Possible Growth Restriction/Skeletal Dysplasia UPDATE

hp_momma

I've briefly mentioned this is my weekly ticker change check in, but I feel like I need a place to document/vent/get things out. Things may possibly change or update between now and delivery so I figured it would be best to keep it all in one place instead of bogging down the Randoms/questions thread. This is going to get long but there is a lot of background info to catch up on. Kudos if you read the whole thing!

Our LO is being monitored for possible IUGR or skeletal dysplasia. We don't have an official diagnosis and most likely will not until delivery. 

Back in December we were informed that my Quad Screen results came back with an increased risk for possible Down Syndrome. MFM doctor ordered cell-free DNA testing to get an additional result before our anatomy scan. Cell-free DNA results came back all normal and we thought everything was in the clear. At our anatomy scan with MFM doctor, he noticed that the long bones were measuring small (8th percentile) but there were no other markers for Downs. Because of the small long bones and positive results on Quad screen, it could be issues with the EDD, IUGR or skeletal dysplasia. Baby looked great and healthy otherwise. We declined an amnio. 

Three weeks ago we had another ultrasound and long bones were continuing to measure small, but no decline in growth and following along the 8th percentile. Babies chest was measuring around 25% and head measuring 35%. These were important numbers as an extremely small chest measurement could indicate a lethal form of skeletal dysplasia and a very large head would more likely point to skeletal dysplasia such as dwarfism. So from this ultrasound it looked like skeletal dysplasia was still possible, but IUGR was still on the table as it looked like LO was measuring small overall. 

As of now, the plan is to monitor with growth ultrasounds every three weeks to see if LO is continuing on the same trend. Once we hit 32 wks I will start NST twice weekly with the possibility of delivery if anything concerning were to come up. DH is getting ready to be out of town until I'm 34 wks so I'm a little stressed about that. More than likely we will deliver between 38-39wks as long as things continue as they are. 

Tomorrow I have another growth ultrasound, so I'm starting to stress again to see how LO is growing. 

starphish18

@hp_momma I'm sorry you're going through this. That must be stressful and scary, not knowing exactly what's going on. Sending lots of positive vibes your way for a healthy baby. Please keep us updated!

Squirtgun

Oh I'm so sorry, that has got to be so stressful!  I'm glad it sounds like you've got a good medical team together who can help monitor Baby! I'll add you guys to my prayer list. 

mdlorenz

@hp_momma Huge hugs. The unknowns are so hard to deal with. I'm rooting for your LO to pass the growth ultrasounds with flying colors and just be a peanut rather than have something extra going on. Will be thinking about you tomorrow! Update us when you can. 

Kipperoo

Oh, that sounds so stressful. I think not knowing what's going on during a pregnancy is one of the most unsettling feelings. Thanks for sharing--I will keep you and that sweet baby in my thoughts. It sounds promising that the critical measurements aren't coming in really small. 

hp_momma

Yes, the unknown is definitely the most stressful part. Part of the reason we declined an amnio was because there are hundreds of variations of skeletal displasia that more than likely an amnio wouldn't be able to give a definite answer. After birth, if the pediatrician has concerns and thought LO showed signs of skeletal displasia, then we could do more precise genetic testing. It is still very possibly that LO could just be small and no actual genetic problems. 

And at any point this could point to an issue with the umbilical cord or placenta which could explain the small growth. My MFM doctor explained to me that during IUGR the brain and organs are spared and all nutrients go there and then kind of outwards from there. So short long bones could point to that as well. 

Our military hospital is actually a highly sought after fellowship program for MFM doctors in the military so I do feel very lucky to be here with this team. 

Thank you all for the well wishes. Just typing everything out and putting it out there has been therapeutic. 

WombThereItIs

I had no idea this was going on, I'm really sorry to hear that. It sounds stressful and super sucky. 

You are really at one of the best hospitals though, it's one of the three places I would want to be in the same situation. 

Hoping for the best and you just have a peanut baby screwing with you. Kids are tricky like that. I'm glad you shared though, keep us in the loop. 

CherryBananas

The unknown must be so stressful. I'll be rooting for all of you and keeping you in my thoughts. Fingers crossed babe is just tiny, but it sounds like you have a good team on top of things just in case. 

kns1988

Good luck at your appointment tomorrow, @hp_momma! I hope that you get good news. 

mdlorenz

Glad to hear you've got some great MFMs where you are. And don't hesitate to let this stuff out here - goodness knows it can be challenging to keep rehashing with SOs, family, etc (or even just breaking he initial news) and this is a safe place to ease that burden.

SKZW

I remember you mentioning the long bones measurement before. Knowing that you have a plan in place, with growth checks along the way, will hopefully keep your mind settled and peaceful and unstressed. Thank you for sharing your story and I'm glad that writing it out provides some comfort. Sending you good vibes and happy thoughts!

psherman42wwsa

I can't imagine how stressful that would be. I hope everything turns out well and you have a healthy baby. Good to hear that you have a team of trusted professionals. Having a baby is one of the best times in life but also one of the scariest .

achays11

Sending thoughts and prayers your way! It must be so hard to not know what's going on. I hope the growth scans continue to show the same measurements or better. 

rkstro2

@hp_momma I'm sending positive thoughts and prayers to you tonight to get some peace and rest and the same for your scan tomorrow.  Please post an update whenever you're ready.  

lnds32

Hoping you get good news tomorrow! I will be thinking about you!

pshaortao

Sending positive thoughts for a good appointment tomorrow. The unknown is so hard, but at the least you can prepare for any scenario. I'm glad you have a great plan set in place for you and baby!

Icarriedawatermelon

Sorry to hear you're going through this. Fingers crossed that your appointment goes well tomorrow.

NotAPlaya-JustCrushAlot

Sending positive thoughts! It sounds like you're in good hands with a solid plan in place. 

bacorrea

Big hugs & prayers girl.

ShadeofGreen816

Glad you started this thread to share. I remember the early on story but have missed the bone growth issue as of late. So stressful for you but keep your head up and hope for the best. I'll be praying for you and LO. 

anitamargarita_82

Lurker from June.   Hugs to you.  I'm so glad you're getting good care in a military hospital.  May I ask which one?  I've been in the Navy for 16 years now and always value hearing when someone is getting good care.  

Edited for autocorrect. 

Hansolosparka

I'll be thinking of you and hoping that you can get through the stress of the unknown. Hugs

hp_momma

Wearmi1 said:

Lurker from June.   Hugs to you.  I'm so glad you're getting good care though in a military hospital.  May I ask which one?  I've been in the Navy for 16 years now and always value hearing when someone is getting good care.  

I've actually been lurking on your story for awhile now! I remember seeing from your previous posts you had mentioned being seen at Seattle Children's and your military affiliation so it peaked my interest to follow along because we are just south of you at Lewis-McChord. 

hp_momma

@WombThereItIs Yes I'm very thankful to be here over other options. We all know the bad reputations some military hospitals can get and to know I'm at this one does ease some stress! 

BeachMommy2B

Thinking of you and hoping your appointment goes well tomorrow. Glad it sound like you are in a good hospital to handle your case! Please keep us all updated as you go along! 

Yiggle09

I'm sorry you've been dealing with this and have all this stress on you. My friend had a similar situation as you but the little guys about 2 years old and they still don't know what type of dwarfism he has. I'm glad they found this early so you guys can prepare and monitor. My thoughts are with you

mamatowildones

I'm so sorry you have to go through this. Sounds like a good monitoring is in place. Thoughts and prayers. Keep us updated. 

anitamargarita_82

@hp_momma I'm glad you're getting good care at jblm. I'm only seen out in town for all of my care.  I wish you nothing but the best with your little one.  I've been through a lot with my pregnancy and the uncertainty of all the issues I've been faced with.  I know exactly what you're feeling!  Keep your head up and stay positive!   

RainyDays86

I'm so sorry to hear you've been dealing with this and I agree the unknown is so stressful. Good luck at your appointment tomorrow and I'll be sending good thoughts your way!

KMD1106

I'm sorry you're dealing with the uncertainty of this. T&Ps to you. 

chickyclg

I'm so sorry you're dealing with all this, I couldn't imagine dealing with those types of unknowns. T&Ps to you guys I'm sure this has got to be nerve wrecking.

Jens_Hoes

Thinking of you! Fx for you and your family. 

vrj0522

T&Ps for a good appointment! Sorry you have to deal with this uncertainty.

L1C4gal

Sorry to hear that you're going through this. But I'm glad that you're in a place with really good care! Sending good vibes for a positive appointment today!

MrsFox2008

So sorry you're going through this. I hope your appointment goes well today.  You're in my T&Ps!

CherryBananas

Good luck at your appointment today!!

bacorrea

Thinking about you this AM! 

schnitz9

@hp_momma I'm sorry you're going through this. Being in limbo is terrifying and so frustrating. I have growth scan next week since my doc is starting to expect IUGR as well.  At our anatomy scan the baby was measuring at where he should have been for 18 weeks, but was still a little on the smaller side. Since then they have become concerned since im still loosing weight at 27 weeks and my fundal height is behind so they wanna take a look.  They did the same thing to me when I was pregnant with my son 2 years ago and he is a perfectly healthy 2 year old.  He's just as the ped says "on the petite side". He's currently at 2 years in the 10% for height.  My husband is only 5'8" and I'm only 5'3" so it kinda makes sense.

It's positive to see that while yes the baby is still measuring small the % is still the same and not getting worse.  I was told that that is actually a good thing last time.  Hoping all goes well and you little nugget is just petite like my little guy.....we are all here for support and I'm glad you're sharing your story with us

BabyMC517

I can't imagine how stressful this is for you, but it sounds like you have a great support system at home (and here) as well as a great team of doctors! Dealing with the unknown in any situation is the worst!! Sending all of the positive vibes your way! Hope all goes well at your appointment today!  

Louise_Belcher

I'm sorry and cannot imagine how stressful this must be. Thank you for keeping us updated. My thoughts are with you. 

nda_roxybabe

Oh, I'm sorry you're having to deal with this Really hoping everything is A-ok!