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!

Thursday, March 14, 2013

I have an addiction. I have a problem.

If you didn't already know, I have a shopping problem. If I go shopping by myself I can analyze any purchase and convince myself I should buy it. I'm a lot better when I have a shopping buddy. So after getting our tax refund I thought to myself what a great idea it would be to go shopping. I spent far too much at Carter's one Friday. But now the girls should be set for spring! (I have to tell myself that every time I see something cute!)

The problem is that I didn't stop with my large Carter's purchase. My problem is Zulily. So I've always known of Zulily and have purchased a few items over the last year. I never really look because I know there is nothing I absolutely need to spend money on. Well then last month I get an email that Zulily will have TOMS! Uh oh....I had Ray bring me the iPad at 6:30a as he was leaving for work, the sale started at 6a. I had a pair for me and a pair for Madi in my cart. By the time I hit checkout, my shoes were gone! Oh well, I found Madi a cute pair I normally wouldn't buy at full price.

Well I've never purchased a lot so then I see I get free shipping the rest of the day. Thanks Zulily for giving me an excuse to shop more! I bought some Plum baby food for Madi.

Then it became habit to open my Zulily app every morning to see what was new. I truly was searching for a suit for Elli, but got distracted by all the other great stuff! It's a good thing I use to ignore Zulily because this is dangerous! Stuff that I already wanted but discounted! During these shopping spree the local radio station had their annual radio-a-thon for Seattle Children's. I was looking at photos of the two days of fundraising and saw that many if the phone volunteers were Zulily employees and they made a large donation to the hospital! Anyone who donates to Children's s #1 in my book! Their donation helps Madi get the care she needs.

I'm happy to say I did find a bikini for Elli! What do you think of it?

And all the other fun stuff I ordered!

Extra straws for all my cups, love they have stoppers so they don't get pulled out.
Because I've been eyeing one of these since I saw aunt Tammie's on New Year's Day!
Of course I needed a cake pan that helps me make a checkerboard!
Who doesn't need 50 cute paper straws for upcoming parties?
And a memory foam bath may is much better than our piece of cotton we have now on our bathroom floor!

So you can see I have loved Zulily the last few weeks, then they make me love them more! I got Madi's TOMS in the mail and was so disappointed when I opened them. Although they are still super cute they weren't the ones I ordered. Instead of the black and white with pink soles they are blue with multi-colored dots. I decided to send an email to let them know I received the wrong item. Not only did they refund the entire purchase, they told me to keep the shoes AND gave me a $10 credit! What an awesome company who is obviously focused on making their customers happy!

We also booked our Vegas trip during this so i wasn't surprised when the bank called to confirm the activity on our account! After all this Disney Princess showed up yes I bought more! We will be saving that stuff for Elli's birthday though. My only goal now is to find a suit for myself before Vegas! Thanks for listening to an addict and her shopping problem. Now go shop Zulily!

Tuesday, February 26, 2013

Elli swimsuit ideas

Some of you saw my Facebook about having a hard time finding a new suit for Elli. Here are the links for my favorites so far. I'm hoping that once we get closer to summer they have some more to choose from. Any input would be appreciated! :)

Cute but expensive 

Cute one piece 

I have a stripe obsession

This reminds me of Erica

Itsy busty teeny weenie yellow polka-dot bikini

Love this style top

More stripes

Wednesday, February 20, 2013

Quick Update

  I'm sitting here on the couch at 8:15p, still not feeling too great, and enjoying the quiet! What better time to finally type up an update? Elli has been exceptionally, shall we say, strong-willed the last few days. After throwing a completely embarrassing fit in the street for Ray, we said no TV or iPad the rest of the night. We usually always always always have the TV on in the house, just as some background noise and after having it off part of the afternoon and all evening I really enjoyed it! We will be doing this more often. Now we get to book our anniversary trip to Vegas while enjoying some delicious homemade ice cream.

 Madi had her echo and cardiology appointment a few weeks ago and her doctor was so pleased with her weight gain. She was at 19 pounds (8.66 kilos), which is where they wanted her for surgery. Well after meeting with Dr. Yung they have decided that since she is doing so well to put the surgery off again. Now they want to wait until she is at least 10 kilos (22 pounds) to perform the surgery. Although this is great news to hear how we'll they think she is doing, it also means I have this huge thing just looming over me. At this point I just want to have the surgery done so we can move forward, right now it feels like a waiting game. She is also doing so well in her therapies! Both her physical therapist and feeding therapist are so pleased with her progress. She is eating food 3 times a day and can still drink up to 35 ounces of formula! We are hoping to get her to eat more so we can stop giving her formula. She is taking steps with help, moving from couch to chair, crawling to the other end of the house and pulling up on everything. It is so fun to watch her learn new things. She is clapping all the time right now also.

 Elli has been taking swim lessons for a few months now and she is doing amazing! Some weeks she performs better than others but I am so impressed with how well she can swim! She can dive down to the bottom to pick up toys, swim the width of the pool by herself and swim the length with a small float in her back. She loves the water and has made a few new friends in the process. We are hoping
to check out a few preschools next week to get her enrolled for the fall. Ray also signed her up for
soccer with the Issaquah Highlands Soccer Club. She will have practice/games on Sunday afternoons. Family, go ahead and tell me how wrong I was to not want her in soccer! I still don't like it but I agree it will be good exercise once her swimming stops.

That is all I can think of for now, have a great day!

The above photos were just taken this morning.

Ready to go swimming!
She loves to pose now!

Saturday, November 24, 2012

Happy Thanksgiving!

Usually every holiday is spent us driving from house to house and stressing what days we spend with what family. This year Thanksgiving was a little stressful at first but actually turned out perfect with the Apple Cup happening the Friday after Thanksgiving! That gave us the chance to spend Thanksgiving with my family and the Friday after with Ray’s family. (Sorry for the serious lack of photos!)

My mom hosted Thanksgiving at her house for the first time and it was wonderful! She saw a cute idea to make place tags for each person and on the back of the card that person has to write what they are thankful for, then they were hung on a tree and it became the ‘Thankful Tree’. Our plan was to start a tradition of this each year and the following year see what everyone had been thankful for the year before. My parents cooked 2 turkeys and made 10 pounds of potatoes for all 24 of us. The potatoes were gone by the end of the night! We had a lot of Grandma’s recipes and pies and my mom even got to borrow some placemats that were Grandma’s. Madi got to sit in her high chair and make a mess with mashed potatoes and stuffing, we learned then that this girl LOVES mashed potatoes!  (Sorry no photo of the mess after.) It was so nice to have Grandpa there, he wasn’t feeling too great but I think he just enjoyed being with the family. My family loves to play games together – pretty much my favorite part of our family get-togethers! It is usually the women playing games while the men watch some sort of ball game on TV and this holiday was no different. At one point I went out to the family room and every inch of the huge couch was covered – half of the people napping!

On Friday I got myself and Madi up early to go out shopping with my family at Southcenter mall. I got there about 9am and left at noon. I think I got there at the perfect time because I had missed the crazy people there for opening but the afternoon crowd hadn’t shown up yet. None of the lines were crazy and there was still product available. When I left the mall at noon it was CRAZY! Like took me 30 minutes to get out of the parking garage crazy! Do not ever plan to get to the mall at noon on Black Friday!  I mostly spent the time with Nancy, Erica and Tara, trying to find a dress for Tara’s Homecoming dance. We didn’t buy a dress but found a couple maybes. It was nice to get to spend time with those girls! As I walked through Nordstrom though I saw the perfect TOMS for Elli and now I’m just dying to buy them for her!!

That afternoon we went over to Rhonda’s house to eat more and watch the Apple Cup! We watch the game together every year so this worked out perfect to join Thanksgiving and Apple Cup! Randy had to work so Rhonda called DirecTV and ordered a DVR to get there before Friday in order to record the game and watch it when Randy got off work. Rhonda is the only Husky fan in the family – us kids are all Cougar fans. You could say the house was a little loud during the last quarter/OT with us kids getting excited! It was a wonderful game and a lovely night as always spending time with family. Elli adores her auntie & uncle and has super energy with them!
This year I am thankful for many things – see next post with copies of my 30 days of Thanks from FB. But mostly this year I am thankful for my family. With losing my Grandma in October we all came together and supported each other. We all understood each other’s pain and spent those sad days together. I am also so very thankful for my girls who even though test my patience daily, give me the most joy, the biggest smiles and a heart just bursting with love.  I hope you had a wonderful Thanksgiving and would love to know what you were especially thankful for this year.

Tuesday, November 20, 2012

Madi's Photos

Before Madi was born we had planned to get newborn photos of her. I had pregnancy photos with Elli and thought it would be fun to do something different with Madi. I was so disappointed to have to cancel Madi's photo shoot when she was born. She was in the hospital for 2 weeks and we didn't want photos done there. I have been so bad about getting her photos done every 3 months like I did with her sister (we only went once) so I thought it was right to get 1st birthday photos done for her. We haven't ordered prints yet but so far the extra investment of going to a professional is worth it!

We chose to go to Kayla J Photography in Monroe, we had originally planned with her for Madi's NB shoot. She was recommended by two friends and had very reasonable prices. I was so happy to finally meet Kayla and see her amazing studio! She was great with the girls, loved on Madi and seemed to understand my being late. We are already looking forward to going back next year!

I was so embarrassed though the day of because I had been thinking all week our appointment was at 10:30 only to look at my message to her on the way there that I had said 10! So we were running a half an hour late...which wouldn't have been so bad if I had known about 522 closing daily from 10:15-11:15. We were seriously at Echo Lake intersection at 10:17 when we realized this. We then had to go to highway 9 to highway 2, an extra half an hour! Now our 90 minute appt was cut to 45 minutes all because I didn't double check myself before leaving the house!

I am so very pleased with the photos we were able to get in that time and am currently having a hard time deciding what to order! You are more than welcome to check out our album here until they expire on December 1st.

Thursday, November 1, 2012

Happy Halloween!

I've never been a huge fan of Halloween, although I did some dressing up in my early twenties with my besties! I've always enjoyed the trick or treat aspect and the beautiful fall weather we usually have, I just hate the darkness of this holiday. But while we have little ones I will enjoy the fun of trick or treating!

About a week before Halloween we went to Rhonda's house to carve pumpkins and celebrate Halloween with her, Randy and Shawna. Elli had fun carving pumpkins, decorating cupcakes and goofing off with uncle!

This year Elli wanted to be Cinderella which is great since we already had almost everything for her costume! Great choice Elli! She loved getting to put makeup on and wearing her crown.

I recently pulled out all the 9 month clothes from Elli for Madi to start wearing and we found Elli's first Halloween costume! Here is Elli at 3.5 months and Madi at 10.5 months old in the same pumpkin costume. So fun for them to share that first! And the pumpkin was a perfect addition to Cinderella!

Before dropping off Elli at Cubbies we decided to get Red Robin so I didn't have to cook. Unfortunately we had the worst service ever! After dropping Elli off at church Ray and I took out pumpkin to Target and she got to sit up in the cart for the first time! So much fun.

After Cubbies they had a little festival for the kids with games, face painting and hay rides. Elli had a blast and got lots of little prizes.

We thought we would be home too late to trick or treat in our neighborhood so we decided to stop at my parents neighborhood on the way home. They don't get trick or treaters up there so the few houses we stopped at Elli got a ton of candy! She loved looking at the moon while walkng around. It was a nice night together as a family!