A few pics

my mom made all the bedding!

18 weeks21 1/2 weeks

23 1/2 weeks

November 18th update

You know when you go to the dmv and wait in a line only to find out you are getting a number to stand and wait in another line? In some ways that is how I feel right now, although we got some answers this week there are still a lot he was not able to answer and a lot more questions we now have.  I’m still trying to process everything so bare w me as you read this email it may be a little scattered.

We met with the specialist here Dr. Bennett on Wednesday. They did another ultra sound, and everything is showing normal besides the tumor.  Afterwards we met with him and his nurse to discuss the plan on action. Dr Bennett has done 4 other exit surgeries , and we would be the first at Children’s Mercy (the high risk delivery unit just open in March) The top hospital for exit procedures only do maybe 1 surgery every 4 months, he said you would not find a Doctor who has performed the producer more than 20 times.  He repeated many times that an exit is not like a c-section, it is extremely more risky for the baby and for me. There is a good chance for bleeding out for the both of us plus the level of anesthesia they put me under is extremely high.  As well the healing on the body is a lot harder.

He has some concerns about doing the exit. He is concerned that the mass is too big and therefor the risk of the surgery out ways the likelihood of them being able to successfully remove the tumor as well as not knowing the cause of the tumor. The tumor has grown some sense the last ultrasound enough that he wants to monitor it closely but not enough that he is concerned yet. He had not been able to review the MRI that had been done in Boise and without talking to some of his colleagues he did not want to make a definite recommendation. I will have another ultrasound as soon I come back in town as well as another MRI to try and better see where the tumor is starting.  The next thing is the placement of my placenta, on the front. If it stays where it is at then cutting would be very tricky and may be impossible to do successfully. As the uterus grows the placenta should hopefully rise higher allowing them to cut.

There are three options that he discussed. First is that we will move forward w the exit here in kc that is the plan that we are going with. He is currently putting together a team and will have all of them look over the results and discuss, when Chris and I come back we will meet with all of them for a more detailed plan. He also wants me to have weekly visits to monitor the fluids and the baby. As for now he wants to wait till around 37wks (early to mid feb) to deliver bc the need for the lungs to grow.  If they can get an airway established they will wait to remove the tumor till they baby is stronger. Chris asked for a time line. He said that a month of recovery for the baby would be extremely optimistic and we should look at a few months at best but they will not know for sure till the baby is born. … the second option is if after they review things he or any of his team feels it is above their ability he would send us to another hospital, Cincinnati or Philadelphia , he would set up everything and still work w those hospital. … the third option is that I delivery naturally and spend the few days w the baby. This would be because they feel that even with the exit procedure the baby would have little to no chance of survival and therefore putting the baby and I in a lot of pain and risk would not seem right. Dr Bennett is honest and up front he does not feel like this is where we are headed but he did feel strongly that it needs to be considered because of the situation.

Like I said I am still processing all of this. We have a lot of planning and organizing to do over the next couple weeks. Chris will not be student teaching next spring, his schooling will be delayed and the earliest we will be back would be may ish we think.

Please continue to pray for the wisdom of the team. Please pray for a miracle. And please continue to pray for the baby. I am ok with people asking questions, not sure I will know the answer but I am ok with talking about it. We are also not keeping anything a secret, the more people to pray the better! Thank you for all your support!

October 20 update

They say you will do anything for your baby and that has proven to be so true in this pregnancy! Most of you know that I started out this pregnancy rough; kidney stones, lost 20 lbs, have hyperemesis, have a picc line and have been on daily fluid bags for a little over a month now. I haven’t worked sense june and actually quit my job last week because I have still been having complications. 


       I am asking for prayers and this is why. Last Thursday we had our first Ultrasound. The baby is measuring larger and all of its organs are growing and look to be very healthy. However as they were doing the ultrasound they saw a huge mass coming out of the baby’s mouth forcing the baby’s mouth wide open blocking anything in or out of it. The baby is ok now because it gets all of its food and oxygen from the umbilical cord. The huge concern is when they baby comes out and if the mass is growing. After having many test including a MRI which I practically had a panic attack in and the specialist here talking to many hospitals and doctors this is where we are at. The mass shows to be a tumor (I believe a teratoma) but from what they can tell it is not cancerous, they are pretty sure that the mass will not grow anymore but having only done one ultrasound they are not totally certain, they will be monitoring it w somewhat regular ultrasounds. The tumor seems to be attached to the roof of the mouth or to the gum/lip line. So long as the tumor does not grow we will stick w a somewhat plan to wait till close to the due date. The specialist will have to perform an exit procedure, this is when they do something like a C-section but they keep the baby still fully attached to me as they perform the surgery on the baby to remove the tumor. The placenta and umbilical cord must stay attached to me and the baby if I go into labor (ie water breaks, contractions start) this could be serious for the baby bc it needs a way to breath. We will probably deliver then at around 36 weeks. This procedure is risky and only certain hospitals do it, therefore we will be having to travel out of state to deliver the baby. Our doctor has done research and narrowed down two cities Kansas City and Dallas. We will be traveling to KC in the next couple weeks to meet with the specialist there, we will either discuss with the specialist in dallas over the phone or we will drive down there from KC to meet with them. 
      
       "O Sovereign LORD, you alone know." (Ezekiel 37:3) I feel very confident that God is guiding us and that is plan will prevail, even though I am not sure of his plan. I can see how God has already been protecting us and preparing us for this time. It makes me sad to know my baby can be hurting but we are willing to go and do anything for this little thing. I am asking that you guys pray for us and the baby. That you pray for clarity as we decide where to go, pray for the doctors that they have wisdom and a steady hand, pray that I do not for some reason go into early labor, and mostly pray for the baby that there is no long term effects and that the baby will be healthy and safe.

The need to Blog!!

I’m not a blogger, matter fact I really dislike blogging. I like reading others blogs but never thought I would do one of my own. Chris told me he thinks we should start a blog about the baby my response was nobody wants to read a depressing blog, he said yes they do! Ha well after thinking about it and thinking how I am constantly trying to remember who I told what to I agree with him on writing a blog. So please bare with me through my grammatical errors and random thoughts...

I know I said it would be depressing but I hope that it is actually the opposite. I hope that we can all find strength in God and that our faith will deepen.  I am constantly thinking about these two scriptures; "O “Sovereign LORD, you alone know." (Ezekiel 37:3) and “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.” (Psalm 139:13-16) How can I read these scriptures and not believe that God is present that he is working and that he knows what is best? I am completely confident that God has been working this whole time and putting together our life for this baby. I don’t know what God’s plan is and I am cant say that his plan will be easy and that everything will end “great” because God does not promise to give me my plans or to guide us towards our wants but he does promise to give us what we need and to protect us.  So I pray to God for comfort and I pray to God for miracles and that Chris & I & the baby may all feel his love.  

I will try to update this blog as we get news. Some of the blogs I will post now are letters written a while ago but should bring you up to date. Please feel free to ask questions, we will do our best to answer them. This is a hard time but even more so this is a time of celebration for this bay of ours!

Please keep praying J