It has been a very long time since I've posted and this afternoon I just felt led to log back on and see how everyone is doing and share my story.
I was just reading back to my announcement that I was pregnant with a "surprise" #2 last March.
If you remember I had daughter #1, Virginia, after doing IUI's at Portsmouth Naval Medical Center in 2008 then had the surprise pregnant in March 2009. After finding out I was pregnant we pcs'ed back to Ft. Carson in Colorado Springs.
We moved in June and about 2 weeks after getting our furniture hubby deployed to Iraq. Things were going okay. The house was still half in boxes and I was getting bigger every day.
I developed gestational diabetes with this preg. also and was being seen twice weekly for non-stress tests and u/s. I noticed that this baby wasn't moving alot and even went to labor and delivery around 28 weeks but once hooked up everything appeared fine.
I hadn't met alot of people and was really struggling with raising a toddler, being pregnant, and hubby being deployed and being back in a new place. I was planning another c-section. So at exactly 36 weeks I had a nst and u/s and I asked the nurse to please keep the u/s on the baby until we saw her move. We didn't see her move. She was breathing and swallowing and had a great heartbeat but wasn't moving. The dr. was called in and for 30 min. he held the u/s on her and she never moved. They decided to do the c-section that day without my husband. I knocked on a neighbors door and asked if she could watch Virginia while I had the baby. Our families started plans to get to Colorado as soon as possible.
I had sweet baby June Marie on 5 October 2009. She was almost 7 lbs. At that time we didn't know what was wrong and she was sent to a nearby civilian hospital that has a level 3 NICU.
My husband arrived on 7 October from Iraq and we went to the NICU and that's when we were told sweet baby June had a neuromuscular disease called Spinal Muscular Atrophy and that it is fatal. The best way to describe it is like an infant Lou Gehrig's disease. Everything is normal except their muscles atrophy affecting swallowing, eating, breathing, ect...
She was off the ventilator at this point and did fine for 10 days until her right lung collapsed. We didn't have the official blood results at that point so we re-intubated her. We decided that on 27 October we would remove her from the ventilator and put her back on the high flow b/c she had done well on that and then let God's will take over. As soon as we removed the ventilator her heart rate dropped and we knew that it was meant to be that she go and be with Jesus and she passed peacefully in my arms at 3 weeks 1 day old. the 27th was her original c-section delivery date.
I just felt the need to share because so few know about this disease but it is the leading genetic killer of children under the age of 2. Almost all are born normal and are diagnosed around 6 months. Baby June's was the most severe. 1 in 40 people are carriers of this.
Since her birth and death I just want to make more people aware of this cruel disease.
I chronicled all this on my blog if wanted to go back and see pictures of baby June. She is beautiful! Just go back to the archived section around 5 October. I'm hoping to "spruce up" my blog and get a button that will take you directly to her story.
Anyway, I haven't caught back up on everyone except to see a "surprise" baby for Kelp!! CONGRATS!!
I hope that I can get on here more and post some on the military infertility board since it is a genetic issue we have a 1 in 4 chance of passing the disease on to future children so one option is ivf/pgd for future children which we are exploring right now.
If any of you have any questions or want more information about SMA please don't hesitate to ask or email me. It helps me to talk about all that happened.
Love to you all,
Results 1 to 10 of 12
02-08-2010, 04:26 PM #1chrishowsdenRegistered Userhas no status.
- Join Date
- Oct 2006
Update-long time since posting-loss ment.
Last edited by chrishowsden; 02-08-2010 at 07:37 PM. Reason: Added blog address
02-08-2010, 05:38 PM #2
I am so sorry to hear about your loss.Michelle&Court 13 crazy years!
02-08-2010, 06:05 PM #3
Hi! I remember you. Isn't your oldest about 2 now? I think you and I may have been pg at the same time. I am so sorry about the loss of baby June. I have heard of that disease. There was a couple on TV whose child has it and they were trying to raise money for an experimental procedure which may or may not help her. I think it's great that you are trying to raise awareness. What is the link to your blog? I would like to see her picture and read about her story. Again, I am so so sorry. May God give you and your DH comfort. Take care.
02-08-2010, 07:43 PM #4chrishowsdenRegistered Userhas no status.
- Join Date
- Oct 2006
Virginia will be two on 2 March. We were pregnant at the same time. The awareness is on the rise and I foresee the genetic testing for this becoming as common as the cystic fibrosis testing.
I just updated my original post with the blog address and my email.
But I will include it here too.
It's a pain since I don't have a button to take you directly to her story but if you just scroll down in the archive section and start reading around 5 October I blogged every day until she died.
They are saying that there is a cure/treatment within reach. Hopefully 5 years out. It does involve stem cells but it is very promising. I have several videos mentioned on my blog too that show what it's like to live with this horrible disease. I am torn most days between being thankful that she didn't live long with this disease and just wanting her back no matter what condition she is in.
I'm glad to be back!
02-09-2010, 10:25 AM #5
Hi, thanks for posting your blog. I was able to see her picture, but my computer quit responding so I'm still working on reading her story. She was so beautiful. Again, I am so sorry. I can see how you would feel torn between not wanting her to suffer and yet feeling like you'd give anything to have her here again. Well, I think talking about it is good therapy.
Also, I wanted to tell you it's good to have you back too. I remember you now. I have your e-mail address in my address book. I think I e-mailed you a diabetic diet or something when you were pregnant with Virginia. It's hard to believe how fast the time has flown. Sarah just turned 2 and is already testing me. Terrible 2's are definitely here. Cheyenne just turned 4 and seems to be getting easier, just in time for Sarah to become a little monster-LOL. Well, I hope Virginia has a great birthday. Look forward to hearing from you.
02-09-2010, 10:59 AM #6
I'm so sorry Molly. So very sad.
Me (39), DH (39)
DSS (16), DSD (14), DSD (10), Barking Son, (7)
Dx: Me~Unexplained, DH~irreversible vasectomy
IVF/ICSI/MESA - Jan 09 (Walter Reed)
Twin boys born 9/28/09
02-09-2010, 01:08 PM #7
02-09-2010, 10:41 PM #8
02-10-2010, 02:18 PM #92boys4meRegistered Userhas no status.
- Join Date
- Aug 2006
- somewhere in America
- My Mood
Oh my goodness. I am so very sorry for your loss. It brings tears to my eyes to read about the untimely passing of baby June. Atleast you have the comfort of knowing she is in heaven with Jesus. Many, many hugs to you.me (33) Dh (42)
TTC for 3 1/2 years
1st IVF/ICSI TWIN BOYS.
C and A arrived on 9-22-07. We are 5!!!!
02-15-2010, 08:51 PM #10
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