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Our son Maxton was diagnosed with left-sided congenital diaphragmatic hernia (CDH) at his 19 week ultrasound. Maxton was born on 3/3/09 at Vanderbilt University. He fought hard for 18 days but earned his wings on 3/21/09. Maxton was an inspiration to many during his brief time on earth and has forever changed our lives. If your child is diagnosed with CDH, please feel free to contact us. Maxton may no longer live here on earth, but he will live forever in our hearts...

To start at the beginning of our story click here and scroll all the way to the bottom.

Tuesday, July 28, 2009

Some thoughts

I have been so stressed lately about moving to Kentucky. Not because I don't want to, but because I was supposed to be there with Maxton. But he is not here. It simply stinks- big time. I was up on my soap box tonight wondering why bad things happen to good people. I have a friend back home in KY who is watching her son slowly go to heaven as we speak. He has cancer. His parents are WONDERFUL people who adopted him and loved him much more than many parents love their children. He is their son and soon he will be in heaven with my Max. Jennifer- if you are reading this, I so admire your family. You were such a source of strength for me during my CDH journey, and I don't know if you ever even knew it.

Anyways, back to what I am saying- why do bad things happen to good people? I think it is because if we were bad people, would we even care. Would we feel half the emotions that we have all felt? I hope this doesn't come across as me saying I am better than others, and I hope that it makes sense. But, I guess I am trying to say that we care so much because we are good people. God chooses us because he knows that we will put all we have into it- all of our feelings, all of our love. I am sure that he has many other reasons. But tonight, for me, something about that thought clicked. God knew that I would love Max more than any one else ever could... and that is "why me?" He knew that I was perfect for Max and he was perfect for me. And that is all I need to know about it..

On another note- please visit :http://www.caringbridge.org/visit/benjamensaigesnyder

Please pray for Benjamen and read some of his story if you have time.

Tuesday, July 21, 2009

Autopsy

Today we went in for Maxton's autopsy. It has been 4 months today since my angel grew his wings, so it was an especially hard day. We learned that I was wrong (Thank GOD!) and that there was no underlying blood clotting issue. Unfortunately, during Maxton's repair surgery his liver was lacerated, twice. It is believed that due to this laceration Maxton's crit levels plummetted early on the 21st. I had posted that they were hoping that the bleeding would eventually swell his abdomen enough to clot, which it likely did. Unfortunately, this was a double edged sword, as it caused so much pressure to be put on his bowel that it ended up killing his bowel. Because his bowel had died, his other organs and blood and things went into overdrive and tried to fix the problem, but ultimately caused all of his systems to fail. My poor baby bled... from basically every organ he could possibly bleed from. It was very hard to hear this. I saw the word "hemorrhage" too many times in that autopsy report. We know that his doctors did the best they could, but it is hard to not second guess our decision to have him here. It's hard to not imagine- what if? The doctors did tell us that at one time (I am assuming the Friday after he is born when we almost lost him) it was thought that he was "unrepairable". I smiled when he said this. He kind of stared at me, but as a mother i was SOOO proud. My baby proved them wrong- at least to me he did. They thought he would never make it to the repair, yet he did. I laughed and said he was one tough little guy and the doctors certainly agreed.

My mind is in overdrive tonight, so I don't really feel like writing much more, but did want to let everyone know just what happened... no matter how sad/unfortunate it was. Thanks for thinking of us.

On another note- I have a job in Ky as an elementary special ed teacher. :-)

Wednesday, July 15, 2009

Letters


I mailed my letters today. I mailed 119- for some reason there were 19 extra envelopes in my package. My mom also mailed 116 (she had 16 extras!). :-) Thanks to all who gave us stamps so we could mail letters from you!!!


We are going in next Tuesday to hear about Maxton's autopsy. I know this will be a difficult day. Coincidentally it will also be the 4 month angelversary of our little guy. :-( We will be sure to update with what they tell us. I am expecting to hear of an underlying blood disorder, so we shall see.

Saturday, July 11, 2009

Big News!!

I have some big news. PLease pray for us as things here are kind hectic.


David and I are moving to Kentucky. We both quit our jobs this week. My last day is on July 29th, his on July 24th. Please pray that we quickly find jobs there. It is VERY unlike me to quit my job without having one, but I have decided to have faith that I will find something! We will be living with my parents until our house sells, so pray for that too... :-) Kinda scary!!

We are very excited about this move, but understandably scared. We had been trying to move last summer when we found out we were pregnant. We ended up staying here (thank goodness!) and now are ready to go. Our life has been so uncertain lately and it felt good to finally decide where we would be and what direction we are taking as a couple. It will be nice to be closer to my family and closer to Max's grave. It will be sad to leave David's parents though.

This past week I was able to meet with Kristi and Craig, Kaden's parents. It was wonderful- like visiting with old friends. Thanks Kristi and Craig for letting me invade your vacation. :-) I think it really helped me to visit with you all.

The hospital called yesterday about Max's autopsy (I think). They left a message and it was too late to call back when I got home, but I will call them on Monday. I know this will be a difficult thing to do, but we are ready to hear the results. They were specifically looking at his brain bleed and other bleeding issues, as well as possible organ damage during his repair surgery.

Remember, there are only a few days left if you are planning to mail blue envelopes for CDH to Ellen show. If you are not able to mail envelopes, please email Oprah on WEDNESDAY JULY 15TH to suggest CDH as a show topic. We are hoping to raise awareness about this awful defect! Thanks guys.

Friday, July 3, 2009

Pregnant/ 4 Months

Let me start this off by saying.. no, I am not pregnant. A year ago today, I found out that David and I would become parents. Little did I know, just how much our lives would change. I had taken off of work for some prebirthday pampering (my birthday is on the 6th) and drove David to work and went to get my hair colored. It had been years since I had gotten my hair colored, but I decided to just do it. I came home, made my hair look all cute, and then went back to work to get get David. We went to Fazolli's for dinner. We were planning what we would do for the weekend as my parents were coming down the next day and would stay through my birthday. I was super excited. I am not a big drinker, but was hoping to get a nice big margarita. :-) Anyways, I knew I should have started my period about 2 days before, but sometimes I am a couple of days late. I talked with David and we decided to stop and get a pregnancy test on the way home just to be safe. We weren't really trying to get pregnant, but we weren't not trying either... Anyways, came home and took the test. It said "pregnant". I was thinking wiat... what!? I told David. He said- "no way, you read it wrong." I said- "It's the one with the words". Freaked out a little.. got super excited, then tried to figure out if we should wait to tell our parents until we were all together, or just tell them. Of course, I called my mom... she wasn't home. Called my grandmas looking for my mom. She had just left there. Grandma could tell something was up, but I didn't tell her. Finally got in touch with mom and told her. :-) Then we called David's parents and told them too. Then I took another test just to make sure. :-) Went out the next day and bought another test to take it also. All said pregnant... very quickly I might add.

In hindsight maybe the universe was trying to tell me something as my mom had appendicitis that weekend. They came here, even though they shouldn't have. She thought she had her appendix out when they removed her gall bladder. She was here Friday through Sunday in pain, but still went out to celebrate with us. Her appendix burst sometime on Sat. (most likely) She went to the hospital where she works as an RN on Monday and looked up her records. Confirmed she had an appendix still and then informed them that it burst on Sat. Praise God that he let her live through all of that.

My pregnancy was not an easy one, to say the least. Every appt. except for one I was told "bad news". It started in July- Sept (when we had a CVS) then the one normal appt (liekly because it was the only one that didn't contain an ultrasound), then the CDH diagnosis in Oct.

Anyways, sorry for the rambling. The last year has been crazy. It has been so profound in reshaping my life. Today my sweet baby would be four months old.. or a year old, depending on how you look at it. I miss him so incredibly much. I see 4 month old and wonder if their parents realize all they have been given. I wonder what my sweet baby would be doing.

The question people keep wondering is if we are trying again. I would like to say that we are... but I have yet to have a cycle. It has been 17 weeks and nothing. I have called my doctor (about a month ago) and was told to call back in August. I talked them into letting me call back in 4 weeks instead. So, this week I will be calling to schedule an appt. I feel like I need to be pregnant again in the near future. I feel like each day that passes without a cycle I start to get more down, wondering what is wrong. I am so worried that I will never be able to have another baby. It terrifies me. I have taken several pregnancy tests (like at least 10) because I am always wondering... what if? The nurse at my OBGYN said "well you've been under a lot of stress so that is likely why you havent had a cycle" and I said " i think not haveing a cycle is causing me stress". Hopefully, they will agree to see me this time.

To end this post on a positive note, I am soooo excited to be meeting Kristi and Craig, angel Kaden's parents, this week- on Monday! I think it will be great to meet a family that I feel so close to throughout this. Kaden was born 3 months ago today, one month after Max. He also passed away one day short of a month after Max. Whenever I think of Max on his special days I am always thinking of Kaden too. I can't wait to meet his awesome parents. Happy 3 month birthday Kaden!!! I know that you and Maxton are keeping each other company in heaven and know that your mommies wish we were able to be spending time with you here instead!!