As the Days Go By...

Trust in the LORD with all your heart.

Proverbs 3:5

We almost lost our baby AaronMatthew. I cannot tell you how it happened. Neither can the doctors, but it just did. All of the sudden, all of his stats dropped. His blood pressure and oxygen level and then he was being intubated and transferred to Children's Hospital. Praise the Lord he came out of it. Life has felt strange having a baby 56 days ago and not ever having him home.

There was a meeting yesterday afternoon with the Cardiology team and the surgeons. He is gaining weight slowly and all of his stats are acceptable for his situation. They completely left it up to my husband and I if we would opt to take him home to see if he does alright and continues to gain weight or do the open heart surgery. They said they are okay with either decision we wanted to make. They could do the surgery safely at his weight and age but it would still be better to get him a little bit bigger and older if we could. They told us there was no right or wrong decision. 

We said we would take our baby home. 

I am in the process of learning around the clock care for AaronMatthew. I had to re learn how to insert the feeding tube through his nose and into his belly. My husband had to learn too. We also had to watch videos and practice measuring liquid medicine through a syringe. I went through CPR before AaronMatthew's last episode, so that is covered. There was a printout given with a schedule of his feeding and medicines as well as doses. They want us to be completely comfortable with caring for his special needs before and if we take him home. I opted to spend the night with him in a special room to care for him by myself and incase a situation would arise, I would still be in the hospital and call a nurse or doctor right away for help. I was told, this would not be easy.

Am I scared? Yes. Of course. I know God holds all things together, but I am scared. There will be no doctors and nurses who we have become so dependant on to care for our child. There will be no monitors beeping or any special equipment hooked up to him, except for the feeding tube.

The plan is to take him home. Meet with his Cardiologist a few days later and then meet with the surgeons the next Thursday to set up a date for surgery.

Ideally, if AaronMatthew could at least wait the next 2 to 3 weeks and gain "healthy" weight for the open heart surgery, that would be great.

AaronMatthew's Near Death Expierence

A couple of weeks ago, my husband took a trip back to St. Paul, Minnesota to get our son Tres who was staying with his oldest sister Cassie.

It was just AaronMathew and I.

I spent all day Saturday at the hospital. We were to be discharged to go home the following Monday. I learned infant CPR and I learned how to insert a feeding tube into my son's nose and down to his stomach.

That Saturday, later on in the day, I could see something had changed in my baby's eyes. He just didn't look like himself. He looked sick in his eyes. And he was very pale. I told the nurse and the charge nurse. There was some thought that he could have a virus or bacteria infection of some kind. The charge nurse said that he would probaly get an IV put in because he needed fluids. The thought was that he possibly lost too much fluid in his body due to the diuretics?

I got a phone call from the nurse later on in the late evening saying they started AaronMatthew on an IV and that his resperations were getting fast.

Early the next morning, a nurse called me and told me that the Pediatric Cardiologist that was on call was called in to assess AaronMatthew and his condition. The said that he might need to be put on a respirator to help him breathe.

His stats dropped. His resperations dropped. His blood pressure dropped and was dangerously low.

I immediately went to the hospital with my best friend Sheila and when we got there my precious baby was moved to a different area of the NICU and was surrounded by doctors and nurses and hooked up to machines and tubes.

I don't remember what the doctor said, but I lost it and turned around and began to cry. I got a quick grip on my emotions and just turned around and put my hand on my baby and began to pray aloud that God would heal my baby.

Around 11:00am he was given breastmilk through a feeding tube and he began to arch his back really hard and scream out. I could see that he was in pain. He was given morphine and a seditive to help to relax him.

His stats were continuing to drop. His respirations were 8 to 15 a minute and his heart rate reached the 230's!

We didn't know if God was going to take our baby home with Him. I saw in my son's eyes the same look my Grandmother and Dad had before God took them home with Him.

I kept calling my husband in St. Paul and texting him.

About an hour later, I was asked to step out of the room because AaronMatthew was critical. The doctor decided to put him on life support and told me to prepare for his death.

I was in the hall crying and I took out my Bible and began to read it.

It was October the 5th. I began to read Psalm 5. King David wrote the Psalm and wrote down how God heard his crys. I began to feel comforted by the Holy Spirit. I continued reading Psalm 6, Psalm 7 and I turned the page to Psalm 8. I saw in the margin something I wrote that was dated, June 3, 2014 next verse 2 which says, "Out of the mouth of babes and nursing infants You have ordained strength." I had just read that verse earlier that morning in the book of Matthew before the nurse called me. What I wrote in the margin of my Bible was, "6-3-2014 AaronMatthew will survive. God has ordained strength for him. For His glory and for His honor."

Great peace suddenly came over me and I called my husband and told him with tears that I know AaronMatthew will survive this! I had forgotten that I even wrote that. I remembered that I was a high risk pregnancy and that AaronMatthew could have been stillborn and that is why I wrote that back in June.

It was decided by the doctors to transport AaronMatthew to Children's Hospital where they felt that he could be closley monitored. I went with him in the ambulance and just left my car in the parking lot at the other hospital.

By this time, my husband and other son were on their way back from St. Paul, Minnesota. I stayed with my baby until about 3am and then the hospital put me up in the Ronald McDonald house next to the hospital.

My husband and son arrived the next morning.

It wasn't until late the next day that the doctors decided to try and ween him off the ventilator. They took him off the ventilator and he began to vomit blood and have bloody stools. Doctors could not figure out the cause to all of this. To this day, it still remains a mystery. God had mercy on us.

Looking Ahead

 Now faith is the substance of things hoped for, the evidence of things not seen.

Hebrews 11:1

To update you from the last blog post "Roller Coaster"--

• We still don't know the cause of AaronMatthew's fevers or where they came from.  He has had some slight low grade fevers that could be environment related. Such as, the temperature of the room and how he is clothed. But the 103 degree fever is unknown.
• The blood and urine sample's reveled no infections and they were repeated and in the clear.

The fluid around his lungs was due to increased fluid build up because of his heart defect and was taken care of with diuretics. He has had some more fluid build up and increased weight gain due to fluid build up in his body and around his lungs and also with that comes his fast hard breathing that restricts him from taking any fluids orally. The unfortunate thing is that when he breathes too fast, he burns too many calories and cannot gain "healthy weight." The doctors are just trying to find the right amount of diuretics to help with that.

• The ultrasound of his brain was done and did not reveal any abnormalities. Thank God!
• He was not as of this week, presented for open heart surgery as of yet. 

AaronMatthew has gained some "healthy weight." And is now above birth weight.  I realize that this all will more than likely fluctuate until his surgery.

There is now talk, AGAIN, of sending him home next week sometime. The nurses are going to teach my husband and I how to insert a feeding tube into his nostril and down into his stomach, they are going to teach us how to mix his food and how to feed him. He has taken a bottle as tolerated (it's easier for him to suck and doesn't tire him out and burn as many calories.)  I had given up any hope of nursing him until the doctor said that he just wanted him to take a bottle for 10 minutes.  I talked to the nurse practitioner and to the Pediatric Cardiologist about nursing him as tolerated (even though I know it takes more effort for him and could burn more calories) and the consensus was that I could not nurse him more than twice a day and not more than 10 minutes at a time and only as tolerated. I have been pumping my breast milk since his birth and only able to nurse him a few times. He will need to be fed through the feeding tube until his open heart surgery.

There was a consult for an Endocrinologist and some blood taken for AaronMatthew's thyroid. The results were that his LSH levels are high and a test is to be repeated next week. That is indicative of a low (under active) thyroid function (hypothyroidism). Which is common with Down Syndrome. 

All things considered, I believe we are on the up and up for right now and hope things will continue to go as well as they can. 

Thank you in advance for praying for us.