Rollercoaster

Challenges are what makes life interesting and overcoming them is what makes life meaningful. -Joshua Marine

Whew! It has been a crazy couple of days, and I have waited an waited to get you all updated on baby Lincoln.  Monday afternoon we had an appointment to see how he was doing.  He is doing well.  He has no more fluid around his abdomen.  He still has fluid around his skin (edema) and around his lungs.  It has not progressed though, so I am SO thankful for that.  His heart is beating like a champ, and he was so wiggly and active that it made me smile.  I do have a little excess amniotic fluid, but not enough to be extremely alarming or to take action quite yet. (no wonder I feel huge) Keep praying for him because he needs it. We need it. We obviously want the hydrops to resolve themselves so he can live a happy, healthy life.  I still have hope and faith and as long as he is still fighting, so am I.  

It has taken me this long because I was actually admitted into the hospital Monday at my appointment due to high blood pressure.  I wasn't discharged until around 9pm last night, so I am thankful to be relaxing at home today and getting to write this blog.  They did labs and everything came back normal, and shortly after I was admitted my blood pressure dropped significantly.  It is definitely something that we will have to monitor very closely and daily to keep me and baby safe.  If you have one any research on hydrops, you have probably heard the term "mirror syndrome". 

" What is maternal mirror syndrome? This problem occurs when a pregnant woman has fetal hydropic, which is abnormal accumulation of fluid in two or more fetal compartments. The disorder gets its name because the mother suffers the same symptoms as the sick fetus. She will become ill and have signs of preeclampsia: water retention, high blood pressure and protein in the urine. When this happens, doctors monitor the mother for maternal mirror syndrome. The syndrome is dangerous for both the expectant mother and her fetus. There have been cases in which the fetus died."

Don't freak out, people.  I do not have any of the other symptoms and my labs all came back clear.  This is just a precaution to what can happen with a baby that has hydrops.  My doctors are taking great care of both of us and all is well.  I feel great! 

So, it has been quite a roller coaster the last couple of days.  There has been high stress and anxiety all around our household.  (and also extreme boredom sitting in a hospital room by yourself, ha!)  SO, keep praying for us all.  We need to make it much more further for baby Lincoln.  

I have been overwhelmed, in such a good way, with Facebook comments, shares, text messages, cards, and friends coming over just to visit.  We appreciate it so much.  Without all the prayers and support from all of you, we would have a much bumpier roller coaster.  Special thank you to Tahnee, Krystin, and Tricia who sat in the hospital with me Monday night.  It really meant a lot.  You all mean so much to us and we are SO blessed to have this prayer circle.  God is good! 

Lincoln

Lincoln Eugene Burkhead. 

That is his name.  Isn't it wonderful? Kenny and I had made a list when we found out that we were having a boy and that name was on it. I woke up on Thursday and just knew that's what his name was going to be.  God telling me somehow that THIS name is his, and it is beautifully perfect for him. 

Tomorrow marks exactly a month since the first appointment we got to see him.  This brings up so many emotions that we have gone through throughout this month. At that appointment exactly a month ago, we were told that there was a very high possibility that our child had a chromosomal disorder of some sort.  They found this out by seeing what they call a cystic hycgroma on the back of his neck.  To put it in terms so people like me understand, he essentially had swelling on the back of his head and neck that was outside of the normal range--which is one indicator of Trisomy 21/Down Syndrome.  I was immediately labeled "high risk" and from here on out, I will go to KU Med for any and all of my appointments.  If anyone reading this has been through that sort of situation, then you know how scary it was.  We decided to get an amniocentesis immediately.  Two weeks later we got the results back and found out that he was perfectly normal in terms of having any chromosome issues and/or viruses.  We were very relieved and celebrated with tears (and also a night watching Game Show Network and laughing for the first time in what felt like forever.  We are so old, but it was fun).  

That is how it all started…


We went back to the doctor on Monday, February 10th and were expecting a very good visit after the news we received.  Needless to say, we were excited to see him again.  What we found out at this appointment is much more serious then down syndrome.  We were told that our precious baby boy has a condition called "hydrops fetalis".  This is a very serious condition in which fluid accumulates in two more of the body cavities.  It is a very grim diagnosis considering there is a 60-90% fetal mortality rate with non-immune hydrops, which is the specific kind he has. (I have attached more information at the bottom about hydrops because most of you, like me, have probably never heard of it before) Unlike the appointment just two weeks before, they saw a small accumulation of fluid around his lungs, and his abdomen, and the swelling on the back of his head/neck had gotten worse.  So far, all of his organs, blood flow, and everything else is growing great and looks great.  This condition is fatal because the heart can only do so much, and it is very hard for it to keep up with all the fluid that accumulates within the body.  Not to mention there is also issues with his lungs and heart growing normally if the fluid gets worse.  

This news was absolutely devastating.  
Devastating. Heartbreaking. Unfortunate.  

Compile all of the worst words associated with helplessness, sadness, and grief and that's how we felt.  

Both the doctor and the genetic counselor (which both are fabulous by the way), gave us all of our options.  We can continue the pregnancy knowing the odds are not in our favor.  That our precious little Lincoln Eugene might die inside of me, or might not even make it a few minutes, hours, or days outside of the womb.  We were also given the choice to terminate the pregnancy.  Being 20 weeks, I was just riding the cutoff line for the state of Kansas when it comes to pregnancy termination.  As educators and doctors they had to give us ALL information regarding his situation and how we would want to proceed.  

I'm choosing life.  
I know the prognosis for this condition is very poor.  But when someone tells me my little baby has a chance, even if it's small, then I'm going to do everything I can to fight for that chance.  We do not trust in God because of statistics and probability.  We trust in him for MIRACLES.  This isn't in my hands, or Kenny's hands, or the doctor's hands.  It's ultimately in his hands.  

I have decided to share our story with all of you because it is very important to us that people remember that our very sweet Lincoln IS alive and that your words of encouragement and prayers for us are directed at him and his ultimate journey, and also ours.  I do NOT want people to give up hope and I want you to continue to have faith that our Lincoln will survive this.  If God chooses to take him up to heaven, I want him to go in peace knowing that so many people loved and cared about him. 

We have not been keeping this a secret to withhold information from any of you.  We have both been dealing with this in our own ways and have decided this is the best way to get information to you all on this journey we have only just begun.  I know you all care for us so much and I'm sure there are a lot of questions.  I will do my very best to keep you all updated on little baby Lincoln. 

It is hard to express in words to those who have not experienced it quite yet…but I carry within me this beautiful boy who has a heart beating so strong and strong legs that kick me to remind me he's still in there (especially when I eat pickles).  I have loved him since I saw those little lines that said POSITIVE, more when Layla and I got to hear his heart beating for the first time. More when we got to actually see him wiggling around and quite proudly showing us he was a boy on the ultrasound.  And my love grows for him every single day.  This diagnosis is painful, but my love for him has not changed.  If anything, it has shown how strong it is and how much I love him no matter what happens. 

Love.  At least I can say I gave him all I could give.  

Please be praying and don't lose hope in our little boy.