September 24th 2004 we brought our precious babies home from the NICU to join our family for real! After months of agony and worry we finally felt relief!
Here is where my journey began...
At my first OB appointment at 8 weeks during a routine ultrasound my OB discovered twins. I was in shock. He mentioned in passing he did not see a membrane and when I inquired if this was cause for concern he tried to ease my mind telling it was but he had never had it happen to a patient ever in his practice. Those odds should have eased my fears but somehow they did not. I went home and read about MOMO twins and stayed up all night with worry. I called my OB is desperation the next day and was given no relief and no assurance. Weeks and days dragged till I could get another check. At 12 weeks I was full of worry they would not even see two babies alive. After confirming they were still there they still could not find a membrane and he mentioned he could not rule out conjoined twins. My ob still told me it was too early to tell anything definitive and I again waited for more days and weeks of agony. Not yet even knowing if my babies were conjoined! At my 17 week scan the ultrasound tech confirmed to me she did not think there was a membrane at all but that she knew they were not conjoined. She was a bit shocked I had not seen a peri and called from her cell phone to get me in to friend the next day. I was so relieved since my OB seemed to be putting me off all the time, like I was worrying over nothing.
At my Peri appointment the nurses seemed confident that they would find the membrane (it was so rare). The world fell from under us when they all confirmed what I felt I already knew, the girls were MOMO. My doctor was full of compassion but his diagnosis was grim and I was horrified. I thought I was prepared for this, hearing the cords were already very tangled, that the babies could be born as early as 25 weeks, that we would we be lucky to get them here at all was truly unbearable!
After consulting this monoamniotic.org I was able to gain some strength and knowledge and with that and my faith in God I could make it each day. I was monitored outpatient once a day from week 24-32 with the understanding I would go inpatient at any sign of trouble. I received dopplers weekly and two separate rounds of steriods (one at 25 weeks one before delivery) Every day seemed ok and the babies were fine, yet it was still agony. Every single day was filled with stress and fear as I never knew if I would find my babies alive at my next appointment! At 32 weeks we all became increasingly nervous with the odds and the gravity of the loss was very real and we delivered. Everyone at my delvery was shocked at the cords and we were told by our peri/MFM that he felt it was a miracle we delivered that day! Hailey and Sydney both came out crying and were wonderful. They both were on a vent for several hours but quickly were off and put on nasal canula. They spent 29 days in the NICU learning to eat and get bigger. Not the easiest time.
They came home without monitors and off oxygen and almost normal, just tiny. They were small. We did RSV shots, and I was able to sucessful nurse for 13 months. The girls have added more joy than I could ever have imagine to our family. Daily I thank God I have them. I appreciate life and their sweet presence so much after going through that horrible pregnancy. They are healthy and chubby and completely normal.
Looking back and knowing how much these babies mean to us and because more current research has been released (The Heyborne study) I am a big advocate of inpatient monitoring. I would demand it. When I delivered my twins it just was not being done routinely. Now with the newest information its being done all the time. My peri (with whom I still keep in touch with) now follows the new protocol. He admits patients between 24-26 and they are monitored 3x a day up to 24 hrs a day till delivery.
All of you recently diagnosed please realize you can survive this and get two miracles. It is full of challenges and trials but you can do it. There is a lot of hope and research out there to help you. I had great success! Please email me or comment. I am happy to help in any way. Reach out to Monoamniotic.org as well. I help (along with Angie) with that site and would be happy to offer support and information. You can also visit my personal blog at http://our-munchkins.blogspot.com/.