Thursday, March 21, 2013

Why we celebrate 3/21

Today is World Down Syndrome Awareness Day. We are celebrating Madison in our house today! I thought it only appropriate today to write how Down Syndrome came into our life. Most of you have hard this story from me already but I wanted to celebrate Madi by telling her story. I warn you now, this is by far the longest post I have ever done! Thank you so much for caring for my girl so much if you actually read it all!

For both of our girls I opted out of any additional testing during the pregnancy, like the quad screen, because we knew that no matter what we would continue this pregnancy, that nothing they told us would make us do anything different than have our baby. Because I didn't do this testing my doctor sent me to an ultrasound specialist to ensure there were no problems for our 20 week ultrasound. We went to Obstetrix Medical Group for our 2nd baby on August 8th ready to find out if we were having a boy or a girl. We brought Elli with us to share in this fun day. It started out with the doctor (yes the doctor did the ultrasound not a tech) telling us that Elli had to be silent so he could concentrate...and when I handed her my phone to play a game he told me it had to be turned off. Although this makes sense, he has a horrible bedside manner and was very rude to me and Elli. (When I went for my ultrasound with Elli he said as soon as I walked in, 'You have a high BMI which means we probably can't get a good photo.') I think how he started out the appointment made the ending seem that much worse. He told us right away it was a girl so that made me smile but then he was quiet for the rest of the exam. I noticed him measure something 3 different times. Because I saw this and he wasn't saying anything I had such a sinking feeling. Already the joy of having another girl was gone. Once he was done he told us that due to her arms and legs measuring shorter than the rest of her and because of a small spot on her heart, he believed she had Down Syndrome. Wow. Not what we were expecting that day.

Ray and I were in shock pretty much most of the day/week. We did call our parents and Jessica since we knew they were waiting to find out girl/boy. As soon as I started talking with my mom I started crying because I was so upset that our little girl wasn't 'perfect'. My mom kept telling me that no matter what God has a plan for us and for Madi and that whatever is meant to be will be perfect for us. She then wrote out this daily prayer for Madi on a card, which still is up on our fridge for me to remember daily how special our girl is to God. That week we told very few people because really the chances of Madi have DS was like 1 in 700 so we didn't want to dwell on that throughout the pregnancy, although secretly Ray and I never let that leave the back of our minds. Honestly we didn't talk about it much, I think it scared us to think about.

The day Madi was born seemed so relaxed and low key - must different than Elli's birth day! Although we had to be at the hospital at 5 am, I took my time getting ready and not rushing myself. I enjoyed those last blissful minutes in the pre-op room listening to her heartbeat and talking with the best nurse ever! (Unfortunately I didn't write it down and now don't remember her name.) I do remember getting my shot and the room being freezing cold. As soon as Madi was out I kept trying to look back at her, this isn't easy to do based on how you are laying and where they clean up the baby. Ray was also in my way but I wasn't in the right mindset to ask him to move. When I finally got a glimpse of her I knew immediately that she had DS. This is the moment that is hardest to put into words. I had so many different emotions running through my mind yet I could barely keep my eyes open. Through the haze I noticed the nurses not saying much and calling the NICU. I kept asking over and over if she was okay and nobody would answer me. Why couldn't they just say yes she is perfect? I knew she had Down Syndrome, but I couldn't voice that at the time. I couldn't just say I don't care about the DS, is she healthy? That is all I kept thinking but the words never came. I started getting nauseous and told the anesthesiologist, thank God for that magic medicine! I closed my eyes and let the tears roll down my face. I cried for the daughter I dreamed of and would never have. I cried for the pain she would experience. I cried for the other people that would look at her different or make fun of her. I cried for her sister not being able to have that sister relationship I wanted for her. I cried for selfish and ignorant reasons. I don't remember much else from the O.R. but that.

Meet our girl, Madison Joy Isom. 7 lbs 8 oz 20 inches

Rhonda was the first other than Ray and I to hold her.

Once we got back to the post op room I was able to hold Madi for maybe 5 minutes. Once the pediatrician showed up they finally uttered the words, 'we see signs of her carrying the genes for trisomy 21'. The what? I was in such a fog I didn't even know what that meant at first. I learned that nobody at the hospital would agree she had DS, or Trisomy 21 as they say there, until they got the blood results back. Ray's mom came while we were still in post op and she got to hold Madi for a minute before the pediatrician came back and said they wanted to take Madi for an Echo. Then I got moved to a regular/bigger room at the same time. As soon as I was in bed and settled, Ray's dad and Joan showed up, I just needed my mom. I was looking up everything on my phone, wikipedia was my best friend that day. What was an echo cardiogram? What is trisomy 21? I learned so much that day about what our future held. All this time I still didn't get to see my girl. I tried to be a a good hostess to the family in my room, I don't think I did so well at that. The Echo lasted over 2 hours, at least Ray got to be with Madi. I finally called my mom and she said she had been waiting for me to call her, this whole time I was wondering where they were. I hate miscommunication! My parents finally showed up with Elli. Rhonda, Randy and Joan were still there and then my brother showed up. It should have been such a happy occasion but their was no baby to coo over and cuddle and kiss.

Finally they brought Madi back in the room, I was so happy to see her face! Ray handed Madi over to Elli and she was in big sister heaven! Until Madi made a noise then Elli couldn't hand her over fast enough. My mom was holding Madi when a nurse from the NICU came back into the room and said they needed to take Madi and admit her to the NICU. The cardiologist saw her Echo and said she had PDA and needed to stay in the NICU to receive oxygen. I didn't understand a word that was being said to me other than, we are taking your daughter away to put her on oxygen. That made me cry,actually that made the entire room cry. The fact that she had DS was greatly diminished once we found out of her heart problems. All we really wanted and prayed for was for her to get healthy and go home. We could love her with DS, I just wanted her there to love!
Getting to meet her sister for the first time!

My mom got to hold her for a few minutes.

The NICU staff had spoken with Ray many times in regards to what was going on with Madi as he had been in and out of there all day, but I was stuck in bed! Ray was just as overwhelmed and had no way of understanding anything enough to repeat it back to me for understanding. I thank God for his timing of bringing a NICU nurse to my room while my cousin Jaime, a NICU nurse, was visiting. I not only was able to ask questions myself but I had Jaime there to help me further understand the meaning of PDA, a heart murmur, VSD, oxygen sats and DS.  I also had that family member I trusted to tell me the truth of how serious each thin was. I honestly don’t think I would have been as strong if I hadn’t had her there at that moment. I would not have known what to ask or say to the nurse myself. It also helped me to talk to Jaime about things so I could fully understand what Madi would be facing the coming days.
This is when I was finally able to get out of bed and go see my girl!

The next 2 weeks are such a blur for me. I remember bits and pieces but there is no way I could walk you through the days. I remember wearing my pink robe each time I went to see Madi the first few days. I remember Madi's nurses. I remember the delicious molasses cookies from the cafeteria. I remember crying one morning while in rounds (thank God we had a doctor who was compassionate and teared up with me) because I felt like Madi had gone backwards overnight. I remember walking in circles around the birthing center since I couldn't hold her all day every day. I remember I did lose it at one point though and felt horrible after. The day I as to be discharged the hospital was so nice to let us stay in an empty room for a few extra nights so we could be close to Madi. At the time of my moving rooms I was so overwhelmed with everything going on, I had so many loving visitors but I couldn’t take anymore and I just said ‘NO! I can’t do this anymore!’ and started crying right there.  
Those stickers to hold the oxygen tubes left her cheeks so red! They moved them often to help her skin not be so bad.
The most important thing I remember is who came to visit my girl. The nurse I had in pre-op, my OB/GYN who delivered her, my grandparents, our parents, our siblings, all my aunts and some uncles, some cousins and some great friends! Each time someone took the time out to come and visit her it made my heart so happy! I also needed some company with the amount of time I was spending there! The days that Ray had to go to work, I would most likely be at the hospital waiting for him or my mom to come pick me up. I missed Elli terribly since it had been over a week since I had really spent time with her. I just couldn't bear to leave Madi while she looked so helpless in her little crib!
I don't even think this looks like her now!

The whole time Madi was in the NICU she received such great loving care! One of my favorite nurses was Beth who dressed Madi in such cute Christmas PJ's and taped a bow to her head. It was so great for me to get to come to her room looking so adorable it made me cry! They did everything they could to make Madi feel more at home. There was one night that Madi had a nurse that was rude, short with me and even ignored me at one point. Good thing we went to rounds every morning so I could address that…we never had that nurse again.

Once we left the hospital for good, I thought I would be OK to go home. I knew I could come back and see Madi and I could be strong. Oh man was I wrong! I cried walking away from her. My heart sunk a little more each mile Ray drove. I wanted to beg him to turn around and go back. CWT. (Crying While Typing) Going home after delivering your baby, without that baby is excruciatingly painful. I can now sympathize with other moms who have experienced this pain. The one thing I kept reminding myself of through this entire experience was that someone else has had it worse. It really helped me keep Madi’s heart condition in perspective for me. I would say to myself; there is a mom that didn’t get to bring her baby home ever. A mom waited months, instead of days, to bring her baby home. A mom had a baby that was mentally/physically disabled for life. A mom brought a baby home that wasn’t healthy still and was unsure of their future. I knew that Madi was strong and would pull through this.
Sister visiting and giving her a bottle.
Christmas was an extremely difficult time. I wanted so much to be happy and excited with Elli but it was hard to be without Madi. We got to go and change her outfit into her dress and take some family photos. Photos with a baby that has all sorts of cords and wires is not easy! I think I cried after leaving the hospital on the way to my aunt's and I think I had a hard time smiling that day.
This is what Madi was dressed in when we got there on Christmas morning!

On December 27th Ray and I walked into the NICU to see our girl and we were shocked at the sight of her without her oxygen! We knew they had tried taking her off of her oxygen a few days earlier but her sats weren't staying above 92% so they said she wasn't ready. When we walked in the head nurse, Julie, came over and told us that Madi had been off of oxygen for about 3 hours and had been staying consistently around 97% saturation. This was the best news ever! We ran into rounds that day and were told that we would get to bring our girl home! Oh my goodness I think we were both smiling ear to ear all day! What a wonderful thing to bring her home in time for my birthday!
We are going home!
While Madi was still in the hospital Ray sent me a link to this blog. I sat there one day reading and reading and reading her posts. I made the mistake of reading Nella's birth story too soon. I was bawling my eyes out because she said exactly what I was feeling. Everything I had just experienced and felt was right there for me to read and relate to! I know that Kelle has thousands if not millions of followers who all feel connected to her but it was so great to be able to know that I wasn't alone. That even though I was sad at first, I knew this was my girl and I would love her just the same. I also now read this blog to see what Madi's future may be like.
Madi is now a strong and a very healthy girl. She still has VSD and a slight PDA but she is gaining weight so well and is looking great that they keep pushing back her heart surgery until she is bigger. She has had tubes in her ears to drain the fluid, small ear canals are more common for a child with DS.
And let me tell you why we love our girl! She is in love with her big sister. She is so strong and surprises her therapists. She is so cuddly and loves to be held. She is curious. She has ears that stick out, so we call her monkey. She has the most gorgeous blue eyes you have ever seen. She is a mama's girl. She does not like socks or shoes. She loves TV, especially Mickey Mouse Clubhouse. She has issues going to sleep some nights and has to be rocked/shook to sleep. She has a crawl where she puts one foot on the ground instead of staying on her knees. She doesn't laugh often but when she does it is the best sound ever. She is Madison Joy Isom and the best gift we could have received! This is why we celebrate World Down Syndrome Awareness Day on 3/21!

1 comment:

  1. Thank you for sharing the details of her beautiful story!


Thanks for sharing in our lives and sharing your thoughts!