Milestones

2 1/2 Months
Smiled for the first time.

6 Months
Laughs and smiles back.
Holds an object with both hands.
Tracks an object.

7 Months
Says first word, "Mom"
Blows raspberries and clicks his lounge.
Moves and object from one hand to the other.

8 Months
Ate solid food for the first time.
Loves vanilla ice cream, peas and banana pudding.
Raises tummy up when laying flat on back.
Lifts his hands up when he wants to be held.
Sat unassisted for 15 seconds.
Says, "Mom" "Mama" "Dada" "Baba"
Copies blowing raspberries, clicking lounge, and putting lips together to make "pa" sound.

9 Months
Rolled from tummy to back.
Held himself up in a seal position on his belly for 30 seconds unassisted.
Bounces and turns in jumper.
Turned himself 90 degrees around on his back in the crib.
Expresses happiness, hunger, tiredness and frustration.
Screams at his big brother Très to leave him alone with a high pitched scream.

Blessed Are The Flexible

Plan ahead when taking a trip with a child who has Special Needs.

Call the Med supply company and order extra supplies.
Even mail ahead a box if you can.

See the pediatrician and get a letter for medical equipment, especially if you are flying. And get the OK to fly.

Make sure you have an adequate amount of meds that are needed. Especially refills or scripts in case you run out of prescription meds.

Get extra business cards for the pediatrician and specialists incase of an unexpected visit to a hospital.
Plan on taking extra time to get through TSA security at the airport if you are flying. Especially if you have medical equipment or medications.

Always be prepared to have things NOT go as planned. Be as flexible as possible. Expect the unexpected.

My husband and our boys took a trip to see family and friends.

We were first driving to Wisconsin for a Pastors and Leadership Conference. The morning we were getting ready to leave, I was getting the boys ready and bathed. I was bringing my naked boy to the bath and plop! Out fell his Gastric Tube! We followed the surgeons' directions exactly to a T. We cut the balloon portion off the tube and stuck it right back in the surgical opening and taped it so the hole wouldn't close. Then we called the on call number for the office. Turns out, the surgeon and his nurse were at a medical conference. I talked to the Resident doc on call and we were able to go into the office and the popped a new one (better one) right in.

We made it to our destination in Wisconsin without any problems.

From there, we started to make our way to my hometown in Minnesota, when our vehicle's transmission died. Fortunately, family and a couple that we knew that were at the conference with us were able to take us to Minnesota.

We stayed with my daughter, son-in-laws and grandchildren. We had a blast going to Como Park and Zoo in St. Paul. It brought back memories of my childhood and times before we moved to Detroit.

From there we flew out to a warmer weather climate to see my in law's. It was their first time meeting AaronMatthew. We had such a good time, until... two days into our trip, our oldest son came down with a fever, runny nose, cough and sneezing. And five days into our trip, I awoke with a vertigo attack and was hospitalized for 28 hours. We were due to fly out less than 24 hours from the time I got out of the hospital. I could see AaronMatthew was starting not to feel well. He had a cough and was sneezing with a runny nose, but no fever. I was still really woozy and dizzy. My husband seemed to think I could fly back to Minneapolis, even with a layover. I knew I had to. I just didn't know how? But with AaronMatthew getting sick, I really had to. By God's grace we made it back to Minnesota.

The next day, AaronMatthew got a fever of 102 and was pretty sick. My husband and I took him to St Paul Children's Hospital. He was hospitalized overnight for observation and released the next day.

We we're planning on doing family pictures Saturday evening and AaronMatthew's baby dedication the next day on Mother's Day. My son Trés and I got sick with a stomach bug and I puked (again), for two days. Needless to say, we we're really looking forward to going home, but bummed that we weren't healthy enough to enjoy our trip.

AaronMatthew Got the Gastric Tube

AaronMatthew had his gastrointestinal tube surgically put in late last month.

He has had it now a little over 3 weeks.

We stayed in the Pediatric ICU for the surgery.

A woman in the hallway saw him in his hospital room. I told her and her daughter to come in and see him.

I told her about his medical problems and how we thought God was going to take him home October 5th last year and how I read when in the margin of my Bible while he was getting intubated, "AaronMatthew will survive" which was written almost 4 months earlier than that moment when I was pregnant with him.

She then told me her son was fighting for his life across the hallway. He was involved in a hit-and-run. She started to cry and I put my arms around her and held her while she wept on me and I prayed to God for a miracle to save her child. I don't know what happened because we were discharged a couple days later and things were touch and go with her son and the doctors didn't know if he would survive.

We went home with the gastrointestinal tube and I had to change the dressings twice a day.  Let me say, it is one of the grossest things I have ever done! I wouldn't do this if I didn't need to.

AaronMatthew has benefited a lot from having it.

There is no more uncomfortable tube in his nose and down his throat. He breathes so much better. He's more comfortable. He is not broken out from tape on his face. He can swallow more comfortably. I can see his cheeks.

He is going to have the gastrointestinal tube until he can make considerable progress gaining weight for at least 3 months without use of the tube
.

He still is not wanting to suck on a bottle but, he loves ice cream and peas.

Saying Goodbye to a Child in the PICU

And we know that God uses all things together for those who love Him and are called according to His purpose. Romans 8:28

I attended a Memorial service this morning with AaronMatthew for a baby that was only 11 months old when God took him home. From what I know, there wasn't much difference between the other little boy and AaronMatthew.  The were similar in the fact that they both had Down Syndrome. They had the same type of congenital heart defect.

I was first introduced to the child by the Cardiovascular team that was going to do AaronMatthew's open heart surgery. He had a scar from his open heart surgery that was healed. Only, he was still on a respirator. I met the child's mother at Children's Hospital in the Pediatric Intensive Care Unit shortly after AaronMatthew's open heart surgery. We talked of the similarities of our son, medications and the care our children was receiving.

Whenever we would see another in passing, we would update another on the conditions of our son's.

My baby got better, and her baby got worse. He just was so dependent on the respirator. Then his kidneys started to fail. Then he needed chest tubes to help with the drainage. I asked her if I could pray over her son and I did. The baby was fighting for his life. She was still hoping to take him home and had a goal of a minimum 2 month longer stay at that time. Last month, she was looking forward to inviting us to her son's first Birthday party.

He fought hard and the Lord took him home.

I know the child is with the Lord. I cannot help but think of AaronMatthew and the day we thought God was going to take him home. I cannot imagine the pain of losing a child.

Her child was such a blessing and showed us all the importance of life and how truly precious it is.

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?  Nay, in all these things we are more than conquerors through Him that loved us. For I am persuaded that neither death, nor life, nor angels, nor principalaties, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord. Romans 8:35;37-39

Evauation for a Gastric Tube

We saw a surgeon earlier in the week so AaronMatthew could be evaluated for a G Tube.

That is a Gastric Tube that would be surgically placed in his stomach so he could get nutrients.

The surgeon wanted to do a swallow study, which we did on Thursday. The results of that were good. He does not aspirate when he sucks a bottle. His tongue is just a little bit bigger than the average person. He has some difficulty coordinating a suck and swallow. And he has an aversion to sucking on a bottle because he hasn't been fed with a bottle much. Also, the thought is because he has had a Nasal Gastric Tube for so long, that it could be uncomfortable for him to swallow. He is most likely getting reflux from it as well.

The Occupational Therapist was at the study. She is hopeful that we can get him to suck a bottle and take his feeds. She believes he will benefit from a longer nipple. I have continuing appointments set up with Occupational Therapy.

Monday we have another study, this time on his stomach to make sure everything is in it's place and working correctly.

We also have a Special Educational teacher and another Occupational Therapist coming out from the school district once a week for 3 years for Early Childhood Intervention.

The Nasal Gastric Tube

I believe we hit a wall with AaronMatthew's Nasal Gastric tube.

The NG tube is the thing that is taped to his face. We were taught how to insert it. It goes in his nostril and down his throat into his belly.

As you can see, AaronMatthew's face is really red and irritated.
He has been pulling out his tube pretty regularly. When he does that, he will rip the tape off in the process along with a layer of skin. The tape will also start to peel off, as seen in the photos and I will need to replace it.

I tried a couple different adhesive removers like detachol and a adhesive remover pad from Medline. I find that those are harsh on his skin too and the best remover has been some organic coconut oil.

Also, we have tried many different kinds of tape. I have found that anything made from Covidien is not really sticky and is a complete waste of money. 3M adhesives work really well. We like Tegaderm. The unfortunate thing is when AaronMatthew takes it off himself.

We have tried taping his NG tube to his forehead. It looked funny, not to mention he pulled his tube out 3 times within 10 minutes.

We have had to wrap AaronMatthew snug in blankets when we feed him to restrain his hands.

The big bummer is that he has very poor muscle tone. Because of that, he has a poor suck and does not take a bottle well. We are working on that, but it is going to take a lot of time and patience.

We made an appointment to see a surgeon to put in a Gastric Tube at my request.
That would be permanent until removed. It will be surgically placed into his stomach.

Over the Hump

I took AaronMatthew to the cardiologist this morning.

We got the okay to discontinue a medicine that was used for his junctional heart rhythm. And we also got the okay to cut the diuretic dose in half. That is very promising as his heart that once had a huge hole in it and was causing him heart failure is now repaired and performing as a normal heart. Our next appointment is going to be spaced further out since we will need to see less and less of the cardiologist.

He is smiling a lot more these days. He even laughs at times. He is having a hard time sucking on a bottle. We will need to do some speech language and occupational therapy to help him along the way and to help to get him off the nasal gastric feeding tube.

He reaches for objects and grabs them.  He follows people with his eyes and turns his head. He cannot tolerate tummy time. When I flip him on his back from his tummy, he gasps and turns purple with shallow breathing. We will work on other things like strengthening  his core muscles before putting him back on his tummy.

The Revolving Door

I am so glad that hospitals are open all of the time! But I am not so glad that we have to use them a lot lately. We sure have had our use of them. I ask myself, "When are we not going to need them?"

If you think my life has been difficult from the previous posts, it just got turned up a notch!

In this post, I will tell you how the hospital has been a revolving door and our way of coping with it. This might be a longer post, but please stick with it and read all the way through it... I feel personally, that writing all of this down for all of you to read is a way for me to cope with what I have been, and are currently going through.

My husband and I moved to Detroit's Eastside over 2 years ago and have started a church. Since AaronMatthew has been born, we have held church services. We plan to start up again when the weather gets nice in our neighborhood park with BBQ's and a Bible study.

With that being said, it's only my husband and two boys that live in Detroit. We have had help from a couple of people that I have met and have become friend's with.

In mid December, I was having pain in my upper stomach. I grinned it and bared it for one night until 3 am rolling around in my bed in the fetal position. The next night, I had the same pain kick up around 7:30 pm after I ate a sandwich with mayo on it. My husband was concerned that I was having a gallbladder attack and that I might need emergency surgery. AaronMatthew was still in the hospital from his open-heart surgery.

I drove myself to the hospital and walked in hunched-back holding my upper stomach, moaning. I was checked in right away. And wouldn't you know, the pain went away right before the doctor came in! I told the doctor about my pain and he rolled up an ultrasound machine and saw two gallstones. He said, "Ma'am, you need surgery to get your gallbladder out." I said, "No! This is not happening right now I have a child in the ICU."

AaronMatthew wasn't doing well at that time and they were thinking about intubating him because of his breathing. Two surgeon's came to see me in the ER to discuss surgery. I told them I am not in pain and needed to hold off because of my baby. They warned me not to wait any longer than necessary because of complications that could arise. After that, I stuck to a very strict diet of no fat and nothing that contained any type or kind of oil. I don't recommend this as it is not healthy or good for your body or cellular structures. Desperate times call for desperate measures.

Over the course of that time, I scheduled surgery and I had to cancel it because it would have been two days after AaronMatthew was discharged from the hospital. AaronMatthew ended up with the flu about two weeks later and ended up in the hospital again for a week. And was discharged again.

I had surgery scheduled for the 12th of February. We were flying our middle daughter in to help us with the boys on the 10th. Well...

On the afternoon of January 30th I was looking forward to a long awaited nap, I was changing AaronMatthew and pulled his feet out of his outfit when I saw pale/purple feet. My husband told me to take him in the light and look at him. I did and saw purplish feet. He had been sounding like he was snoring while he was awake too. I got scared and drove him to the hospital. AaronMatthew's oxygen level was just fine. He was retracting a little harder than normal in his ribs (breathing hard), and the color in his feet had returned. He was monitored in the ER for a few hours and we were discharged.

That night, I could not sleep because... I was in pain. I tossed and turned all night in pain. I didn't think I had anything that would trigger a gallbladder attack, but I had been having dull pain for the past day and a half and it was just getting more intense as time went on. I was praying and almost in tears around 5 am. My husband rolled over in bed and I told him that I had been up all night in pain and couldn't sleep. We prayed together. He drove me to the hospital. We both knew they were going to keep me for surgery.

I was admitted into the hospital from the ER. My gallbladder was inflamed. My husband called Southwest Airlines and got our daughters' flight changed to the next morning. Then they cancelled her flight due to the weather. He rescheduled it, and it was cancelled again because of ice on the runways. During that time, AaronMatthew started throwing up. I was on the verge about checking myself out of the hospital to come home and watch our toddler while my husband would take AaronMatthew back to the hospital. There was a major snowstorm going on and a babysitter was not a good option at the time.

I didn't check myself out. I stayed. AaronMatthew was able to keep pedialyte down. Our daughter's flight was re-scheduled the day I had surgery. I awoke out of surgery super sick with vertigo and vomiting for 24 hours straight. As soon as I could get up and walk, I did. Whoozy and all. I walked circles around the nurses station and told them I had to go home to my husband, daughter and boys.

I came home and not even two days later... we were back in the ER with AaronMatthew. This time at the hospital he was born at. His doctor was back in town.

AaronMatthew still was sounding like he was snoring when he was awake. His respirations (breathing patterns) were fast and hard. He was breathing (we counted) 88 times a minute! He was hospitalized for four days in the ICU and was put on hi-flow oxygen, which I think helps him a lot. Unfortunately, we cannot take hi-flow home with us. We have a follow-up doctor's appointment today.

My weak moments when AaronMatthew is in the hospital are when he is getting poked with needles. For some reason, it is nearly impossible to get a needle in his vein. For that reason, there is much physical pain with my son and much emotional pain with me. I called my husband to cry on the phone with him, while they were trying to get a blood culture and IV started. He told me, "Could you imagine how God felt when He saw Jesus Christ on the cross?" I know that my child's pain is no where near as bad as what Jesus went through for all of mankind, but that does put things into perspective. My husband reminded me to have an eternal perspective and said that we are ministering to a multitude of people in the hospital from doctors to nurses to patients to family and friends of patients, to respiratory therapists, housekeepers, transportation specialists and the like. It helped to hear my husband have such a good attitude about this. We prayed and I got off the phone with him.  They were unsuccessful at getting a blood culture or an IV started.

My husband spent the nights in the hospital with AaronMatthew and most of the days as I was recovering from surgery and I began to feel fluish... again!

We were discharged again from the hospital.

I read this morning in the Bible a great word of encouragement in Romans Chapter 8. It's one of those times that when you read God's Word, (even though you may have read it a hundred times or so, it just really pops out at you and grabs your heart-- you read it and have tears). It says:

Who shall separate us from the love of Christ?

Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?

...

Yet in all these things we are more than conquerors through Him who loved us.

For I am persuaded that neither death nor life, 

nor angels nor principalities,

nor powers,

nor things present nor things to come,

nor height nor depth,

nor any other created thing,

shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Romans 8:35&37-39

So not only all of this has gone on in our lives, but our oldest daughter has been in the ER three times due to a severe allergic reaction and my sister is having narrowing of her right artery in her heart and she was hospitalized the same time I was in our hometown and is going to need another open-heart surgery.

So how do we cope? Through our relationship with Jesus Christ. In Him we live, in Him we breathe, in Him we have our peace.

I cried really hard the other day and all I could say is, "Jesus help! Jesus heal my baby!"

No where in the Bible does it say that the Lord will give you more than you can handle. When the passage refers to God helping you with the load you are bearing to stand up under it, it is referring to temptation. The other passage that I am thinking of is that His yoke is easy and His burden is light. How I interpret that is: HE HANDLES IT FOR ME, BECAUSE I CANNOT! All of this is way beyond me.

If I didn't know or trust the Lord, I wouldn't have hope. I wouldn't have life. I wouldn't have peace.

And we know that all things work together for good to those who love God, 

to those who are the called according to His purpose.

Romans 8:28

...for I have learned in whatever state I am, to be content:

I know how to be abased, and I know how to abound.

Everywhere and in all things I have learned both to be full and to be hungry,

both to abound and to suffer need. 

I can do all things through Christ who strengthens me.

Philippians 4:11-13

Be anxious for nothing, but in everything by prayer and supplication, 

with thanksgiving,

let your requests be made know to God;

and the peace of God,

which surpasses all understanding, 

will guard your hearts and minds though Christ Jesus.

Philippians 4:6-7

Set-backs are Bound to Happen--Making the Most of Every Opprutunity

I've been in-and-out of the hospital with AaronMatthew for about 5 months now.  I have seen tragedy. I have seen much loss.  I have seen much pain.  I have seen much heartache. But what troubles me the most is people that have no hope.

We ended up back in the hospital for a week because AaronMatthew got the flu and couldn't keep his feeds down.

It doesn't surprise me that these set-backs are bound to happen.

I prayed and was open to the Holy Spirit using us as He saw fit and took it as an opportunity to share my faith.

AaronMatthew is a "hard poke." When it comes to needles, blood draws and IV's, it is almost nearly impossible to get a needle positioned correctly in my son's vein. Because of that, he does go through extra pain.

I was out in the hallway talking to a doctor when Anesthesia was in his hospital room trying to get an IV started.  I had tears in my eyes and I asked the doctor, "How many pokes is too many pokes?"  I could hear my poor baby screaming from the room while I stand in the hallway. The doctor tried to console me by putting her hand on my shoulder and saying, "I am sorry." I knew he needed an IV. I looked at the doctor and realized she was really pregnant.  I said, "Oh you poor woman, you look really uncomfortable."  She said, "You know, it's just a part of life." On the seventh try, they finally got an IV in. The anesthesiologist came out and said, "It's in." I said twice, "Thank you Jesus! Thank you Jesus!" and "Thank you LORD!" Just then, the doctor said, "Would you please pray for me." I said, "Of course I will and I will continue to do so." She was Muslim.

I also talked to my son's night nurse about a relationship with God and how we have hope in Him. She was Muslim too. I was holding AaronMatthew at the time. She left the room and I looked into my son's eyes and I said, "AaronMatthew! Look! The doors we are getting into!" I prayed for her right then and there.

Also, a housekeeping lady came in to change the garbage.  I was talking to her about a horrific news story on t.v. at the time that was top news.  She explained to me that her brother just passed away a few days ago of a blood clot and that she had to pay a lot of money to fly his body back to Detroit and they would be having the funeral some time soon.  Before she left the room, I just started praying aloud for her.

I also ran into a woman who has another baby with Down's that is still really sick. I asked her if I could see and pray for her baby.  When I saw him it put things into perspective. I started to tear up.  I prayed for the child and I told her that when her child gets better, we will have to do some playdates.

I share this because I have hope.

It is my prayer that others would have the hope that I have in Christ Jesus too.

Romans 5: 1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Evicted from the Hospital ~Home Sweet Home~

Our day finally came, a long time in the waiting. A lot of tears and emotions leading up to this special date. We were going to be evicted from Children's Hospital of Michigan. It had been our residence for over 3 months! My little AaronMatthew was well enough to go home. I dreamt about this day and so desperately wanted my baby home and it was coming. We got to tearfully say, "goodbye" to all of the nurses, Cardiovascular Doctors and Critical Care doctors last Wednesday. AaronMatthew had been doing fabulous for the last week or so. His breathing was so much better, his color- he actually has color! His crying got stronger. It was our time.

We've been home for four days now and things are going smooth. AaronMatthew smiles a whole lot. He loves to be held and boy, we're making up for lost time. He sleeps through the night, which is great!

All this doesn't come without challenges. 

AaronMatthew is on 5 different medications for his heart, a diuretic and sodium chloride, which is a salt electrolyte. He is still on a gavage nasal gastric feeding tube and he is learning to drink out of a bottle. It is challenging for him and is taking him some time to master the technique of sucking the bottle. He does get tired frequently even though he is like a brand new baby and he still has his episodes of breathing hard and fast. 

We are on a strict schedule where he eats every 3 hours. It's 27 calorie formula and the volume is 105cc's. I measure and mix all of his formula and load it in the bottle and try to feed him by mouth and put the rest in a pump which then goes through a tube into his nose and down to his stomach. I also measure out all of his medications and put them through the tube as well. Who wants to taste nasty medicine anyways? I measure how much he takes through his bottle and record that and record how many times he has a wet and poopy diaper. I take his temperature at times and record that too. All that with a busy 2 year old bigger brother as well.

All this being said, he's not perfect, but so much better than he was before and right after his open heart surgery.

Then there is the endless doctors appointments.

We get to see his Pediatric Cardiologist at St John Hospital tomorrow morning for the first time in months. I know his doctor will be thrilled to see him as I have kept him updated weekly. We will be making appointments to see the Speech Therapist and Occupational Therapist. And we will go to an Endocrinologist and a Genetics Doctor as well. 

We have a nurse come out twice a week to see AaronMatthew.

For now, we are just sticking with the home nurse, Pediatric Cardiologist and maybe the Pediatrician until he is well enough to go on more outings. We aren't going to church, the grocery store or the convenience store for now. My husband and I are trading off. I am not risking my son catching some sort of virus, especially when it's flu season. We have been tenets at the hospital long enough. And I am going to need surgery in the very near future to get my gallbladder removed due to gall stones. 

How do I do it all? By the grace of God. That's how. He gives me His strength.

We are so very blessed to be home.