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ma-meem 05-18-2010 10:24 AM

UPDATE: Meeting Mark, Our Own Personal Angel
Hi mamas, it's me again!! It has now been 2 months since my Mark grew his beautiful Angel wings. I can't believe how fast the time has gone. I have mostly good days, as I'm keeping busy...but the odd day that is pretty down. I think we're leaning on trying again soon, but haven't officially decided :)

I have done many things in his memory like volunteering on the Mat Child ward at our hospital, giving his dipe stash away to mamas in need, and starting the Facebook Cause called Outfits for Preemies. Some of you have joined and thank you from the bottom of my heart for making this cause such a success!!! we now have 240 members, and I've made 2 trips to the hospital with preemie outfits. I'm wondering if anyone here has any preemie outfits...Please join, it's a cause that is so close to my heart!!!

I want to thank you all here on DS too, for being such wonderful, caring women in my time of need. Your support and kind words have meant more than you know. It's been a hard tough time, but we're doing well, knowing he is healthy in Heaven, playing with his other angel friends, waiting for us to come home to him.



In Memory of Mark, I have started a Facebook cause called Outfits for Preemies. I'd love it for those of you on Facebook to join! we already have 100 members! for those of you who aren't aware, we started this cause for those parents who are unprepared for the early birth of their baby and have no clothes small enough to fit them. These outfits will be given to the families in the hospitals. You can donate outfits, or monetary.

Outfits for Preemies - In Memory of Baby Mark

thanks so much mamas! :hugs:


I wanted to thank each and every one of you mamas here on DS. All of your prayers, thoughts, and concerns meant sooo much to my hubby and I...and Mark too :)

The last 2 weeks and 3 days have been hard, especially the first week and a half or so. I miss my baby so much. Even though we knew he was sick, and had come to peace with it (or so we thought) it was different once we had him. It's like we're grieving all over again.

I have put together a foundation in Mark's memory...collecting preemie clothes for parents that are unprepared for the early birth of their baby. In the last 2 weeks, I have collected 23 outfits! I delivered them to the hospital last night :) If anyone has any that they would like to donate, please let me know! I will pay shipping. I plan to make this an on-going process, to honour my sweet little Angel Mark. We are continuely amazed at the generosity and compassion that people have. This little baby has touch so many people in his short life!

Again, thank you all so much :hugs:

**mama and papa love you and miss you so much Marky Bear**


Mark Johnson was born on Saturday July 10th, at 8:31 a.m. He weighed 3 pounds, 12 ounces and was 13.5 inches long. We were blessed with one hour and twelve with Mark, before he went to his heavenly home at 9:43 a.m. Mark experienced holding hands with his mommy and daddy, hugs and kisses, being baptized, and being told “I love you” an uncountable amount of times. Mark is deeply loved and will always remain our precious baby...Mark, we will hold you again in heaven one day.

I will be writing more about this later this week, but right now I can't. There is a picture of Mark on my blog...we was absolutly beautiful.


I had an ultrasound yesterday and my OB thinks it's best that I get induced this friday morning. My liver enzymes are still looking good, but I have developed polyhydramnios (which is common for TD babes, because their throats get constricted and they can't swallow, so the amni fluid just builds up). I am 31 weeks today, and measuring 39 weeks due to all the fluid. I went from measuring perfect for dates 2 weeks ago (so my belly grew 10 weeks in 2 weeks!). Mark's head has also gone through a big growth spurt. His head was measuring at 32 weeks 2 weeks ago to now measuring 38 weeks. Due to the bleeding disorder that ICP has, I am NOT to have a c-section if it can be helped, so I will need to deliver this week before his head gets too big for a vag. birth. He is also breech right now, so I'm really hoping that he will turn for me in the next couple of days.

We got about 2.5 weeks extra with him; for that we are very greatful. He has gone through a big growth spurt the last 2 weeks, and now is almost 4 lbs at their estimation. I read a story from a mama who had a TD babe 2 weeks ago and he lived for 30 hours! she even got to breastfeed him :) We are praying that God will allow us to have a good deal of time with him. We know that every second we have with him will be the most precious memories.

I will keep you all updated. :hugs:


This time with some GOOD news!

Though Mark's prognosis is the same, we were told we can have a couple more weeks with him :) My doc. said that if she monitors me very closely for my liver enzymes and clotting factors, she is confident that I can carry Mark a bit longer before any permenent liver damage. I LOVE my OB for being such a compassionate woman, knowing that every minute with our Mark means the world!

A couple of extra weeks means that he will be more mature, and hence will be able to stay with us for a little longer. Like I said, every minute extra we have with him will mean so much.

Thank you all soooo much for all the prayers and thoughts...keep them coming mamas!!! they seem to be working :) :hugs: to you all!!!!!


I have some bad news, we are going to be induced tomorrow (wednesday) bcause of a lot of health issues with me...I had my appendix out 1.5 weeks ago, that was just the beginning! the pregnancy is making my liver act up and it is being damaged which could cause a lot of problems...the only way to solve it is through birth and they want to induce right away before anything bad happens...I have cholestasis and my levels spiked last week to the 300's (normal is 0-30) the docs are really worried.

We're so scared of what is to come but so happy to meet him too :hugs:

Thank you so much for all of your really means alot to us.

We are really just hoping now to have some time with our little angel before he slips into God's arms. Please pray for this...I will put pics up on Mark's blog as soon as I'm able.

I just wanted to thank you all sooo much for your prayers and thoughts! I am starting a blog that will be about our Journey With Baby Mark...please check it out and bookmark it, and check back often... and keep praying that God will grant us a miracle and heal him. The more prayers and positive thoughts the better!!!
:hugs: to all of you


Im 24 weeks pregnant as of tomorrow, and at my 20 week US we found out that our baby has td. It is a lethal form of dwarfism... where his rib cage is so small that it cannot support his lungs, so he will die shortly after birth (they say minutes to hours). No babies have every lived with this condition (there is ONE who is 4 yrs old, but he lives on a feeding tube and trach. to breath, and has very diminished brain activity). My babes long bones also stopped growing at 14 weeks and his head is 2 weeks large. We are going to carry him as long as possible, but apparantly a lot of mothers with TD babes gain a lot of extra fluid with this and hence their waters break early. Im already measuring one month big. They gave us a 98% chance that this is the condition he has...2% that he is a healthy "litte person". Has anyone else gone through this?

and now I have to sell all the newborn dipes Im getting in the mail. It's so hard carrying him knowing he will die right after birth. ***update: I've decided to keep all my dipes and shortly after my babe becomes an angel, Im going to give them away to mamas on here who are in need of them and can't afford them.

If anyone else has experience dealing with TD, I'd be greatly appreciative to speak with you.

Saird 05-18-2010 10:28 AM

Re: thanatophoric dwarfism?
I don't know anything about this, but I am so sorry for you. Please be strong.

BeccaD777 05-18-2010 10:29 AM

Re: thanatophoric dwarfism?
I don't have any advice or experience, but I wanted to tell you that I am so sorry for what you are going through. I can't even imagine how hard that must be! I will be praying for you and your family in this difficult time. God can still work miracles!

ma-meem 05-18-2010 10:31 AM

Re: thanatophoric dwarfism?
yes they said that they are 98% sure that he has TD, but there is that 2% chance that he doesn't so we're praying they are wrong. His long bones measure 7 weeks behind, and his head measures 2 weeks ahead, so we are hoping he is a little person but without the lethal side of it...we are going to try to enjoy what time we have with him.

hadfield531 05-18-2010 10:37 AM

Re: thanatophoric dwarfism?
:sorrysign: That's not fair :(

tygr2410 05-18-2010 10:37 AM

Re: thanatophoric dwarfism?
:hugs: mama. You must be strong.

kannondicarpo 05-18-2010 10:46 AM

Re: thanatophoric dwarfism?
My heart just aches for you and I cannot hold back the tears. I am also praying for a miracle. God is the Great Physician and the Great Comforter.

asteiner18 05-18-2010 10:48 AM

Re: thanatophoric dwarfism?

Originally Posted by kannondicarpo (Post 10280330)
My heart just aches for you and I cannot hold back the tears. I am also praying for a miracle. God is the Great Physician and the Great Comforter.

I completely agree. Many prayers for your family.

bohlander04 05-18-2010 10:50 AM

Re: thanatophoric dwarfism?
:hugs:Mama I'm so sorry.

PiecesOfKate 05-18-2010 10:52 AM

Re: thanatophoric dwarfism?
:hugs: So sorry you are going through this.

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