Post Doctor Visit

It has been three days since our doctor visit on Thursday, and I feel that we have taken a few steps backwards. After spending two hours in the ultrasound room and having the doctor come back twice to get a better look at things, I have lost a little bit of hope. The ultrasound doctor gave us a copy of the problems they found on the ultrasound to give to the palliative care team when we meet. Mark and I have obviously prepared for the worst, but hearing the words come from our doctor were very hard to take in. My heart sank when we heard some of the problems described. Of course, we are still praying for a miracle that we can somehow bring little Adalyn home, but now I am not so sure that is what God has in mind for our baby girl.

One of the findings on the list was that she has a hypoplastic left heart, meaning that her left side is smaller than the rest. When Dr. Goldman explained to us that the left side is the most important and that it pumps blood to the rest of the body, we knew it meant that it was bad. They also found some things that suggested dandy walker malformation, which means that parts of the brain are not formed correctly, and Dr. Goldman said he thinks that the connection will not be there because of it. They also said there were abnormal findings with the face and head, but we are not sure what all the big words mean. Hopefully when we go see the palliative care team they will be able to explain them better. To sum everything up, some of our worst fears came true on Thursday. 


Again, I feel so angry and I have been asking over and over, why us? I have been wanting to be a mother for as long as I can remember, and the past seven years of my work career and life have revolved around children. The Lord knows how much I love children, and to think that He would do something like this to me just seems so cruel. But again, Mark and I have been reminding each other that there IS a reason for this, and He gave us this precious child for a reason. Adalyn is already such a blessing to us and we are enjoying each and every moment with her for as long as we have her with us. Each and every kick or movement I feel I treasure because it reminds me that she is still alive and kicking, just like the soccer player we had predicted her to be.


My mother-in-law is up visiting us right now, and she has told us the positive impact that Adalyn has already made on lots of people. She said that friends of friends are praying for us and that a friend from church is using our story in her high school classroom to help teach a lesson on the real value of life. This has helped us to restore some hope, knowing that our precious angel has already made some type of impact on others. Maybe someday it will save another child's life, if another mom reads this who is in our situation and decides not to terminate her pregnancy. Or maybe it will help people to see how valuable life is, and to enjoy each and every moment you have with the loved ones around you. I know that Mark and I will be forever changed by this, and that one day when we have healthy children we will appreciate every second we get with them. We will also tell them the story of their sister who they will someday meet, if she does not get to meet them on earth. We will all be stronger from this, and will do our best to use this for good the rest of our lives. I hope that if you are reading this, it helps you see life a little differently and to appreciate the loved ones who you are blessed with and to enjoy every second you get with them. I know that we will.

 

Preparing for our appointment tomorrow..

20 Weeks, 6 Days:

Tomorrow is my first prenatal appointment with Dr. Goldman since we received our news. I feel bad for the guy because I feel like I have a zillion questions for him. Hopefully we will get some more answers to help with this process. We are also scheduled to get another ultrasound before the appointment, and I am more nervous for this one than I have been the whole pregnancy. I keep telling myself that nothing can happen that I have not already expected, but it is so scary. One of the problems with T-13 is that the two hemispheres in the brain do not form, basically making the baby brain dead. I feel that if we get this news, we are going to take 100 steps backwards. Right now, things are going well, and I have learned some things about myself that I had no idea of before. One, I am a lot stronger than I gave myself credit for. No one would ever imagine that they would ever have to go through this, but when we received the results about Adalyn's diagnosis, I have been thinking things that I never would have thought that I would have. Despite all of this, I have somehow been able to find peace and a positive attitude. This would not be possible without my faith, and especially my amazing husband. After 10 years of being together I thought I knew him so well. I have found out though how strong he truly is and how big his heart really is. He is the one that reminds me everyday that things are going to be okay, and that we are going to enjoy each and every moment that we get with Adalyn, even if it's only another few months. Without him, I do not think I could get through this. If you are reading this Mark Daniel, you are my rock and my world... thank you.

Another thing that I have discovered is how loved we are. The people that have stepped up to show is how much they care about us have been amazing. No one is quite sure what to say to us, but I tell them the thing that matters the most is that they are there. We do not need words or physical objects, what we need is the comfort in knowing that we are not alone, and that we have people praying for us. That is what gives us strength. In the past couple weeks I have found it very hard to sleep, because my mind has been going a million miles an hour. One thing that has crossed my mind constantly is, am I going to have to bury my daughter? The thought that she may get through this gives me hope, but on the other hand, I can not stop thinking that I am going to have to plan a funeral or some sort of memorial for our daughter. To think that I may have to watch her die or that she will not be born alive is what scares me the most. No parent should EVER have to bury their children. They should be burying their parents at an old age. But, for some reason, God has chosen us to go through this. Pastor Cynthia helped me to have some peace with this subject, and told me that when the time comes, we will know what to do. Somehow I know that this is true.

I have been reading another blog about a mother and her daughter that has Trisomy 18, which is similar to T-13 but what we have is less common. The baby's name is Nora, and her mother has documented everything from the moment they heard the terrible news. Her blog is what gave me my inspiration, and I can only pray that as much positive influence comes from this as what has come from hers. Her blog is titled "I Will Carry You" and those words are what I have been using. To think that I have chosen to save my daughter's life and to love her unconditionally, is what gets me through this. I will continue to post my experiences and emotions in hopes that good things come from all of this. 

Here are a few bible verses that I have found helpful in this journey so far:

Jeremiah 29:11

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

 

Isaiah 40:31

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

 

20 weeks, 3 days: Finding Strength

20 weeks, 3 days:

It has been almost two long weeks since we got our terrible news, and somehow I am sitting here in a positive spirit writing this. We never realized how much we are loved and cared for, until people started hearing about our sweet angel's diagnosis. Words can not describe how helpful it has been to know that we are loved and that even though no one has met Adalyn yet she is extremely loved. The phone calls, emails, and messages that we have received expressing care and concern have been overwhelming. No one has known quite what to say to us, so we just tell them that simply knowing they are there for us is what matters. That has been what has kept us going.

Although we have only been in Boston 7 months, we have created relationships with people at our church and I feel that we have a family at Grace Chapel. On Thursday we met with Pastor Cynthia, one of the senior pastors at Grace, and she was able to give us a better perspective on our situation. Of course, Mark and I have decided to continue with this pregnancy and enjoy the precious life that we have been blessed with, and she was able to help us feel better about our choice. No one ever wants to think about their own child dying, especially before they even enter the world, but that is one of the things that crosses our minds and conversations often. I explained to Cynthia how angry I am at God for doing this to our child, and that I have been jealous at the other pregnant women I see and the families that are able to run around and enjoy their children. What she said next made me realize that it is okay to be angry and I should not feel bad. She said "You're human, it is perfectly okay to be angry." 

Over the next hour of talking to her she helped us to see a new light. She reminded us that Adalyn is a child of God, and that if and when He does decide to call her home she will be in a place of peace and comfort. We know that one day we will be reunited and will get to spend an eternity with her. As much as we would love to spend more time with our sweet angel on earth, we know that one day we will see her again, and that we will enjoy each and every moment that we have with her from now until then. When Cynthia told us that she did not think that she would be able to handle our situation as well as we have, it made me feel better. We have had several people tell us how brave and how proud they are of us for making the choices and handling this the way that we have. Our genetic counselor, Pam, called me on Friday to see how we were doing and told me that she is just so impressed with how we are handling it. She said that we are handling everything much better than most people, and that really helped to hear it. Mark and I had decided that no matter what we would make sure something positive comes from this, and hearing people tell us that makes us realize that we are on the right path to our goal. 

Tomorrow, I am calling Dr. Goldman to set up another ultrasound so that we can meet with the palliative care team at BWH. The palliative care team consists of doctors and nurses that are trained for these situations, which is basically a hospice program. We are going to prepare ourselves for the best and the worst scenarios, and hopefully it will help us get through everything to the best of our abilities. We are planning on bringing Adalyn home, but if the Lord calls her before that then we will be as ready as possible. 

Pastor Cynthia quoted some verses out of Psalm 77, which the poem Footprints came from, and related it to our situation. After I went home and read the whole thing I will continue to go back and reference this Psalm. It talks about crying out to Him and wondering if He hears these cries, but then it goes back to remembering all of the miracles that God performed back when Moses was alive and that He is still an awesome God. In some way, a miracle will come from this situation.

Here is a verse:

Your path led through the sea, your way through the mighty waters, though your footprints were not seen. Psalm 77:19 NIV

...through the darkest days of my life…..where were you God…..I only saw one set of footprints in the sand…..where were you God….those were the times, my child, when I carried you…….

The Day Our Worlds Turned Upside Down

Our Worlds Have Turned Upside Down..
 

When I first learned I had endometriosis last summer, I thought to myself: "Will I ever be able to get pregnant?" Then, in January, we were so shocked and excited to find out that I was pregnant! We could not wait to tell our family and friends! Everything seemed amazing until we went to our 12 week ultrasound and the doctor's words were: "There's a problem." 

No one wants to hear those words. My heart sank and I immediately began to worry. In the corner of my eye I saw Mark take his hat off and put his head down. The next few minutes were really hard to listen to. The baby had swelling behind the head and neck, which could have been a sign of a chromosomal abnormality or that there was a virus. The doctor told us that if it was a virus the baby may not make it, or that if it was an abnormality it could be serious. We were so scared and did not know what to think. 

When we went back a week later for another ultrasound the swelling was almost gone. We felt so relieved and thought our prayers had been answered. Then, when we went in for our "routine" 18 week ultrasound things got worse. The doctor found some small "markers" that could have been nothing, or they could be a sign of something wrong. Even though we had said we were not going to get an amniocentesis done because of the risks, we decided to get it because we could not wait the rest of the pregnancy to see if everything was okay. This is where our worlds were turned upside down... 

On Monday, May 7 we received a phone call telling us the words that we never wanted to hear. Our sweet child had Trisomy 13. We had only briefly heard of what this disorder was, and the few things that we knew were that most babies do not make it to birth, and if they do most of them do not survive long past it. The world started spinning when I heard those words and I was in total shock. Mark and I both left work early and spent the next few hours crying in each others' arms. After we were able to pick ourselves up off the ground, we began to do some research. I will not list all of the problems that go along with T-13, but here is a web site that will tell you more: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002625/. The main thing that stuck out to us is that over 90% of babies die within hours or days of birth, and that over 80% do not make it past the first year. 

To think that we may have to watch our child die is the hardest thing that we could ever imagine. Of course, the doctors brought us in to discuss our options last Friday, and the main option was having an abortion. Mark and I have spent hours discussing this topic, and had already decided that this is all God's plan and that if He chooses to end our sweet child's life early, then that is His call. We could not go through with an abortion, and have decided to carry this pregnancy to term and pray for a miracle. Trisomy 13 is probably one of the rarest chromosomal disorders that anyone could possibly get, being that it occurs in only 1 in 10,000 newborns. Mark and I have been asking, "why us?" How could God be so cruel to do something like this to us. But then we began to tell ourselves that He chose us for a reason, and that He has a plan for this sweet child's life. Something good will come out of this, we are just not sure how. So, after meeting with our genetic counselor on Friday, we decided to find out the sex (I was already 99% sure it was a girl from the very beginning). Therefore, we were not surprised when they told us we were having a girl. We had already agreed on a name, and decided to name her Adalyn May. This is where our journey begins...