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 :-)

Some thoughts from the new mother

I thought it's about time to write some of my experience on the blog. Aaron has been so good to send updates on our little guy. Where do I start?

My heart is full of gratitude and we are overwhelmed with all the support from family and friends and even people we don't even know. On July 8th, Jackson's birthday, I anticipated all the things a new mother gets to do for her little baby--giving him his first bath, feeding him, watching him coo and look around at the new world he has entered. As I came out of anesthesia, I slowly learned that little Jackson's entry into the world would have a different start. I started learning to be grateful for a baby that was alive.

Immediately after Aaron gave me the news that Jackson wasn't doing well and all I wanted to do was to see him and snuggle. The nurses let me see him by wheeling my bed to the NICU where he was. He was hooked up to a lot of things, on a ventilator and sedated. I looked past all of that to see our precious little son and the little miracle of life that we were witnessing. He was life-flighted to Primary Children's around 4:30 PM and I got to see him one more time as he was taken out to the helicopter pad.

I couldn't wait to come down to see him after recovering from my c-section. This last week has been full of quite a few emotions. It's amazing how my love for my husband has grown; over the span of a few days, I have watched him change into a father and a more devoted husband. I see him in a different light now. Being a new mother is amazing! I look at the child that Aaron and I have and it's a miracle that Heavenly Father blessed us with such a celestial little boy--and a really cute one too! I really feel that Jackson was kept inside of me for a week and a half longer because he needed some more instruction from Heaven to help him get through his unique entrance into the world :-)

It's humbling to receive so much support and prayers. I often think about what Heavenly Father wants me and Aaron to learn from this experience. I'm learning that the prayers of others really do have a direct impact; I have been sustained and given strength beyond what I could've mustered myself. In the initial bleak and unpromising hours, I was reminded that the promise of an eternal family is one of the greatest gifts we've been given and that no matter what, Jackson is a part of our family forever.

Thanks for keeping Jackson and us in your prayers and keep them coming! You can help us pray that he can come off the ventilator smoothly and quickly and that his swelling will continue to go down. We're taking it one day at a time and Jackson has been a fighter! We know he's got thousands of prayers on his side.

Jackson 2.0

We now have a new and improved Jackson Butterfield. He has a new ventilator. He is no longer on the oscillatory ventilator and is now on a conventional ventilator. Jackson was placed on this ventilator today and is doing well. He is trying to get used to a new way of breathing. Thus far in Jacksons life, he has not been breathing like we do. Obviously, when Jackson was in the womb, he breathed through mom. When he first came out Jackson tried to breathe, but it didn't work very well. So he would inhale and hold it. Soon Jackson was put on the oscillatory ventilator which he has been on every since today. Now this ventilator assists Jackson to breath whenever he needs it. We are grateful this is wonderful progress.

As of today Jackson is one week old. We have read several books to Jackson. I would say that Jackson is among the most well read one week olds I have ever met. So far we have read Green eggs and Ham, The Best Kind of Kisses, Click Clack Moo, How Dinosaurs Say Good Night, and a couple others. We hope that Jackson likes to read books more that his parents did.

Anyway, we are very glad that he continues to make great progress. Thank you again for all of your prayers. We feel them. Though this is hard we know that it is Heavenly Fathers will that we go through this experience. We love all of you and so does Jackson.

Jackson Five

Well Jackson is five days old. Today we were able to first see our sons eyes. He would respond to sound look at where the sound was coming from and then fall back asleep. He is squirming around and he is now sucking on his respiratory tube. It is so cute. We love our little Jackson.

I mentioned that I would go in to more detail on Jackson's removal from ECMO. Every morning the doctor and staff meet to discuss Jackson's progress. We went for the meeting in the morning and they were hoping to ween Jackson of the ECMO by that evening. This was a shock to us because we thought it wouldn't be until Saturday. Jackson has just been surprising all of the doctors and nurses.

It turned out we got a call in the afternoon saying that Jackson was scheduled to be taken off ECMO at 3:00 pm. We jumped in the car and found that the surgeons couldn't do it until 4:00 pm. They started the procedure and in less than 30 min they were done and Jackson was stable. I have a video that we will post that shows Jackson in his new state. He no longer has tubes going into his right neck.

As for this morning he has continued to be stable. He had to be put on dopamine for a small amount of time last night to help with his blood pressure; however, he is off of it now.  They have pulled out his catheter so that he is just using diapers now. Becca and I worked to change our very first diaper on our little Jackson, it was fun. he no longer has his pericardial drain or an iv in his right hand.

So where to from here? Well Jackson is still hooked up to a respirator. He is also on morphine and is quite used to his drugs. Jackson also hasn't eaten. He has been given all of his food and nutrients through iv. So the next steps will be to work on getting Jackson off of the respirator. I think that this will be the slowest process of them all. They are going to start feeding Jackson breast milk through a tube today and they are slowly weening him off his morphine.

All of your prayers have been felt and they are really helping our little boy. Keep them coming. Every day is another day closer.

Off ECMO!

Jackson was taken off ECMO. I will give more details tomorrow. Love you all. Keep praying for him.

Overview

So many people have asked what was wrong with Jackson in the first place. I thought it would be helpful to post an overview of where we have been and what has happened to Jackson. I might repeat some things, but I will try to be clearer about what has happened.

The first thing to understand is what happened. I want to stress that Jackson was fully developed and perfectly healthy. Jackson had an accident in the labor process. Though it is not clear when, at some point during labor, Jackson had three things happen. First, Jackson was posterior. This means that Jackson was faced toward Becca’s front, like the image suggests. This caused Jacksons head to be forced up against Becca’s pubic bone. Second, during labor, the umbilical cord became wrapped around Jackson’s neck. Third, Jackson pooped during his stay inside Becca. This poop is what is called meconium, not marconium, like I thought it was spelled. Jackson aspirated, or inhaled, a large portion of meconium. 

During labor everything went smoothly until about 2:00 to 3:00 in the morning. Becca had dilated to 9 cm and worked for hours to dilate yet was not able to dilate fully. At about 6:30 on Sunday morning Jackson’s heart rate began to fall dramatically. The doctor tried to do a vacuum delivery but failed, because Jackson was stopped by Becca’s pubic bone, as mentioned earlier. At about 7:20 in the morning they took Becca for an emergency C-section. They were able to get Jackson out; however, he had trouble breathing and was transported to the NICU at EIRMC, Eastern Idaho Regional Medical Center. They tried to use several drugs to help Jackson to breath, but it didn’t work. It was decided that he would have to be transported to PCMC, Primary Children’s Medical Center.

So out of the three things that went wrong, only the meconium aspiration continued to be a problem after birth. The umbilical cord and Jackson being posterior don’t matter after you get the baby out of the mother. So, why the heart and lung bypass? Why couldn’t Jackson breath? To understand why meconium aspiration is such a problem, you first have to understand how the lungs and heart work.

Most people know that the lungs gather oxygen and expel carbon dioxide; however, in order to do this the lungs produce surfactant which acts as a lubricant for the lungs and decreases surface tension allowing gas to exchange from the air to the blood and the blood to the air, as shown in the picture. In order to for lungs to work properly they need blood and air to pass through them carbon dioxide needs to leave the blood and enter the air and oxygen needs to leave the air and enter the blood.

The heart works as a pump for the blood of the body; however, it is a very complex pump. There are four chambers to the heart. Blood from the body enters the heart depleted of oxygen because it has delivered the oxygen to the cells of the body. It enters the heart in the right atria and then is pumped into the right ventricle. From the right ventricle it is then pumped into the lungs to get oxygen and then into the left atria of the heart. From the left atria it is then  pumped into the left ventricle and pumped to the rest of the body. It then goes in another cycle.

Before babies are born, they have a hole from there right atria to their left atria. This causes most of the blood to bypass the lungs and just pump through there body. This works because the mother provides the oxygen to the baby so the baby doesn’t need to breathe while in the mother’s womb.

When Jackson aspirated meconium, it caused several things to happen. First, the meconium compromised the surfactant in his lungs. This stopped exchange of carbon dioxide and oxygen in his lungs. It also irritated his lungs to cause the blood vessels in his lungs to constrict and this lung tissue to become inflamed. The constricting of the blood vessels is called pulmonary hypertension and the inflammation they called chemical pneumonia. This didn’t allow blood to flow through the lungs because it was easier for the blood to shunt through the hole from the right to left atria instead of flow through the lungs. There was also a lot of junk in his lungs that stopped air getting into the lungs in the first place.

Because Jackson’s lungs didn’t work it caused the carbon dioxide to pool in his blood and caused his blood to get more acidic. Jackson also couldn’t get enough oxygen to his blood and his heart wouldn’t pump through his lungs because it was easier to go through the hole from atria to atria. His heart then tried to compensate by pumping his heart harder until his body became tired and his blood pressure started to drop. These were the symptoms that he was fighting at EIRMC. This is the point where we weren’t sure whether Jackson would make it.

During his stay at EIRMC, Jackson was placed on several medications. I can’t remember them; however, when he was at Primary’s he was placed on dopamine, and dobutamine to control his blood pressure. He was also placed on a medication to make his heart pump stronger. He was placed on heprin to cause his blood not to clot. He was placed on verced and morphine to sedate him so that he wouldn’t move. They also gave him a lot of fluids to help his blood pressure by giving him transfusions and fluids.

When he was at primary children’s, he started on those medications and was suplimented by the ECMO machine, which is a type of heart and lung bypass. As a result, Jackson has been given good blood with oxygen and no acidity while his lungs recovered from the trama they were placed under. He has done amazing. He has surprised the doctor and nurse in his recovery and is looking good for a full recovery.

If anyone has any questions just post them in comments and I will do my best to answer them.

Jackson's Got Style

We are so grateful to all those who have made donations to the Help Jackson fund. We are overwelmed by people's generosity. As Jackson heals, we are trying to focus on him and not the finances that inevitably will come. Thank you so much for your generosity. Those donations are making so we can not focus to heavily on the day to day finances. We want you to know that we consider those funds sacred. Thank you again!

Becca and I were able to spend some time with Jackson this afternoon. They have pulled Jackson completely off Dopamine, Yah! There plan was to keep him on a small dose but his blood pressure was getting too high. Takes after his Dad a little. Anyway, his heart rate is in the 90's which seems a little low but the doctor said that, "It was fine for him." Our Docs name is Dr. Bradley Yoder. He has truly been amazing he and the ECMO staff gather every morning at Jackson's bedside to discuss goals and status with little Jackson.

I talked with someone who was confused with the comment I made about swelling before. When I took the video in the last post Jackson was only at Primary Children's for one day. After the video his swelling did get worse; however, it has sense gotten better. You can see in these photos that his swelling has decreased. He may still have a misshapen head, but he doesn't look as swollen.

Today was a fun day. Becca sat at Jackson's bedside and hummed "I am a Child of God." A popular primary hymn in our church. It was so sweet to see my wives love for our little guy. Becca truly has a unique gift to look past the wires and tubes to Jackson's person. She is an inspiration. One of Jackson's nurses offered us a brush to style Jackson's hair. Becca styled Jackson's hair into a mohawk which was fun and we got pictures. One thing that is hard is not being able to bond with your baby. This is especially true for Becca. Today we were able to do a little to bond with our little boy.

Video of Jackson

Pictures are great but videos are better. This video is of a couple two days ago. Jackson has gained a lot of ground since then. He is a lot more swollen now than this video but he is just a little cutie.

Mom and Jackson Reunited

So Becca was released from the hospital today and was able to come down to see little baby Jackson. I am so grateful for her nursing knowledge. This has been such a help. Becca was able to get down here a little after 4:30 this evening. We then got things settled where we are staying and went to the hospital. Becca was very strong with the situation and asked a lot of questions of the nurses attending little Jackson. Becca was able to stroke her little boys feet and watch him move for the first time. Jackson has been able to move a little bit. Again they don't want him to move to much to upset the balance of the ECMO machine. I have loved the support of all those who have given our family so much support; however, it is nice to have my wife at my side to help in the decisions and care of our son.

Many of you have asked how you can help us in our situation. We have been able to get a room at the Ronald McDonald House. They charge a low cost of $15 dollars a night. Though I am not a fan of asking for money that would be the most help in our situation. We have received great support from family to help in food by taking us out to eat, but we just need some support to help with the expenses of living away from home and medical expenses while maintaining our life in Rexburg. Please don't feel obligated to donate to this fund, but if you find yourself in a position to donate some moony, it would be very appreciated. If you choose to do so there is a paypal link off to the side.

Jackson continues to make progress. In a meeting this morning with the Doctor, we were informed that Jackson's pulmonary hypertension is all but gone. He is slowly starting to get rid of the swelling that is so apparent in his photos. They even gave him a medication to help with getting rid of all of his retained water. At the rate that he is going they are hoping he will be off ECMO by Saturday. Just as a heads up to all of you after he gets off of ECMO, there is probably still a couple weeks of recovery. We are very pleased with the progress that he continues to make. Again we are thankful for your prayers in Jackson's behalf. We feel those prayers daily. Please continue to pray for Becca as she continues to recover and for both of us in our emotional strength.

Improving Each Hour

Jackson is a fighter! He has made so many improvements in the last day. I am so grateful to Heavenly Father that he has helped our little son survive. Before I give an update, I should give the situation and what the goals are with Jackson in the near future. Because of Jacksons pulmonary issues, the hospital has sustained his blood pressure by increasing his  blood volume in his system by giving him blood transfusions and giving him an iv drip. For this reason he is very swollen right now, as you can see in the pictures I have posted so far. Jackson has also has been plagued with metabolic acidosis as a result of him not being able to breathe off the CO2 in his system. Another issue that I mentioned in the last post was that his heart is not pushing blood through his lungs to get oxygenated. Instead the heart will push the blood through a hole between the left and right atria of the heart, because the pressure to push the blood through the lungs is to great. Also, Jackson has lots of junk in his lungs. Quite a bit of marconium is still in his lungs; however, they are getting a lot out.

As an update, there has been a lot of progress today. Jackson is completely been weened off of the iv drip to add to his blood volume. He also has been weened off of some of the blood pressure medication. What this means is that his body is able to manage his blood pressure and volume without as much help. As a result, this will help in decreasing his puffiness as the days go by. His ph is in the normal ranges. He is still on the ECMO machine and will be for several days; however, he is responding very well. I was also able to see the most recent x-ray of his lungs and they are definitely starting to clear up. We are so thankful for all of the support we have been given. Please continue your prayers for Jackson and Becca. We love you all!

Baby Jackson Arrives

Baby Jackson has come into the world! Jackson Chase Butterfield was born into the world at 7:43 am on Sunday July 8, 2012. We are so excited to be the parents of his strong spirit. Jackson's entry into the world was dramatic. Becca and I went into the hospital on Saturday evening to be induced. Jackson only needed a little push to come. Becca's water was broken and she went right into labor. Becca dilated quickly throughout the night until she hit 9.5 cm. At this point Jackson's heart rate began to decrease and stay low. At this point the doctor decided we needed to get the baby out. The doctor tried to do a vacuum delivery; however, the baby was posterior and couldn't get past Becca's pubic bone. Jackson's heart rate then settled down in the 70's to 80's, showing that he was in distress. The doctor then made the decision to to a c-section. In hind site, the decision to deliver Jackson through c-section saved Jackson's life. Once Jackson was born he was handed into the nursery. Unfortunately, we didn't hear Jackson cry. This was the first indication that something was wrong. The hospital staff acted very quickly to get a PA from the NICU to Jackson's bedside. It was determined that little Jackson had marconium aspiration. He was then placed in the NICU where carful physicians suctioned the lungs. It was determined that Jackson's marconium aspiration was very serious and had compromised the surfactant in his lungs. Also, as a result of the marconium it irritated his lungs causing pulmonary hypertension. At this point little Jackson had his heart and lungs revert to how they operated inside the womb by shunting the majority of the blood through the heart and bypassing the lungs. It was a constant fight to get Jackson's oxygen saturation and his blood ph to acceptable levels. Jackson was then flown to Primary Children's Hospital where they performed a machine, called ECMO, to bypass his lungs and heart to allow them a break while they heal. Jackson is responding well to the machine and the treatment given.