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Wednesday, May 23, 2012

Logan’s Story–Part 2

So where were we?  Logan went to the nursery, I went to my room … Fair warning that there may be a few tear educing moments in this post …

By about noon we were starting to get a little worried about Logan, but still just enjoyed the day.  We assumed they were waiting for our pediatrician to check him out as she was going to come over her lunch break.  We also knew there was a gaggle of nursing students in there so maybe they were all taking turns checking out his vitals.  Great to learn, bring my baby back to me please. 

We finally pestered a nurse to find out what the hold up was.  One of the nursery nurses came in to explain that they were waiting for our pediatrician.  One of the other nurses thought she heard a small heart murmur.  There seemed to be some confusion because not every nurse heard it and it hadn’t been heard on his initial exam right after birth so they were waiting for the doctor to come in, she was on her way and we would know more soon.

We didn’t want to worry our family so we kind of made up some excuses as to where he was and told them to go have lunch and come back later.  We kicked back, a bit concerned by now, but still happy enough to eat some lunch.  Jimmy John’s!  The first thing I wanted was a good old Beach Club. 9 months of not eating deli meat that hadn’t been microwaved makes you just crave a good deli sandwich sometimes!

One thing I will never forget about that day is our wonderful pediatrician walking into our room while we were eating lunch.  She came with a nurse and a textbook and had tears in her eyes.  I knew instantly that it wasn’t good news.  Andrew knew as well and just sat on the bed with me and squeezed my hand.  In those minutes that passed I didn’t really comprehend everything but she said that she did hear a hear a heart murmur and vaguely explained what that might mean.  She also took a deep breath and said, “There are also some signs that we feel that Logan may have Down Syndrome.”  I'm pretty sure in the 2 minutes she spoke to us the world stopped.  Just completely stopped.  Tears ran down my cheeks like a faucet and I hung on to Andrew like my life line. 

Nothing of course was certain.  They had already talked to the pediatric cardiologist and he had ordered an echo to see what was causing the murmur.  They had already sent lab work away to test for Down Syndrome, but it wouldn’t be back for days.  She said that he had slightly upturned eyes, a slight curve to his pinky finger, a slightly larger gap between his 1st and 2nd toes.  It was subtle, but combined with the presence of a heart defect, it was a possibility.  The good news of the conversation was that of all things – there seemed to be nothing wrong with his bowels!  The one thing that was the catalyst to labor wasn’t even a problem at all. 

We tried our best not to panic and just wanted to hold him.  We couldn’t take him out of the nursery and he was already hooked up to all sorts of machines monitoring his heart.  The nurses were all so fabulous and really encouraged us to cuddle skin to skin.  I sat on that hard as a rock chair and rocked my little baby and just cried, completely oblivious to how much physical pain I might be in. 



I remember just sitting there and staring.  Staring and rocking.  Rocking and staring and just silently crying.  he looked so perfect.  He looked like a perfect, tiny little baby.  I was trying to convince myself that it was all just a big mistake.  They would do the echo and realize that everything was fine. 

It was such a relief though to have some answers and to have him back in our arms.  He was so snuggly and wow, did he have hair!!  He had (and still does have) this fuzzy, poufy hair that just sticks straight up all over the place.  I loved it!  I kissed it and kissed it and held on as tightly as I could.  I wanted to protect him from everything and make it all go away. 


By this point our parents were back from lunch and we couldn’t really hide anything anymore.  We still only told them vague details – partially because we really didn’t know much more than that.  We told them they thought there may be something wrong with his heart and were running tests.  There was no mention of Down Syndrome to them.  Why?  We knew it would be hard.  DS wasn’t something that could be “fixed”.  A heart you can fix.  You can save someone with a heart defect.  Nothing would change if he had DS.  It is what it is. We knew that a diagnosis of DS in their generation meant someone who had a grim future and was institutionalized.    We were pretty sure that wasn’t what it means today, but one problem at a time right?

One of the most touching aspects of the day happened during all of the tests.  I was missing out on all of this bonding time with Logan.  All of those first moments where he learns my smell and my touch, lies on my chest listing to my heart beat with his.  One of the nurses came in with a small piece of flannel and told me to put it under my shirt.  He needed to bond with me and if I couldn’t spend my day cuddling away and chatting with visitors, he would cuddle with a piece of cloth that smelled like me.  It turns out that he had one with him too.  Every few hours we would switch.  We would always be together.  I could still be with him and be a comfort to him even as he was going through all of these tests.  It works both ways though too.  He was there to comfort me, because we both needed each other.  Are you crying?? I am, that’s for sure and I’ve been sitting with it for 2 months now!

I also wasn’t allowed to nurse him at all in case he needed heart surgery. Let me tell you, a breast pump while you are babyless is awful, especially when one of the nurses brings you photographs they had just taken of Logan to help stimulate your milk producing hormones. Stare at the pictures of your sick baby while you are hooked up to a cold machine yanking away at you. In theory it was supposed to help my milk come in, but all it really did was make me cry even more.

Around dinner time our pediatrician came back.  We left Logan with our parents in the nursery and went to another room to speak with her alone.  It wasn’t good news.  The details were very much a blur then, but she came to tell us that the echo confirmed that Logan had a heart defect.  He had 3 separate issues – a PDA, VSD and ASD. 

The most critical problem was the PDA – Patent Ductus Arteriosus.  In English??  Before babies are born they have a tiny blood vessel that connects the aorta to the pulmonary artery.  In most babies this closes off within minutes or hours of birth.  If it stays open the blood full of oxygen mixes with the blood void of oxygen and it causes stress on the heart.  Now they expected this to close at some point and not be a problem, however he had along with that a coarctation or narrowing of his aorta.  The location of this narrowing point was quite close to the PDA so they were afraid that as the PDA closed it may make the narrowing even more severe.  Major problem.

The other two problems?  Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD).  These were two small holes between the two lower and two upper chambers of the heart respectively.  Not an immediate problem, but could be in the future if they don’t close on their own.

OK, so now what?  Unfortunately we live in a smaller town and our hospital was not equipped for this type of scenario.  That meant that a flight team was on the way from St. Louis Children’s Hospital and would be there within an hour to transfer him to the NICU there.  He was not in an emergent need for care, but there was a chance that might change as his PDA started to close and he needed to be monitored carefully.

She also again mentioned the DS and how about 50% of babies born with DS also have these types of heart defects, but we didn’t really hear that part. Down Syndrome?  Whatever.  I don’t care. Put my baby's heart back together.  Make him whole.  Make sure he lives.

We were a hot mess by this point and were so incredibly thankful that our pediatrician offered to explain what was happening to our family, DS and all.  There were lots of shocked faces.  Tears.  A few questions.  Lots of hugs.  Our parents were all sitting in various chairs taking turns with Logan.  Andrew and I stood in the center and just clung to each other and cried.  And cried.  And cried even more. 

Over the next hour, I am still impressed at everything that happened.  My parents immediately said they were staying in town until we were back home, no questions asked.  Andrew’s parents were going to drive us to St. Louis after the plane took Logan – no ifs ands or buts.  By some miracle, even before all the drama started, I was in very little pain and my OB discharged me over the phone without ever seeing me again after I delivered.  Yep.  about 9 hours after I delivered a baby, just 12 hours after I arrived,  I was (thankfully) discharged.  Logan – I thank you for being a fast and easy delivery!

One thing I will never forget is that Andrew’s mom asked if our parish priest could come and pray with us.  At the time I thought, “Oh, how nice.  That would be lovely. The prayer of the sick.  He really needs this.  Let’s do it.”  But when Fr. Leo got there,  reality really sunk in.  Yes, he was there to pray for him and heal him, but he also came prepared to baptize him.  He came in with a solo cup of water and a sea shell and in the name of God, we baptized him.  It was at that moment that I thought I was going to lose it completely.  He was there to baptize him, just in case we didn’t have the opportunity to do so later.  Logan might die.  My perfect little boy that I had been dreaming about for months, might not make it and we were preparing him for eternal life if that was what God had planned on. 

It’s a moment you will never forget.  That sea shell will be with me forever.  I will never forget.

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Tuesday, May 22, 2012

Logan’s Story

So it’s been awhile since I updated things hey?  2 months to be exact!  Things with 2 little boys have been … well .. busy.  I finally have enough free time to sit down and blog a bit so it’s about time to share what has been an adventurous journey with our new little man.  Fair warning – this may be a multi post kind of story depending on how long I have before one of them wakes up from this blissful quiet time that both of them happen to be sleeping!

Mr. Logan Patrick and he came flying into our lives at 8:06 am on March 22, 2012.

He has an extra 21st chromosome, a few extra holes in his heart and he is absolutely wonderful and perfect.

Part of the reason I’ve been gone so long is that I wasn’t quite ready to share with the world the whole story.  When life gives you something other than what you expect you put on a happy face and push through, but as I am going through this journey I am finding strength in the words of others.  Strength in the truth.  I just finished reading Bloom, a story by Kelle Hampton that is similar to my own, and it makes my heart break to hear someone else utter the words that went through my head that at the time I never wanted to admit.  It is helping me to hear that I am not alone in thinking all of the crazy things that go through your head the minute someone mentions Down Syndrome to you. 

What I really want is to let everyone know that it’s OK.  We are OK.  You can ask us questions and we really do want you to ask us questions.  A lot of the fear we initially had was because we didn’t know a lot about Trisomy 21.  We don’t want pity.  We don’t want the quiet “oh did you hear …” whispers.  We went people to ask us how he’s doing and what his life is like.  Does he have limitations?  What will his life look like?  Can he still be an active kid? We want to educate those around us so that one day if they are sitting alone in the hospital without their new baby and their teary pediatrician starts talking and the only words you hear are “heart defect” and “Down Syndrome” you can be a little less scared.

So back up the truck, what happened exactly??

Everything moved into motion on Wednesday March 21, 2012.  I was just over 38 weeks pregnant and going in for my usual weekly appointment.  Thus far I had a rather uneventful pregnancy.  There was morning sickness for months on end, crazy heartburn, more than one emotional breakdown, and one obnoxious bout with the stomach flu that I wouldn’t have wished even on my worst enemy.  The norm.  My first ultrasound back in October showed a happy, healthy little boy.  Logan.  He was much spunkier than his older brother Jacob had been.  He like to hide out in my ribs and kick the same one over and over again.  By 38 weeks I was ready to get this show on the road.


I am a rather tall and slender woman, so it didn’t worry anyone that my belly was also rather small.  I had gained 37 pounds by this point so we were obviously growing.  At this appointment though my OB decided to send me in for a growth ultrasound since my belly was measuring particularly small.  It didn’t really phase me.  The same thing happened with Jake.  He liked to stay curled up in a little ball.  He came out at 38 weeks at 6 lb 13 oz.  A bit small, but still within a healthy range.

My OB thought that after the ultrasound we would either induce me the next morning if it looked like he was small and not getting the right nutrients from me or we we would try some other options for naturally inducing labor.  I was already over 3 cm dilated at that point and had been having contractions off and on for months so the time was near anyway.  What I didn’t expect was to be set for an induction for other reasons.

She sat us down and told us that there were some abnormalities to my ultrasound that had her concerned.  She said they saw bright spots on his bowel – an echogenic bowl.  A what?  She said it wasn’t anything to be too worried about.  Most likely it either was a blip in the ultrasound or meconium (poop) in his bowels.  On the off chance that it was neither of those scenarios it could also mean that he either had markers for cystic fibrosis or down syndrome.  We had a family history of neither of those things and our first ultrasound was crystal clear so we were going with the poop option.

Regardless of what it was she wanted to go ahead an induce me the following morning, just to be safe.  His size looked great and I was only 10 days away from my due date so we had nothing to lose.  She said she would let our pediatrician know what was going on but it wasn’t something that even needed to be looked at immediately.  She would come see him sooner rather than later, but it would be when she had a break.

We were nervous, but excited!  I got all sorts of crazy emotional.  Suddenly it was the last time I would cuddle with Jake and watch Sesame Street, just the two of us.  It was the last time we would go for a walk together.   Never again would I hang out with just my #1 little man, there would soon be two #1 little men.  I wanted time to stop just to cherish the snuggles as just a mommy to one.  Poor little guy had no idea what was going to be coming home in a few days time!

Knowing you are going to have a baby the next day is intense. You go through weeks of “Is it today?”, “Was that a contraction?” and all of a sudden you are just watching the clock, knowing that at 5 am you’ll be in the hospital and your OB thinks your baby will be here by noon. Noon, it had to be early in the day.  You see, Logan and I had a little chat and he knew that Marquette was playing in the Sweet 16 that night so Mommy and Daddy needed to be back into our room and coherent enough to watch basketball by 9 pm.  We even had his Marquette hat ready for game time.

We went about our day and finished last minute preparations.  We called family and friends to tell them the news, packed up the last of our things and got Jake ready to spend a few days with his grandparents.  We dropped him off for his slumber party and even had a quiet last night out together, just the two of us.  We had a wonderful dinner and even made it out for frozen custard with a friend.  We finally made it home and to bed by about 11 pm.  Time to get a good few hours of uninterrupted sleep that we knew would be our last for awhile – assuming we could fall asleep anyway!

Turns out I couldn’t.  I had been having contractions off and on all day, but what else was new?  This had been going on for weeks and I had just had an exam so of course that irritated things.  By the time I finally sat still to go to bed I started to notice that those contractions seemed to be lasting longer than usual, and wait … were they coming and going with regularity?  Sure enough.  When I stopped to try out my contraction timer app (yes there really is an app for everything!) they were about 8-10 minutes apart and lasting for a minute each. 

I spent the night on the couch at least resting and watching the clock tick closer to 5 am.  You see, my OB wasn’t on call and wouldn’t be in until 5 and I really wanted her to be there to deliver him.  My first experience in labor and delivery told me that once my water broke and my body got going it was going to happen, and it was going to happen fast. 4 am came around and I had all intentions of getting a shower in before we left for the hospital.  My contractions were still about 8-10 minutes apart, but were getting stronger … until I got off of the couch.  All of a sudden they were 3-5 minutes apart.


Yep, that’s me at about 4:30 am. Ready to rock and roll!

In a bit of a flustered rush we made it to the hospital at 5 and they were still 3-5 minutes apart.  Our friendly nurse was expecting a slow morning with an induction that would take hours … little did she know she had a girl in active labor who was already 5 cm dilated.  We got me all settled in and by 6:30 I had an epidural in place.  It didn’t knock out total feeling, but at least got rid of most of the contraction discomfort.  I have really low blood pressure in my natural state (at or below the 100/60 range) so the anesthesiologist thought it would be best to start me on a low dose and ramp up from there. 

Bad plan my friend.  See what she didn’t know is that by 7 am I would be at 7 cm and my OB would break my water and that by 8:06 am Logan would be here!  There was no time to ramp.  It all happened in such a blur.   My husband tells me that I was a bit hysterical at one point.  I’m pretty sure I was.  When they tell you that you’ll feel the urge to push, what the really mean is that your body will start pushing and you are completely powerless to stop it.  I could still feel quite a bit of what was going on down there and really thought I was going to rip in half and it freaks you out a bit.    I remember my OB literally running through the door, sliding onto a chair and a push and a half later Logan Patrick came out screaming!

Everything was perfect in the world.   I remember holding him in my arms and crying because it was so perfect.  He looked so similar to Jake, but so very different.  They were nearly identical in size.  6 lb 14 oz, 20 1/4 in.   We cuddled and cuddled until they took him away to wrap him up.  He had great Apgar scores and life was just golden.  They said that our pediatrician would be in over her lunch break to check him out and make sure those pesky bowel spots were nothing to worry about.


We cuddled for over an hour, until my mother in law came over with Jacob.  He wasn’t too interested in meeting his little brother and he was a bit scared of me still hooked up to all of the monitors, but it was so fabulous to see him.  My parents were due to be there around 10:30.  They happened to get there right as I was going to be transferred to my regular room.  They placed Logan in my arms and off we went with a small stop to drop him off at the nursery.  I love that walk through the halls.  They play a lullaby for the entire hospital to hear and everyone stops what they are doing to congratulate you and smile.  The nurse assured me that they would have him back to me within an hour, they just wanted to give him his first bath and give him a closer check to make sure everything was OK.

I got all settled into my room and enjoyed my first presents and hugs from my family.  Little did we know what was happening in the nursery at that point.  You see, 30 minutes turned into an hour … and one hour turned into two and we still had no idea where our baby was.

I hate to leave you hanging, but there will be more coming and I’ll tell you right now that as of today there is a happy ending coming.  Logan is 2 months old today!  Stay tuned!!

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