As most of you know our world somewhat changed on Saturday. It actually kind of started on Wednesday evening before church. I was feeding Maddie and she kind of had a twitch but it honestly didn't look like anything more than that. By Friday I started noticing a small trend. She was twitching when she was getting tired so I went straight to the pediatrician. They were going to refer us to a pediatric neurologist in Tulsa for an EEG to rule out seizures. It was going to take a week to get into them. At the time it seemed like a good thing...If they aren't getting us in that day it must not be anything too bad. Once again they weren't crazy seizure like activities. By Friday night Chris and I had noticed these looking worse and her face making different movements that we did not like. Saturday morning we headed straight the St. Francis Pediatric Trauma Center. We figured that they would be the best place to go if something was wrong, since it was a children's center. They quickly got us admitted after seeing a video of one of her episodes and that's where everything went a little blurry. The first round of testing began... They drew blood to check her blood levels. They were thinking her potassium, electrolytes or sodium may have been off which could cause seizures. They then did a 20 minute EEG. Maddie did great with the test she laid there like a champ as they hooked her up to 30 or so electrodes. I think Chris and I were hurting worse at that point. Seeing your beautiful perfect daughter hooked up is an awful feeling. Later on that day the doctor came in and broke the first part of our not so great news. Her EEG was abnormal and they confirmed that she had a diagnosis of Infantile Spasm which are caused by hypsarrhythmia. It's where the brain sends of chaotic brain signals. Even though we thought something may be wrong, the news hit us like a ton of bricks. They were going to need to put on a EEG for 24 hours and monitor her by video as well. The placement of the 24 hour EEG was the worst thing I have ever been through. Maddie was screaming and Chris and I could only sit there and look at her while she was in such distress. It was the most helpless feeling ever. She ended up being on the EEG for over 30 hours. Finally yesterday they were going to do an ultrasound on her kidneys, and abdomen to look for tumors that could be caused by a disease called Tuberous Sclerosis. They said that some babies who have IS can also have Tuberous Sclerosis. They also wanted to do an MRI to take a look at her brain. After finally getting the 24 hour EEG off they took her back for her MRI which was under sedation. It was another experience that no one should have to go through. She screamed as they were sedating her and was fighting the sleep so bad. She finally gave in and they took her limp body back to the room. We got the results back from the ultrasound that there were no tumors on her ultrasound and we were thrilled! We just knew her MRI would come back clean. Unfortunately, we were wrong. The MRI came back with tumors on it. This news was the most devastating news your ears could hear...We looked down at our baby girl with tear filled eyes. We didn't understand how this could be happening to her and our family? After emotions of hurt, sadness, guilt and many more, we felt the prayers and realized that these conditions just make our precious girl that much more precious. We let it all out and then turned our eyes to the only one who can comfort us, God. We knew that we had been put in a crazy spot for a reason. God had entrusted Chris and I to take care of this precious girl because He KNEW THAT WE COULD DO IT. What an honor to be her parents! We have a lot of work ahead of us.There will be treatments to try and stop these spasms and unfortunately the TSC will be a condition she lives with. That being said some people live a normal life with this disease. We are hoping for that, but will not be discouraged if that isn't her path. We will change our normal and make it a new normal. I dislike the word normal anyway...Who wants to be normal? Not Miss Maddie!
We are absolutely amazed by all the love, support and prayers that we have received. God has blessed us so much. He placed each one of you in our lives to help us get through this and we thank Him and you for that. We will need a lot of prayers for strength, patience, knowledge and much more. We will make it through this, I know we will. We are planning on getting involved with awareness groups to try and help others with this and we are going to ask our friends and family to get involved with this as well! The official website for the TSC is tsalliance.org. You can check it out and get yourself aware with the disease.
Once again... We can't think you enough for your prayers and please do not forget about us as we still need prayers. We love you all!!
Chris, Heather and Madilyn
"Whenever God gives you a gift, he wraps it up in a problem. The bigger the gift you have coming, the bigger problem you will receive. But the wonderful thing is that if you look for the gift, you will always find it."
Blogging about being a mom and wife. I tend to focus most of my posts on the current happenings of our daughter, who is fighting a disease called Tuberous Sclerosis Complex.
Tuesday, April 16, 2013
Tuesday, October 23, 2012
She arrived with a bang!
First of all... Thank you all for all of the congrats and well wishes! We are pleased to announce the birth of our beautiful daughter, Madilyn Rae Lens. She was born on October 19th at 1:54pm. She weighed in at 6.13 and was 20 and 1/2 inches long. It was not exactly the birth we had expected, but we couldn't be happier with the outcome.
October 18th Chris and I arrived at the hospital to start the induction process. We were both so anxious to get there and once we arrived our nerves quickly set in! We were up in our room by 2:45 and got started on the first process at 4pm. By 3 the next morning I had quickly progressed and they decided that I didn't need any medicine intervention to keep the induction going. My body had FINALLY decided to get on board and have this baby! We were thrilled and new that it was d-day! She would enter the world soon! The doctor came in around 10 and decided to go ahead and break my water. We slowly progressed as the day went on. Around 12 I was talking to my family when the nurses came running into my room and asked everyone to leave. My heart sank as I could tell something was wrong. They said that the baby's heart was dropping every time I had a contraction, they went to check me and I was at a 10 and ready to have this baby! They started breaking everything down for delivery and called in the doctor. As we were waiting Maddie's heart rate continued to drop and mine continued to raise over150. They were flipping me from side to side to try and get a position that didn't cause her to drop. I was trying so hard to stay focused but all I could think about was how badly I just wanted her to be ok. I felt so helpless!! Once the doctor came in he decided that we needed to get Maddie out right away and the only way to do it safely was a c-section. Not only was her heart rate dropping but she was also in a crazy position that wouldn't allow me to safely push through the contractions. The next hours are somewhat off a blur- people from the OR started coming in asking me questions and prepping me for surgery. Chris was running out to the waiting room to tell the family what was happening. And before I knew it I was being wheeled down to the OR. They had to do a spinal tap which was awful because I was having contractions every 1-2 minutes and they ask you to be complete still... It's almost impossible to do that while contracting. They finally got me all set and strapped me down to the table. Chris was let in and he sat right by my side. He thought they had drugged me because he said I looked so calm. I wasn't drugged... just in shock! I just wanted my baby to be ok! They started the surgery and I felt the pressure of them tugging around. They told Chris to take a peek and he saw them removing her from my belly. After a few seconds I heard the sweetest cry in the world... All I could do is laugh and cry. I was soooo happy that she was here and ok!! They quickly took her and got her cleaned up and took Chris with them. They brought her over to me to look at and then they were off to the nursery to make sure she was breathing right. The next thing I know I wake up in a recovery room with no baby or family. A nurse came over and said she'd be sending me to my room shortly. I wasn't for sure how long I had been out?! But I did know I wanted to see the baby I just gave birth to. They sent me back to my room and shortly after that my baby girl was placed in my arms. It was so the most surreal moment of my life. I couldn't believe this little baby had been in my tummy for the past 9 months. She looked so perfect and my love for her was instant. She ended up having some very minor problems with her breathing. She had some fluid on her lungs but they were able to get that under control quickly. The last 4 days have been the best and craziest days of my life. We are running on no sleep and lots of love! She is everything I could have ever hoped for. I was planning on writing more... But it's time for Maddie to eat! And I can't keep her waiting. :) Thanks again for all your love and support. We are so blessed to have shared this time with all of our friends and family!
October 18th Chris and I arrived at the hospital to start the induction process. We were both so anxious to get there and once we arrived our nerves quickly set in! We were up in our room by 2:45 and got started on the first process at 4pm. By 3 the next morning I had quickly progressed and they decided that I didn't need any medicine intervention to keep the induction going. My body had FINALLY decided to get on board and have this baby! We were thrilled and new that it was d-day! She would enter the world soon! The doctor came in around 10 and decided to go ahead and break my water. We slowly progressed as the day went on. Around 12 I was talking to my family when the nurses came running into my room and asked everyone to leave. My heart sank as I could tell something was wrong. They said that the baby's heart was dropping every time I had a contraction, they went to check me and I was at a 10 and ready to have this baby! They started breaking everything down for delivery and called in the doctor. As we were waiting Maddie's heart rate continued to drop and mine continued to raise over150. They were flipping me from side to side to try and get a position that didn't cause her to drop. I was trying so hard to stay focused but all I could think about was how badly I just wanted her to be ok. I felt so helpless!! Once the doctor came in he decided that we needed to get Maddie out right away and the only way to do it safely was a c-section. Not only was her heart rate dropping but she was also in a crazy position that wouldn't allow me to safely push through the contractions. The next hours are somewhat off a blur- people from the OR started coming in asking me questions and prepping me for surgery. Chris was running out to the waiting room to tell the family what was happening. And before I knew it I was being wheeled down to the OR. They had to do a spinal tap which was awful because I was having contractions every 1-2 minutes and they ask you to be complete still... It's almost impossible to do that while contracting. They finally got me all set and strapped me down to the table. Chris was let in and he sat right by my side. He thought they had drugged me because he said I looked so calm. I wasn't drugged... just in shock! I just wanted my baby to be ok! They started the surgery and I felt the pressure of them tugging around. They told Chris to take a peek and he saw them removing her from my belly. After a few seconds I heard the sweetest cry in the world... All I could do is laugh and cry. I was soooo happy that she was here and ok!! They quickly took her and got her cleaned up and took Chris with them. They brought her over to me to look at and then they were off to the nursery to make sure she was breathing right. The next thing I know I wake up in a recovery room with no baby or family. A nurse came over and said she'd be sending me to my room shortly. I wasn't for sure how long I had been out?! But I did know I wanted to see the baby I just gave birth to. They sent me back to my room and shortly after that my baby girl was placed in my arms. It was so the most surreal moment of my life. I couldn't believe this little baby had been in my tummy for the past 9 months. She looked so perfect and my love for her was instant. She ended up having some very minor problems with her breathing. She had some fluid on her lungs but they were able to get that under control quickly. The last 4 days have been the best and craziest days of my life. We are running on no sleep and lots of love! She is everything I could have ever hoped for. I was planning on writing more... But it's time for Maddie to eat! And I can't keep her waiting. :) Thanks again for all your love and support. We are so blessed to have shared this time with all of our friends and family!
Sunday, September 16, 2012
How far along? 34 weeks and 4 days
Total weight gain: 25Maternity clothes? silly question at this point!
Stretch marks? Nope, not yet
Sleep: not the best sleep
Best moment this week: hitting 34 weeks!
Miss Anything? yes, I miss having control over my body!
Movement: Constantly
Food cravings: No cravings
Anything making you queasy or sick: contractions!
Gender: Girl
Labor Signs: Of course... lol Still dealing with good ol' preterm labor
Symptoms: feeling VERY pregnant!
Belly Button in or out? not all the way out
Wedding rings on or off? Off
Happy or Moody most of the time: happy
Looking forward to: My work shower and church shower :) We are so blessed to have such great people surrounding us... I have said it more than once... But Maddie is going to be spoiled rotten!
It hasn't been the easiest week, but we are one week closer to meeting our sweet girl. We had yet another visit to the hospital this week and now have signs of Miss Maddie getting ready to join us! Who knows how long she will put us through this anxiety! We are beyond ready for her. I obviously want her to stay in as long as she can, but with all of the these "labor signs" I'm ready!!
Saturday, September 8, 2012
How far along? 33 weeks and counting
Total weight gain: 24Maternity clothes? duhhhh
Stretch marks? Not that I can see
Sleep:bathroom breaks throughout the night make it difficult to sleep.
Best moment this week: Having so much time with the hubby
Miss Anything? SUSHI
Movement: Constantly, its starting to hurt
Food cravings: No cravings
Anything making you queasy or sick: contractions!
Gender: Girl
Labor Signs: Yes, still considered in Preterm labor...But once we hit 34 doctor said he will be much happier!
Symptoms: very tired and achy
Belly Button in or out? it's now half and half... looks pretty weird!
Wedding rings on or off? Off
Happy or Moody most of the time: Happy but very anxious!
Looking forward to: Making it to 34 weeks! The doctor said at that point things will be much easier if I go into labor. I'm sure Madilyn will continue to keep us going crazy!
Well the nursery is finally put together! We are still waiting on a couple of things but, if she decided to make an early appearance we would be ready for her! Chris did a GREAT job at putting everything together. And thank goodness for moms! She came over and helped decorate, clean and wash her tiny little clothes. It starting to feel very real! I can't wait to hold our sweet little girl :)
Thursday, August 23, 2012
How far along? 31 weeks and counting
Total weight gain:
21Maternity clothes? Yes, just bought some new clothes :) I love them as much as you can love maternity clothes :)
Stretch marks? Not that I can see
Sleep: It comes and goes.. Some nights are better than others.
Best moment this week: hearing that Maddie is still healthy despite the scares we've had
Miss Anything? Being comfortable...Everything has now become uncomfy
Movement: So much movement! She has the hiccups at least 2 times a day.
Food cravings: No cravings
Anything making you queasy or sick: contractions!
Gender: Girl
Labor Signs: Yep!! We are doing our best to make her comfy and stay in a little longer
Symptoms: Nesting!! It's hard when you're not allowed on your feet when you get home! But it's worth it to keep Maddie safe
Belly Button in or out? In... and I'm shocked I just knew it'd be popping out by now
Wedding rings on or off? wedding bands
Happy or Moody most of the time: Happy and stressed. Hoping our baby girl will take her time.
Looking forward to: Madilyn's baby shower!! I can't wait to be surrounded by our family and friends. We also will have our last 3d ultrasound this weekend. Can't wait to see my sweet baby girl
So this has been a trying week to say the least. But we are doing better and doing all we can to keep Maddie cooking! If we can just make it to 38 weeks I'd be thrilled! Only 6 1/2 weeks! I'm sure by the time we hit 38 weeks she will decided to stay and go past her due date! She is such a little drama queen! She must get it from her dad... Not me surely?!?
Tuesday, August 14, 2012
Week 30!
How far along? 30 weeks... it seems so close, yet so far away!
Total weight gain:
20...Yikes!! I have 15 pounds left to gain to be on track! Hope I can make it!!Maternity clothes? Yes!
Stretch marks? Still not seeing any...But I can't see under this big belly of mine! :P
Sleep: Sleep is a thing of the past I'm afraid! I have been up before 5 am this entire week.
Best moment this week: Stocking up on my cheap Huggies wipes!
Miss Anything? Sleep and being able to walk around with out getting winded!
Movement: She is a busy little girl. She has had the hiccups a lot this week! It kind of makes me feel bad! I know how bad the annoy me.. Hope she isn't annoyed!
Food cravings: Appetite has kind of died down. I feel like there is no room for food!
Anything making you queasy or sick: nothing
Gender: Girl
Labor Signs: Contractions come and go... but nothing steady
Symptoms: Sleepy and nesting has started to set in!
Belly Button in or out? Still in and I just knew it'd be out by now, but it's hanging in there!
Wedding rings on or off? I'm only wearing my wedding band right now.
Happy or Moody most of the time: Happy and oh so eager!!
Looking forward to: Hopeful getting her crib set this week!! It's taking forever!!!! And also I'm getting very excited for our baby shower next weekend! Can't wait to see all of our family and friends!
Monday, August 13, 2012
Coupon Saving Momma!
So my love for getting a good deal has now gone a little overboard! I have always watched in amazement and wanted to try and find those good deals on my own, but I've never put in the time to find coupons and match prices etc.
Well with Madilyn joining us in two months I realised that there are going to be a lot of items that we aren't use to buying. Which will increase our budget. I got the bug when I was able to find the great Kmart Huggies diaper deal! I was a little crazy and went to 4 different stores to stock up like I wanted to. I ended up getting a total of 14 boxes for 5.99 and I had 3-4 .50 coupons as well. It was a great score! Spent a little over 80.00 and it would have retailed for over 300.00!!
Well with Madilyn joining us in two months I realised that there are going to be a lot of items that we aren't use to buying. Which will increase our budget. I got the bug when I was able to find the great Kmart Huggies diaper deal! I was a little crazy and went to 4 different stores to stock up like I wanted to. I ended up getting a total of 14 boxes for 5.99 and I had 3-4 .50 coupons as well. It was a great score! Spent a little over 80.00 and it would have retailed for over 300.00!!
Now for my latest coupon run! This time I found a great savings at Walgreen's. They had 216 ct wipes on sale for 3.99 after the sale and an in store coupon. I had a couple of .50 coupons that I paired up. I also found out about there "register rewards". I'm a HUGE fan! There are certain items in the weekly ad that will earn you money back. So today I tried it out... Take a look at my goods!
5 Huggies wipes
2 Bottles of Scope
2 Boxes of Kotex
1 Venus Razor
1 Toilet paper
1 Sponge thingy
1 Omega Super Krill Fish Oils (Chris) --- Regularly 26.99!!!
I ended up paying 38.00 and change for all of these items. Before sales, coupons, and in store savings it would have been 119.00! I was very happy with my first real couponing trip. I hope to stock up on some items so we wont have to worry about them as we are trying to get settled in with our sweet Madilyn.
Ok, I'm done :) Just wanted to show my stash for the day! I'll be updating week 30 tomorrow!! :)
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