Wednesday, August 31, 2011

Going Home

We were told on Friday 7/29/11 that we may be going home on Saturday. We tried to not get our hopes up but there was no use. Saturday morning, the team came in to make rounds and said that we were free to go! It was hard to believe we were finally taking our baby home over three weeks after he was born. Stephen went and packed up all of our things at the Remmington and came to pick me and Aaron up. The nurses were trying to stall us because they did not want us to go. Ha ha! Told you they loved us. Auntie Mo ran and got Aaron's prescriptions filled then we were ready to hit the road. Aaron was FINALLY going to Alabama!

T getting him dressed to go home:

Officially going home family photo:
In the car seat ready to go:
With the sign the nurses had made for his door:
Walking to the car:
In the car pulling out of the parking garage. Also, first time we had ever taken him outside:
Walking into the house!!!

Nonna and Pops were eagerly waiting to hold Aaron when we got home:

Cardiac Step Down

When they told us we would have to stay around the clock once he moved to the floor, we were so exicted. We would actually get to stay in the room and take care of our own baby for the first time. Do not think anyone understood how thrilled we were to just have a chance to change diapers, rock him and feed him. We really loved this time. Got to get used to taking care of him but with the guidance of some great nurses. Aaron was the favorite patient on the floor. They rarely get to have babies so little.

Daddy learning how to feed Aaron:
Cap came back from Shreveport as soon as he heard he could hold Aaron when he was on the floor:
Showing off our little peanut:
Both my boys fast asleep one morning after Aaron was up ALL night. He had his days and nights mixed up for a while. Don't think he even blinked that night. He was wide eyed and ready to party. Think he was scared he would miss a moment with us.
First time being in a real crib without any tube or oxygen:

While we were here he had several "firsts". Cap, T, Leigh and Auntie Mo got to hold him. We got to feed him a bottle. He also got to nurse. He even lost his umbilical cord. Mom was changing a diaper after a major blowout and it got caught up in the mess along with cords from his telemetry and came right off. I must say he has the cutest belly button ever!


Aaron was in the PICU through the weekend. He stayed on the ventilator. They tried one time on Saturday to take him off but he was not having it. He stayed on the CPAP for just a short time before they had to put him back on the ventilator. They let him rest until Monday morning when they pulled it again. This time we were at his bedside when they did it along with 10 other people waiting to see how he would handle it. He did great this time! Was just looking around trying to figure out what the big deal was.

I hate how pitiful he looks in this picture but love how it reminds me how far he has come:

Just moments after he was off the ventilator:

After hew was stable and not requiring any IV's or oxygen they moved him to the step down unit. They took him by wagon and he loved it.
Packed up and ready to go:
Daddy pulling him down the hall headed to our new room:

7/20/11 and 7/21/11

When we got to Jackson, we were ushered right into the NICU. It was so overwhelming. We went from a small NICU with 3 babies to one with 90!! It was so noisy and people were everywhere. We were taken to Aaron's warmer where a cardiologist was performing another echo. There was also an attending, resident, nurse and another doctor that I do not remember what her official title was. After the echo was complete, he told us that Aaron has a coarctation of his aorta that would need to be repaired with surgery. He said that the surgical team would meet in the morning and decide when that surgery would take place. We were not sure if that meant the next day or the next week or what. They then pulled up a laptop with images of a coarctation and a video that explained the whole defect. It was so helpful! Guess thats one of the advantages of being in a teaching hospital. After they answered all of our questions, we went out to the waiting room where our moms, Leigh, Morgan and the Clenndenings were waiting for us. We told them the news and pulled up the video again. Stephen did a great job explaining everything that we had learned. The nurse in me was no help. The mommy in me was shutting down. I could only sit there. We were told that Aaron was stable and well watched and that we needed to go get some sleep. We all headed out to the Remmington and crawled into bed sometime well after midnight. We were awakened to a call from a nurse saying the surgeon wanted to meet with us in the next hour. We jumped up and threw on some clothes and ran to the hospital. When were were almost there my dad text me to say that anesthesiology in to prep Aaron for surgery. Okay, so we were going to have surgery today. We called the rest of the group that was back at the Remmington and told them to head to the hospital soon. We went into the NICU and sat with Aaron. This was when I started crying. I just sat looking at him, not wanting for him to have to go through a major surgery but understanding I would never take home a healthy baby if he didn't. The cardiologist and surgeon came and spoke with us and our family and thoroughly explained the procedure. They said that Aaron would be taken back as soon as they finished with the case that was currently in the operating room. I have no idea what the timeline was of this day. It was a complete blur from the moment we woke up. Sometime around lunch the finished prepping Aaron. They let us walk with him to the pre-op area. But first that stopped and let our family see him. For most of them, it was the first time they had seen him not through the nursery window.
The surgery took a couple hours. They called us with an update once saying Aaron was asleep and the surgery was started. We were waiting for the next update call when I started pacing the hall. While I was pacing, the surgeon walked up. At first I panicked. "Wait, aren't you supposed to be in surgery with my CHILD?" Then I said, "Wait, you are smiling! That's good right!?" He said, "Yes, very good." We walked into the waiting room and he told us that the surgery was over and he was very pleased with how it had gone. Aaron was in recovery and would be transported to PICU soon.

The moment we knew it was all okay:

Amory NICU

Aaron stayed in the well baby nursery for about 4 hours. Right when they were about to let me see him, they decided he needed to go to the NICU to be watched more closely. They said he was working too hard to breath and would be put on some oxygen. Several doctors came in and out of our room updating us. It was the middle of the night, it was dark in our room and I was very medicated so I really do not remember the details. I do remember that they let Stephen go down to the NICU to see him and he took some photos so I could see him.

Already learning to pull his oxygen off:

I BEGGED and NAGGED the nurses to let me go. They said I had to get up and walk first. So 5:00 am, I got up and walked to the door and back. NEVER need to do that again. It was not fun. So, I said "I walked. Now can I go?" Well then they wanted to move me to a different room. Then they said it wasn't visiting hours and that did not start until noon. You have got to be kidding me? Everyone has seen my baby but me. I told Stephen it was extreemly unfair that I had deliver the baby and then be the only one not getting to see him. I guess my nagging paid off because they decided to sneak me in for a quick glance before shift change. He was in the warmer and I was in the wheelchair so I really just got to see and touch his feet. I asked about holding him and they looked at me like I was a crazy person. Hey, I had to ask?

First time getting to see Aaron besides the quick second on the operating table:
He stayed in the NICU at Amory from 7/8/11-7/20/11. We went from room air, to being on the nasal canula to being on the ventilator to off the ventilator then back on the ventilator. It was all a blur. They kept telling us that he would outgrow this and the cells in his lungs would just mature suddenly and he would be fine. He also had a feeding tube that was in his mouth that he loved to pull out alot. By the last week he was taking most of his feedings by bottle and seemed to be making progress.
Cap and T:
Nonna and Pops:
The usual way we could comfort him. He loved to hold our fingers. We could also stroke his head. That usually worked too:
The first time I got to hold him. The nurse needed to change the linens on his warmer and asked me to pick him up for a second. It was just the moment I needed:
He was under the bili lights for a couple days. This is when he got the nickname "Chetto":
Boodum- trying to get him to hurry and get better!
Our first family picture:
Snuggling in the middle of the night in the NICU:
Donna was Stephen's nurse when he was in the NICU 27 years ago. She also had Aaron for most day shifts:
Aaron looking at his Daddy with eyes that seemed to be begging him to make it all go away:
First diaper change. Not very easy when he's in the isolette:
After a little over two weeks of waiting for his cells to mature, they decided to do an echo just to make sure there was nothing causing the slow progression. We were at home the day they did the echo and they said they would call with the results. At 2:00pm I called and the nurse said the results were in but they had not been read yet. She said they would call me soon. I crawled into bed and tried to nap but could not. So I started looking up some verses to try to find comfort. The first one I read was Isaiah 55:8-9 "For my thoughts are not your thoughts, neither are your ways your ways, declares the Lord. For as the heavens are higher than the earth so are my ways higher than your ways and my thoughts higher than your thoughts." I knew in that moment that the results would not be what I wanted them to be. I just knew I needed to prepare myself. A few minutes later the nurse called to "confirm that this was our contact number". Again, I knew for sure this was not going to be good news. Dr. Kloor called a few minutes later and asked if someone was with me. My mom came in the room and I put him on speaker phone. He said that he had some news to share that I would not want to hear. He also said to remember "this is the same Aaron that you knew yesterday. We just know more about him now." The rest of the conversation is a blur. Basically they could tell that Aaron had some congenital defect in his heart or aorta and they were unsure what it was or how serious it was at this point. He suggested that Aaron be airlifted immediately to Jackson to UMC for evaluation by a pediatric cardiologist. He said someone would call me with details as soon as we knew more but the transport team was on their way to pick him up. I hung up and broke down for a minute. I tried to gather myself enough to talk and I called Stephen at work. I have no idea what I said. All I know is he was home within five minutes and we were throwing things into a suitcase. We jumped into the car and headed to Jackson in a horrible rain storm. It was a long quiet drive. No radio, no talking. Just quiet pondering. I remember begging God to please give us good news when we arrived. I also begged that if it was not good news, He would give me peace that passes all understanding because I knew I was not strong enough to handle whatever was waiting for us. I also remember praying that God would allow Stephen and I to act in a way that was pleasing to Him no matter what we found when we walked through the hospital doors.
Aaron ready to head to the chopper. Has his ear protection on:

Moved over to the transport teams equipment:

Leaving Amory:

The chopper that took Aaron for his first ride:

Saturday, August 20, 2011

Birth Story Part 2

So about 7:00 pm (I think. I was a little loopy by this point), Dr. Otey came in and said that I had not changed in several hours and Aaron continued to have decerlations at times with the contractions so we needed to do a c section. From that decision, tobeing wheeled into the the operating room felt like seconds but was really several minutes. I remember some of the c section but I was having some pain control issues so they kept giving more and more drugs (yea! Brian was there:0)). Aaron was born at 7:42pm and started screaming right away. They took him over to the warmer where a neonatolgist was waiting to assess him. The first glimpse I got of my sweet boy was his long skinny legs sticking out from around the doctor. I remember at this point telling Stephen, "That's our baby! We have a baby!" Then I started telling him to get over there and take hundreds of pictures! After they had a chance to check on him, Dr. Kloor brought him over to me for just a second before they took him to the nursery.

Aaron's first photo:
Aaron was thinking "Why did they take me out of there? I was so comfy!"

I wish I remembered more of this moment but I was sooooo sleepy from the medication that I was fighting to stay awake:
Our little man:

Everyone was waiting in the nursery window:

Dr. Otey coming out to tell everyone how it went:

Fist bump with Jim Blake:

Aaron stayed in the newborn nursery for about 4 hours. At that time they decided he was breathing a little too fast. His oxygen levels were fine but they did not like how hard he had to work for it. They decided to send him to the NICU.

Aaron's birthday stats:
4 lbs 8 oz
17 1/2 inches long
Born at 7:42 pm