How the Adoption Process Works

From what I have read and already experienced, a lot of the adoption process is hurry up and wait. Pre-activation is long, full of deadlines and you are constantly trying to schedule things and finish things so that you can then wait for them to be created/reviewed and then we hurry up and proof them and wait for them to be live. Now that we are active… we wait. We wait for “the call”.

When discussing this process in person I realize that people don’t know what to call who so here is the appropriate terminology. Before the baby is born we refer to the mother as the expectant mother (EM). After the baby is born we refer to her as the birth mom (bmom). Don’t ever refer to her as the “real mom”. 

Part of the pre-activation period is filling out your Adoption Planning Questionnaire or APQ. This is a huge part of the process and this is what they use to match you to expectant mothers (EMs). This is where we state our budget, race we would like to adopt, age of baby, amount of openness we are comfortable with having with the birth mom (Bmom), if we are comfortable with any substance abuse from the EM and how much, what family medical history we are OK with on the EM’s side and other misc. questions.

When a EM comes to the agency she fills out a similar APQ with her information. The computer then pulls profiles that match our APQs. The agency then shows the EM profiles that match the APQ and she will pick a family.

The more open you are on your APQ the more your profile will be shown and the quicker you will most likely be matched. For example, if you were open to any race you would obviously be shown to a lot more EM than if you stated you only want a 100% Caucasian baby. We were pretty open with contact with Bmom and budget, so it makes up a little bit of our choice to have a 100% Caucasian baby.

Once a EM picks you it’s called a match. A match can be a 5-month match, a 5-day match, a mom is in labor right now get your butt here match, or baby was just born, congratulations you have a child match (called a stork drop). You have to be ready for them all! When they call you and tell you the EM is in labor or baby was just born you have 24 hours to get there. The baby can be come from anywhere in the US.  I LOVE this Southwest commercial!

Ideally, they like to match you with a few months left in the pregnancy. That way you have time to prepare and to develop a relationship with the EM.

As far as what EMs are looking for when picking a couple, it is different for everyone. Some say the couple reminded them of their family, or looked like their brother or dad, or they liked that they travel. Some might like that we have a child already, but some might want a couple that doesn’t have children yet. You never know why you will be picked so they stress to just be yourself. A common phrase in the adoption world is “your baby will find you”. You are waiting for YOUR baby not just a baby and when your baby does find you it will all make sense.

Unfortunately, some matches fall through because the EM decides to parent the child, and these are called disruptions. About 20% of matches end in disruptions. Usually before the baby is born but sometimes not till after. For this reason, lots of people like stork drops because even if it is disrupted you only knew about the baby for a day or a few hours. Long matches are hard because you could end up waiting 5 months only to find out it was disrupted, and you have to start all over. Honestly, I would 100% prefer a stork drop! How fun to just get a call one day that you have a baby on the way!

Once you are matched and the EM goes into labor you get a call. You have 24 hours to get to the hospital. Every state is different but the Bmom  must wait, on average, 24-72 hours before they can sign papers to terminate parental rights (TPR). Again, every state is different but, in some states, this is irrevocable once signed and in other states the TRP is revocable for a short period (maybe a week depending on state). After TPR and the irrevocable period is over the baby is officially and legally yours.

Following TPR you have to wait for Interstate Compact for the Placement of Children (ICPC) to clear.  Interstate Compact is each state’s review of all adoption paperwork and documents to make sure it is in proper order. Once the paperwork is reviewed, both states involved in the adoption (bmom state/adoptive family state) provide their approval of the ICPC paperwork before the adoptive family can take the baby out of the state where the baby was born. So generally, families need to plan to stay in the baby/birth parent’s state for 2-3 full weeks. It could be shorter or could be longer. You can go anywhere in the state (after TPR) but you can’t cross the border. Once ICPC clears you can bring your baby home!

I hope this makes sense. It’s a lot of information and if you were like me, and knew nothing about domestic adoption, it’s kind of like a new language! 

Adoption

I started to think about adoption while I was still pregnant with Grayson. We didn’t know what Grayson had but it was clear it was hereditary, and I knew they might not figure out what it was, which would eliminate the option of IVF. I knew I needed to keep my options open and that I would do anything and everything to expand our family. I didn’t do much research before, but it was weighing heavy on my heart. After we lost Grayson and Dr. Shinawi told us what he thought he had we were excited to have more options, but I had two problems. 1. Our doctor wanted us to wait 1 year to get pregnant again because of my cesarean section and 2. If we did IVF I would have to be pregnant again. A year to try again seemed like forever. We had already been trying to grow our family for 2+ years! But the thought of being pregnant again, any sooner than a year ,made me sick to think about. It was very clear that adoption was the answer. We could continue to work on growing our family while following the doctors 1-year restriction and I could take some time off from growing humans.

At the end of October, after much research, we joined our agency. Joining the agency didn’t involve much commitment. Once you join, and they collect a small fee, you start to learn the details of the process. We did have a call with them before joining and did have our questions answered as far as cost, timeline etc. but after joining we were mailed a large packet and 250+ manual of the real details.

When we joined in October I was excited about the idea of adoption but was so clueless to how the process worked and not knowing is scary. I live for recommendations and asking people their experiences before choosing a doctor, a restaurant, a brand of yoga pant. So, choosing solely on my own research and having no one to talk to was hard and scary! The commitment level once we joined was minimal and we weren’t too invested financially, so I was OK with this fear. Our next step was to read the manual and have another call with the agency. Scott and I took our time and didn’t feel any need to rush. It was fascinating to read though everything and it opened my eyes to the world of adoption. But after reading it I was more scared and didn’t feel that great about the LONG process to become active. 

The beginning stages of adoption, before you are active, is building your profile. A 3rd party associated with our agency sends you a video camera and you film your life for 3 weeks along with collecting interviews from friends and a full interview from Scott and I detailing our life. We also had to do a whole print profile where we answered numerous questions/facts and wrote essays about ourselves and include 150 pictures. This is what I didn’t like. We had to market ourselves to a birth mother and hope to get picked. This was hard for me and it felt like a competition. I was able to view other profiles and videos online and it’s hard not to compare yourself!

So, we took our time, read our manual, had our call with the agency and then waited till it felt right to make the next move. We hadn’t told anyone our plans yet. We talked about it, prayed about it, and just let it sink in.  Then when we got the call from Dr. Shinawi. It was 8 weeks after we lost Grayson and he called to tell us that Grayson did not have what he thought it was and they still didn’t know what him and William had. I immediately hung up the phone and went to my computer to register for our home study. The home study was a lot more of a financial commitment and a lot more work. I needed to hear Dr. Shinawi tell me they didn’t know. If he would have told me it was confirmed, and we could continue with IVF it would have been hard to start the adoption process even though I knew that was what was best for our family. Mentally, I am not ready to be pregnant, physically I am not ready to be pregnant. And IVF is still an invasive and hard process with no guarantees. I was happy that we had a backup plan in place and happy that my decision was now super easy to make. This was, at that point ,the only option to grow our family.

Once I was 100% with our decision things started to pick up. We applied for our home study, started to gather ALL THE PAPERWORK, and made the next financial commitment to start our video profile. The adoption process is WORK! I sometimes felt like I had another full-time job. We had to get fingerprinted, apply for background checks in MO and IL, get  physicals and letters from our doctors stating that we were healthy, provide our last two years tax returns, a financial sheet that listed all our income, insurance, bills, life insurance, policy numbers, mortgage information. Provide copies of our SS cards, birth certs, marriage certs. We had to get our home ready for a home study – our house is really safe now! We have a fire extinguisher, carbon monoxide detector on every floor, and a second story fire escape latter!

The first person I told about our plan was my mom and it wasn’t easy. I don’t know why but it was hard to make our little secret public. Maybe because it was making it real. Lots of people had been asking me if I had heard from Dr. Shinawi and I would say no. I don’t know, I just needed time to process it all myself before I told people. Once I started telling people I felt better about things. It became more real and less scary.

After several calls with our family coordinator at the agency and visits with our social worker I started to not only feel good about things but excited! I joined a Facebook page for families in our agency, Googled everything I could about adoption, searched and read blogs and adoption stories, looked for articles on Pinterest and bought books to read. I honestly felt like I did when I first became pregnant with Abby and wanted to read every pregnancy/birth story blog/book I could get my hands on.

I think what got me most excited was one thing our social worker said during one of our home study visits. She said, “this is going to work for you”. I don’t know why but I still had this fear that at the end of this we wouldn’t have a baby. We have been there before – losing two babies. At the end of those pregnancy there wasn’t a baby like there should have been. The beauty of adoption is it will work. Now, how long we must wait isn’t guaranteed, like a heathy 9 month pregnancy, but it will work. Even if we never get picked by a mother, the agency gives the longest waiting family babies from birth mothers who don’t want to pick or be involved. So, it could take a long time, but we will, at the end of this journey, have a baby.

So, after months of preparing, on February 14th, we received the email we were waiting for that we were officially active in our agency! We popped open a bottle of champagne and celebrated our first huge milestone! And the best part of being paper pregnant is I can still drink!  

Champs

 

 

Big Announcement …

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We’re adopting!

After 3.5 months of research, paperwork, home studies, background checks, doctor appointments, essays, interviews, and more paperwork we are FINALLY active or “live” in our agency and our profile will start to be shown to expectant mothers!

We have decided to adopt a caucasian newborn, domestically. Every case is different but the average wait time is 3-12 months till we have a baby in our arms.

In the next few weeks, I will be sharing with you why we decided to adopt, the process to adopt and everything I have learned along the way! We are SO excited to be paper pregnant! Now the real wait begins!

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Another Dead End

We got a call from the research team at Wash-U last week and after looking at Abby, William and Grayson’s EXTL1 gene they were able to determine that that mutation is NOT the cause. They initially looked into this gene because I had 1 mutation, Scott had 1 mutation and Grayson had 2 mutations. They wanted to see if Abby had 0 or 1 and if William had 2 like Grayson. Turns out while Grayson has 2 mutations, Abby had 1 but William had 0 mutations on this gene. So, another dead end.

The good news is that they now have all 3 of our children’s DNA and they are going to keep going through it to see what Grayson and William have in common that Abby doesn’t have. It’s frustrating. I thought this could be it. They said the next part would take another 2 months.

We are still waiting for some things to happen before we share or fun news … hoping by end of the week or next. Stay tuned … =)

Let’s Talk About Genes

It’s been awhile since I’ve updated you all! I feel overwhelmed on where to begin because so much has happened. As I try to figure out where to begin I wish I would have kept up with the blogging in real time but as much as I have enjoyed sharing our story there were just some things that we needed to process and be comfortable with before sharing. 

After Grayson passed they collected DNA to send away for testing. They told us that we would get a call in 6-8 weeks with the clinical test results. If they didn’t find anything in the clinical testing they would send the DNA away for research and hope to find something. They were also going to look at the gene for Spondylometaphyseal Dysplasia, Sedaghatian Type to see if their hypothesis was right.

If you remember, after Grayson was born we met with his doctors and they told us they thought he had a super rare form of skeletal dysplasia called Spondylometaphyseal Dysplasia, Sedaghatian Type. This was based on Grayson and Williams skeletal survey that they got after they were born. Dr. Shinawi showed us these x-rays and compared them to a case he had found of Spondylometaphyseal Dysplasia. There were lots of similarities. I saw these similarities with my own eyes.  But I knew in my gut it didn’t sound right. Call it mothers intuition or maybe I’m just used to getting bad news, but I was prepared for Dr. Shinawi to call me with bad news and that is exactly what happened. At exactly 8 weeks he called to say  it was NOT Spondylometaphyseal Dysplasia and they didn’t find anything in the clinical testing. He said when we went to Belgium for his skeletal dysplasia conference none of those doctors knew what it was either. The next step was to send the DNA to research. He said sometimes they find something in this stage but lots of times they don’t. 

 So here is what we have learned about genes. We all have 20,000 genes and health care professionals are only educated on 5,000 of these genes. The most common defects affect these 5,000 genes and that is why they know more about them. But how CRAZY is that there we have 15,000 genes in the human body that they don’t know much about?! So, when the DNA is sent to clinical testing they only look at the 5,000 genes they know. If they don’t find anything it become a research project. They comb through the other 15,000 genes and hope to find something that stands out.

So, after our call with Dr. Shinawi, Scott and I sent in our DNA. They would look at Grayson’s DNA against ours to see if they could find anything. They would call us in another 8 weeks with results.

Mid December I got a call from Grayson’s NICU doctor, Dr. Warner, and she told me she wanted us to come down to Children’s to go over Grayson’s autopsy results. She asked me when the last time I spoke to Dr. Shinawi was (the pediatric geneticist) and I told her 6ish weeks ago. She said he would be part of our meeting and we scheduled a date right after Christmas to meet. It felt like they had something to tell us, but we didn’t want to get too excited. We were used to only getting bad news. But Dr. Shinawi had called me and told me over the phone our first round of results when they found nothing so if they didn’t find anything why wouldn’t he just call me again. The fact that they wanted to meet with us with 4 other doctors made me think something was up.

The week after Christmas we went down to Children’s. The first thing we did was go through the autopsy results. Grayson’s lungs were half the size they should have been for a 32-week baby. His brain had the maturity level of a 24-week baby. Not that we questioned our decision to take him off the ventilator, but this did bring us peace that there was no way he would ever be able to breath on his own and who knows what kind of mental disabilities he would have had. He would have never had a quality life. After we went over the autopsy they told us that they combed through Grayson’s DNA as well as mine and Scott’s and found a mutation that all three of us have on the EXTL1 gene. Scott and I only have one of these mutations and Grayson has 2 (making it recessive). Since this is on one of the genes they don’t know that much about, they don’t know what to think.

We agreed to give them some of Abby’s DNA (getting a 3-year-old to spit to a spit line was fun!) and they were able to call Mercy Hospital and get William’s DNA (apparently when they do autopsy’s they always save some DNA). Now if Abby has one or none of these mutations and William has both we might have an answer!

I don’t even really remember the timeline on that call. Probably another 6-8 weeks but they will call us back with an answer. This could lead to something or to a dead end. Even if they confirm this is the mutation we still don’t really know what it is! 

Dr. Shinai’s assistant said he is obsessed with this case though. She said he emails her while he’s on vacation about Grayson. He said he has spent hours researching this trying to find an answer. He has emailed doctors all around the world trying to get answers. They will also put our case on a medical website it hopes someone will see it with a similar case. They will also open our case in a year and re-test because they are constantly learning new things about genes.

When we hear back with the results from Abby, William and Grayson’s DNA I will let you all know! Prayers this leads to something.

We do have some fun news to share and should be ready to share in the next week or two so look back for that news!

 

 

10 Days

It’s been 10 days since we lost Grayson. Lot’s of things have gone back to normal but I still think about him every second of the day (especially when I get the mail – it’s full of sympathy cards and hospital bills with his name on them =)

I didn’t know if I would keep blogging but it’s very therapeutic for me to get my thoughts out and I like my morning routine that involves this blog and coffee. Also, there were countless times I would google blogs about IUGR or Skeletal Dysplasia and it was so nice to read posts from other people, even though I didn’t know them, going through the same thing. So if someone is going through the loss of a child they can read what I am going through 10 days out.

At this point the worst part is seeing people who knew I was pregnant but didn’t know there were complications. Like my nail salon, hair person, other moms at Abby’s school, gymnastics or dance class. People who ask if I had my baby and I have to awkwardly tell them, while fighting back tears (sometimes unsuccessfully) , that I did have him but he didn’t live. A situation that just makes everyone uncomfortable and then where do you go from there? You can’t just change the subject to the weather. I can usually get the majority of those awkward conversations out of the way early on but there will always be someone I see months later who doesn’t know.

There is also the awkwardness of me still looking pregnant. A worker at the grocery store asked me when my baby was due on Sunday. I told her I just had a baby. She asked me what I had, what we named him and when he was born. When I told her he was born last week she was surprised I was out and asked if the baby was home with Dad. I smiled and said yes. Honestly it was kind of fun to say his name and pretend he was at home with Dad. And then I got in my car and cried. I’m looking forward to cooler weather so I can wear cardigans and baggy sweaters to hide my post-partum tummy.

I think the pain of loss is similar to the pain of childbirth – you remember it hurt but you don’t remember the actual pain. I remember being really sad when we lost William but I don’t remember it hurting this bad. But I also know that some days are better than others and eventually you will have more good days than bad.

Lots of people have asked me though this journey if I’m mad at the doctors for misdiagnosing William. Their mistake cost me the loss of another child. And honestly when they told me at 20 weeks with Grayson that William was misdiagnosed I wasn’t mad because it gave me hope. What they thought William had was lethal – the name literally meaning death baring. When they said that was wrong I thought Grayson had a chance.

Now that we have an answer and know that it is still lethal am I mad? I’m not. I just don’t even know who to be mad at and I honestly don’t have the energy to put into it. I have always believed that everything happens for a reason and I still believe that the case. I very strongly believe that Grayson had a purpose during his very short life and if all the things that we thought went wrong, went the right way, he would have never been born. If William wasn’t misdiagnosed, if the CT scan would have been approved before 24 weeks, Grayson probably wouldn’t have been born (by the way – the CT scan was finally approved the day Grayson died). I believe I ended up at Barnes for a reason too. I loved mine, and Grayson’s, doctors at Barnes. Barnes/Washington University is also a well known research hospital so the perfect place for me to have a baby with an extremely rare disorder. I know they will continue to look into our case and learn from Grayson and William and in the end help other people. Help so no one else is misdiagnosed and told they can have more children worry free.

After we lost William and learned what he had, we had something to look forward to. We knew we wanted to wait a bit but that we would continue to grow our family when we were ready. This time it’s different and there is still so much unknown. I don’t like unknown – I like plans! Now we wait for answers and figure out how to grow our family. I’m not sure what that is going to look like but I know Abby needs a sibling!

 

 

Starting Our New Normal

We buried Grayson yesterday with William. W and G are both buried with my Grandpa on my moms side. Infants can fit at the head of the plot so William is at the head of my Grandpa and Grayson is at the head of my Grandma, who is still living. We’re planning on Scott and I living for a long time so when we were going through this with William, we liked the fact that he wouldn’t be alone. And not that this was a factor, but the cemetery doesn’t charge you anything to bury infants on family plots since they fit at the head. We only have to pay for the engraving. The funeral home doesn’t charge you anything either.

Abby is doing good. Luckily, her day to day routine never changed. She still brings up Grayson but not too often. She will say things like “maybe you can buy a pair of shorts like this for Grayson” or “maybe Daddy can stay with Grayson and you can come with me”. I then remind her that Grayson isn’t here anymore and isn’t coming home and she’ll say “I know, I’m just pretending”. Still breaks my heart. But at the same time I don’t want to pretend like he wasn’t here so I am happy to talk to her about him.

Today we go back to “normal”. The Fortkamp’s went home yesterday afternoon, Scott went back to work this morning and I am bringing Abby to school. I’m not really sure what I’m going to do while she’s gone! I haven’t had a day to myself since she started school. My days were filled with doctors appointments… now I have free time. Maybe I’ll start making dinner again and cleaning the house =) I’m sure I figure out my new routine quickly. Luckily it’s Friday so I can ease into my new normal.

I will continue to keep you all updated as we learn new things. We will have an appointment with Dr. warner and Dr. Shinawi once all the labs come back. Please pray for results! The last thing we need is another curve ball. I trust Dr. Warner and Shinawi so I know we are in good hands.

 

 

Our Last Day with Grayson

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Saturday morning we got up early to make it to the NICU for morning rounds. We knew we were going to have a difficult day. I had gotten a call from the NICU the night before saying his blood pressure was very low and they had to give him meds and blood to get it back up.

The morning was another blur. Everyone was up at the hospital and we were waiting for Dr. Warner to finish rounds to have a difficult conversation. Around 10am she came and got us from Grayson bed. She took us into a conference room with Grayson’s nurse and two other doctors. We went over everything she had already told us and she asked us what we wanted to do. We told her we wanted to take Grayson off the ventilator. Everyone agreed this was the best thing for him.

Children’s Hospital has a beautiful outdoor garden on the 8th floor. We decided after the family said goodbye to Grayson that Scott and I would bring him up the garden where we would remove the vent and say goodbye. We wanted him to see the sun and the tree’s and outdoors before he left us.

We were also really concerned how to tell Abby. It broke our hearts thinking about it and we weren’t sure how to tell her or what to say. We mentioned this in our meeting. Well, they have a life service counselor at the hospital, even on Saturday, for things like this and they were going to arrange for us to meet with them.

They also were going to arrange a photographer to come up to take some pictures.

Lastly they arranged to move Grayson to a private room so we could sit with him, hold him, with the whole family. This was the best thing!

Like I said, the NICU is amazing. I am a planner and I was so impressed how quickly this plan came together and perfectly it was executed. After we had our plan we went to tell our family.

Around 2pm Scott and I went back up to the NICU. They had moved Grayson into his private room. Scott and I went in there and the nurse asked if we wanted to hold him. To say I was excited is an understatement. They needed two people to move him because of the vent. They placed him in my arms and we did skin to skin. It was amazing. He was opening his eyes and we were talking to him and telling him how much we loved him.

 

That is when the counselor came in to talk with us about Abby. She was so sweet and so helpful! She gave us advice on how to tell her and what to expect. She said she would sit in with us while we told Abby. She told us it was OK to cry in front of her and that would make it more real for her. We just had to be very direct and blunt for her to understand.

The counselor had another  family in the PICU she needed to go see (she has the worst job) so she left and right when she left the photographer came in. We called Abby in and got some pictures.

When we were done with pictures the counselor came back in. I was dreading this conversation more than anything. She had brought a bag for Abby filled with crayons, a coloring book, stuffed animal and they sat on the floor together going through it. After she felt comfortable, Scott and I told her we needed to talk to her about Grayson. We told her that Grayson wasn’t coming home. We told her she was going to see everyone cry and that was OK. We did our best to explain to her why he wasn’t coming home and the counselor helped when Scott and I were needed her to. Abby obviously didn’t really get it but it went better than I expected.

Once the counselor left the room we invited everyone else back in.  We all gathered around Grayson, held his hand, talked to him, prayed, told him how loved he was. Scott read Grayson and Abby a book. It was nice to just all be together.

Once everyone said their goodbye Scott, our nurse, respiratory therapy, and one of his doctors took us up to the garden with Grayson. They had closed it for us so we were the only ones up there. We sat on a swing and held him one more time. It was the perfect night. Warm but not hot with a little breeze and the sun was just setting. After we said our last goodbyes we removed the vent. They gave him a dose of morphine before we went up so he was very comfortable. It only took a few minutes for him to leave us and he took his last breath in my arms. He had fought hard but his little body couldn’t do it anymore.

I carried him back down to the room. It was so nice to carry him in a blanket with no tubes or wires. Our parents were waiting in the room and they each got a chance to hold him. After they left Scott and I helped the nurses give him a bath and put clothes on him. Scott and I then had time to say goodbye one more time.

It was definitely the hardest day of our lives. There were lots of things we had to do, that after last year, we had hoped we would never do again. But we believe Grayson was here for a reason. He gave us answers and hopefully because of him other people will get answers too.

Tomorrow we will bury Grayson with William. It gives us comfort knowing they are together in heaven.

 

 

Answers

 

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100% the same nose as Abby =)

Friday morning we woke up excited. I hadn’t gotten anymore calls from the NICU and we were anxious to get over there and see G. Scott and I got over to the NICU around 9 AM. We saw the new ventilator they had put him on. It was large and it was shaking his little body. It was hard to see and knowing he was on morphine broke my heart a little. I was glad he was comfortable but really sad he needed it. I felt guilty that he was taken from his nice warm, comfortable womb and placed in this incubator with tubes and wires and we weren’t allowed to hold or comfort him.

My mom and Scotts mom were on their way down so we were just siting with Grayson waiting for them to get there. That’s when Dr. Warner, Grayson’s doctor, came by and sat down with an update. I knew we were about to get bad news. She said Grayson was on a lot of support to keep him alive. They were so hopeful at the beginning because he as doing so well but she thinks he gave it his all and had nothing left. She said his lungs looked good but his chest was just too small for them to work. She also told us that they were worried about his brain. It wasn’t as developed as it should of been for his gestation. I asked if he grew would his chest grow large enough for his lungs to work and she said she didn’t know and there was a chance he may always need a machine to help him breath. That, with the fact that there might be neurological problems, it was pretty obvious that his quality of life would not be good. Dr. Warner told us to think about what she said and focus on making memories right now. She was going to set up a time for us all to talk to Dr. Shinawi, the genetics/ skeletal dysplasia expert.

When she left I knew my worst fear had come true and that we were going to lose Grayson. It’s not that I didn’t have hope or that I was giving up but I just knew. Our moms got there soon after our conversation. Scott and Jo went in to see G and my mom and I went back to my room.

I honestly don’t remember how the rest of that morning went. We would sit with Grayson and then go sit in the cafeteria or my room and just kind of circle people in and out (2 people at a time in the NICU). Abby was coming up to see him after her nap. Thinking about Abby and telling her, literally broke my heart. But she was so excited to see him we couldn’t take that away.

She showed up around 6pm. She had on her big sister shirt and was so excited. We tried our best to explain to her what she was going to see and all the sounds she was going to hear (my Dad said it best – the NICU sounds like a casino – beeps and alarms constantly going off). If you know Abby, you know she loves penguins, or Bubbas, as she calls them. She has A LOT of bubba stuffed animals and she brought her smallest one, who she calls tiny bubba, for Grayson. The NICU nurse was so sweet and made hand and foot prints with her and Grayson. She loved it! We hadn’t told her anything about Grayson not coming home and she would say things like “when he get’s bigger maybe I can hold him”. Comments like that were like daggers to our hearts.

Right after Abby met Grayson Dr. Shinawi came in with Dr. Warner. They asked us to come with them to a conference room. Dr. Shinawi had Grayson’s skeletal survey. He also had what we have been looking for – an answer. He believes Grayson, and William, had Spondylometaphyseal Dysplasia, Sedaghatian Type. It is extremely rare – like 13 cases ever reported rare. It is lethal and it is autosomal recessive. This means that Scott and I both carry the gene but are unaffected by it but 25% of our children will be. Unfortunately, odds were not on our side once again and we got two in a row. Fortunately, we got Abby first who is perfect.

We still need to wait for all the labs to come back that will actually prove that this is what it is. Luckily there is a gene identified with Spondylometaphyseal Dysplasia, Sedaghatian Type so they should be able to confirm it. Since there is a gene identified, it also means Scott and I will still be able to have our own children. We will just have to pay for it! We will do IVF and they will test the embryo before implanting.

Now can we talk about how awesome Dr. Shinawi is? Grayson was only 36 hours old and he finds this extremely rare disease with only 13 reported cases. 13 reported cases means there aren’t very many articles on it yet he found it. They other great thing is he is actually in Belgium right now for a Skeletal Dysplasia conference with all the top SD doctors in the world and he asked permission to show x-rays and pictures of William and Grayson to get other top docs opinions. We of course said yes!

We will have to wait 6-8 weeks to get the labs back and will meet with him again to go over everything.

After meeting with Dr. Shinawi and Dr. Warner it was confirmed that Grayson was not going to live without support. They told us to think about things and that we would regroup in the morning.

After our meeting with them our priest, Ft. Molini, came up to the hospital and we baptized Grayson.

It was one of the longest, most emotional days of our lives only to be toped the following day.

Part 3 coming tomorrow.

 

Grayson’s Birth Story

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Scott and I wanted to thank everyone for the calls, texts, emails. We feel the love.

Last year when we went through this with William, so many of you sent flowers, cards, gifts, etc. and while we appreciate it SO much we thought instead of spending money on flowers it would be better to give that money to a good cause. Scott and I had THE BEST experience at Children’s Hospital. The nurses and doctors are amazing!! So please don’t send us anything but if you feel like you need/want to do something please DONATE to Children’s Hospital in memory of Grayson.

Now, I feel like I should share Grayson’s birth story before I share the ending …

Thursday morning we had our scary 2am wake up call when Grayson’s heart rate dropped to the 70s. That was the second time in 24 hours that had happened. We were reassured when he passed his BPP, after it happened the second time, but they still wanted to keep us for monitoring at least another 24 hours. Around 10:30am Scott was downstairs getting me food and I got up to use the bathroom. When I got back in bed Grayson was off the monitor, which happened a lot from me being up and moving around. The nurse, who watches the monitor outside, came in to help get him back on. Well his heart rate was very similar to mine, which isn’t good, so she had me lay on my side and gave me some oxygen. His heart rate then skyrocketed back up which was proof that it was his heart rate that dropped and they weren’t just picking up mine. I texted Scott to hurry up and get up there with my food, scared they were going to tell me I couldn’t eat again (it had been 27 hours since my last meal).

Scott got back to the room and one of the MFM doctors came in behind him. She said she was worried about baby. She said they didn’t know why his heart was dipping and was concerned that the big dips were getting closer together. She was worried that he would take a dip and not come back up and we would have to do an emergency c-section and deliver him with the potential that his heart would stop and we would have to try and save him. She said she thought it was time to get him out but it was our call.

We knew Grayson was already going to have challenges once he was born and we didn’t want to add to them. We also have already lost a baby on the inside and all we wanted for Grayson was a chance on the outside, so we said let’s get him out.

Now, I didn’t think it was super urgent that we got him out immediately based on how the doctor was talking but the entire team was litteraly outside the door waiting for us to say yes. I barley had time to call my Dad and all I said was, baby is coming now call mom before they were wheeling me out of the room.

Apparently it was a level 2 emergency and they had 30 minutes to get me in the OR and prepped. I was rushed away while Scott waited behind for them to come get him.

They brough me in the OR where 20+ people were rushing around, yelling things, putting things on me, taking things off me – just craziness. They did a spinal tap and laided me down before going to get Scott.

The C-section wasn’t painful at all and Scott and I solidified the name while they were working on me. At 11:25am Grayson Bishop Fortkamp was born.

It was pretty scary. He didn’t cry. They brought him over to the infant warmer and began giving him oxygen. I couldn’t see anything but could hear them pumping the O2 bag. Scott went over to be with him. They intubated Grayson and gave him surfactant to help open the air sacs in his lungs. He responded really well to this and his oxygen levels got up to 100%. Once Grayson was stabilized they transported him to the NICU. Scott went with him and my mom came in the OR to sit with me while they finished. I got a glimpse of Grayson as they rolled him past and Scott had been taking pictures and showing me.

When they were finished with me I went back to my room with my parents and Scott stayed at Children’s with G. I had to wait at least 6 hours to get up to go see him. I was so tired from the adrenaline rush, meds, and not sleeping the night before, so I tried to rest while I waited. Oh and I finally ate!!

It honestly didn’t feel real. I kept forgetting he wasn’t inside me anymore! The nurse asked if I wanted something to eat, maybe a turkey sandwich, and my first thought was I can’t eat lunch meat. It was surreal.

Scott gave me updates from the NICU. They were taking blood and running tests. Everything for the most part was looking good. His platelets were a little low but when they drew more blood later that night they had gone up. He was stable and everyone was very positive. We were so happy!

I was finally able to go see him at 6:30pm. He was so tiny but almost a whole pound bigger than we thought! It was hard not being able to hold him or touch him but we were so in love. He looked so perfect.

At this point the doctors were a little concerned about his CO2 levels. They were high so they were going to draw blood and make sure the machine wasn’t wrong(apparently that happens sometimes).

Scott and I left around 9:30pm. Around 11:30pm I got a call from the NICU informing me that the numbers were correct, his CO2 levers were high, so they gave him more surfactant to try and open up his lungs. It didn’t help so they changed Grayson to a more high level ventilator. It was very powerful, shaking his body, so they also gave him morphine to keep him comfortable.

It was the craziest day. We were happy, scared, tired, and so in love.

I’ll share more of his story tomorrow.