Sunday, October 21, 2018

Prenatal Diagnosis: Grieving

In early August 2017 two pink lines showed up on the test, or in our case one blue line. I was so excited and couldn't wait to have Emma tell her dad that we were expecting another baby.






The first trimester was pretty uneventful, just the normal morning sickness and overall exhaustion that pregnancy brings, on top of being a mom of a toddler and working full time. We declined the genetic blood test as we knew the results wouldn't change our mind about keeping the pregnancy and we didn't want to find out the gender.

On December 15th we went to see a specialist for our 19 week anatomy scan as I had had pre-eclampsia with Emma and my midwives just wanted me checked over by a specialist and released before they took over for the rest of the pregnancy. Bobby and I went into that appointment just happy to finally get to look at the baby on the ultrasound. Little did we know that our world was about to be turned upside down.

When the doctor came in to discuss the results she said that he had a calcification on his heart and that his kidneys had a little extra fluid on them. She said that these can be soft markers for Down syndrome. That is basically all she said and offered the blood screening. We were shocked as we thought Down syndrome was hereditary. We also knew nothing about it and were provided no information about it. We left distraught. I was in shock. I cried for days. I Googled for days. Even though everything I found said that the baby would be happy and able to do everything a typical child could do, it would just take longer, I still felt so sad.

I knew I would love the baby, I knew that the baby would be fine and that we would do everything in our power to help the baby be successful. I was in utter despair it felt like, because I was grieving the child that I thought I had lost. The the playing with Emma and their talks as adults. The protecting each other and playing make believe together. Now all I could think about was how we would probably never be childless, how when we were gone Emma would be left to take care of her sibling with a disability. I knew people said that a person with Down syndrome could be independent and take care of themselves, but I still knew that we would always have to be very involved in the baby's life. I hoped that Emma never felt like her sibling was a burden.

As the weeks went on the grief got better. I would look at the sonogram pictures and just stare at all the tiny parts. I would try to keep reminding myself that while life would be different our baby would still be wonderful. I burst randomly into tears over the next few months. I would feel sad and angry a lot. I snuggled Emma a lot more over that month. Christmas was a few weeks after our blood screening came back with a 93% chance. I tried my best to let that be a distraction. I would still wake up in the middle of the night and just burst into tears. I was a mess for several months.




I poured into all the resources that I found. Especially my Facebook group through Down Syndrome Diagnosis Network. These women who had already been there, or were going through the same thing as me were my rocks.

I felt so guilty for being sad about the baby's diagnosis. Every time I felt grief I would then feel guilt over feeling the grief. If I could go back and give myself advice, it would be to feel any emotion that I wanted for as long or as hard as I wanted. I had to grieve so I could move on and start to be excited again. Grief is an important part of the process. I wish I could also tell myself that it would be okay, all the stress and grief would be worth it and that Blake would be the sweetest little boy we had every met.

Sunday, October 14, 2018

Emma Meeting Blake

Emma wasn't sure what to think about Blake in the beginning she liked him when we weren't holding him.







Saturday, October 13, 2018

Blake: 1 Month Old

Blake turned 1 month old on June 1st. With Emma I use the typical baby milestones to see where she was. With Blake I will be using both the typical and down syndrome time lines for milestones, although it varies so much sometimes that you can't have a time frame. We obviously don't expect him to hit his milestones at the same time as a typical baby because his muscle tone is so much lower. However, I still like to know where he is in comparison as it lets us know what we should be working on.

Most Babies Will Be Able To Do:

Skill: Lift head briefly while on tummy
Ds Age: 1 to 3 months
Blake: He can do this, but barely.

Skill: Focus on a face
Ds Age: unsure
Blake: He cannot do this yet.

Skill: Bring hands to face
Ds Age: unsure
Blake: He can do this

Skill: Suck well
Ds Age: can take awhile
Blake: he tires out very easily and his suck is not very strong



Half of Babies Will Be Able to Do:


Skill: Respond to loud noises in some way, such as startling, crying, quieting
Ds Age: 1 to 3 months
Blake: He can do this, he startles so much



Some Babies Will Be Able To:

Skill: Lift head 45 degrees on tummy
Ds Age: 1.5 to 4.5 months
Blake: He can't do this yet on his tummy. He can when on your chest.

Skill: Vocalizing in ways other than crying, such as cooing
Ds Age: 1.5 to 4.5 months
Blake: He can do this, but doesn't do it very often

Skill: Smile in response to smile
Ds Age: 2 to 4.5 months
Blake: does not do this yet



A Few Babies Will Be Able To:

Skill: Lift head 90 degrees on tummy
Ds Age: 3 to 6 months
Blake: He does not do this yet

Skill: Hold head steady when upright
Ds Age:  4 to 6  months
Blake: He does not do this yet

Skill: Bring hands together
Ds Age: 1 to 5 months
Blake: I don't think he did this at that point, at least not on purpose

Skill: Smile spontaneously
Ds Age: 2 to 5 months
Blake: He does not do this yet









Tuesday, October 2, 2018

May 2018

May was a very very low key month for us. With Blake just being born and being in the NICU the whole month.

Emma spent the first week at her Aunt Melody's and Uncle Michael's with her cousin CJ since we were at the hospital.

 She also got some Mimi time

 And some Gammi time. She said the fish was ew and wouldn't touch it. But she had fun catching it.

 She got to go shopping for NICU snacks.


 She was really into sorting and counting things this month.
 She has also started "writing".

 After a couple of weeks of pure exhaustion from NICU life, we finally caved in and gave her her present from Blake. We had wanted to wait, but we just needed some rest after a day at the hospital. This month/summer her tablet babysat her a lot and I am 100% okay with that.


 After her shower one night she decided she needed to take a bath with her baby in the baby's bathtub.





 We had to practice using the ring sling before Blake came home.

 Cheetos and ketchup...her life.
 Mommy and Emma time the weekend before Blake came home.


 One random night I was really frustrated with the lack of storage because we have this hall closet that is super deep, but you can't use the back because you can't reach stuff. So we spur of the moment ripped it out. We were able to combine two closets into one.

 My youngest sister Victoria graduated high school.
 Summer officially begins when the pool goes up. I can't wait for Emma and Blake to be able to play in it together next summer.
 Exhausted.
 The day before he came home!

 Daycare fun:










Thursday, August 30, 2018

SeaQuest Spring 2018

As our last activity as a family of three we went to a place called SeaQuest. It was fun for Emma, but definitely not worth the money.