Finding Out... {part 1}
Finding Out... {part 2}
Finding Out... {part 3}
I am very grateful for amazing friends who have been so willing to help watch my kiddos during these appointments. I have the best friends ever!
And I am also grateful for kind and supportive doctors who are ok with our choice to continue this pregnancy and are supportive of us in every way possible.
On Monday, August 26th 2013 I had my 20 week appointment and ultrasound. When we arrived, we were told that they wouldn't do the ultrasound since I had just had an in-depth ultrasound a few weeks prior at Maternal Fetal Medicine. There was no point and insurance wouldn't pay for it.
I understood why I was told that. However, at my MFM apt, they spent most of the time looking at internal organs and close-ups. I don't think I even saw a profile of our sweet little boy! Seriously.
And I didn't get a single photo! I had nothing but 6 and 8 week ultrasound photos of this baby!
I told the ultrasound tech that I understood that insurance might not pay for an ultrasound and I realized there was probably no purpose to having the ultrasound, but I had no photos of our little baby and I would really really REALLY like a photo! Pretty please?! (insert sad pregnant lady face here)
The sweet woman excused herself to go and talk with my Dr. And my amazing Dr gave her permission to do a quick ultrasound to get a few photos and a DVD of our little baby boy for us!
During the scan she mentioned that she thought she saw a problem with his heart. But we were already being sent to have a fetal echo in a few days so she didn't spend too much time looking at it.
That was such sad news. We were expecting him to have heart issues since most Trisomy 18 babies have heart issues. And we already knew our time with this baby would be limited, but only a few minutes was still sad to us.
The 20 week Dr apt went well though. All the normal things happened: weigh, measure, heartbeat. All was as fine as could be. This was the first time I had seen my ob-gyn since we got our diagnosis though, so we talked in more detail about the baby, how he is doing and what to expect. And we talked about the heart condition that they "may" have seen.
One of my biggest questions was what to do if I had pre-term labor. With both of my other babies I had pre-term labor and had been on bedrest. But with a baby like this, what would my options really be? He talked us through the options and basically suggested that if I begin contracting, I should come in. And they can do some things to help, but he wouldn't want to do anything that might put my health at risk given the fact that this baby wouldn't survive for long anyway.
It sounds harsh. But I understand the reality of it. We will do what we can, but no extreme measures will be taken that would put my life at risk. It makes sense, logically.
My husband's main question had to do with the fact that many of these babies don't live full term. So, would there be extra monitoring, or how would we know if the baby passed away in utero?
My Dr said that there is no need to do any extra monitoring. At this point I am feeling daily movement, so if I stop feeling movement, they want me in for monitoring. Otherwise, if he passes away, there will just be no heartbeat at the next Dr apt.
While this is a high risk pregnancy, it is also not a "high risk" pregnancy because there is simply nothing that can be done. And my health is fine.
I hope that doesn't sound negative or hopeless. But the realities of the situation are that his bilateral club feet could be fixed, his fingers and fists could be fixed, even some heart issues if he has them, could be fixed. But the real problem is on the cellular level. His DNA isn't right and every time a cell divides and creates a new cell, it is creating a new bad cell. And this particular cellular level problem, Trisomy 18, isn't something that babies can typically survive long with.
So I am not trying to sound depressed, or sad or harsh. I am merely trying to state facts. It's all I have to go on.
So for now...we just continue on! We buckle up our boot straps and we continue with our day to day life.
My husband and I talk about this a lot. We talk about it with our children.
Before we left my ob-gyn's office, I scheduled my next appointments: 24 and 28 weeks. As I scheduled them, my husband looked at his calendar too and voiced time preferences that would work best for his schedule.
As we left, I told him that he didn't need to go to the 24 and 28 week Dr appointments. They will just weigh and measure me and we will listen to the heartbeat. My husband had missed so much work (thank goodness for lots of sick time and a kind understanding boss!) and I felt bad asking him to come to what should be uneventful appointments.
My dear, amazing husband looked at me and said "But Ash, it's the only way we will know if the baby passes away. I don't want you to go to an appointment by yourself and have to face not hearing a heartbeat by yourself."
Good point.
But as with most of this journey, nothing quite prepared us for what we would find out...
Read the update on our Fetal Echo here: Fetal Echo {Our Trisomy 18 Baby}
Here are all the posts in this series about our family's journey:
Japolina
I'm so sorry that you are having to go through this. I always look for a silver lining and there are several here. You have an amazing husband. You are so lucky. You have great friends and doctors supporting you along this journey.<br /><br />I also think that it is a good thing that you know about what is going on with your son now. Friends have had babies with issues that are not know
Ashley Phipps
You are so right! There are many many silver linings! We are so blessed in many ways!<br /><br />And I agree, I am a planner...I prefer knowing now and having the time to prepare as best as I can. <br /><br />I love my blogger friends and all the love and support you guys show! Thank you so much!
Courtney @ Ordinary Happily Ever After
What a wonderful husband you have!
Ashley Phipps
🙂 I think so too 🙂 haha! But thank you!
Sharon @ Elizabeth & Co.
I'm keeping your family in my thoughts and prayers Ashley!
Ashley Phipps
Thank you so much Sharon for your continued thoughts and prayers! I truly appreciate it!
Holly S
My heart aches for you. You are brave and God is good.
Ashley Phipps
Oh thank you so much.
the cape on the corner
ugh, I am sorry to hear this, but you and your husband seem to be supporting each other and realistic about the outcome. wishing you the best.
Ashley Phipps
Thank you so much for your kind sweet words! I truly appreciate it!
Melissa M.
My heart is breaking for you. I pray for you and your family, and sending extra prayers for your sweet angel baby.
Ashley Phipps
Thank you so much for your prayers Melissa! They mean so much to us!
Lolly Jane
Love your perspective, Ashley. So happy for all the support your family has been given. We'll keep you in our prayers as well and your sweet angel baby! XO
Ashley Phipps
Oh thank you so much! I truly appreciate your nice comments...we are so blessed to have great family and friends! And bloggy friends too!! Thanks so much for the prayers ladies! They mean so much to us!
arlsmom aka Lynda
You are truly an inspiration of strength......I will keep your family in my thoughts....
Ashley Phipps
Oh goodness...I'm not sure about that. But I am trying to be strong! 🙂 Thank you so much for your kind words and your sweet thoughts! I truly appreciate them!
Lolly Jane
Love your perspective, Ashley. So happy for all the support your family has been given. We'll keep you in our prayers as well and your sweet angel baby! XO
Ashley Phipps
Oh thank you so much! I truly appreciate your nice comments...we are so blessed to have great family and friends! And bloggy friends too!! Thanks so much for the prayers ladies! They mean so much to us!
Kaysi @ Keeping it Simple
I love your attitude and everything getting through this. You are still in my thoughts and prayers!
Ashley Phipps
Oh thank you so much Kaysi. And thank you a ton for your thoughts and prayers! They mean so much to us!!
Jacquelyn Karlic
I just read this and the previous posts about your baby. I am so very sorry. I can't begin to imagine what you are going through. Keeping you, the baby, and the rest of your family in my prayers. <br />~Jackie @ <a href="http://thenonmarthamomma.com/" rel="nofollow">The Non-Martha Momma</a>
Ashley Phipps
Jackie,<br /><br />Thank you so much for taking the time to read my blog posts...I know they aren't exactly a quick "light" read. So thank you! <br /><br />And thank you for your kind words, thoughts and prayers. They really mean so very much to us!<br />
marissa | Rae Gun Ramblings
Oh Ashly I just read through the whole story up to now. My heart is breaking for you guys. Lots of prayers and hugs being sent your way.
Ashley Phipps
Marissa,<br /><br />Thank you so much for your kind words and for all the prayers and hugs!! They really mean the world to us! Thank you so much!
Lisa Thompson
Ashley, my heart is so sad for you. Please know that you are in my thoughts and prayers. <br /><br />If you're looking for some encouragement from a mom who has been through the hurt of Trisomy 18 or just need someone to talk to who's been through this, I highly recommend reaching out to my sister-in-law Tara. She blogs at http://www.taradovenbarger.com/.
Ashley Phipps
Lisa,<br /><br />Thank you so much for your kind words and also for the recommendation of a blog and your SIL as a resource!! I truly appreciate it!
Amanda B
Every time I read your posts I cry.. I am sitting here in Australia and I feel like I want to come over and have a cup of tea with you. You are amazing and your posts are so personal, yet informative and so well written. My little boy saw the scan pic as he walked into the office and said, is that me mummy.. and I said no, that's another little boy in another mummy's tummy, but he looks
Ashley Phipps
Amanda,<br /><br />Thank you so much for your heartfelt comment and your kind words! You are so sweet and I truly appreciate your kind thoughts. <br /><br />Thank you so much!
Design Dazzle
Ashley,<br />You write from the heart. So well said.<br /><br />You are blessed to have Josh by your side.<br /><br />Big hugs!!<br />Toni
Ashley Phipps
Thanks so much Toni! And yes...I am super luck to have a great hubby 🙂
Mabey She Made It
Your faith is amazing, your ability to accept and understand and love your little boy is divine, and your words are pure and sweet. Our Heavenly Father is surely by your side!
Ashley Phipps
Thank you so much for your kind and meaninful comment!! You are so sweet. Thank you!
Charlotte
I get a lump in my throat every time I read through your posts... just the idea of loving someone so entirely that you may only see face to face for a matter of moments is the definition of faith and adoration. Your strength is a reminder to all of us to cherish the gifts we have right in front of us. Sending love.<br />xx<br />Charlotte @ Ciburbanity
Ashley Phipps
Oh thank you Charlotte! Thanks so much for your kind thoughts and love 🙂
Lisa
you are amazing parents. I know you are treasuring time with your baby. Sending lots of love xoxo
Ashley Phipps
Thank you so much!
eab1313
My heart is breaking for you as I read this, and yet, I know God puts you through it and takes you through it. You are an amazing, selfless couple. I can see that God is giving you peace in this helpless, seemingly hopeless outcome. What a blessing you are to other families going through a special needs birth!
Ashley Phipps
Thank you so much for taking the time to leave such a kind comment! I truly appreciate your kind thoughts! Thank you so so much!
Marcy Knopf
You are an amazing and strong woman. I truly believe you and your husband will be able to raise your beautiful baby either here on earth or in the eternities. He must be a special spirit who is too strong for the measly trials on earth and is needed in Heaven with the Father. Bless you and your family!! =) Marcy @ <a href="http://www.day2daysupermom.com" rel="nofollow">day2day SuperMom</a><br
Ashley Phipps
Marcy,<br /><br />Thank you so much for your kind words! And yes, we feel the same way. We will get to be with our son forever! What an amazing blessing that is :)<br /><br />Thank you so much!
Sarah
I know the Lord is mindful of your family, and many angels are being put in your path to make this journey easier. Thank you for your awesome example of faith. Much love from Texas.
Ashley Phipps
Oh Sarah thank you so much! I feel like all of these blog comments, emails and texts I have gotten have done so much to help support and get us through all of this! In a way, you are all angels helping us! But yes...I am sure there will be more as well!<br /><br />Thank you so much for your kind words and thoughts!
Magali@TheLittleWhiteHouse
I have been following all your posts about your baby. While I do not believe that God sends sick babies to some families, I admire your decision to give that baby the time he has to live, even if it's only in utero time. I'm pretty sure he can already feel the love surrounding him and that his life, however short it might be, will be a beautiful one, because he is loved.
Ashley Phipps
Thank you so much for your kind words.
Randi~Dukes and Duchesses
Ashley, I had no idea this was going on. I just caught up on all of the other posts and my heart is just so sad for your family. Praying for all of you as you walk through the weeks ahead.
Ashley Phipps
Thank you so much for your sweet words!! I really appreciate it! It is seriously amazing bloggers like yourself...taking the time to read my blog and leave sweet comments that really, honestly helps support us! It may sound so silly, but knowing there are so many people praying for us gives us a lot of strength! So THANK YOU so much for the prayers, your support and all your kind words!!