Sunday, September 29, 2013

OK, and if you needed proof that this kid is super cute, here are a couple of pics:

Wesley's Birth Story

It's been a long time coming (15 1/2 months), but here is the story of our little Wesman's birth. 

As many of you know, Vivian was 1 week late when she was born, so imagine my surprise when I awoke on June 13, 2012 at about 5:30 a.m. with some serious pains.  I wasn't due until July 5 and I thought maybe I was having Braxton-Hicks contractions.  I called the after hours line at my doctor's office and the OB on call got back to me.  I told her the amount of time between contractions and she assured me that they were B-H and that I would probably have them for the next 3 weeks.  After hanging up, I told Daniel that if I had contractions like this for 3 weeks, I was going to die.  I finally decided the doctor on call had no idea what she was talking about and that I needed to go in.  We called my Doula and let her know to meet us at the hospital.  By this time, my OB's office was open and I called to let them know we were coming in, too.  Thankfully I had packed my bags a couple of days earlier!  Of course, my parents weren't in town yet, so we had to drop Vivian at my aunt's house.  Thankfully she was home and was able to watch her!  Whew!

We got to the hospital, got checked in and I got settled in my hospital bed.  Thankfully, I made it to the hospital without throwing up this time.  ;)  The nurse came in and checked me and said I was already 5 cm dilated!  I guess it was a good thing I listened to my body and not the on-call doctor!  Of course, I had to go into labor on a day that my OB wasn't in the office.  I was bummed that she wouldn't be delivering this baby, either.  After the checks and the fetal heart monitor being hooked up, I was able to get into the tub in the room to labor.  Aaaaaah.  So, my Doula, my husband and I just sat around by the tub chatting and doing yoga breathing through contractions.

I should mention that the Euro Cup was going on during this time and Germany was playing Netherlands that day.  Daniel was really concerned that he was going to miss the game because of the baby.  ;) 

I got a nice surprise when my OB showed up.  She decided to come in on her day off to deliver Wesley because "she wanted to deliver at least one of my babies."  It made things easier knowing that she was going to be there for the delivery.

After laboring for a couple of hours in the tub, I needed to use the restroom and decided they should check me before I got back into the tub.  This time around, I dried off and got back into a gown before they checked me.  I was 8 cm dilated, so I decided to stay in the bed because the tubs aren't made for giving birth there.  I also started feeling nauseous around this time so they gave me a couple of Tums to settle my stomach.  I asked for a barf bag, too, and good thing because those Tums ended up coming up about 15 minutes later.  So, I was 2 for 2 on puking during labor.  Sweet.

The nurse came in and checked me again and said I was a 9, but that I couldn't push yet because I wasn't fully dilated.  I was talking through all of this, so I guess they thought I wasn't really in transition.  The nurse then left the room.  A couple of minutes later, I looked at Daniel and the Doula and said that I had to push.  There was no stopping it.  My Doula ran out of the room to find my OB and I pushed.  Everyone got back into the room and I knew Wesley was well on his way.  Somehow he got stuck on a nerve, though, so it was so painful to get my left leg up when pushing.  I pushed a couple of times and didn't get anywhere.  I finally adjusted my position and in a couple of more pushes, he was out!  He cried and I got to hold him.  He was beautiful.  He looked just like his sister when she was born and had her little ski-jump nose.  He was 6 lb., 6 oz., 18" long, and made it out at 12:42 p.m. in plenty of time for the Germany game. 

Because I was 36 weeks, 6 days gestation when I went into labor, a NICU team had to be in the room.  They did a preliminary check and checked his Apgar (he got an 8 and a 9) and then gave him back to me to nurse.  He latched on well and did a great job getting some initial colostrum.  We took pictures and snuggled.

After nursing, the NICU team came back in and took Wesley.  A neonatologist came in and said that a nurse had heard a heart murmur and that they needed to check his heart.  She also asked if we noticed that he seemed a little "floppy" and that his eyes slanted up.  We didn't notice either of those things.  She said those were markers for Down syndrome and that they were going to have to draw some blood to test him for Ds.  She wasn't 100% positive that he had it, because he didn't have a lot of the other soft markers, so we'd just have to wait for the bloodwork to come back.

Of course, I was in shock.  My baby had been taken away for testing and I was in a fog.  The Lactation Consultant at the hospital came and showed me how to pump with the hospital pump so that Wesley could get my milk, even while in the NICU.  She said he was jaundiced and that the doctors wanted to supplement him until my milk came in.  She said that our hospital had the option of donated breast milk and I said that I absolutely wanted him to receive the donated milk.  He was the first late-term preemie in the hospital to receive donated breastmilk! 

I went up to see Wesley as soon as I could.  He had an NG tube in his nose and was hooked up to a bunch of monitors.  Since he was jaundiced, they also had bili lights over him for a good part of the day, which meant he got to wear these little foam sunglasses.  I was pumping every three hours and would take my little bits of milk up for him to get through his NG tube.  The nurses were trying to bottle feed him but said he would get choked on the milk.  Finally, I said that I wanted him to nurse before I pumped.  I was only able to breastfeed Vivian for 4 months and I was determined to breastfeed Wesley.

I feel like the NICU was a neverending nightmare.  We would have one doctor come in and say that they thought Wesley had Ds.  And then another would come in and say that he didn't.  I was on a constant emotional roller coaster.  Finally, on Saturday evening, as I was in the NICU room all by myself, a doctor that I'd never seen came in and bluntly said, "We have news.  Wesley has Down syndrome.  Now, this doesn't change anything about him and he's still the same baby as he was when I walked in here."  I was stunned.  I had convinced myself that he didn't have Ds and here I was, all alone, being dealt this HUGE life-changing blow about my child.  I started sobbing.  My NICU nurse was so awesome and hugged me and told me all she knew about Ds and families that she knew with Ds.  I then had to call Daniel and tell him ON THE PHONE about Wesley.  :(  I asked him to come to the hospital as soon as he could.  And then I called my sister.  She's a Child Life Specialist and works with kids with Ds all the time.  She was heartbroken that I received the news without anyone else in the room with me.  But she said, "Aim, I loved him anyway, but I love him 500 times more now that I know he has Down syndrome."  Of course, I didn't understand.  I didn't know anyone with Ds.  I had never been around anyone with Ds.  All I knew of it was Corky from "Life Goes On" and Becky from "Glee."  I received a packet of information about Down syndrome from the hospital and Down Syndrome Indiana.  I couldn't read it, though.  I started researching online because, somehow, it was a little less real when it was on a website v. a book I had received about my child.

There was a nurse named Deb Tibbs who said that she knew some families who had kids with Ds and asked if it was OK to pass along my contact info.  She said they were great people and would be great resources for me.  I told her that was fine.

After the initial shock, I looked at Wesley and thought, "He's still my baby, I love him, and I'm still going to breastfeed him and he is going to do things that people say he can't."  This was mostly directed at the Neonatologists who, as soon as they found out Wesley had Down syndrome, were telling me all the things that he wouldn't or probably wouldn't be able to do. 

I was having a hard time splitting time between Wesley and Vivian.  My little 21-month-old didn't understand why Mama was gone so much and it broke my heart to leave her or Wesley for too long.  I was in tears (again) one day and our very compassionate NICU nurse said I should spend my daytime hours with Vivian and then come back after dinner or once she was in bed and sleep in the hospital and do nighttime feeds and snuggles with Wesley.  She was right.  Both of my kids needed me and I needed to spend time with Vivian when she was up because she knew I was not there.

I continued to pump every three hours (oh, how I loathed the pump) and then wake every three hours in the hospital to feed Wesley and pump after.  Because of his low tone, he could only feed for 20-30 minutes and wouldn't empty my breasts, but he was feeding.  And he was getting stronger and better at getting his fill every day.

Finally, we were told we could be discharged.  Wesley still had to pass his car seat test, but we were hopeful we would finally be out of the NICU.  The day we were supposed to leave, the Neonatologist on duty  said Wesley had a decel the night before and that we couldn't leave that day.  I was furious because I was sleeping at the hospital and no one had said anything to me.  I asked when it had happened and what exactly happened.  Later, the Neonatologist came in and said he couldn't find anything about the decel in the paperwork.  To this day, I'm convinced it didn't happen and that he had Wesley mixed up with someone else. 

The doctor also said we couldn't be discharged without learning how to place an NG tube.  I said that Wesley was breastfeeding and that I was not going home with an NG tube.  The doctor (FOR REAL) looked at me and said, "He has Down syndrome.  He can't breastfeed."  Thank God for my nurse who was there and who said that Wesley was breastfeeding and that he could do it.  She called the Lactation Consultant who came up with her scale and weighed Wesley before breastfeeding.  She watched him latch and watched part of the feed.  Once he was done, she weighed him and he had taken 3 oz. off of one breast.  She went out in the hall and did a dance and said it was a picture-perfect breastfeeding session and that he absolutely was breastfeeding and getting milk.  The Neonatologist came in and said he would discharge us if Wesley passed the car seat test, but that he really didn't want to discharge us without an NG tube because he was certain that Wesley would be back in the NICU or PICU in a few weeks because he really couldn't breastfeed.  (This only made me MORE determined to breastfeed him.  If you want to get me to do something, tell me it can't be done!)  Thankfully, Wesley passed his car seat test and slept through most of it and we were discharged with a portable bili blanket to get his jaundice down.

The following weeks were filled with doctor's appointments and blood tests to make sure his bilirubin levels were going down and that he was gaining weight.  It wasn't easy, but he was home and that was what mattered most to us.

I am so thankful for our NICU nurses and the Lactation Consultants at the hospital.  They were such strong advocates for Wesley and for me.  I don't know if I would have been so confident in my breastfeeding and my abilities as a mom of a child with special needs if it wasn't for these ladies.  I would also like to report that Wesley breastfed for 13 months!  Please don't let any doctor tell you that your child cannot do something just because of a diagnosis.  Your child is a person with unique abilities, not simply their diagnosis.

I wish I could say that I immediately was at peace with the Ds diagnosis.  I wasn't.  I struggled.  I felt guilty because I thought it was my fault because of my age when I had Wesley.  I mourned the life that I thought we (and he) would have.  I was angry that so many of our dreams for him were taken away.  One by one, I went through what I thought would be his future plans and I dismissed each one.  I let go of my dreams that he might be a basketball or soccer star, what his girlfriends would be like, if he'd be popular in school, which college he would go to, who he would marry, how many kids he'd have, etc.  I thought he'd be resigned to living with us for the rest of his life and thought about how we'd care for him.  I wondered if he'd even walk, talk, be able to be part of a "normal" school or have a "normal" life. 

And then something beautiful happened.  I met people who have children with Ds.  These children all have different abilities, but they were sitting, crawling, walking, signing, talking, playing and just being kids.  Their siblings loved them and fought with them as any other siblings would.  Life wasn't easy with extra doctor's appointments, therapies, and health concerns, but their lives were full.  I learned that early intervention was helping greatly with motor skills and speech.  I learned that inclusion is heavily pushed in schools and that our school district does a terrific job with inclusion.  I didn't really understand when people said that the milestones would be sweeter when Wesley hit them, but oh, do I understand that now.  With Vivian, I naturally assumed she would hit her milestones.  And she did.  Most of Wesley's milestones have been hit through therapy and hard work on his part.  Believe me - we yell and clap and happy dance with each milestone that he hits.

It's a stereotype that people with Down syndrome are always happy.  Wesley is not - he gets mad and frustrated like anyone else.  He can cry and make really sad faces with the best of them.  But there's something about him.  People LOVE Wesley.  He brings joy to so many around him.  It might be because of his awesome hair, people do love that about him, but it's something else.  He can make people stop and smile.  I am amazed that even his rough-and-tumble sister has developed a gentle, caring spirit toward her brother.  Well, maybe not when he's stealing her toys, but most of the time.  ;) We are part of an amazing extended family of people all over the world who have been blessed by Down syndrome.  God knew exactly what he was doing when he gave Wesley to us.  I look at Wesley and the wonder he has as he takes in his world and I think this is what it must be like to have child-like faith.             

Obviously we are still in the early stages of this journey compared to others, but I keep coming back to the word "blessed."  Life is a blessing.  Life with Wesley is a blessing.  Seeing my children together is a blessing.  Knowing that we are better people, individually and as a family, because we see the world a bit differently is a blessing. 

I always knew I'd fight for my children, but I know I will have to do so even more now.  I am already fighting stereotypes of what Down syndrome is.  I am already fighting against the R-word or people using "Down syndrome" as a slur or synonym for stupid or dumb.  I hope in Wesley's lifetime that the R-word and Down syndrome used as offensive terms will be eradicated.  I hope that people, through knowing Wesley, will see that Ds is not something to be feared, is not something horrible, and is not a sentence of a life that cannot or should not be lived.  Wesley is thriving, learning, communicating, eating, growing, playing, and loving.  No one can look at him and tell me he has no quality of life.             
I know I blog sporadically and have limited readership on this blog, but if anyone reading this knows of someone who has received a pre- or post-natal diagnosis of Down syndrome, please contact me.  I know there is fear and I know many times medical professionals paint a bleak outcome for someone who has Down syndrome, even in 2013.  Please let me tell you my side of the story.  Please let me walk you through my pictures and the pictures of many others who are touched by Ds.  Let us come alongside you and tell you of the countless blessings that those doctors haven't experienced.  Let us tell you how our babies defied the textbooks and the "odds."  Let us help you see beyond the diagnosis and into the people who have Down syndrome and all the things that they CAN accomplish, especially with family support.

This verse makes me think of my Wesley: "Blessed are the pure in heart, for they shall see God." Matthew 5:8  I know he's helping others to see God, too.

I love you, little man.  I'm sorry that I didn't understand how much I would when we first heard the words "Down syndrome."  You are a gift.  Love always - Mama