Embrace. Gratitude. Thanks.

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.” ― Thomas Merton

It is about time I update you all on Lincoln.  Last week, after my last post, I got a call from my doctor saying that they have a possibility of doing a procedure on him while he is in utero.  SO, I went in to meet with another doctor and see what we could do.

They think they found the cause of the hydrops that has consumed our sweet little baby.

According to the doctors, there is an extra vessel that is stemming off of the abdominal aortic valve.  It is going up through the liver and connecting with the umbilical vein.  Like I said, this is an EXTRA vessel that should not be there.  It is circulating blood around, causing the heart to work extra hard; hence, the hydrops.  The doctor wanted to see if he could get in there and shrink the vein so that the flow of blood would decrease and the hydrops would then resolve.  Unfortunately, the placement of the baby, and the fact that there are so many other very important veins and life lines right by it, they decided (after looking for over an hour) that they just couldn't perform the procedure without ending Lincoln's life.

This was just heartbreaking.  We had so much hope in this ONE thing that they thought they could do. Instead, they told us we are "nearing the end".

This week we have gone in twice to see how he is doing.  He is still stable despite the hydrops getting much worse.  I still have a massive amount of amniotic fluid (I am measuring full term right now), my blood pressures are fine, and my protein is fine as well.  At this point we don't have many options or interventions to help him.

If you know me, you know I tend to ask a lot of questions.  I asked her what the chances are of this happening again and what went wrong.  Often, I blame myself for this sweet precious baby.  Did I do something wrong? Why couldn't my body take better care of him? I feel so helpless as a mom, it is just an awful feeling. Many tears have been shed, many prayers have been sent. The doctors believe it was just one tiny little thing that went wrong very early on in his formation that caused it.  We have had all of the chromosomal, genetic, and viral tests and all of them came back perfectly normal.

We don't know why things like this happen in life.  Why would such a little soul have to go through so much? What I do know is that this isn't my plan.  It's HIS plan.  No, I don't understand.  But what I do understand is that this, as awful as it is, is part of a much bigger plan for me, Kenny, and Layla and everyone else affected by this.  It is very hard but I am trying to embrace the situation that I am in.  Embracing that I cannot change what has happened, and embracing his little kicks and movements that I still get to share with him.  I am also constantly reminding myself to search for gratitude.  It is easy to dive into self-pity and depression, but there are still things to be grateful for.  I have a beautiful family, the best friends a person could ask for, and I do have this little baby growing inside of me.  All of those make me smile and I am grateful for all of them.

Thank you to everyone who has stopped by to just hang out, the cards, my mom for staying here for a whole week and helping out around the house, and all who have come to one of my doctors appointments.  I know you all probably feel helpless too, but just getting your text messages, Facebook posts, calls, and all else is VERY appreciated and it IS supporting us.  Thanks for all the prayers, positive thoughts, hope and faith.  We are feeling it, and God is hearing it.

Kodyjo

There is always hope. 

I carry your heart

I guess I'll start off by saying that today was a very hard day.  

We had another appointment today regarding Lincoln.  Unlike the last post, things have gotten somewhat worse.  The fluid around his skin has gotten significantly worse, and the fluid around his lungs has also gotten worse.  They found some fluid in his abdomen as well.  Not a significant amount, but the fact that it's there isn't a good sign.  There isn't fluid around his heart which is good, and it's beating nice and strong.  Blood flow throughout the body and to the brain is also good.  My doctor noticed today that the placental blood flow is still normal, but it's on the outer end of normal and she predicts that it will become abnormal in the next few weeks.  Which means that he will need to be delivered within this month (most likely) if we want to proceed with aggressive treatment.  

Now most of you know, I am not very far along.  I am currently 23 weeks. The doctor said that right around 24 weeks they can deliver babies and have an outcome of survival. That is also with HEALTHY babies, and we know that little Lincoln is a very sick little boy it seems.  So the outcome is very slim that he will make it if he comes out this early.  This news is very grim and very scary.  To put it all into words is much harder then how it feels.  

SO, what are we going to do? We are going to take things week by week.  Of course we hope that the placental blood flow will continue to stay normal so he can stay inside and grow as long as he possibly can.  The longer he grows inside, with good blood flow, the better.  We have spoken to the neonatologist about how we want to proceed once little Lincoln is out, whenever that may be.  

We are still hoping and praying and relying on faith.  Are we discouraged? Yes. Scared? More then ever.  I read daily about these precious miracle babies that survive hydrops and I also read mourning families who have lost their babies on this helpless journey.  

I have cried a lot of tears today and in the weeks past.  I have prayed so much and begged to God for a miracle. But sometimes I just need to see clearly that God has his hands in everything.  Even the things that we want and hope for sometimes aren't in his master plan.  Don't take that as us giving up, because that's surely not the case.  I just ask you pray for Kenny and I to find some peace in the process.  

Wanted to give a very HUGE thank you to all of those who were involved in the plant, card, picture, and gift cards that were delivered to our house this past weekend.  Also to those who have sent cards, made goodies, and very generously given us cards to go out to eat.  You all are so thoughtful, generous and kind and a thank you does you no justice in how much you all have touched our hearts.  We are forever grateful for not only the monetary things, but also for the prayers and thoughts.  I hope someday we are able to be there for all of you half has much as you all have been for us. 

Little Lincoln has been kicking this whole entire time I have been writing this blog which tells me he is alive.  Right now, he's a growing baby boy that just needs lots and lots of love.  He carries a piece of my heart.  

Lots of love,

Kodyjo

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.