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. 

My Story – Part 1

When people find out that my baby has Down Syndrome, I often get asked, “Did you know?”  The answer is no, not really.  I had gone for ultrasound just before Christmas.  We were so excited, we found out we were having another boy and everything looked good.  I remember looking at David and saying, “I can’t believe you couldn’t even give me one girl.”  We weren’t told of anything being wrong.  When I went for my next appointment in January I asked my doctor about the ultrasound.  I told her I didn’t hear anything negative so I’m assuming it’s all good.  She then informed me that there was a white spot on the baby’s heart.  I immediately began thinking the worst.  She told me that this spot is common and can be a marker for Down Syndrome.  She wasn’t that concerned though which is why she didn’t call us.  She sent us to a specialist for a level 2 ultrasound.  He said he had no concerns for Down Syndrome, but he did see a thickening of the wall of the heart and sent us to Children’s Hospital for an echo of my baby’s heart.  After spending an entire afternoon with two pediatric cardiologists, we were told that everything was fine with Patrick and they didn’t need to see us again.  What a relief!!!  I was able to completely put it out of my mind, until  delivery day.

What’s most interesting about my story is that in the midst of all of the worry because of the marker on the heart, I opened up to a group of moms at Ben’s preschool.  I didn’t know most of these women very well yet, but I was frazzled and needing to vent.  One of the other mothers, Kathleen, was also pregnant and she told me they found the same spot on her baby.  The difference was instead of the marker on the heart, her baby had the marker in her brain.  We were both on the same page.  Neither one of us was going to get an amnio because we would keep out babies regardless.  We both felt that with all of the other measurements being normal that we probably didn’t have too much to worry about.  A few months later the email came from Kathleen that her little girl, Emily, had been born.  I was so excited for her!!!  The next day came the email that Emily had some physical characteristics which warranted a chromosome test to determine whether or not she had Down Syndrome.  My heart broke.  I saw her at school the day after she found out the results.  Not only did little Emily have DS, but she also had a congenital heart defect and may have to undergo open heart surgery.  There were no words to say.  Do you say sorry??  She just had a beautiful baby so saying sorry didn’t seem to be appropriate.  I just told her that it was going to be okay.  I sent her some information for programs in our area and made her a dinner.  I had no idea what else to do.  I do remember feeling worried that when my baby was born healthy that Kathleen might be resentful of me.  I was worried she would look at me and my baby and wonder why couldn’t it be her instead of me.

Two weeks later, after a wonderful Easter weekend celebrating with my out of town family, I went into labor.  This was quite surprising because I have never gone into labor before.  All of my other four children were induced.  I had been having contractions all night long and thought something was up.  I called my doctor in the morning and was told to get to the hospital.  David had already left for work, so he had to come home and pick me up.  I was so anxious on the way there.  I was about to have my 5th baby.  I was so nervous I was shaking.  David asked me why I was so nervous right before we got there and all I could say was “What if he has Down Syndrome?”  David just looked at me and said “If he does, we’ll deal with it.”   I was so anxious during the entire labor that I was shaking.  I even asked my nurse for something to calm my nerves.  She just told me I was shaking because I was in labor.  I disagreed, that had never happened to me before.  Nevertheless, I got no help with the anxiety.  When Patrick was born and the doctor held him in front of me, I could see it.  I saw this thick fold on the back of his neck and his eyes were slightly almond shaped.  Other than that, he looked just like my other boys.  But I knew.  After the nurses kept asking David if he looked like my other boys, David knew something was wrong too.  My doctor told me that it warranted a chromosome test to determine whether or not Patrick had Down Syndrome.  I spent the next several hours looking at my baby and falling in love with him.  Both David and I tried to convince ourselves nothing was wrong.  The pediatrician came in and had the same concerns the nurses did.  He did tell us though that there was just a good a chance that PJ was totally normal.  We cried.  That night, around one in the morning, the nurse came in to take a rectal temperature of PJ since he hadn’t been able to maintain a good body temperature yet (another sign of DS.)  She couldn’t find a rectum.  David had already gone home and I was too tired to realize what that meant.  I was nursing him ten minutes later when the pediatrician came back in.  Patrick didn’t have an anus and therefore couldn’t poop or expel any gas.  This called for emergency surgery and he had already contacted Children’s Hospital for the transfer.  He told me that this probably meant he did most definitely have Down Syndrome.  David had already gone home for the night so I had to call him back in to follow our baby down to children’s.  When the transfer team arrived, they brought with them the incubator with every life saving device you could imagine.  I saw it and just broke down crying.  They took my baby from my arms and right before they left, one of the transfer nurses asked me if I got to at least take a picture of my baby.  She said it in such a way that she made me think I might not see him again.  I cried even harder. 

My doctor convinced me to stay in the hospital until the morning because she said that once PJ got to Children’s Hospital he would be taken immediately for tests and I wouldn’t be with him anyways.  She was right.  She released me first thing in the morning and my dad picked me up and drove me down to Children’s to be with my husband and my baby.  The entire drive down all I could think about was that I could handle Down Syndrome, what I couldn’t handle was the current health concern.  I was scared.  When I got to the hospital PJ had just gotten back from the tests.  He was hooked up to so many different monitors.  He had an IV and was on oxygen.  I can tell you this, it is absolutely terrifying to see your baby this way. 

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