Butterfly Show and Happy Father's Day

The other day Caleb and I went to the butterfly show at the conservatory with another heart mom and her two girls.  We had a great time.  Caleb loved seeing the butterflies and waving at the girls.  Now that he is getting older and is awake more I am trying to set up some playdates for his sake and for mine.  It was good to get out during the day and talk with another mom.  I love being home with my son but sometimes the house seems quiet with just the sound of my own voice :)

Today is Father's Day. I am so thankful for my dad as well as my husband who is a great dad.  My husband got thrown into fatherhood full force when our son was born.  Since I had a c-section and wasn't able to leave the hospital for a couple days, Aaron was the one who had to be at the Children's Hospital non stop.  He had to be there to watch the painful procedures and wait by Caleb's bedside.  He had to leave his wife in one hospital and go with his son to another. I couldn't have gotten through those first few days with out knowing that my husband was there when I couldn't be.  Caleb and I are so blessed to have him.  Happy Father's Day Aaron!  I love you!

Don't Make Me Eat My Words

Yesterday I was talking with another heart mom and we mentioned how after your kid has open heart surgery, things like getting tubes in their ears seems like no big deal.  When I said that, I was not wishing it upon my son.  However, I took him to the doctor today and his right ear is infected again.  This is the second one in a month.  In April I took him to the audiologist for a routine hearing screening.  They found fluid in his right ear that was causing a conductive hearing loss.  They told us to come back in 3 months to see if the fluid is gone.  But since then he's had these two ear infections and the fluid is still in his right ear, the doctor said today that when we see the audiologist in July they will probably recomend tubes.  Compared to heart surgery, tubes really aren't that big of a deal and if he is going to continue to get ear infections, I would rather him have tubes than constantly be taking antibiotics.  But it still stinks.

Also, I mentioned to the doctor that recently I've noticed him getting sweaty easily when he plays and that while he's playing sometimes he will lay down and take a short break.  The doctor said his lungs seem clear and that the gradient of stenosis he has in his pulmonary artery should not be causing symptoms.  He said he's not a cardiologist but that the murmur, caused by the pulmonary stenosis, sounds the same to him now as it did before.  It would be very surprising if it had worsened in the two months since we saw cardiology.  So that was good news but just something we'll keep an eye on.

An exciting thing that has happened is we are going to have the opportunity to travel to New Orleans soon to attend the Mended Little Heart's conference.  MLH just started up a group in our area, but the leader is not able to attend the conference and was looking for someone to attend in her place.  They will cover the cost of my trip and my mom was generous enough to give us miles for Aaron's plane ticket.  We are going to stay in the hotel one extra night and make a little trip out of it.   We have been so fortunate with travel this year.  We are looking forward to getting away and networking with other parents who have children with CHD's.

A Heart Mom's Mom

Untill recently, I never thought about how hard it was on my mom when Caleb was born and in the hospital.  I heard her mention the other day that there was a time where all she could do for her daugher (me) was pray.  Then it hit me, while I was dealing with my baby being sick, she was dealing with her grandson being sick and her daughter being scared.  I'm sure she was scared for her grandson, but her heart also broke for her daughter. 

But of course she doesn't give herself enough credit.  She was there for me and prayed for me, but she has also done so much more.  After Caleb was transfered to Children's Hospital and my husband was with our son, my mom spent the night at the hospital for two nights with me.  Then after I was released but could not drive, she drove me back and forth from the hospital to see my son and took me home with her each evening.  She made sure I ate regular meals and took care of myself so I could take care of my baby when he came home.  She washed pump parts and bottles countless times.  Since there was a two visitor policy, she sat patiently in the waiting room while my husband and I hovered over my son's hospital bed.  When I needed a break, she gladly sat with her grandson.

After my son came home from the hospital, Mom would come over each day for a couple weeks to bring me food and help out where needed.  She drove us to several follow up appointments and gave me the moral support I needed to get through those first few weeks.  She encouraged me when breastfeeding seemed too difficult.  She kept me calm.

In the heart community there is much talk about Heart Mom's and Dad's and Heart Warriors.  All of them deserve the praise.  But I am starting to think some of the real hero's are the behind the scene grandparents.  As I learned to be a mom to my son, I am so grateful that I had my mother there to be a mom to me.

How I became a Heart Mom

On March 8, 2010 I headed to the hospital to be induced with my first child.  I had a very uneventful pregnancy and besides the fact that my son was a week overdue everything seemed to be perfect.  I had a very elaborate birth plan that included avoiding an epidural an breastfeeding within a few minutes after delivery.  Those plans quickly went out the window.  As I started to have intense contractions, the baby's heart rate started to drop.  A couple times the nurses were able to move me around and get things under control, but my Ob warned me that if this kept happening I would need a C-section and if I didn't have an epidural then I would have to be put to sleep.  So in order to be awake for the delivery of my son I opted to go ahead and get the epidural.  It ended up not being as bad as I had imagined. 

 I'm glad I got the epidural because sure enough my son's heart rate started dropping again and this time it wouldn't stabilize.  The doctor stood there while the nurses tried several times to adjust me and then said, "It’s time, let's go".  The next few moments are quite a blur.  The doctors and nurses quickly suited up and got my husband into a bunny suit.  Then they RAN down the hall towards the operating room.  All the while I was crying.  I had not wanted a C-section and I was so scared.  What seemed like moments later I heard a cry that was not my own.  My beautiful precious boy had entered the world.

At this point my cries became those of joy as my husband snapped picture after picture.  We were so excited.  However it soon became apparent that something was wrong.  I kept asking if I could see him and the nurses kept saying, "We need to pink him up a little bit."  I know now that my son had a bluish tint to his skin and his O2 sats were only in the 60's.  Finally the nurse brought my son over near me to weigh him and I got my first glimpse of this sweet little boy.  Then they informed us that they needed to move him to the special care nursery.  My husband glanced at me and I nodded for him to go with our son. 

I spent the next hour in the operating room waiting for the results of an x-ray.  Because it was an emergency C-section, they hadn't had time to count the instruments before so they had to x-ray to make sure nothing was left inside of me.  The whole time I was back there and while I was in the recovery room, I couldn't stop crying.  I didn't exactly know why I was crying, I was just overwhelmed by the whole experience and worried for what was going on with my baby.  The nurses tried to comfort me by saying sometimes C-section babies just don't get all the fluid out of their lungs. 

After I was in the recovery room, the doctor and my husband came in to tell me what was going on.  The doctor said that something was wrong with my son and it was either and infection, his lungs, or his heart.  But he said he didn't think it was an infection.  The doctor left and my husband and I clung to each other and cried.

An hour later my son was transferred to the local Children's Hospital.  They wheeled him into my room so I could see him and touch his hands and feet before he left.  The doctors on the transport team told me that they had narrowed down the problem to his heart and that he would need open heart surgery.  The whole time they were talking I just wanted to say, "Please stop talking, I just want to look at my son".  I wanted to soak up every second he was with me. I wanted to study his every feature.  The future at this point seemed so uncertain and I felt so helpless. 

My husband went with my son and my mom stayed with me.  I count it as a blessing that by this point I was exhausted.  I nodded in and out of sleep till I received a call from my husband around midnight.  Once at the hospital they had diagnosed my son with Transposition of the Great Arteries.  A condition where his pulmonary artery and aorta were connected to the wrong chamber of his heart and his body was not pumping oxygen rich blood to his body.  We knew later that week he would have a surgery to "correct" this condition. 

Still as I write this I am filled with so many emotions.  It's one of those things you think will never happen to you.  While I was pregnant I think I skipped the chapters in books about having a child with special needs.  But it did happen to me.  My son was born with a heart condition and my journey as a "Heart Mom" began.