Slow and Steady Wins the Race

The nurse taking care of AaronMatthew told me today, "Like a turtle, slow and steady wins the race."

I have noticed since the surgery, AaronMatthew has a decreased lung capacity. When he cries, there is not much sound and it takes a lot out of him. He will turn purple quick. Patting him on the back or butt and gently bouncing him upright helps to calm him. 

The doctors almost had to put him back on a respirator this last week. He hasn't looked like he's felt well either.

I talked to the doctor about getting a lung doctor to check on him because of the decreased lung capacity and the oxygen saturations. I also asked if he was better off before the surgery because even though he had breathing issues before the surgery, it seemed as if they became worse? He is now on hi-flow oxygen 6 liters at 50% and increasing as time goes on. Every time they try to wean him, they end up increasing it to due to respiratory distress. 

She explained to me that some kiddo's after surgery stay on respirators for awhile. She said she believes AaronMatthew is progressing better than she thought he would. She said that he had major surgery and needed to have it to repair a hole in his heart and that the heart pumping the blood has changed pressures in his body and he's just going to take some time to adjust along with the valves that will not ever function normally because they are reconstructed. 

I asked her if we would be able to go home soon if we had around-the-clock care, like a PCA. She said he's not in any position to consider going home right now. My eyes began to fill with tears. I just want my baby to be well enough to come home! (We've been tenants at Children's now for over 2 months!)

Honestly, I was ignorant to think that it would be all okay after the surgery and there wouldn't be any breathing problems. I wasn't expecting respiratory distress. I was expecting that to be fixed. With that, I have become discouraged.

I was assured that even though AaronMatthew has respiratory distress at times, we are progressing forward and not to be discouraged because he is further ahead than the doctors ever thought he would be.

For that I praise the LORD.

Thank You Jesus!!

And even though they had to go up on his oxygen, today was a good day for AaronMatthew. He still looked sick around his eyes, but not as much as he had been looking sick this last week. Finally he has been fever free for over 48 hours and his heart rate and respirations are lower. He also was not head-bobbing. He would cry when I put him down because he was comfortable in my arms and wanted to be held. I hate to leave my baby at the hospital.

He is progressing slow and steady. 

Psalm 27:13

I would have lost heart, unless I had believed

That I would see the goodness of the Lord

In the land of the living.

Psalm 27:14

Wait on the Lord;

Be of good courage,

And He shall strengthen your heart;

Wait, I say, on the Lord!

Post Open-Heart Surgery

We made it! Praise the LORD.
God is good.

My son was just a day shy of 3 months old when he had his open-heart surgery. Of course it was a big surgery and hard on his body. The Cardiovascular team in the PICU is pleased with the results of a newer echocardiogram. Not to say that it is flawless, of course there are some issues, but minor at that.

AaronMatthew was starting to collect a milky fluid around his left lung. About a week before the surgery, he had a BROVIAC put in which is like a central line of sorts that went through a main vein to his heart so they could do IV and blood access since he is nearly an impossible poke for a peripheral IV line. The thought was that the BROVIAC was causing this fluid to build up so they took it out and now there is decreased fluid in his left lung. He spiked a fever overnight which is nothing new for him. They took cultures sometime last week because of the fluid build up and nothing grew so they don't think he has an infection. They gave him a 2 day course of antibiotics as well.

Since yesterday and today, he has been breathing really fast and having a fast heart rate at times. They are tweaking his meds and this again is typical for him when he has a fever. His body doesn't like to tolerate such things.

I find it's getting harder and harder to leave him at the hospital. Children's in doing a fantastic job and I thank God for the care my son is getting, but he's not home. It breaks my heart to leave. He's getting older and recognizes me and is starting to cry when I leave. He is smiling a lot more and coo-ing. He is now reaching for objects. He loves to sit up and know what's going on. My poor baby. I just want to cuddle him and hold him forever in my arms and sing to him.

Open-Heart Surgery

“Let not your heart be troubled; you believe in God, believe also in Me." John 14:1

Our son had his open-heart surgery two days ago on December 2, 2014.

The night before the surgery I held him as he slept in my arms. All I could do is pray, pray and pray some more. I knew God had this one and He was holding us all together. I didn't want to say goodnight because I knew the next day would come and we would have to give our child completely in the hands of the Lord, not that God was holding Him and had everything all the time anyways, but it was an act of faith that the Lord had it.

The morning of the surgery, I spent some time in prayer and reading the Bible. I really desperately wanted to hear the Lord's voice and be comforted by Him.  I wanted God to tell me that it was going to be alright.

For those of you who think I am crazy that the Living God can actually talk to you, please hear me out. If you think this is foolishness, you are perishing and just click off of this webpage because you probably don't care anyways. It is my prayer that whatever you are going through right now, that as you are reading this, you will take comfort in the fact that the Living God DOES care what you are going through. He LOVES you and has a PLAN and a PURPOSE in your life, and the lives of those you love so dearly. This is my HOPE and the ONLY thing that has and is currently getting me through this. God desires to have a relationship with you through His Son Jesus Christ. He made you and formed you in your mother's womb. He says in the Bible that you are fearfully and wonderfully made. The Bible is God's love letter to us and it is a way He speaks to us. I avidly read the Bible. I find it a source of strength and encouragement. I share with you my relationship with God and how He speaks to comfort me...

EVERYTHING we experienced from the date we found out about the positive MaterniT 21 results of Down Syndrome when I was pregnant lead up to this moment. (It's important for me to note: Not all babies that have Down Syndrome are born with a congential heart defect. It is only 60 percent. And not all positive results on a MaterniT 21 test are positive. There is a window from 9-15 weeks pregnant that it can be a "false-positive because they test maternal cells that can mimic a Trisomy 21 result, they do not test fetal cells as with an amniocentesis.) I knew as soon as the results came back positive, something in me just knew he was going to need open- heart surgery. I just knew.

There were many times I cried myself to sleep at night. And many times I prayed. If I could have stayed pregnant with him forever I think I would have to avoid the inevitable. His surgery. I knew it would cause him a lot of pain and discomfort. I would have gladly traded places with my baby.

So in prayer the morning of the surgery, I desperately wanted to hear the Lord's voice. Then I got up and got a cup of coffee and was walking from my kitchen in my dining room when I almost heard what sounded like a still small whisper in my thoughts that gave me such an overwhelming unbelievable peace unlike anything else. The thought was, "This illness will not result in death, but that the Lord Jesus be glorified though it." I remember reading in the Bible, the Gospel of John chapter 11, verse 4 pertaining to the death of Lazurus whom Jesus resurrected from the dead which says, "When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it."

From that moment on, I knew everything would be okay.

We arrived at the hospital about 6:30 am and we took turns holding our baby. I asked my son's nurse Michelle to take a picture of us.

It has helped to have such a caring dedicated team of individuals in the NICU at Children's Hospital. His nurses absolutely adore him! He's lived there for two months now and has captured the hearts of many nurses and doctors. He is one of those special babies that make their very difficult job well worth it.

We went down in the pre-op area and met with the Cardiovascular Surgeon and the team of Anesthesiologists.

We prayed for our baby and gave him over to God.

They took him back for surgery prep about 7:15 am and put him to sleep. Then they put in lines to main veins, like the jugular in the neck and another line in a artery in his wrist to measure blood pressure. They also did another echocardiogram to get a better picture of the heart before they started cutting him open.

About 9:30 am the nurse came out and told us they had started the open-heart surgery to repair the Atrioventricular Canal Defect. She said they did good putting in the lines and she would come out and let us know when he was put on the heart and lung bypass machine.

About 10:30 am he was put on the heart and lung bypass machine so his actual heart could stop beating and the Cardiovascular Surgeon could make the necessary repairs and reconstruct his heart that never fully developed and close two major holes and fix valves. The bypass machine re-routed the blood to pump through the machine and do the work of the heart and lungs artificially. 

My husband and I were getting nervous about 1:30 pm and were watching the door every time someone went in and out of the waiting room.  We were looking for the nurse about word of them restarting his heart. 

I think it was about 2:45 pm or so when the nurse came out and told us that he was off of bypass and the doctor would then come to talk to us in an hour and let us know what he did. She said that they had to sew everything up.

The Cardiovascular Surgeon came to talk to us about 4:30 pm and told us how the surgery went.  He said that he came across some difficulty with re-starting AaronMatthew's heart.  He said he didn't like the rhythm's it was making and had to restart his heart 3 times. He said that would be his main concern.  There was also a white milky substance found on his left lung that was a mystery. It was taken to the lab and sampled and has not shown any infection so far. The other thought was that it could have been some fatty substance from his heart working so hard and just deposited in his left lung. He said also the early morning hours might be a little rough for his heart and to bear with them as they make the necessary adjustments they need to make. He said he appreciated all the prayers because he came across some challenges. He said the echocardiogram after surgery was one of the best he's ever seen. We prayed with the surgeon as he prayed with tears for God's healing for our baby.

We got to see AaronMatthew straight out of surgery and before he went up to recovery in the PICU.  We met him by the elevators.

The Cardiovascular Surgeon advised us to get something to eat and return for a short time later and go home and sleep.

We picked up our son Tres from a friends' house and went out to eat and I returned to the hospital while my husband and my other son went home for the night.

I saw my baby.

JUST BREATHE...

I looked at him and everything else around me ceased to exist...

JUST BREATHE...

I could not stop the tears from coming...

JUST BREATHE...

I thought, "GOD HOW COULD YOU?!!!"

Though my tears, I was feeling my heart starting to get bitter.

JUST BREATHE...

I prayed, "GOD HELP!!"

The nurse asked me if I was alright. I said "NO!"

The nurse asked me if I wanted to sit. I said "NO!" And I kept staring at my baby with tears.

JUST BREATHE...

Through the tears and the bitterness I was beginning to feel in my heart, I asked God, "Do you care? Look at my baby! LOOK! Look at him!! How could You allow this to happen? Why could it have not been me? He's in pain...God help. GOD HELP! GOD HELP! Help him God! HELP HIM! Please. PLEASE HELP. Please HELP HIM. PLEASE. Help."

I called my husband and told him and described to him and sent him a picture of our baby. He said softly, "Can you imagine what God felt when He saw his Son Jesus dying for us on the Cross?" I said, "No, but yes." I could not say a word. I could not even say a word in my heart. I was reminded of earlier in the day during the surgery, I was reading in the Bible in the Gospel of Luke all of the crucifixion of Christ. In that moment, I had forgotten that Jesus Christ died to take away the sin of the world. That through His horrible suffering and death on a Cross, there was access to God and I could live eternally with Him. The bitterness in my heart that I was beginning to feel for God disappeared and I asked God to forgive me. I began to recount God's love for us. If anyone knows our pain, God knows it. In His grace, love and mercy He DOES care. He DOES see. He DOES know. He has allowed my son to live through this life saving surgery. He has given wisdom to the surgeon, doctors, nurses and everyone involved in his care. He has shown us that His ways are not our ways. 

We have HOPE. We have FAITH. We have JESUS.

“Let not your heart be troubled; you believe in God, believe also in Me." John 14:1

He has had some bumps that are to be expected. His heart has needed to be paced with electrodes the first night of his surgery and last night and early this morning as well. The doctors did a EKG this morning and said that the rhythm's his heart is putting out is not the same rhythm's of when his heart was first started right after the bypass, which is good news. They are weaning him off of the ventilator. He has had periods of getting extremely uncomfortable as he is coming out of anesthesia.

When I went in this morning to see him he was squirming and thrashing. His face was turning purple and his face was squinting. They had to give him a different kind of sedative which doesn't affect his heart or breathing. Please pray for him in this and for us because it is very difficult to see him this way.

Stick to the Plan: A Lesson

I don't know if you've ever heard the saying? "Stick to the plan, it could save your life."

That was the first thing that came to my mind when we were asked if we'd like to move AaronMatthew's scheduled open-heart surgery date up.

I am not saying he could have died if we did or do it sooner, although that is a real possibility with all of the risks involved. But there is a peace we have about sticking to the plan.

AaronMatthew came back home for another 2 days and had to go back into the hospital because of a fever that was 102. He was admitted directly back into the NICU. He had some more respiratory distress last Saturday and was transferred to another room to keep a closer eye on him. The doctors were talking about putting him in room 404. To be honest with you, I freaked out a little bit because I know most babies in 404 are on respirators. He also could not keep a stable body temperature and was beginning to be hypothermic.

The doctors took all of his feeds away from him and had him on nothing by mouth. All of his cultures and blood draws came back negative for bacterial infections and virus's. Again, we could not figure out the cause.

It was proposed to us that we could do the open-heart surgery to fix his complete AV canal defect as soon as he got better. My husband and I didn't agree with that decision. We wanted to go with the original plan since the last hospitalization.

Here is the original plan:

• We scheduled the open-heart surgery for November 26th. Take him home. Hope he continues to gain weight and get bigger. (We were told that Down's babies generally do better with these types of open-heart surgery if they are greater than 2 1/2 months old and weigh over 9 lbs.  We were also told that the valve that they need to repair is usually bigger and there is a slimmer chance for another open-heart surgery in the future. [A Resident doctor did research on our son's behalf]) And if for any reason we need to come back, they would keep him until his surgery.

Okay, we understand that medicine is not a science, that is why they practice it.

We were proposed on Saturday to go with the open-heart surgery for this past Monday with a Cardiovascular Surgeon that we haven't met.

Um... No thank you. Nothing against that surgeon, we just didn't know him. And it's not an emergency. We told them we wanted to stick with the plan.

When I went up to see my son, the Cardiovascular Surgeon that we are going with was up there too looking at AaronMatthew. He proposed to do the surgery earlier, like tomorrow. I told him that I wasn't comfortable doing that. I wanted to stick with the plan and I said, "I am not even mentally prepared to do it sooner." Of course I want what's best for my baby whether I am mentally prepared or not. He said the longer AaronMatthew stays in the hospital the more he's exposed to germs and virus's. I get that. I do. I just couldn't shake, "stick to the plan." I was almost in tears thinking of the very real possibility that God could take our baby. He said there was no pressure and they would touch base with us this morning.

I talked to my husband and told him all that the surgeon said. My husband said, "No. We're sticking to the plan." I was going back-and-forth with him on the phone about all of the "what if's" and got frustrated at the idea of doing it sooner and not sticking to the plan. I know that frustration is not from the Lord. We didn't have any "peace" about doing the surgery sooner.

A new Cardiologist is on rotation and they have been trying to get the surgery sooner. I went back to the hospital and talked to the Cardiologist and told them my concerns about sticking to the plan. Basically an ultimatum was given that either we get the surgery done when they want it done (which is sooner) or we go home and come back when we originally scheduled it.

That brings me to today...

My son's nurse called me and said that they can do the surgery either tomorrow, Monday or the 26th. She said talk it over with your husband and call me back to let us know. I said we are pretty firm with sticking to the plan.

I talked to my husband and he said again, "We're sticking to the plan."

I told the nurse, I understand the whole germs and virus thing. I told her that my other son Tres has a cold, which he does and if AaronMatthew comes home, he will go back because he will get my son's cold. I said, "Why don't we just stick with the plan?" Why can they not keep him until the 26th? I told her that I also believe he needed more time to recoup and recover from that last bout of respiratory distress last Saturday. I mean, he's still not on full feeds. They have started increasing his feeds by 5cc's yesterday.

I know that God created my baby and God know's what is best for my baby and all I want is what is best for my baby. Unless God absolutely says do it tomorrow or AaronMatthew has some sort of emergency and needs to have it earlier, we are not budging.

We are sticking to the plan.

UPDATE:
We stuck to the plan, thank God! because if we would have scheduled it for when they wanted to do it on Monday, he ended up sick and with a fever early Tuesday morning. The NICU nurse couldn't believe a "mother's intuition!" She was amazed and marveled and said she believes we averted a certain hardship if we would have had the surgery earlier.

Be still, and know that I am God: 

I will be exalted among the heathen,

 I will be exalted in the earth. 

The LORD of hosts is with us; 

the God of Jacob is our refuge. Selah.

Psalm 46:10-11

Trust in the LORD with all your heart,

lean not on your own understanding.

In all your ways acknowledge Him,

and He will direct your path.

Proverbs 3:5-6

Be anxious for nothing, 

but in everything by prayer and supplication, 

with thanksgiving, 

let your requests be made known to God

and the peace of God, 

which surpasses all understanding, 

will guard your hearts and minds through Christ Jesus.

Philippians 4:6-7

From Streams in the Desert Devotional November 20

How To Wait

Blessed is the one who waits and attains to the 1,335 days.—Dan 12:12 NET

It may seem an easy thing to wait, but it is one of the postures which a Christian soldier learns not without years of teaching. Marching and quick-marching are much easier to God’s warriors than standing still.

There are hours of perplexity when the most willing spirit, anxiously desirous to serve the Lord, knows not what part to take. Then what shall it do? Vex itself by despair? Fly back in cowardice, turn to the right hand in fear, or rush forward in presumption?

No, but simply wait. Wait in prayer, however. Call upon God and spread the case before Him; tell Him your difficulty, and plead His promise of aid.

Wait in faith. Express your unstaggering confidence in Him. Believe that if He keep you tarrying even till midnight, yet He will come at the right time; the vision shall come, and shall not tarry.

Wait in quiet patience. Never murmur against the second cause, as the children of Israel did against Moses. Accept the case as it is, and put it as it stands, simply and with your whole heart, without any self-will, into the hand of your covenant God, saying, “Now, Lord, not my will, but Thine be done. I know not what to do; I am brought to extremities; but I will wait until Thou shalt cleave the floods, or drive back my foes. I will wait, if Thou keep me many a day, for my heart is fixed upon Thee alone, O God, and my spirit waiteth for Thee in full conviction that Thou wilt yet be my joy and my salvation, my refuge and my strong tower.” —Morning by Morning

Wait patiently wait, 

God never is late; 

Thy budding plans are in Thy Father’s holding, 

And only wait His grand divine unfolding. 

Then wait, wait, 

Patiently wait.

Trust, hopefully trust, 

That God will adjust 

Thy tangled life; and from its dark concealings, 

Will bring His will, in all its bright revealings. 

Then trust, trust, 

Hopefully trust.

Rest, peacefully rest 

On thy Saviour’s breast; 

Breathe in His ear thy sacred high ambition, 

And He will bring it forth in blest fruition.

Then rest, rest,

Peacefully rest! —Mercy A. Gladwin

Five Days Home From the NICU

AaronMatthew came home from the NICU on Friday, October 31st. It was a moment when I cried tears of joy. Finally!! After being 57 days old, it was our time to go home.

As I said a tearful goodbye, a nurse that had been in the same room as AaronMatthew and taking care of other babies had called me over to her. She slipped into my hands a book that was titled: God's Promises for Mothers. In it is nothing but Scriptures from the Holy Bible. She gave me a tearful hug and told me that she appreciated me doing what I am doing here in Detroit ministering to the people here.

We were home for 5 days. My husband and I were terribly sleep deprived in caring for our baby with around-the-clock.

I took AaronMatthew to the pediatrician on Thursday to get vaccinated.

He took a nap when he got home and woke up breathing really hard and rapidly. He seemed uncomfortable. I waited about 10 minutes to see if he would calm down when I held him and I also decided to call his Cardiologist. I didn't get a hold of him at that time. After the 10 minutes, we took him into the ER due to repertory distress. The Cardiologist called me when we were on our way to the hospital and had the Cardiologist on call paged to come to the ER. We were rushed into trauma and a IV was started.

A close eye was kept on him. There was talk about intubation because he was working too hard to breathe and then they admitted him back up to the NICU where he has been for the last 3 days.

The thought is that all of this is a combination of his vaccinations and a virus and it was just too hard on his body and it caused an issue with his heart to beat harder and faster, which in turn made him breathe harder as well. There have been no tests that have come back positive for bacterial viruses. (I believe it was overload on the vaccines which caused this.)

My husband and I saw the Cardiovascular Surgeon and he explained how he was going to do the open heart surgery and all of the risks and possible complications.  As he was explaining things to us, I could not stop the tears from coming as I looked at him talking to us. He asked if we had any questions and I tearfully looked at my husband and he said, I don't even know, what do I ask? He looked at me and I said I am a sleeped deprived and a little numb. I don't know.  The doctor pulled out his calendar and said how does November 27th sound for the surgery? We said that was fine. Our pastor and his wife were going to come and visit us the week of Thanksgiving and that works out because they will be here. I am so thankful for that because we don't have family here in Detroit. We are thankful that they are going to be here for us.

The Cardiovascular Surgeon then said, "Would you like to pray?" We said Yes. Of course. And he prayed for AaronMatthew, us, the doctors and everyone involved in his care. It wasn't just a short prayer. It was meaningful from his heart. I sobbed and began to cry hard. The doctor got up and left the room and my husband and I cried some more.

We know that "God is with us." Immanuel.

Come to me, all you who are weary and burdened, and I will give you rest.

Matthew 11:28

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.

Roller-Coaster

Yesterday was a hard day for us. The doctor had asked me yesterday if I had anymore questions for her and I said, "I don't like the roller coaster. When can we get off?"

God kept reminding me several times,

"For I know the plans for you declares the Lord. Plans to give you a hope and a future." 

(Jeremiah 29:11) 

AaronMatthew had a hard night the night before last. His respirations were extremely high and he had a fever of 103. So far it's unexplained. Which could mean it might be pain due to the circumcision he got? Or infection? They drew blood and did a cath and got a urine sample. We will get the results in about 36 hours on that. They want to see if bacteria grow on the cultures. They did a X-ray and some fluid is around his lungs too. But it's not pneumonia. They are thinking that is due to the heart defect. The Pediatric Cardiologist came up and talked to me. He did another echocardiogram. He said that it still all looked like the typical AV canal defect (hole in the heart). He said AaronMatthew's fast breathing (which has been going on since almost birth) is not typical of AV canal heart defect. He doesn't know if it's related to the heart or not? He is going to try a test after the fever clears and see if fluid floods his lungs if they cut back on the lasix meds he's getting. If that happens, then it is the heart. He should also be gaining weight and with his breathing fast he is burning too many calories and below his birth weight at 22 days old. He will most likely be on a feeding tube and be fed that way until his surgery because he is exerting himself too much to suck from a bottle. He ordered an ultrasound on his head thinking it could be a vein that is emptying extra blood in the heart and that could be a possible reason for the fast breathing. I should get those results tomorrow morning. If that is the case, we are looking at possible brain surgery as well. He is going to talk to his colleagues next Tuesday at children's hospital in Detroit to present his case for open heart surgery in a few weeks or less instead of waiting a few months.

Right now we are praying our way through, because that's all we can do and be concerned about the moment and not tomorrow or next week because things change sometimes from minute to minute, hour to hour and day to day. We know God has got our baby in His hands. We are trusting in Him to carry us through. It's difficult to see him so sick.

Where would we be without the Creator of the universe to hold us together when we are falling apart? What would I do if I didn't believe that God formed and knit my precious baby together in my womb? How could I have peace which goes by all understanding if I didn't trust that God was in control? Don't get me wrong, I pray and pray and pray some more. And I cry almost everyday, sometimes several times a day- really, and at times I am an emotional wreck to be honest with you, but I know God's got this. He understands what it's like to see His Son suffer. Surely He knows us and our situation. He is acquainted with all of our ways.

Please continue to keep us in your prayers.

I can do all things through Christ who gives me strength. 

Philippians 4:13

The Birth of AaronMatthew Immanuel Connors

AaronMatthew Immanuel Connors

Born September 3, 2014

3:50 am

6 Pounds 12 Ounces

 For this child I prayed and the LORD has granted me my petition which I asked of Him.

1 Samuel 1:27

For You formed my inward parts; 

You covered me in my mother's womb.

I will praise You, for I am fearfully and wonderfully made.

Psalm 139:13-14

I had talked to my daughter Alyssa a week prior to going into labor. She said that she would love to share a Birthday with her younger brother and that she'd pray for it. (They would be 21 years apart). I told her that I didn't know if I could last another week because I was already dilated to 2 and my cervix was thinning. Besides that, I was so very uncomfortable. 

I decided to take daily trips down to the River Walk in Downtown Detroit and speed walk along the lake shore as I would push my son in a stroller. And then I would end up at the Renaissance Center eating McDonald's for lunch with my son Tres and finish up at the park with him. 

My husband and I went on Tuesday the 2nd of September to an ultrasound and a OB appointment. My OB told me that I could be induced that day if I wished but that he didn't want me to go past the following Tuesday and told me he would be inducing me if I didn't go into labor. We declined that day. 

I dropped my husband off at the church and was going to pick up my son Tres from a friend's house when I got rear-ended! The LORD definitely had His hand of protection over us. It was a hit-and-run. The guy saw that I was pregnant and must have freaked out. My head hurt pretty bad and my shoulder hurt from the seat belt strap. Police and EMS came out and my husband took me to the hospital so I could get monitored. Everything was stable from an OB standpoint. I was so tired and braxton hix contractions were coming more and more. I decided to go home.

Around 10 pm, I went into labor. I layed down for bed. Contractions started coming and they got to about 4 minutes apart. We decided to go to the hospital. We arrived around 12:30 am and had AaronMatthew at 3:50 am on his sister's Birthday.

I was only able to hold AaronMatthew for a literal minute after he was checked out and before he was taken away to the NICU.

The next week was a whirlwind...

AaronMatthew had jaundice and his billiruben levels were up as was his red blood cells which made it difficult to start an IV. 

He was indeed born with the AV Canal Heart Defect (hole in the heart). And Trisomy 21 (Down Syndrome) was confirmed on a blood test that was done on him, 

Unfortunately because of the jaundice, I was not able to hold him much because he was required to be under photo therapy lights.  

And because of the hole in his heart, he is very tired and I could not nurse him either.

I had to leave the hospital without my baby. There is no feeling in the world like leaving your baby and being separated from him. Even in the hospital, I'd cry myself to sleep at night and cry out to God.

I can do all things through Christ who strengthens me.

Philippians 4:13

AaronMatthew's respiratory rate is higher than normal. It was explained to me as if I were to run a marathon and run two miles and back without stopping and immediately try to slam a soda, I'd choke. Because of my son's heart condition, he is not able to bottle feed much nor nurse. Besides that, he gets too tired out. He is fed through a feeding tube. There was also some fluid around his lungs and the doctor decided to start lasix. 

When AaronMatthew was only a week old, I ended up with an attack of vertigo. I decided to stay home instead of go into the hospital.  I have re-current attacks and expected one since I had my son and knew there would be a drop in hormones, which seems to be a trigger for these attacks for me. It was debilitating and I wasn't able to leave my bed for two days. I am on the up and up from that attack now.

God has been faithful. I don't know what I would do now if it weren't for my faith in God. I don't know how people do it without God? 

I will lift up my eyes to the hills-

from whence comes my help?

My help comes from the LORD,

who made heaven and earth.

Psalm 121:1-2

Full Term

35 Weeks Pregnant...

I decided at the last moment to go with my husband to Philadelphia for a church outreach. The trip was to be about a 13 hour drive! I was advised to stay home because of risks of traveling and possible pre term labor, blood clots, any number of "what if's." I prayed about it and had complete peace and knew I was going to miss out on what the Lord had for me if I didn't go. Besides, what if I had the baby in Philly? Philadelphia has one of the best children's hospital's in the country and I know God would have provided a place for us to stay. I was completely blessed and was not terribly uncomfortable. I am so glad I went. We even went to the Jersey shore and swam in the Atlantic Ocean.

36 Weeks Pregnant...

I have seriously gotten to the point where I am really physically uncomfortable. Last Sunday I had braxton hix contractions for the most part of the afternoon and into the evening and night. I had fetal monitoring and a doctor's appointment the next day. My OB said I was dilated to almost 1. I for sure thought I would have AaronMatthew sometime this last week, but not so far. I also had an ultrasound. The ultrasound tech and I talked about what the Lord has been doing in our lives and we had good fellowship for an hour afterward. She said the amniotic fluid is on the low side of normal, but not to be concerned about it. AaronMatthew's head is smaller- in the 30th percentile and round, which is another soft marker for Down Syndrome and the hard marker being his heart defect.

37 Weeks and 5 days Pregnant...

I have been praying that I would be well rested before I go into labor. I have slept pretty well these last few nights. God is faithful! As of Monday, I was dilated to one-and-a-half, my cervix was thinned out and the baby's head was in position. On Tuesday, I went on a long walk and went on swings trying to make AaronMatthew come, but he has not yet. I haven't had many contractions or even strong one's. But I am feeling more pressure in my lower abdomen and some pelvic pressure here and there. My doctor advised me not to waste anytime getting to the hospital, since I went from dilation at 2 to delivery with my first son in 3 hours. But I had horrible pre labor for 26 hours with a hard closed cervix. At least I have a head start.

I keep praying the Lord would prepare us physically, mentally, emotionally and spiritually for the road ahead that is so filled with many uncertainties concerning our child. We don't know what lies ahead, but God does and that is what gives me comfort and peace. I was just sharing with my neighbor Diana, who just had a heart attack and is having open-heart surgery on Friday (and is at the same hospital I am delivering at), that it's like a parade route and God has an ariel view. He can see the beginning and the end. He knows what's occurring and what's going to occur. He know's our beginning and our end. We need to simply trust Him. And not only look to Him in our time of need, but always. So I ask myself, am I prepared or ready to have this baby? It makes me realize not to ask such questions, but to know God will give us the strength we all need, when we need it. To know He is faithful. To know He promised that He would never leave me nor forsake me. To know He loves me and loves my family way more than I ever could. To know God personally. To have a relationship with Him. To know His character. To know His Word. And to have His peace.

Ultrasound & Check Up (31 Weeks Pregnant)

Last Friday I decided to go on an adventure. I was overdue for glucose testing and a blood draw from the lab. Glucose testing is a test that takes an hour and it's to see if I have gestational diabetes. If anyone knows about toddlers that are a year-and-a-half, you know they are busy, busy, busy! I decided to bring my busy toddler with me anyways. 

I was given a super sweet orange drink to drink within 5 minutes and the lab technician gave me a chair to sit in. There was a t.v. monitor hooked up to it. I put my son on my lap and watched Daniel Tiger's Neighborhood. He ate his snacks and drank his juice and was surprisingly very well behaved. Those moments bring joy to this mother's heart.

Here is my son Tres and I at the lab.

I was able to have two of my friends watch Tres yesterday for me while I had an ultrasound and regular OB appointment. My husband was busy at our church where it was opening day for our second hand household store, grill and coffee shop.

During the ultrasound, I asked if the tech could see a cyst in Aaron Matthew's brain. She said she couldn't find one, which means, it cleared up. Praise God! And I asked her if she could see the NT thickness on the back of his neck and she said no because hard bone has formed. She could not tell if Aaron Matthew has a nasal bone or not because he was not in an ideal position. She also had a hard time looking at his heart as did the high risk doctor that came in. I do have a 4D picture of his face with his arm and fist up. The tech told me Aaron Matthew is in the 61st percentile for his weight at 4 pounds and 3 ounces which is a healthy weight, and if I carry him to full term and he keeps putting on weight, his projected birth weight will be over 8 pounds! Praise God! That's good news. That puts me at less of a risk for a cesarean.

I saw my OB doctor afterward. He said the glucose testing came back good. But the blood draw showed I have a low iron count. That explains why I am utterly exhausted almost all of the time! He put me on an iron supplement along side my prenatal vitamins. I hope to get some energy back and not feel like I ran a marathon all of the time.

He is also going to start with fetal monitoring once a week and another ultrasound in about 3 to 4 weeks. He said that Aaron Matthew looks good except for his AV canal heart defect.

Fear not, for I am with you;

be not dismayed, for I am your God.

I will strengthen you,

yes, I will help you,

I will uphold you with My righteous right hand.

Isaiah 41:10

Ten Weeks to my Due Date (30 Weeks Pregnant)

Thirty weeks pregnant and ten more to go until my due date. At times I forget I am pregnant. And at times, I am super uncomfortable. Aaron Matthew is feeling more like an alien in my belly these days. I can feel his foot or heal as well as where his bum is. Flutters have been replaced by big bodily movements. It seems like when I lay down or rest is when he is more active. Or I can say, that's when I feel him move the most. He has hiccups pretty regularly which is good because that means his lungs are forming.

I had an OB visit a week ago. My doctor discussed the possibility of a cesarean (c-section). He said the reasons to do it would be fetal distress in labor and delivery. He explained that some babies with chromosomal abnormalities tend to be a bit smaller at birth and they don't tolerate labor well as it puts stress on them and some end up being stillborn in the process. He said AaronMatthew is measuring right on he is doing an ultrasound on Monday to check his growth. He will also look for tell-tale signs that could potentially cause stress. My doctor told me then he would want me to avoid labor all together. I really don't want a cesarean. I've had an operation similar to that in August of 2007 when I had a cyst the size of a grapefruit removed along with my left ovary and fallopian tube. It took a long time to recover from that. I remember the extreme stabbing pain I felt when I laughed, sneezed or let gas out. I would not be looking forward to that surgery if that is what is needed and chasing around my busy toddler who likes to climb all over me and my pregnant belly. I told my doctor that we stuck with him because we trust his judgement. And we do. I told him if that is best for Aaron Matthew, we will do it, but that is not my preference. We will have to wait and see.

God is faithful, by whom ye were called unto the fellowship of his Son Jesus Christ our Lord.

1 Corinthians 1:9

Fetal Echo Cardiogram 25 Weeks Pregnant

I saw a Pediatric Cardiologist today. He did a special ultrasound on Aaron Matthew's heart.

Aaron Matthew was not in an ideal position to see the inside of his heart. He is sitting vertical in me with his head up, his feet down and facing my back. That would explain the kicking on my bladder and cervix.

Some good things that the Cardiologist said were good was that he could see the main artery and two veins in the heart and they looked "beautiful."

He did see an Atrioventricular Canal Defect (AV Defect), which is a hole in Aaron Matthew's heart that happened because his heart failed to develop completely.

The doctor showed me in this book this picture and he explained to me the ways that blood is supposed to pump in the heart.  Oxygen rich blood  is supposed to go through ventricles of the heart and empties out through the lungs and back into the chambers of heart again. (I think I have that right, but could be wrong.) He told me that there is supposed to be a separation between the chambers, but with Aaron Matthew's heart, there is no separation it is just a hole and the oxygen rich blood mixes with the other blood from that pumps back from his lungs to his heart.

He said Aaron Matthew is going to need open heart surgery to repair the problem. 

He explained that ideally, they would like to see a baby at least 6 pounds before they do surgery. He said he doesn't see why I would need a C-section, except if Aaron Matthew was in distress. Then he said I would have no choice. He told me that because of his heart defect, he might need oxygen after he's born until his surgery. He said Aaron Matthew will probably be weaker and more tired and it could be difficult to nurse him. He said breast milk is best and he doesn't want to discourage any mother from breast feeding their baby or bonding with them because that is best, but the baby will need a higher calorie intake due to breathing much faster than normal because of the heart defect.  He said that I should expect a NICU visit right after Aaron Matthew is born, but not for long. Just for monitoring for a few days if all is a typical AV Defect. He said that Aaron Matthew would be sent home on medication like lasix to keep his lungs from filling up with blood and other medications as well.

He said typically, baby's with this kind of heart defect recover well and have surgery around 4 to 6 months in age to repair the heart. He showed me what the diagram looks like to repair the heart.

He showed me again on a plastic model of a heart and was explaining to me how things work and all I could think of was "don't cry" as I started to cry. The voice of the doctor was being drowned out by my own thoughts to hold back tears. He stopped talking as I started to cry and the nurse handed me the box of tissues.

It's not easy to be told this news. But my faith and trust is in the Lord Jesus Christ. He doesn't make mistakes. He created, made and formed Aaron Matthew in my womb. He is fearfully and wonderfully made for the LORD's purpose. All for the glory of God. No matter what happens, it is because God allowed it and God will see us through. I am confident in that.

The LORD is good, a refuge in times of trouble. He cares for those who trust in him

Nahum 1:7

Genetic Counseling Session

I made an appointment to see a Genetic Counselor. I had called to reschedule my appointment because my husband could not make it and wanted to come.

The lady on the other end of the phone said we do not typically re schedule these appointments so far into the pregnancy. She transferred me to the Genetic Counselor to further assist me.

I had said I was re scheduling the appointment so my husband could attend. She seemed not to like that idea. She warned me that, "time is of the essence."

(I was extremely irritated and frustrated at her comment and the receptionists comment.)

I said, "What do you mean by that!?" She replied, "You are getting rather far into your pregnancy and we want to leave the option up to you to terminate your pregnancy if you decide and if you re schedule this appointment, you might not have the opportunity to do that."

I could feel my adrenaline pumping as she was talking. I said, "Why is it that this is the third time I was given this option and not at all with my previous pregnancy?"

She said because of the chromosomal abnormality.

I said, "Hmmm... Let's say I have a neighbor. Maybe he is an inconvenience or maybe not at all an inconvenience, would you terminate him for me?"

She said, "Ma'am, we're talking about your pregnancy, not your neighbor."

I said, "What's the difference? I view my unborn baby as a human being made in the image of God as I do my neighbor. Answer the question! Would you terminate my neighbor for me!?"

She said she felt uncomfortable and wasn't going to answer the question.

Really!!!???

I felt even more uncomfortable!!!

I said to her, "Next time when you ask a woman this question, please think about this conversation. I hope it sticks with you. Put it down on my record. Highlight it! Put it in BIG BOLD letters! I will NOT terminate my child!"

My husband Bernie and I went to Henry Ford Hospital in downtown Detroit to see the Genetic Counselor.

We reviewed the results of the MateriT21 test and she said that it is not a standard recognized test for Down's. She suggested a amniocentesis to confirm the results. We turned her down because all of the signs point to Down's. The NT thickness on the back of Aaron's neck and his heart defect, not to mention a positive on that MaterniT21.

The lady gave us a book on Down Syndrome, pamphlets and spoke to us in detail about how the chromosomal abnormality happens. She spoke of three different types of Downs and was curious to see if it was the hereditary type of Downs that our baby might have because my niece has it as well.

We also had a detailed ultrasound that seemed like it took much longer than usual. The technician was focused on the heart and on the head of Aaron.

We had more detailed results of the ultrasound:
For Aaron's heart:

• A ventricular outflow tract is a portion of either the left ventricle or right ventricle of the heart through which blood passes in order to enter the great arteries is suboptimal.
• There is a 1.7 mm pericardial effusion. Which means that there is fluid around his heart.
• And he has a VSD (ventricular septal defect), which is a hole in the bottom two chambers of his heart. 

They also found a small cyst in Aaron's brain but said that is spinal fluid and should disappear within the next few weeks.

Other than that, Aaron is of normal size for his gestation, with his head measuring a little bit smaller. Which is also normal for Down Syndrome.

I would have lost heart, 

unless I had believed that I would see the goodness of the LORD 

in the land of the living. 

Wait on the LORD; 

be of good courage, 

and He shall strengthen your heart; 

wait, I say, on the LORD! 

Psalm 27:3-4