Prenatal Diagnosis: Preparing

After my grieving period was over I was finally able to start being excited again and start preparing for Blake's arrival.

I jumped right in and started researching as much as I could so I could be as prepared as I could. Now that he is here I feel like I could have been even more prepared had I known some things. If you are preparing for the arrival of your little one with Down Syndrome I hope you find this helpful.

1. Have as much family time as you can, because when that little bundle of joy arrives you will be so busy!

2. Get involved in your local Down syndrome community. Go meet other families and talk to people who have Down syndrome. Specifically someone who is a teenager or adult. I really wish we had done this.

3. Watch the show "Born This Way" on A&E. I didn't even know about this show until after Blake was born, but it would have helped me with the processing so much if I had been able to watch it while pregnant.

4. Find out what your options are for Physical Therapy, Occupational Therapy and Speech Therapy. Reach out to your state Early Intervention Program and get that process started because it can take a while. Find out what your insurance covers. I believe it is so important to start therapies as soon as possible even if your baby is meeting milestones because a therapist can tell as soon as they start to get delayed and can show what you can do to help you child meet the milestones that they are missing.

5. Tour the NICU that your baby would go to if needed. Even if there are no medical issues that you are aware of, tour anyways, because you never know what could happen. This isn't to scare you, but a lot of babies go to the NICU for respiratory help, low blood sugar and feeding problems. Some don't go at all, but it is better to be prepared. Some babies are premature which would require a NICU stay.

6. Join the Down Syndrome Diagnosis Network Facebook groups (DSDN). These women (they also have dad group) are amazing. You will need a ton of support on this journey and having women by your side going through the same thing at the same time is invaluable. Also being a part of the main group and being able to ask advice from women who have already been in your shoes is amazing.

7. If you are wanting to breastfeed, find an IBCLC now that is familiar with low tone babies. This will be invaluable. Also find a private speech therapist that is familiar with breastfeeding. See both of these people as soon as possible after baby's birth. If you are in the NICU and baby is able to have oral feeds I high suggest having them come there if possible. There is a DSDN group for pumping and breastfeeding as well. I am convinced that had I done this, our breastfeeding journey would have been very different.

8. If you are into reading books for research these are good options.

• The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood
• Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don't React Method
• Early Communication Skills for Children with Down Syndrome
• Gross Motor Skills for Children with Down Syndrome
• Fine Motor Skills for Children with Down Syndrome

9. If you are mostly into researching via the internet I have some good ones listed here.

10. Have people set up and ready to help you once baby comes. Especially if you are expecting a NICU stay. Even if you think you won't need help because you've done the baby thing before. It is so different adding child with Down syndrome, even with no medical issues they come with a lot of extra doctor appointments.

10. Read the book Bloom, it is amazing and will validate everything your are feeling.

11. Find a car seat with a lot of support for the lower tone. Something with head wings. We actually just replaced Blake's seat because I was over having to add extra support.

12. Get maternity pictures done because even though you may not feel like celebrating you will regret it if you don't.

Lastly, enjoy your pregnancy because before you know it you will be missing those little kicks. At least I did. 

Here is Blake's Birth Story and his first month of life which was in the NICU. 

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.

Emma Meeting Blake

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

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

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: