Wednesday, October 3, 2012

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

14 comments:

  1. I am impressed that you are honest enough to post about the "down" days. I definitely had some of those, but never wrote about it. When I read your blog, I feel like I am going back and reading about my own experiences~ it already feels like a lifetime ago (I promise this time will be over soon and it will become a distant memory).

    Our girls were delivered at 32 weeks and 1 day. I know that every delivery and every baby is different, but we have not had any major complications in the NICU~ so far. They are now a month old, and both are doing well.

    Close to the end, some of the doctors were talking about letting me wait and go past 32 weeks. It was so frustrating to talk to different doctors and hear different information, different opinions and be offered different options and then have that decision put in my hands. Aren't they the professionals? Aren't they the ones with the years of school and experience? How can they put that decision in our hands?

    My husband and I talked about it and our ultimate decision was that we would rather deal with complications of 2 live babies than risk not having any babies to care for. In the end, the girls started showing signs of distress, so it wouldn't have been an option to go past 32 weeks.

    I am sorry that you are stuck in this difficult, frustrating and stressful situation. Keep talking to your doctors, nurses, the NICU team, your husband and the Lord.

    A line of scripture that helped me a lot was "believe that He has all wisdom, and all power." I pray that the Lord will guide you and your doctors will make the decision that is right for your babies.

    Good luck these next couple of weeks. There really is an end in sight and I know tomorrow will be a better day!

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  2. Thank you for your comment and encouragement Jen! I like that verse, I need to keep it in mind! I also try to remember "In Him, all things work together for Good according to His purpose" and "trust in the Lord with all your heart and lean not on your own understanding" and "I know the plans I have for you, plans to keep you and prosper you...". I am so happy to hear your babies are doing well! I bet it feels great to have them reach that month mark and be past the preemie risks!! I need to read your blog today, I look forward to it :)

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  3. Hi, Even your "sad" posts are very positive. I love you and we are praying for you here in Middletown. Send my love to your mom, Aunt Jenny.

    Stay strong in the LORD!

    Love, Megan a.k.a. your favorite cousin :o)

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  4. Awe thanks Megan :) I appreciate it!!!

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  5. حتى تتمكن من الحصول على كافة خدمات التجهيز لمطبخك ، فالآن يمكنك الحصول على ارقى معدات مطابخ المتميزة من كبرى الشركات التي يقدمها موقعنا الالكتروني

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  6. تعمل على توفير كل خدمات عمليات التنظيف شركة تنظيف بالبخار بجدة بالإضافة إلى الخدمات الاخري شركة تنظيف كنب بالبخار بجدة التي تحتاجها ربات البيوت وأصحاب الشركات شركة تنظيف سجاد بالبخار بجدة والعقارات ومن خلال شركتنا المتمزية فى خدمات تنظيف المفروشات شركة تنظيف مجالس بالبخار بجدة بالبخار بافضل الاسعار تعرف على كافة شركة تنظيف بالبخار بمكة الخدمات المتميزة التى نقدمها شركة نقل عفش بمكة اليكن والى كل عملائنا الكرام

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  7. شركة نظافة خزانات بمكة تقدم خدمات لا يوجد شركة تنظيف بمكة منشأة لا تحتاج لها حيث أن الخزانات تعد من أهم المحتويات التي تحتاج لها المنشآت المختلفة خاصة شركة مكافحة حشرات بمكة في المملكة العربية السعودية التي تعتمد على المياه الجوفية ومياه الآبار شركة تنظيف خزانات بمكة والعيون وتخزينها في خزانات شركة تنظيف بالبخار بمكة بعد تصفيتها وتنقيتها لذا ظهرت الحاجة الشديدة للاستعانة بشركة متخصصة شركة نقل عفش بمكة يستعين بها مختلف الأشخاص في تنظيف وتعقيم الخزانات لديهم من أجل الحفاظ على المياه نظيفة وغير ملوثة

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  8. العمالة الفلبينية معروفة بأنها تتعلم شركة نقل عفش بجدة بسرعة كبيرة وجميع الأعمال التي تسند اليها تخرج جودتها بمستوى عالية فى حين ان مستوى الاجور لها منخفض وعليه فإن الشركة شركة تنظيف بالبخار بجدة تعمل على توفير تلك النوعية شركة تنظيف دكت المكيفات بمكة من العمالة ومن خلال افضل شركة نقل عفش بجده شركة تنظيف دكت المكيفات بجدة عمالة فلبينية سوف يتم الحصول على عمال متفوقين وقادرين شركة تنظيف دكت المكيفات بالطائف على نقل الاثاث بعناية كبيرة من اي مكان حتى الادوار العالية وتتم عملية النقل تبعا للأسلوب الحديث وهي كالتالي :-

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  9. توفر شركة تنظيف دبي أفضل خدمات نظافة شركة تنظيف بدبي من خلال خبراء في عالم النظافة شركة تنظيف كنب بدبي لديهم احتراف ومهارة عالية وعلى درجة كبيرة من الأمانة والالتزام لديهم حلول شركة تنظيف عجمان عملية وسريعة لجميع شركة تنظيف بالشارقة مشاكل التنظيف ملتزمون بتلبية شركة تنظيف ابو ظبي رغبات العملاء وتنفيذها وعدم إهدار الوقت

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  10. تنظيف المساحات الشاسعة ليس بالأمر الهين شركة تنظيف دبي ولا يقدر عليه فرد واحد أو الخدم الذين قد يتواجدون شركة تنظيف ابو ظبي بالمنشأة حيث أنه يلزم توافر معدات خاصة شركة تنظيف كنب بدبي من أجل التنظيف تساعد شركة تنظيف بالشارقة على تقديم أفضل الخدمات وتعمل على تيسيرها بأسعار لا تعد عبء على من يبحث عن شركة تنظيف عجمان هذه الخدمات لذا تقدم الشركة كافة الخدمات التي تلزم في تنظيف الفلل شركة تنظيف العين بما تحتويه من محتويات وأغراض

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  11. سميت بحشرات الفراش لانها غالبا ما تتواجد شركة مكافحة حشرات بمكة فيه وتعيش وتتغذى على الدم سواء دم الإنسان أو الحيوان شركة تنظيف شقق بمكة تعد الحيوانات شركة تنظيف خزانات بمكة الأليفة ذات الشعر شركة مكافحة حشرات بالطائف الكثيف أيضاً أحد المصادر الناقلة لهذه العدوى تقوم حشرة البق بوضع البيض شركة نقل عفش بمكة الخاص بها على المراتب والآسرة شركة تنظيف خزانات بالطائف والذي يتميز بلون ابيض شفاف وملمس لز

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  12. يمكنكم اللجوء لتنظيف منازل عجمان إذا شركة تنظيف دبي أصبحتم في حاجة إلى تنظيف المنزل شركة تنظيف عجمان في أي وقت تحددوه أنتم , فقط اتصلوا بتنظيف منازل عجمان شركة تنظيف بالشارقة وسوف يرد عليكم فريق متخصص من خدمة العملاء والذي يحدد معكم المطلوب شركة تنظيف ابو ظبي والوقت المحدد لإتمام تلك المهمة الضرورية وفي أسرع وقت ممكن سوف تجدونها انتهت شركة تنظيف كنب بدبي , فقط انسوا هم الأسعار التي تقلق الجميع في حالة الرغبة في التعامل مع أي شركة نظافة

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  14. كما يقوم فريق العمل بتنظيف الموكيت حيث أن الموكيت شركة تنظيف بدبي يعتبر من أهم الأشياء التي توجد في المنزل ويتميز بوجود الزخارف المختلفة شركة تنظيف بالعين به، لهذا فإنه يحتاج إلى التنظيف بكل دقة وحرص ويتم هذا من خلال استخدام شركة تنظيف عجمان الماء الفاتر والمنظفات المخصصة للموكيت، أو يتم تنظيفه عن طريق البخار شركة تنظيف كنب بدبي حتى يعطي أفضل النتائج وفي أسرع وقت
    تعتبر طريقة التنظيف بالبخار من أفضل شركة تنظيف بدبي وأحدث الطرق التي تستخدم في عمليات التنظيف شركة تنظيف كنب بدبي للوصول إلى أفضل النتائج، وتقوم شركة تنظيف بالبخار في دبي شركة تنظيف بالشارقة في استخدامه في العديد من عمليات التنظيف؛ لهذا فإن جميع الأعمال شركة تنظيف ابو ظبي التي تقوم بها الشركة شركة تنظيف بعجمان تكون على درجة شركة تنظيف بدبي عالية من الكفاءة شركة تنظيف بعجمان، ومن ضمن عمليات التنظيف التي تستخدم بها البخار

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