We saw an ENT Doctor at the beginning of this month and he ordered a sleep study to be done on Isaac.  Isaac has narrow passages ways and can be quite the snorer.  His sleep study was scheduled for Tuesday, Sept. 23.  Isaac and I got to Children’s Hospital in Aurora around 7:00pm that evening.  Of course he was sleeping since it is about a 45 minute drive from our home.  The nurse had me get him ready for the night and then she started the process of connecting all the wires to monitor him through the night.
Here is a picture the room and then of him eating and calm before the nurse started putting on the wires!  And then the nurse started with the wires on his head!  Not so happy!

Oh, he was really upset by the time the nurse was almost done that he had worn himself out.  Here he is all wrapped up and then at the end with everything taken off.

He did well considering how mad he was to begin with.  They turned the lights off at 9:00pm and he woke up around 1:30am and then again at 5:15am.  The study is done at 6:00am, so we were able to have the nurse start taking wires off around 5:40am.  There was no point to let him sleep for 20 minutes and then wake him back up.  We left the hospital room around 6:20am.

The nurse told me that Isaac was keeping her entertained that night.  He would pull off the nasal cannula and she would come in the room to fix it.  She would stand by his side to make sure that he wouldn’t pull it off again.  After a minute or so of watching him sleep she would leave the room and go back to her station.  Well, as soon as he heard the door close he would pull the cannula back out.  She even stood behind the curtain one of the times she came back in and he still waited for her to leave before pulling out the cannula.  She finally just put a blanket over his arms so he couldn’t pull them up to his face.  He then would shake his head trying to get the cannula off.

I did get a call from the Nurse Practitioner about two hours after the study ended to let me know that Isaac’s oxygen levels dropped significantly while he was sleeping.  So, he will need to go back on oxygen while he sleeps.  This is a bit of a bummer, because at his 2 month appointment his oxygen was at 99% so we were able to take him off.  It was such a relief not to have to worry about keeping the cannula in or transporting oxygen everywhere with us.

Emmett showing off his hat and showing some love to Isaac when we got back home!

The kids came to the hospital with my parents on Sunday, June 15th, to meet Isaac!  Zane had spent time with the kids Saturday evening, as Kyla had her 9th Birthday Party that day.  He told them about Isaac and his physical differences.  He also told them that the most important thing for them to do was to give Isaac extra love!  The kids definitely still remember that, because boy do they love their little brother.

I don’t have pictures of their first visit with Isaac, because they went in one at a time with Zane.  I did ask Kyla to write a paragraph on what she remembered about that first visit.

Here is what she wrote:
“The fist time I saw Isaac, he was in the NICU.  Dad said that some of his bones in his head were stuck together, I started to cry because I felt bad for him.  I thought he looked chubby and cute.  Dad showed me that his fingers and toes were stuck together.  The best part about that first visit was being able to touch him.
My next visit, Isaac was in a bassinet and I didn’t recognize him in a picture.  I thought he looked a little different then all of us because he had a big forehead.  After I held him he looked really cute.
When Isaac came home from the hospital and I got to hold him and feed him he started to look really cute.
It’s like I’ve known him for my whole life, but I’ve known him for almost 2 months.  I also help Mom at home with Isaac.
I will always love him.”

When Barrett saw him, he kept asking if his own hands looked like Isaac’s when he was born.  And then there is Emmett, he just enjoyed touching him and rubbing his head.

These pictures are from the kids visit on June 21, this was when they were able to hold Isaac for the first time.

Well, technically I provided Isaac’s first home, and it was a very large one.

When your preterm baby is admitted to the NICU, they tell you to plan on your baby being there until their due date.  Isaac was in the NICU for 15 days.  I was expecting him to be in there longer, so it was great news to be able to take him home when we did.

What the heck is Apert Syndrome?  Apert Syndrome is a clinically distinct condition characterized by craniosynostosis, craniofacial abnormalities, and symmetric syndactyly of the digits.  It occurs about 1 in 65,000-births.  In our case, it was a sporadic genetic mutation.  In other words, the “plates” in the skull fuse too early, restricting brain growth, and can cause increased pressure in the brain as it grows.  Syndactyly means the joining of the fingers and toes.  Sometimes there can be complications with some of the internal organs with Apert Syndrome.  They did several tests on Isaac in the first few days and all of them came back normal.

The main reason for Isaac staying in the NICU was his respiratory distress.  On Saturday, after he was born he was placed under an oxyhood.  His oxygen levels kept needing to be increased, later that day he was placed on a High Flow Nasal Cannula, but did not have improvement.  So, when we went in on Sunday morning, he had been placed on CPAP.

All of our kids have sensitive skin, that is why he has a bit of a red rash all over his body in these pictures.

He still needed more help with his breathing, so Monday morning he was intubated.  They gave him a dose of Curosurf, which is a synthetic surfactant, to help him to breath while his lungs develop more and produce their own surfactant.  Surfactants are normally produced naturally in our lungs.  Surfactants are wetting agents that coat the surface of the air sacs in the lungs, aiding in the air sacs to expand and deflate without sticking together.  However, in Isaac’s case his body was not producing the sufficient amount of surfactants his lungs needed.

Seeing this sweet little boy in the Isolette, and not being able to hold him was heartbreaking.  But if this is what was needed to get him better and able to come home then I was ok with watching him or laying my hands on his back, or head.

Before I start on Isaac’s story I really want to express how thankful and blessed we are for all the support and prayers that we have received, all the meals, the visitors, those who helped with the kids, the emails and texts.  We have never felt so much love, and it means so much to us.  Thank You!

This pregnancy was different than my others.  I’ll write a post on this pregnancy and post some pictures.  The main difference was that I had Polyhydramnios, which is excessive amniotic fluid.  Let me just say that when I was 34 weeks I measured like I was 47 weeks, and it was so uncomfortable.

So come Friday, June 13, when I was 35 weeks along in this pregnancy and very very uncomfortable, I told Zane I should probably go to the store and get a few things so I could be more prepared if we needed to rush to the hospital early. Emmett came at 37 weeks, and I was not prepared at all. Not that you really need much in the hospital, mainly a good candy bar. Zane said he’d like to go to the Apple store and see about getting a new computer. Our computer has been down this year, and I hadn’t been able to download pictures. We went to the Apple store, where we bought a new computer, Yay! We then headed to Target. While walking into Target Zane received a phone call from a good friend inviting him to a 9:30 movie. He told him he had to get me through Target and he could go, it was probably close to 9:00pm at this point which doesn’t give me a lot of time in Target. I purchased what I needed, and we went home, and Zane went to the movies. I put the kids to bed and then put all the stuff I bought and other essentials, you know the candy bar, in a bag that I could take with us to the hospital. I had just washed baby clothes that I’ve stored from the boys, so I sat down on the couch to fold them and catchup on American Ninja Warrior. It was probably 11:00pm at this point. As I was folding clothes I heard a “Pop”, and it dawned on me what it was and I rushed to the bathroom. So many things were rushing through my head. I called Zane hoping his movie would be done, and he would be on his way home, but, of course, there was no answer. He left his phone charging in his truck because it was about to die. I was trying to stay calm and decide if I wake up my Dad and have him take me to the hospital.  I called Zane again and still no answer so I left a message.  It felt like forever, but it was probably a few minutes and Zane called telling me he was on his way. I finished putting clothes in my bag and made sure I had the camera ready. Zane was home in no time; he grabbed some clothes, and he woke up my parents to let them know what was going on. My Dad was able to give me a blessing before we left.

We were in Zane’s truck and backing out of the driveway, when I realized I should probably have a towel to sit on. Zane ran in the house and grabbed the biggest towel we have. Which was a good thing, because once we turned the first corner I had a huge gush of amniotic fluid. I had a handy app on my phone to keep track of my contractions which were about 2 minutes apart. We pulled up to the Emergency entrance at the hospital and Zane got out and grabbed a wheelchair. He wheeled me in and told them my water broke. They looked me up and called up to Labor & Delivery. Someone said they would be down shortly. As I waited, I kept having contractions, and my amniotic fluid gushed out with every one of them. I told the girl that she should probably call for clean up as there was a stream of fluid going across the hall. No one from Labor & Delivery was coming, so she called up again. A few moments passed by, but it felt like hours, and a young man had just come down from taking another Mom in Labor up to the floor. Since a nurse had not come he took me up to Labor & Delivery. Once up there a nurse was walking towards us saying she was just coming down to get me. She proceeded to tell the young man to wheel me into triage so she could check me, we all told her my water already broke. So off to a Labor & Delivery room we went.

By the time I was changed into a gown and monitors hooked up to me to monitor baby and contractions it was probably 12:30am. The nurse checked me, and I was at 3cm, which made me a bit relieved. I did not want to have a baby without my Doctor, and I really wanted an epidural. Doctor Gore, who is my OB, arrived close to 1:00am, I was so happy to see him. I progressed pretty quickly but was able to get an epidural. Our baby boy Isaac, who officially didn’t have a name until Sunday evening, didn’t like the contractions and with each one his heart rate dropped greatly. Doctor Gore put a monitor on Isaac’s head to monitor his heartbeat better, and they also gave me an oxygen mask which helped a lot. I was really starting to feel the pressure and the urge to push. Because I was 35 weeks the NICU Nurse Practitioner and another nurse from the NICU joined us in the room. It was just before 3am and time to push this little guy out! I was pushing when they told me to and I paused for a second and Doctor Gore told me to keep going he was almost there, and the nurse told him my contraction was over.  Oh the pressure was so strong.  Doctor Gore kept telling me to look at the reflection in his glasses and I could see his head. Yeah, I never saw it.  My next contraction came and I pushed him out. Doctor Gore was cleaning him off and all I could hear is him crying!  The Nurse Practitioner told Doctor Gore to put him on my belly before they would take him to the NICU.  As he raised him up onto my belly, I noticed his hands looked different and his face looked scrunched. The nurses put a hat on him and wrapped him with a blanket.  Zane hurried and grabbed the camera to take a few pictures, I gave Isaac a kiss, and then Zane was able to carry our sweet baby boy to the NICU.  I did hear the nurse say something about features of having a Chromosome disorder. I just put it out of my head at the time.

 As Doctor Gore did all the after birth stuff I tried to stay calm. When he was done he went to the NICU to check on Isaac. He came back in with the Nurse Practitioner, who asked me if Isaac looked like our other children and then explained to me that Isaac had features of a chromosome anomaly. I don’t remember much else that she told me, but I thought to myself, “Ok, not exactly what we expected but that’s ok, everything will be ok.” The only other thing I remember is Doctor Gore telling me, “the last thing we want to do is B.S. with you.”

I truly felt and kept thinking to myself that it would all be ok and then Zane came back from the NICU. He sat down and looked worried, which in turn made me think maybe everything is not ok. I asked him what he was thinking, and he just said that he was worried for Isaac. We talked a little bit and then both fell asleep.

The Neonatologist came in our room a few hours later to tell us that he had looked over Isaac, and his features look to be a disorder called Apert Syndrome.  He explained that Isaac had fusing of his fingers and toes and that he may have premature fusing of sutures in his skull.  He had already contacted Children’s Hospital to find out what tests or procedures needed to take place for Isaac. If he said more to us, I don’t really remember what it was. We had to wait in the Labor & Delivery room until someone left the Mom/Baby unit as they were full. So, we tried to get some rest before then. Early that afternoon I was moved to a Mom/Baby unit.

I did get to go see Isaac in the NICU.    That first time I went he was under an oxygen hood, and had the usual monitor leads on him.  Because he came quickly, he did not get a good squeeze to get all the amniotic fluid out of his system and also being preterm his lungs weren’t quite ready.  I was able to lay my hand on his back.  Luckily Zane had his phone and took a few pictures.

Kyla’s 9th Birthday Party was scheduled that afternoon at 5:00pm. We decided not to cancel it, as she was very excited and looking forward to it.  So, Zane left the hospital after 3:00pm for that.

As I was by myself at the hospital, I thought about looking this Syndrome up on my iPad and then thought against it as it would probably discourage me. I had some awesome nurses at the hospital and Sue was my nurse that day. We were talking after she came in to do vitals one time, and she asked me how I was doing. I told her fine and then Boom, the tears started to flow. I didn’t know what to think. She assured me that it was ok to cry and it didn’t matter when or where I did it, after all I just had a baby and not everything was going as we expected. Oh and cry I did, my eyes were so puffy by Sunday morning. Zane came back from the party later that evening and he looked at me wondering if I was ok, and I was.  After we had gone to the NICU again, we talked a bit about Isaac and what our future holds.

Barrett turned five at the end of January!  He wanted to go play Glow in the Dark Golf and eat at the Yard House (well maybe Zane and I wanted that last part)!  After school we waited for Zane to get home and then headed out to go play some mini golf and have dinner.  Emmett is not in any of the pictures while golfing because he was asleep.  Kyla got a hole in one on the 18th hole and was able to spin a wheel to pick a prize.  She landed on the Managers choice, and out of all the options all she wanted was a cheap plastic ring.  Kyla and Barrett played a bit of Air Hockey after we finished golfing.  The Yard House is right next to the mini golf place, so we headed over for dinner, it was a good choice Barrett made!