And then a Little Sadness Snuck on In...

Well, it's happened...I'm 30 weeks and am starting to go a leeeeeeeettle bit batty in here. Most of my blogs have been positive but I am going to just write from the heart and shoot straight about how I am feeling this week, and that is not so peppy. 6 weeks in here and I guess it's not so bad if it's only happening now but I have 2 weeks to another month to go so I have to just think day by day. I think it is more not knowing exactly when the end will be and just wanting to know everything will be ok, but I cannot know that. One of my doctors is on vacation and will be back next week and then the group of doctors will make a decision about when we are delivering. It was originally 32 weeks but since my babies are doing so well and looking so good on the monitor, some are thinking they want to push it a little further but not go past 34 weeks. It is a mind game for everyone, with no true "right" decision because there is too much we don't know. I realize if I just GET to 32 weeks I am lucky and so that's the first goal.

All along I have remained so grateful, patient, and happy overall, and have known that this was given to me from God and He will be the driver, I am the passenger. But for the last few days, I've been really struggling to remember that. When I talked with one of my doctors today, he said that most of them are leaning towards a 32 week delivery but the head MFM doctor and the NICU doctor says 34 and no decision has been made. I opened up a bit about how I am starting to get really worried and am really confused myself as to what the right choice is. I asked him if it was his wife carrying his babies what he would do and he said probably 32 weeks. He told me that while they will all try to agree and make a decision next week, they will listen to what I say and ultimately it will be up to me. If I say 32 it's 32, if I say 34 it's 34. That is a HUGE decision that I feel such responsibility in and it is killing me. I am my babies' advocate. If I decide 34 weeks - because of less preemie risks like brain bleeds and deadly NEC, but the babies die inside of me from cord compression in between 32 and 34, I will feel responsible for the rest of my life for not delivering at 32. On the other hand if I decide 32 and they come out but struggle or die because of preemie complications, or have permanent problems for life, I will always question whether if I kept them in until 34 if they would have been ok. With the mortality rate rising by 11% each week past 32 I guess I lean towards getting them out, but when I read about all the things that can go wrong with preemies that young, I really freak out and think it might be better to go longer. People think that if the babies come out at 32 weeks and are doing well that everything is ok and that is not true. Things like NEC which is very deadly and a torturous death for the baby only present when the baby is up to 2-3 weeks old. We are not out of the woods until the babies come home. I have always known that this pregnancy comes with very real risks, complications, and tough decisions at the end, and now that the end is about here and I google my little heart out to try and better educate myself I AM GOING NUTS!!!!!

Today I went to Maternal Fetal Medicine for my weekly ultrasound to check the blood flow through the knotted cords. Everything looked good. I have made it to 30 weeks and that itself is worth doing the happy dance over. But for some reason when I am in that dark ultrasound room, looking at my babies, and looking at the tangled cords I just want to cry. The reality of what MonoMono means is in front of me, it's literally looking at life and death. Life in my precious babies hearts beating and little limbs moving, and death in the mess of the knotted cords. Tons of babies have died from what I am looking at, what is inside of me, and nobody can tell me that everything will be okay because we don't know. I have done great not often thinking about or dwelling on the negatives, but in reality there is a chance I could have to deliver stillborn babies, or have a preemie with a disability for life, or a baby or two that could die from complications after they are born. This is all real and while I choose not to think about it 95% of the time, I also don't want to be naieve. I trust in God, and I need to remember that. A friend texted me this morning that while she was praying for the babies she felt God say a reminder that these babies are not mine, they are His. I have told myself that all along and I need to reframe my thoughts to remember that. It is just all very scary and a lot to handle. I know it's not abnormal to be emotional in a time like this, and the nurses always comment on how positive I am compared to other inpatient women and joke about where I get my happy pills etc...but I've just had some down days. I trust in God and put my faith in Him and that is where my happiness and hope come from, but God cannot make the decision of when to take the babies, whether 32, 33, or 34. I have to. I can pray for guidance, but it all comes down to my decision and that is a lot of pressure when it is two innocent lives. In a way as long as they are 32 weeks I hope they just come on their own so nobody has to decide.

Here is an example of one of the many Momo studies that encourages 32 weeks, I've read tons of these, and some advocate 32 some 34:

RESULTS: Thirty-three pairs of monoamniotic twins were identified. Excluded were three women, who chose to terminate the pregnancy. Total survival rate was 60% (of 60 fetuses, 36 were born alive, but one neonate died due to sepsis). Two pairs of twins died after 32 weeks. In the 10 twin pairs who died in utero, cord entanglement was documented in eight (80%). There were two cases of twin discordance and two cases of twin-to-twin transfusion syndrome. One twin of the live-born group had congenital transposition of the great arteries. Furthermore, one of the hospitalized patients was delivered by means of an emergency cesarean section because of a non-reassuring non-stress test at 30 weeks.

CONCLUSIONS: Women with monoamniotic twin pregnancies should be advised about the very high mortality and morbidity rate. Early diagnosis, close in-hospital antenatal surveillance starting at fetal viability, and elective delivery at 32 weeks would reduce the antenatal mortality.

So you can imagine why my doctors and myself might feel a little stressed!!! What I do know, is I am already blessed with 2 perfect and healthy little girls who are waiting for me at home and just to have that I am already rich!

On a positive note, my 2 year old Abigail has finally all together stopped crying when she leaves me and that makes our goodbyes a lot easier to handle emotionally. She now calls the hospital "mommy's house", and she says, "Goodbye mom! See you next time!" and gives me hugs and kisses. Once she has said her goodbyes, I am not allowed to so much as hold her hand...in her mind she has separated from me and I can't even touch her! We have gone from prying her off of me while she is screaming, to this! My husband James says that she has become quite the independant, and has to do everything herself, including putting herself in her carseat. She always has been content to play by herself, but dependant on me for a lot at the same time. While in some aspects I am sad to be losing my baby and the bond we had, I also realize this is perfect in the fact that I will have two tiny babies to bring home and will appreciate the independance Abby now craves. The Good Lord knows what He's doing :)

I am also excited to report that this week they decided to try stopping the 3AM blood sugar check  - hooray for no middle of the night needles! That's about as exciting as it gets in here, and I am excited!!! Speaking of excitement, I also get an ensure shake at night now which is also quite thrilling because as a diabetic it is like a treat, and it beats the alternating chicken and tuna salad I was getting every other night. Try eating chicken or tuna salad every night for your only snack for 5 weeks straight, I guarantee gagging begins! If I see chicken or tuna salad anytime in the near future I will scream and run for the hills! I am not a meat eater as it is really, and I already order double meats with breakfast and lunch to help the babies grow. The dietician would like to see me gain some more weight than I have been, and who would have thought because all I really do is sit here and eat!

Well I hope my next post is sunnier :)  I will be working hard to just keep the faith and get back into the mindset I've been in all along. Today my babies are alive and WELL! I'm still loving getting food delivered to my bedside, someone doing my wash (thanks babe) and someone cleaning for me! I am really really excited that it won't be much longer until I get to go HOME sweet home, to my big comfy bed with my husband beside me, and be with my big girls all day :)

For my fellow MonoMono mommies who I know also face this decision, here is a great link I found to a WHOLE BUNCH of studies, that might help you and your doctors with the big decision:
http://www.ncbi.nlm.nih.gov/pubmed?linkname=pubmed_pubmed&from_uid=15842206

And this website explains week by week preemies to you, I love this site and it really focuses on positive:
http://preemies.about.com/od/preemieagesandstages/ss/PrematureBabiesWeekbyWeek_6.htm