My Story – Part 2

The first day at Children’s all I could think about was my friend Kathleen and her little Emily.  Emily had been born two weeks earlier with Down Syndrome.  So many thoughts went through my head but I knew for sure that God intended for Kathleen to be in my life.  I wasn’t able to talk on the phone without crying so I emailed Kathleen from Dave’s laptop.  It was a comfort to know that there was another mom out there and we would be going through this together.

The next few days at the hospital proved to be trying.  He was transferred in the early morning hours on Tuesday.  Wednesday morning he went in for his surgery.  We didn’t know beforehand if he could have a pull down of his colon and a hole cut to create his anus, or if he would need a colostomy.  I had people all over the world praying for Patrick.  While David and I sat in the waiting room with my parents, the genetic counselor walked in.  She told us that she had the results and wanted to speak with us.  David and I followed her into a room where she told us that Patrick did have Trisomy 21, or Down Syndrome.  We cried and cried.  We were both devastated.  My parents knew what the results were as soon as we walked out and they saw our faces.  They hugged us both and tried to be reassuring.

There were many thoughts that went through my head in that first few days.  I’m embarrassed to admit them.  One of my thoughts and worries was for my husband and my marriage.  We talked for two years about having another baby.  David’s biggest fear was having a baby with Down Syndrome.  We had already had four other healthy children and now we were older.  I was almost 39.  But I worked really hard to convince him that God wouldn’t do that to us.  I especially didn’t believe God would do that after he already gave us our son Joey who has special needs.  David finally agreed and we got pregnant.  I was so scared when we found out Patrick had DS that David would be angry or resentful of me.  I was so happy to have my baby, Down Syndrome or not, but I felt so sorry that for making Dave’s biggest fear come true.

Patrick’s doctor came out in the waiting room to tell us about the surgery.  He said that Patrick did awesome.  He also told us that his colon wasn’t long enough to pull through so he had to give him a colostomy.  This would require a different level or care when he got home and then two more surgeries in the future to reverse the colostomy.  We were brought back to see Patrick and we both cried some more.  The general anesthesia kept him sleeping for the rest of the day.  He was also on  morphine drip to help with the pain.  Forget breastfeed, this baby wasn’t waking up anytime soon.  That first night my mom and I sat by his bed used a qtip dipped in breast milk to moisten his lips and mouth which were so dry.  It took almost two days for him to wake up. 

I wasn’t allowed to sleep next to Patrick at night so each night David and I would go home and then return first thing in the morning.  His surgery was on a Wednesday and we were hoping to bring him home on Sunday.  Saturday morning I went into the hospital by myself.  The boys all had their first day of baseball and David decided to spend the day with the other boys since we hadn’t really seen them all week.  I got to the hospital and within minutes the neonatalogist was in the room.  She told me that the incision sight between his two stomas had gotten infected and opened up slightly.  He just bought himself more time in the hospital.  By the end of the day the incision had completely opened.  He had a hole right into his abdomen that poop was getting into.  He was already on antibiotics for an infection but they changed his IV to a PIC line.  We weren’t able to use the colostomy bags anymore.  I would hold him and every few minutes when poop came out it had to be suctioned before it would drip down into the incision.  We did this for 13 hours each day.  The nurse had it do it by herself during the night.  Each day I went into the hospital was scary.  I never knew when I showed up what I would be walking into.  One morning my mother came with me and the doctor explained to us that their biggest concerns were that he would develop a septsis infection or develop an embolism.  Both were terrifying.  But remember, Patrick had people all over the world praying for him.

There was one specific moment that stands out in my mind.  I remember being alone at the hospital and rocking PJ one morning.  I looked at him and felt so much love.  I started to pray and I told God that I accepted this gift and all of the responsibility that came with it.  I told Him that if He would only just heal my baby, then I could bring him home and raise him.  Against all odds, little Patrick received a miracle.  His infection cleared up.  Although he still had this huge hole in his abdomen, I was doing all of the wound care each day by myself.  The nurses felt strongly that he could go home and told me that if I was pushy enough I would be able to get him home sooner.  I went into the hospital on May 7 (my birthday.)  The surgical fellow was there and was telling me he thought we could talk about Patrick coming home within 2 to 3 days.  I told him “Yeah, I’m kind of thinking maybe tomorrow.”  He looked at me with surprise but I pulled the Mother’s Day card and then told him it was also my birthday.  The next morning when David and I went to the hospital the discharge papers were written and we brought our baby home.

The surgeon told us that it would take at least 2 months for Patrick’s wound to heal.  It took less than 2 weeks!!!!  Those first few weeks at home were all about wound care and trying to get him to nurse.  The surgeon told me that the poop from breast milk would be better for his wound than poop from formula would be.  I was pumping but desperately wanted to breast feed him.  I kept trying and trying and it finally worked.  Breast feeding babies with Down Syndrome is much more difficult than breast feeding other babies.  Patrick had trouble latching on.  Many babies with Down Syndrome can’t latch on because of an enlarged tongue.  The biggest problem though is that babies with Down Syndrome sleep much more than other babies.  As soon as Patrick would get latched, he’d fall asleep.  This is concerning because then he wasn’t gaining weight.  The lactation specialist tried to prepare me for accepting that he probably wouldn’t breast feed.  For all of those moms out there who really want to breast feed but are having problems, DON’T give up.  Within a few days of being home, Patrick was breast fed exclusively.  It took over a week for him to start to put weight on but he did finally gain weight.  After a few weeks of weight checks we didn’t need to go back anymore. 

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1 Comment (+add yours?)

  1. Susan Chrysler
    Aug 13, 2011 @ 08:53:16

    So proud of the wonderful mother you are, Lisa.

    Reply

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