Brayden

Brayden's story...

I wanted to write about the life of Brayden so far so I didn't forget as time went on...

Brayden is definitely our miracle baby. We had talked about having another child but had decided to wait until Richard had had a chance to finish more of his schooling. Heavenly Father had other things in mind and I became pregnant. It was a hard pregnancy as there was a lot that was happening in our lives at that point. Richard lost his job, we lost our insurance, and in a few weeks time we moved to Divide so that Richard could work with his family there, and got renters in our home...I became sick.  I remember going to the low income doctor twice and being told that I have a virus and should feel better in about a week.  It wasn't until I went into preterm labor that it was discovered that I had pneumonia.  We lived in Divide for 4 weeks.  We moved back to Denver the weekend after the kids' spring break.

I remember that day well.  It was a Monday morning.  We had just moved in with my dad in the trailer park.  He and mom had just gotten their divorce finalized and mom had just moved all of her things when we found ourselves without housing and showed up on Dad's porch crying and emotional mostly because I wasn't sure what we were going to do but also being 30 weeks pregnant, hormonal and sick.  Richard got up that morning and got ready to leave as he had a job interview.  He forgot his cell phone at home.  I wasn't feeling good but was feeling better than I had in a long time so I got the kids up and let them stay in their pj's.  Sarah was running around in a diaper and that was it.  I decided to start working on the taxes as I knew that we only had 15 days to get it done.  The house was a mess as we just moved all of our things into it and still weren't sure where we were going to put it.  I started feeling contractions but thought nothing of it as Braxton hicks contractions are not uncommon to start feeling.  They progressively got worse and fast.  I remember the pain and being so scared as I couldn't get a hold of anyone... called Richard - discovered his phone was in the house, called my dad at work, called my mom, called my mother in law.  Finally in a panic, I asked Alexia to call 911. Alexia was 6 years old... just in kindergarten.   She was scared because she didn't understand what was going on.  I was in sweats and a t-shirt.  Hadn't showed in 2 days with the commotion of moving.  The ambulance showed up and it was a huge relief knowing that there was someone to help me.  I gave them my cell phone and told them who to try to reach.  They sent me in the ambulance and the police stayed with my children at the house until Vickie was reached and was able to get over there.  I remember them telling her that if she wasn’t able to come they would take the kids to social services to place them with a family until someone could be there to care for them.   I remember the ride to the hospital- scared, gripping the bar to the gurney wincing at every bounce.  I remember getting to the hospital and them telling me that they were going to have to do an emergency c-section as Brayden was breech, sitting on his feet and his foot was actually coming first.  They told me that they were going to do a spinal as fast as they could but if they ran out of time, they were going to knock me out.  I couldn't stop coughing... I felt so horrible.  Brayden was born and immediately taken to the NICU as he was 10 weeks early and not doing well.  I was immediately wheeled to isolation as someone thought that maybe I had TB because I had been sick for so long.  That was the worst experience.  Being in isolation, not having the chance to see my baby and them not letting me because they didn't know if I was contagious.  I was alone - I bawled when Richard finally showed up to the hospital. He missed everything and didn't know what was going on until he came back from his interview and his mom was there.   I hated being in isolation - the nurses did their best to help me and I even remember they called in one of their on call nurses to come to the hospital that night and her only job was to sit outside my door in case I needed something.  Brayden wasn't doing so well.  They decided to transport him to Children's hospital as he had some growth on his tongue that they needed to remove to make sure it wasn’t cancer.  So, not even 24 hours after he was born, they called Flight For Life Ambulance to come to transport Brayden.  I will always be grateful to the attendant on the ambulance as she found out about the situation and said that she wasn’t going to leave until I had a chance to see my son.  She brought Brayden to me - he was soo tiny, and hooked up to multiple machines keeping him alive.  I finally got to see my son.  Richard went to the hospital to be with Brayden.  I was alone again.  I was still coughing a lot and it was so bad with the c-section incision.  Day 2 they decided that they needed the room that I was in as they had turned a regular post partum room into an isolation room.  So I was moved to another floor in a back corner with nothing.....I threw up when they transported me.  I couldn’t handle the motion of the bed moving.   I was really alone.  The nurses came in only if they absolutely had to.  They were still waiting for the TB results even though the skin test was negative.  OH... and they kept sending me cream of wheat for breakfast.  I really am not a fan of cream of wheat.  I finally called the cafeteria and was told that that is what I ordered.  I found out that the nurses just picked something for me instead of having to gown up to come into the room to see what I wanted.  I told them to bring me another tray as I wasn't going to try to eat cream of wheat again.  Richard was stuck as he knew I needed him but he also was needed to be with Brayden at the hospital.  I didn’t have shoes, a brush or even a tooth brush as I left the house with nothing but the clothes I was wearing.  Dad and Vickie helped with the kids during this time.  Day 3 was a little better.  A nurse actually came in and spent several hours with me so I wasn't alone.  She also told me on the q and t that the computer in the room was connected to the internet and I could use it if I wanted to.  She was very kind and sometime that day we got the sputum results back that showed that I was TB negative.  I was finally able to leave the hospital on Day 4.  Richard brought me shoes :) and clothes so I could go to Children's to see Brayden.  Richard found a wheelchair that was big enough for me and pushed me around the hospital.  I was still coughing a lot and had to wear a mask.  They were going to do his surgery that day to remove the papalomas on his tongue and test them for cancer. We got there in time to talk to the surgeon.  No cancer...

We spent the next three months in the NICU.  We had some favorite nurses that would rotate out making sure Brayden was getting the care that he needed.  My favorite was Michael.  She was there often.  There was another nurse that had Brayden often but I can't remember her name now.  Dad was a huge help during this whole experience.  We would put the kids to bed then head out to the hospital about 8:00pm.  We would check in with the nurses and then would sleep overnight at the hospital so we could at least be there for a bit.  We would get up and head home getting home between 5:30 and 6:00 so Dad could go to work.  We did this every night except for two that I can think of.  One, we were just sooo exhausted I was soo worried about driving down to the hospital and the second, Richard dropped a 2 x 4 on his head and we ended up in the ER.  lol...  sorry, not funny but it kind of was.

During this time as well, the company that Richard was working for called him and said that it had been a mistake to let him go and that they needed him and asked him to return to work.  Richard went back as we really had no other option and it was better than being unemployed.  They reinstated all of his insurance and in the records made it look like he had a 4 week leave of absence so he could have his seniority and insurance.  We were blessed with income again.

We finally were able to go home.  Brayden was still not sucking on the bottle.  The doctors decided to send him home with an N-G Tube.  This is the feeding tube that goes through the nose into the stomach.  We had to be trained how to place the tube and they sent us home with the equipment to do so.  I was excited!  After 2 months we were finally all going to be home together.  Brayden was completely off oxygen.  He had been breathing on his own for a week and had been without support for the week.  I don't remember how much weight he gained, but he was still small and wearing preemie boy clothes.  I remember my mom going on a mission to help me find preemie boy clothes as we didn't have the income to buy new clothes.  I remember her going to the thrift stores and the 2nd hand baby stores and she bought us clothes for Brayden. She also sewed blankets.  We learned that the hospital always needed blankets in the NICU for the babies.  She would drop off a bag of blankets and we would take them to the hospital.  I remember one time we walked into B's room and we were soo excited to recognize the blanket on the top of his unit as being one that Mom had sewed.

We were home for 5 days.  It was Sunday; we were getting ready for church.  Dad went ahead to sacrament meeting as we were running a bit behind schedule getting out the door.  I got Brayden ready and put him in his car seat, buckled him and hurried to get things done.  He was in the living room on the floor in front of the couch.  I ran by him and looked at him.  Did a double check then hollered to Richard.  "Brayden is not breathing!"  Brayden had stopped breathing and was a scary bluish grey color.  I picked him up from his car seat and laid him on the floor of the living room.  He was so limp and lifeless.  Richard started CPR as I called 911. I was soo scared.  I was calm and the agent started asking questions.  Sometime between me calling and when the paramedics arrived, Brayden finally took a breath. I don't know how long Brayden had been without oxygen or how long Richard actually performed CPR.   We also somehow got a hold of Dad at church and told him what was going on.  I think that Dad had actually taken the other kids to church and we were going to meet him there.   I rode to the hospital with Brayden and Richard met us there.  They took him back to Children's Hospital in Denver.  We were on auto pilot still in shock from what had happened.  Somehow, the NICU heard that we were in the Emergency Room and Michael, who was on break, came down to find us.  We tried not to cry when we saw her walk into the room.  She gave us hugs and reassurance and then she had to return to work.  They decided that even though Brayden had been discharged from the NICU that they would return him there instead of sending him to the PICU.  I am glad that there was room as the PICU is not as nice for long stays for the family.

Then begins the tests, and more tests as they try to determine why Brayden stopped breathing.  We never would get a definitive answer - just possibly.  During the next month, several things happened.  We decided to have his G Tube put in his stomach as he was still not sucking.  We decided to have the Nissen surgery done to prevent him from refluxing as we discovered that 85% of his day he had heart burn and they didn't know if he has aspirated the acid and that is what caused him to stop breathing.  We also had signs that he wasn't developing as a "normal" infant was.  His eyes started to shake and so there were more tests.  We had a neurologist talk to us and he said... "I have a hunch.  I heard about this disability and would like to do an MRI."  We agreed and he was right.  We learned that his cerebellum in his brain was not formed correctly.  He was diagnosed with Joubert Syndrome and a visual impairment, but it wasn't until later that we had a "label" for his visual impairment.  It is LCA, Leber's Congenital Amaurosis.  Wow.  I had to look up the spelling again :)