Update - 7/29/13

I know some people follow the progress on facebook, but sometimes I get questions on what is currently going on. Much has happened.

They determined to take Max off the ECMO on July 22nd. He was doing well when around 12:30 or 1:00 am that night he went into cardiac arrest. It was a very scary time while they did 15 minutes of chest compressions, were able to get him back on ECMO and in stable condition. During the procedure of putting him back on ECMO they tore a vein. When they would come to a point to take him off ECMO again, they physically would not be able to put him back on because of this, so if he were to have another scare like that night, he would return to his Father in Heaven.

Some doctors suggested it was time to pull the plug, and though Jessi and Josh were accepting if that is what their Father in Heaven's plan was, they did not feel it was time.

He stayed on ECMO for a few days. On July 26th they decided to do another trial off ECMO. It went well and there was a second trial off before officially taking him off. They were hoping when taking him off the broken vein would stay attached so they could stitch it up when they took it out, but that was not the case. The only way to repair the vein was to cut open his chest and do open heart surgery. Though this was not the ideal situation, it ended up working out for the best as once they were inside they found several blood clots they did not know about and there was no way they could have gotten those taken care of otherwise.

We have seen one miracle after another with this precious baby. He has now been officially off ECMO since Saturday and is doing great. They are working on getting him off the ventilator and another surgery will happen soon to get his intestines back in his body.

Yesterday was a special day when Max was awake and opened his eyes.

Post Surgery

I think one of the hardest things about what my sister is going through is the constant ups and downs. Things change so quickly and you never know what the next thing will be or when it will happen.

So, they were able to do the surgery and things went smoothly. However, the hole was larger than they thought so in addition to his stomach and intestines going up into the diaphragm and chest cavity, his spleen and liver had also made their way up there. They stitched the hole up and put his organs down into his abdomen, but it did not all fit. His abdomen had not grown and it was swollen from the surgery, so they had to leave his intestines out. In a week, they are hoping there will be more room for the intestines after it stretches and inflamation goes down and there will be a second surgery.

There were no bleeding issues during and immediately after the surgery, but we have to remember they were never able to take Max off ECMO so he has continued on it, having the need to stay on blood thinners. Two days after the surgery his lungs stopped expanding and they were able to determine that his chest was bleeding more than they thought. Things did not look good. Last night the surgeons were able to get a new chest tube into Maxwell and suck some of the blood out. This improved his lung situation and he is heavily sedated. Our goal is to get Max off the ECMO.

Jessi and Josh are an inspiration to us all. Part of their status update when things left in the unknown -

"The doctors are doing all that can to find a solution. I feel peace right now through my Savior Jesus Christ. I'm not sure how this will turnout but I know it is up the Lord. I know he has a knowledge far beyond my own and trusting his judgement is the best thing Jessi and I can ever do."

They have shared time and time again their testimony of our Savior Jesus Christ and if you want to know more about their faith you can go to www.mormon.org

Surgery

Baby Max was scheduled for surgery yesterday at 4:00. It was pushed back due to other emergencies and eventually scheduled for today at 8am. Some people have asked what the surgery is for and what exactly the problem was. A diaphragmatic hernia is a hole in your diaphragm. Because of the hole (this is my understanding from what I was told several months ago when they found out), his stomach and intestines have gone up into his diaphragm, his heart was pushed down, and his lungs were unable to develop like they should.

Basically the surgery closes the hole in his diaphragm and moves all his organs to where they should be. My sister was telling me about a procedure Primary Childrens does which is not done everywhere, but they have had great success with it. To close the hole they use part of his own muscle, that way his body is more readily able to accept it-makes sense and she didn't understand why other hospitals have not done this.

So now we pray and wait. Thank you again for your love and support!

Their Story

Sweet little baby Maxwell Theron Swainston entered the world on Wednesday morning, July 10th at 2:14 am weighing 6 lb 14 oz. It was known he suffered from a congenital diaphragmatic hernia and the team was ready to life flight him to Primary Childrens Hospital, though they purposely delivered at University of Utah Hospital to make for as short a trip as possible. He would not have survived otherwise and had to be resuscitated while being transported. They thought things were well when 2 hours after he was born things took a turn for the worse and his parents were rushed to Primary Childrens to get some precious last moments with their newborn. After this heart-wrenching experience they waited for the end. To the astonishment of his Medical Team Max fought and beat out incredible odds to survive taking on his nickname, Miracle Max.

He was given less than a 50% chance of surviving. In addition to the hernia, one lung was the size of a nickel and the good lung had a leak in it. He had an infection somewhere in his body and his heart was weak. He only scored 1 out of 10 on his APGAR leading so suspicions of brain damage and testing has begun to see how severe it is along with numerous other tests to see what Maxwell faces in the future.

He was immediately put on ECMO which has been keeping him alive. However, they need to proceed with surgery whether he is still on it or not so they will begin the process of trying to wean him off of it, as risks are very high if he continues on. Infants in this condition typically stay hospitalized 6 months to a year so Maxwell still has a long road ahead of him. But we pray he will continue fighting and for the time to quickly come that his parents can finally hold him in their arms.

His father, Joshua, goes to school full-time and his mother, Jessica is the sole provider. She normally works from home taking care of her other two little boys, Beckham-4 and Lincoln-2, but will need to cut back hours due to her being there for her precious newborn. All support is greatly appreciated!

Swainston Family - Fall 2012

Big Brother Beckham- he loves visiting Max and will read him stories

Big Brother Lincoln - he is too little to be allowed in the NICU and still has not been able to meet his little brother

Ready to go to the hospital!

Max makes his arrival and is handled by great people

Set up on ECMO

Though he was heavily sedated, he held tight to his mommy's hand

We love you Maxwell!