bottle or breast. 
2. Be off morphine
3. Breathe on room air

We have received some pictures of both Jackson and I. Take a look and see who you think he looks like. I don't have a scanned picture of Becca but I will get that up soon.

Jackson

Aaron

Jackson's Face Revealed

So up until this point our little guy has had a couple of tubes in his mouth and a mustache of tape on his upper lip. Today our little boy had the respirator removed, and he has had a high flow nasal cannula put in it's place. All of the responsibility of breathing is on Jackson now. He has been doing great. Jackson has made it quite clear he was done with his tubes. At one point the nurse had to put socks around Jackson's hands, so that he would not pull out the tube from his mouth prematurely. We are so proud of our little fighter.

Jackson now can cry a little. His voice is very horse. When he cries, it sounds very soft and raspy. It is very clear it is a cry, but it sounds very soft. He is so cute. Below is a couple of pictures to show more of little Jacksons face.

We Held Baby Jackson!!!

When Jackson was born into the world, things were so complicated. Jackson was sick and was rushed off to the NICU where everyone touched our son but us. This was a great day where Jackson and Becca were reunited. When Jackson was placed in Becca's arms, as you can see in the video, he was so fascinated and calm. Despite all of that, he was also quite alert. We are grateful for our experience.

Some people have wondered about Jackson's antibiotics. So for a day Jackson was taken off of his antibiotics; however, with recent yellow secretions from his lungs they feel that they should put him back on for the moment. As far as his ventilator, Jackson has weaned to about 28% oxygen and is taking spontaneous breaths from his ventilator. Today Jackson didn't process food like we would like, but last night Jackson was a pooping fantastic. Also, Jackson had his umbilical arterial catheter taken out today.

We are mindful that Jackson has made great process and have high hopes that he is going to continue to make great progress. We are trying not to put deadlines on when we think things will happen because we have little control over those details. Patience is a virtue :-)