Congenital Heart Disease Awareness Week

1st Surgery 10-4-2010

2nd surgery 4-1-1011

Hey Girl Hey!

Heart Buddies.. Nora, Bowen, and Paislyn

1st Birthday

Fall 2011

Fall 2011

Christmas 2011

I haven't blogged for quite awhile.... for lots of reasons really, but mainly just didn't have the time. I can't get over the last 17 months of my life as I sit and reflect of all the places we have been, and the trials we have OVERCOME! God has shown me his face more in the last 17 months than I have encountered in my entire life, or maybe it is just that I was more open to seeing him.  I think of Congenital Heart Disease Awareness Week 2 years ago and think I probably didn't even acknowledge it, and why didn't I? Because I was not directly affected with it, and really wasn't aware of what it was all about. I feel like people are like that with a lot of things. If it doesn't directly affect us or someone we know, we just tend to brush it off. I know I do that with a lot of things and I hope that in the future I take the time to acknowledge every ones trials and see them for what they are and what they are going through. This week brings back a lot of memories for me. I sat down today and looked through her Surgery books I made her and read through my Journal, which am now wishing I DIDN'T lol haha, but I truly can not get over how far Paislyn has come. From the moment the Dr's told me that she wouldn't even survive, to the gut wrenching moment when I handed the surgeons my 6 week old baby, to coming around the corner for the first time in the ICU and seeing my beautiful baby girl with tubes everywhere, to doing it all over again at 7 months old, I can't tell you how I thought in those moments that I couldn't do this..... Well I did, and I did because I was not doing them alone. God made me STRONG when I was WEAK, he made me TRUST when I couldn't see, and he knew way better than I that he had this all in Control. I would do it all again tomorrow to have the outcome I have today with my Paislyn Nicole. She amazes me more and more everyday with her spunky personality, and loving nature. She is BEAUTIFUL, talks up a storm, adores Dora the Explorer, loves to do Patty Cake, RUNS everywhere lol, has amazing FITS, :) Eats like a CHAMP, has the most incredible "CHEESE FACE", gives the best hugs and kisses, adores both her cousins whom she calls "Backpack" lol, says "Thanks" for EVERYTHING, and most of all has a beautiful scar and testimony that will be with her for the rest of her life.  I hope when Paislyn is in school during CHD awareness Week she uses it as her opportunity to show the Love of Christ to all her friends and show them  how God is with us in our trials and loves us unconditionally no matter if we have a scar on our chest, no hair because of Cancer, braces on our legs, or feeding tubes in our nose. I hope she is able to sympathize with all children and show them they are fearfully and wonderfully made by a God that made them just the way they are. It is strange how much your world and views change in such a short amount of time.... something as silly as a "heart". I use to despise clothing with Hearts on them, heart jewelry, heart anything really, and now I can't get enough of it! God has made my precious little girls heart so incredibly special and taught me a lot of life lessons in the process. I am thankful for how far she has come and for how much father she has to go. My life has been forever changed by Paislyn, more than she will ever know. In closing, I ask that when you remember, you keep our CHD children in your prayers. They are strong little ones, who have lots of Dr's appts, get sick very easily, have to always be "a little different", and could always use a PRAYER! I also want to again say THANK YOU to EVERYONE who has been apart of Paislyn's journey with us. Although I might not have been great at acknowledging it then, I remember what each and everyone of you did for us during this last year and a half and honestly couldn't of done it without you! You are all AMAZING! Thank you for loving us so much.

More than I could imagine!

I'm sorry it has been so long since I have written a blog. Life has caught up with me, but no news is good news! Let me tell you about the past few months. Paislyn has been doing great. She amazes me more and more everyday with the things she does. The other day I did something I shouldn't of and looked back at all of Paislyn's pictures from the day she was born until now. Of course, SURPRISE, I cried... hah but I can't believe all that she has overcome in such a short amount of time. I sat and felt sorry for myself for a moment, because I can't say that I remember a whole lot from her first few months ...it kinda breaks my heart, but I know that I have so much to be thankful for. Paislyn Nicole has grown up way to fast! My precious baby is the happiest little thing. She smiles all the time and has grown to have such a cute little personality. Paislyn claps all the time, and "flaps her wings (arms)", as her cousin Corban says, her laugh is contagious and could bring tears to my eyes, her kisses are the most amazing things in the world, she is so inquisitive... well kinda nosey haha, and such a smart and beautiful little girl. I could go on and on about how amazing she is. Paislyn has been doing awesome health wise. She is only on 4 medications right now and only 2 of those relate to her heart. As of today she is 20 lbs 7 oz, 28 inches long and sounds and looks great! She will be having a VCUG for her kidneys and another ECHO for her heart in October to make sure everything is doing what it should be. I feel such a peace about how great Paislyn has been doing. I have been able to enjoy my baby girl with no big worries. Paislyn loves the water. We have taken her swimming a couple times and she has a blast. She splashes and plays the whole time. She loves her Popsicles, ice cream, and of course whatever else your eating ... She wants! hahah I just love the age she is at right now, I wish I could freeze her for awhile. She is just so much fun.. I love watching her figure things out and doing something for the first time. Speaking of she FINALLY is getting her 1st tooth as of this past Tuesday. It is about time haha. She isn't crawling yet, but I think that will come in "Paislyn's time". I know it seems silly to share all these little things about Pay, but there was a time when I didn't think I would see her do these things. God has allowed Paislyn to live a full and productive life. She is such a gift to me and I couldn't love her more if I tried.  

Little Miss : )

Silly Girl

 LOVES her Snacks

Popsicle in the pool, life is good!

She is so Beautiful

She thinks she is a big girl, drinking out of mommy's water : )

By His Mercy and Grace

Today Paislyn had a follow up appointment with her cardiologist! We walked into the hospital and people were commenting left and right about how beautiful Paislyn is. It melts my heart to hear people say that, and it also is a great conversation starter to share Paislyn's testimony. God orchestrates our steps and he did just that today. As we were getting ready to leave the registration desk and walk to the appointment one of the ladies stops mom and says, "Wait, do you remember, I prayed for you and your grand baby", and then she saw Paislyn and was overjoyed. The day I delivered Paislyn was a crazy day as most of your know. My parents had left to go home for awhile, and in that couple of hours a lot happened. My brother needed to get blood work so my mom brought him with her when she came back to the hospital. Well, it was at that time that Dr. Allen walked in and told Jacob and I that Paislyn needed to be transferred to Toledo Children's Nicu. Jacob called my mom, who was down in registration with my brother, to tell her the news. Of course my mom and brother both lost it and this is when this woman was there to pray with my mom. She laid her hands on her and prayed for Paislyn. She told us today that she was just thinking about Paislyn the other day and wondered how she was. She said that God planned for her to see us today and she gave Paislyn a big hug and kiss. It made her day! God is soo good!  Dr. Hennessey thought Paislyn looked great today. He said, "Wow, she had a BIG surgery and she looks really good." She weighed 18 lbs. 5 oz and was 28 in. long. Paislyn was clapping her hands ( her new trick) , and eating her snacks having a good time. He then said, "There was a time when she was in Toledo, that I didn't think we would be where we are today."  I remember that day like it was yesterday. The nurses told me to give her one more kiss and then I needed to lay her in the crib. She was so fragile, and they didn't think she would even survive a transfer to Michigan. Well let me tell you something... God was NOT going to let that happen! He totally intervened and gave Paislyn the strength she needed to get through those couple days and off to Michigan we went. She has done awesome with 2 open heart surgeries and she is anything but, FRAGILE ; ) I give all the glory to God! He has shown me how merciful and powerful he truly is. I am so thankful to hear all the great reports about Paislyn and am so lucky to have her with me each and everyday. God couldn't of given me a greater gift!

"I will cause all my goodness to pass in front of you and I will proclaim my name, the Lord."  Exodus 33:19

A Special Thank You

Paislyn's Beautiful Cards

As I pulled up my driveway late tonight I saw a package in my mailbox. I assumed it was something I had ordered last week. I went in the house and opened it up and was blown away. Tonight Paislyn received 21 "Get Well Soon" cards from Mrs. Rosch's 2nd grade classroom from Ottoville Elementary. I read every card and was so touched to see the love from these children to my little girl. For all of you that know me probably are wondering how a 2nd grade class from Ottoville knew about Paislyn, well this is how. When I was pregnant with Paislyn I went to Dr. Kindig's office and loved her and all of her nurses as well. The night of Paislyn's benefit Lisa Filhart handed me a card and told me to open it. I immediately asked her if it would make me cry, because I was already WAY EMOTIONAL, and she responded by saying, "yes, you should probably open it later." Well when I got home I opened it and I was a blubbering mess! The card had a letter in it and a picture of 4 beautiful little girls. It was from Kandis, a nurse and her family from Dr. Kindig's office. The letter explained that when the girls first heard about Paislyn they told their mom that they didn't want anything for Christmas. They told their mom to buy them each a Little Miss Miracle T-shirt and give the rest of the money to Paislyn. Well, I was blown away. I was so humbled that 4 little girls cared that much for my precious baby. I was truly amazed! God put Paislyn in their hearts for a reason, and I am so blessed by that. They are exceptional little ladies! So I would like to give a special thank you to The Brinkman family for caring so much about Paislyn and for all your thoughts and prayers! I would also like to say thank you to Mrs. Rosch's 2nd grade class for taking the time to send such beautiful cards! I will read them all to Paislyn tomorrow! We appreciate you all so much and for everyone who has cared about Paislyn and our family during this time! THANK YOU!!!!

Amazed

Paislyn Loves bath time!

She was laughing for no reason! I love it!

Paislyn on our walk : )

Yep, she's a DIVA!

She loved swinging!

Just too cute!

As I look at Paislyn I am truly amazed by how well she is doing. She is almost 8 months old and has gone through not 1, but 2 open heart surgeries. Paislyn laughs, plays, jabbers, rolls over, loves to eat ( as you can tell), SMILES ALL THE TIME, and has the sweetest and spunkiest spirit! You would never know that she has something wrong with her. If that is not proof that we have such an amazing God I am not sure what is! I sometimes feel like I have been living a dream and I don't remeber certain parts of her life. I feel like the first couple months were a blur, which makes me sad, but at the same time it is becasue of God that she even made it past those first couple of months. I remember very clearly the day that the doctor came in and told us that there would be no point in doing an open heart surgery for Paislyn. That doctor obviously didn't know just how Big our God is! I look at my baby girl now and all she has went through and am in total amazement! She is doing awesome! The past week I have been so amazed by her. She makes me stronger and more thankful every morning that I pick her up out of her crib and see her sweet smile. Sometimes I don't think we realize how lucky we are. I sit back and look at other people's situations and know just how truly blessed I am. It breaks my heart to see and hear other people struggling, but I know God has a plan and a purpose. As Paislyn's mommy I feel it is my job show others how God has worked in Paislyn's life, that is why God gave me such a precious gift. Paislyn has been such a joy since we have been home. She has been her loving, smiley self. She is sitting up playing with her toys, laying on the floor playing, kicking those crazy legs of hers, and of course smiling at us all the time. It is so nice to have my Paislyn back : ) We have been able to take her on walks, let her swing outside, and love on her just like we did before. I am so thankful this second stage surgery is over. It went so great and we have been so very blessed.  I know that I love Paislyn more than anything in this world, and I TRUST God that he has a plan for her life. She is here to show the world that miracles happen and God is in control. I am excited about the next year or so just to experience life with Paislyn. We have a lot of fun things planned this summer and I am excited to enjoy my daughter. I truly feel honored to have such a special little girl :) My prayers for Paislyn are that she is not ever ashamed by what she has went through or her scar, but that she is honored and uses it as an oppertunity to show the love of Christ to others. God has given her a constant reminder of his power and love, and I hope she will embrace what a mighty God we serve. I hope she will be talking to her friends on the playground about God and how he was by her side through the toughest time in her life. I know she will grow to be an amazing little girl, and I am honored to be that amazing little girl's mommy!

Home Sweet Home

So happy and ready to go home!

Beautiful baby

At Home in her swing : )



Watching cartoons at HOME :)

Last night I was pretty sure that we would not be going home today. Paislyn was still not acting herself and was hooked up to IV fluids. It was about 1 am and Paislyn was being fussy. The Nurse Practitioner came in and noticed that her central line was leaking into her leg making it very puffy with fluid, she decided she had to pull the line out. She then looked at me and said, "Ok mom, here are our choices.. we can put another Iv in her arm to give her more fluid which I don't want to do, or we can put a feeding tube in just overnight to make sure she is getting fluid." I told her I didn't like either choice lol :) I then asked her if I could try the bottle with her just ONE MORE TIME:) She said of course! I began feeding Pay her bottle as EVERYONE stood around her bed to watch, more like wait to see if she threw it up. GUESS WHAT...... She didn't! I was so happy. I knew she could do it! I then gave her a few more bottles over night and she did well. This morning she was pretty fussy, but the Nurse Practitioner said she imagined she had a bad "Hemi-headache". We gave her some meds and she was fine : ) We got everything all packed up and were ready to head for home. I was so excited, and so thankful that Paislyn did so well. I  felt sad for the families we left behind, families that had been there longer than us and who I knew would love to be heading home as well. I will continue to pray for all of the families we got so close with :) Paislyn did awesome on the ride home. We walked in the door and she was pretty fussy. Jake took her around the house to show her, her room, her crib, and then ...."the picture". LOL The same picture I talked about in previous blogs..... it seriously made her smile so BIG, she knew she was HOME : ) Paislyn has been a joy to have home. She is smiley and loves playing with all her toys. I sit here and think.. Paislyn had Open Heart Surgery just 5 days ago and we are home..... God had his hands on Paislyn from the day we got there and I believe that with all my heart. He is a miracle worker and I feel so totally BLESSED with my little girl. I can truly say I wouldn't change a thing about Paislyn. I hate to see her go through it, but God has made her so special. It moments like these where I can sit back and think about all she has went through at just 7 months old. It makes her that much more incredible to me: ) He has big plans for Paislyn and he has changed me in the process. Thank you everyone for caring so much for Paislyn. I am so thankful for each and every one of you that take the time to pray for her. The power of prayer is amazing! I never imagined that we would be home this early, but Paislyn is so happy and so are we! We give all the credit to God, without him we wouldn't be where we are today!

Food Please!

My pretty girl :)

Hey girls, look at my cute purse :)

I love her so much!

Today has been a pretty good day. Paislyn is doing good, but having a "food bump" along the way. She was eating pretty good yesterday and all the sudden today she will not eat her formula at all. She is throwing it up everytime I get the bottle near her mouth :( It makes me sad because I know how much Paislyn LOVES to eat. Please pray tonight that she begins to drink her formula better. She has been eating some baby food no problem, but she needs to drink her formula to stay hydrated. Paislyn had her discharge echo done today and it looked great. The Doctor came in today and said yet again, that Paislyn looked great. It is reassuring that they all feel so good about how she looks. At the same time it is hard for me because she is still not acting like my Paislyn. I know it has been only 4 days since her surgery, but I want her to smile and be my crazy lady like usual! I know that God has brought her this far and he will watch over her the rest of the way. Just please pray she starts eating great! They have started fluids just to keep her hydrated, but want us to keep feeding her too. She needs to eat good tonight and tomorrow so we can still go home tomorrow! Today our roommates left : ( The Troupe's went home. Matthew was so excited when they were walking out the door, it was so precious! It felt empty in our room when they left, but I am so happy they were able to go home! We are so glad we met them and will forever have an awesome friendship! Thanks everyone for all your prayers, and continue to pray for Pay tonight : ) She needs to pull through this end part and I know she can do it! : )