Thursday, January 2, 2014

21 week 5 day pregnancy update

Well, in the week since the last ultrasound and my most recent blog post, I have been leaking amniotic fluid like crazy - way more than what could have been left outside the membrane, and still needing to drain off, so I was already expecting to find out that the patch must have failed.

At our appointment today, Baby B was doing well, though his fluid level in his sac has dropped due to the leaking (but is still within safe parameters). He was measuring right on target size-wise, had a good heart beat and blood flow, full bladder and healthy kidneys (which means he has enough fluid), etc. Sadly, however, the u/s also confirmed that Baby B's membrane is still ruptured. It is not clear if the patch held for a while, and then failed, or never really took in the first place. In any case, the patch was unsuccessful.

There is not much else we can do at this point. Dr Chmait told me that doing the patch a second time has never been successful, so it probably would be pointless to go back to L.A. a third time and try that. It is possible to keep carrying Baby B, but there is the obvious risk of infection, preterm labor, complete rupture of the membranes (as opposed to my "high leak"), etc.

I am on modified bedrest, and was told to lie down each day from 10 to noon and from 3-5 pm. No driving, no strenuous chores, etc. Just standing, walking and sitting the rest of the time. I leak more when I am lying down, so I think that's why they don't want me to just be on complete bed rest. However, being up and even moderately active ups my chances of a complete rupture of membranes, and/or premature labor, so it's a bit of a catch 22.

While I theoretically could go to full term, it is very unlikely to happen with my compromised membranes. Dr. Chmait thinks most likely I would have the baby sometime around 30 weeks, based on previous experience with moms in my situation.

I am going back for another ultrasound in 2 weeks, at which point I will almost be to what is considered "viability" - 24 weeks. At that time, I will also receive a steroid shot to mature baby's lungs, in case my body goes into labor prematurely. Of course, giving birth that early would be extremely dangerous to baby's survival and health. I am really aiming and praying for 26 or 28 weeks as a bare minimum. My membranes ruptured at 18w 5d, so already 3 weeks ago. There really is no hard and fast rule to how long this pregnancy could go on. The things we are watching for are (a) making sure baby has enough fluid left in his sac, (b) preventing premature labor due to the compromised membranes and leaking, and (c) preventing infection.

My MFM in town, Dr. Elliott, is very supportive and hopeful about the idea of me still having a home birth, but obviously that's not an option if baby is premature, or if there are any other complications. He seems to be more optimistic than Dr. Chmait about me carrying this pregnancy at least somewhat close to term, but then, Dr. Chmait sees more cases like mine. So between now and reaching viability, I will need to find a hospital with an excellent NICU, as close to the house as possible, as well as an OB that works there to deliver me in case that becomes necessary (which is very likely). 

There is a chance that as baby continues growing, he could eventually stop the leak by forcing the broken membranes against the uterine wall, but I'm not counting on that. Seems like at every turn in this pregnancy, we have consistently drawn the "short stick" on all the possible risks and complications. So I am not holding my breath on that happening. 

In other news, I have health insurance as of yesterday, so that should ease the financial burden somewhat going forward. We picked names for the boys weeks ago, but have not yet shared them publicly. For some reason, that just seems too delicate at this point. The other kids have been on Christmas break from their school work, which we used to catch up on any gaps from the craziness of the last two months. Going forward, me being stuck on a sofa should actually be very helpful for their staying on track. My awesome mother-in-law, who has been here for a full month helping and making it possible for my husband to take me to L.A. as well as local appointments, left today. My husband and older kids will be doing my work around the house whenever I am down, as well as anything remotely strenuous, any errands, etc. Plus, my MIL is available and willing to come back at a moment's notice should it become necessary, and for sure when baby is born.

Thank you all so much for your continued prayers, support, gifts sent to the house, etc. I wish I could post here more often, or respond to all comments and emails, but sitting up at a desk typing is actually very strenuous on my stomach. Though I certainly love getting and reading emails, which I can do from my phone even while lying down. During the times that I feel comfortable sitting up, I try to get caught up on all the thank-you cards that I need to be sending out. I apologize to all who have not yet received one from me. Please know that we are very thankful for, and humbled by, the outpouring of love and support we have received from so many. I am working hard on trying to make sure to get a personal note out to everyone within a reasonable time frame (barring any more serious complications that would take all my time and attention, of course).

Please continue to pray for the following:

- That I would be able to carry the baby to term, or as close to it as possible.
- That baby would continue to grow and thrive, and have enough fluid left to do so.
- That if baby is born prematurely, he would live and be well.
- That I would find a supportive OB.
- That I would have peace about continuing to leak - it is so incredibly unnerving to me! Even though it has been going on for weeks now, there is nothing like waking up in the middle of the night for the third time, having soaked through a maternity pad.
- That I would have peace about this pregnancy, period. Which seems like a really tall order. I don't think I will be able to exhale until this is all over, at which point I will probably suffer some serious PTSD.
- That the membrane would heal/seal of its own, or that at least the leaking would slow down again considerably. 
- That baby would be safe from infection. 
- That our family would grow and be strengthened as a result of this trying time, and that we would find a "new normal" we can all be happy with for the time being. 

If you have any advice or resources to share, please feel free to do so in the comments.


  1. I really appreciate your taking the time and energy to update. I cannot stop thinking about you and your precious family. Prayers will not cease. Thank you for giving us specific prayer needs. Bless you and yours. Tiffany F.

  2. When you get the steroids, take ALL your jewelry off. Remove your contacts after the shot. When I got them over night I swelled so much my arm was swollen around my watch and my ears were swollen around my loose earrings. I had to cut a little string bracelet off my arm because I was so swollen around it. Also my eyes swelled up so much that my contact lenses didn't fit for about a week. The shot site will hurt really bad.

    I absolutely got PTSD from my high risk pregnancy and NICU stay. It's why my kids are so far apart. I was terrified to even think about getting pregnant again.

  3. I am so sorry for the difficulties and loss you have experienced with this pregnancy; I will keep it short and say you and yours are in my prayers daily and I hope for the very best outcome. Would a wheelchair help at all; I mean I don't know if your home (doorways etc.) would accommodate a chair but if not would maybe a walker with a seat be helpful to keep you technically off your feet even when you must be up and around? It's just a suggestion, I will keep praying for the baby to maximize his time on the inside. Should your Dr feel a walker or chair would be helpful, insurance should cover it. This is a link to the kind of walker I am referring to

  4. I hope you can accept this from someone who you believe will be burning in hell one day, but I am indeed praying for you. I hope you can carry this baby as close to term as possible, and I wish you and your family peace.

  5. I, too, am grateful to have your specific prayer requests. It has got to be exhausting both physically and emotionally to be going through what you are. We are praying for you, for the healthy delivery of your son whenever that may occur, and for peace for you and your family.

  6. Zsuzsanna, I am on the complete opposite side of the spectrum from you, politically and religiously, but my heart breaks for what you are going through right now. I hope that you will find the resources you need after the birth to process all of this; what a heavy load to carry, alone or otherwise. You are in my prayers.

  7. Thanks for the update. You are constantly in my thoughts and prayers. Glad to hear Baby B is doing well. Tell everyone we said hello and thank you for the letters your kids write. My children get so excited every time a letter comes.

  8. Maintaining peace in the midst of the storm is hard. When my dad was being resuscitated I got a picture in my head of a huge hand and my dad lying in it. I knew he would live somehow and he did. The peace was somehow imparted to me by the Lord Jesus concerning my father. It was awesome because i was so stressed with other issues in life. I pray that God with give this peace to you. I pray that all will be well. God bless you all at this time.

  9. I have two friends that had very early ruptures with their membranes. Both were carrying triplets and both ruptured at 12 weeks. Ironically, they both live in Las Vegas, but didn't know each other during their pregnancies. My friend Joselle had her trio at 29 weeks and although she heard many, many times that Aspen would never live, she did. She's in 2nd grade now and she's a lovely little girl. My other friend Cathy had her trio at 27 weeks. Her son Matthew was also not expected to live and he's in third grade now. He's incredibly smart. He does have issues from being shrink-wrapped in the membrane and has had to go through some surgeries. He wasn't expected to ever learn to walk, but he was walking by the time he was two and he's smart as can be and a great kid. I have the utmost confidence that Baby B will survive and he will be a wonderful addition to your family. My friends had no fluid *at all* in their sacs and their kids survived, so I'm certain if has some fluid, then he's going to make it and likely won't even have the physical issues to deal with as a result of having no fluid.

    I am so sorry you are going through this and for the loss of Baby A. I completely understand your sentiments about having PTSD from it. There is nothing more traumatizing that thinking you will lose your child(ren) every hour of the day. I have been there and wouldn't wish that on anyone. It's the most helpless feeling in the world. Please know that even though Baby A is no longer here on Earth, you will always be the mother of twins and Baby A will always be watching over his brother. Praying for health for Baby B and a long and continued pregnancy. Hang in there. You will make it!

  10. Zsuzsanna, you have been very much on my heart since I read about the TTTS. I am so very sorry about the loss of Baby B. I have been thinking about you in light of two blogs I used to read, one is now private but the mother was in a situation similar to yours although the twins were fraternal, one passed away in utero before 20 weeks, and she was able to carry the other twin to term. The other blog is public (flotsamblog) and similarly one twin passed away at around 19 weeks, and the other was born at almost exactly 24 weeks. She is now a thriving 6-year-old. I hesitated to share these because neither shares your faith convictions (although the one who blogs privately is a Christian). However they both wrote about the strangeness of grieving one twin while at the same time rejoicing in the life of the other, and the ongoing tension of living day to day not knowing what the outcome would be for the living twin. My heart goes out to you and I join you in prayer for the life of Baby A, knowing all is in God's hands and his love will bear you up. Hang in there.

  11. Still praying lots for you and your family. Thank you for the update even though you don't even know most of us. I had a friend give birth at 24w3d or so and her "little one" is now 5 years old and doing great. It was very hard at the the time, of course, and she didn't even know she had complications until she went into labor at that point in time. One of her favorite things after the baby was born was pumping milk for him. She said it made her feel very connected to him, and she could still be his primary nourisher at such a tender age.

    I can not imagine what you are going through but God can. How in world He could ever send his perfect Son into this horrible world, to be so vulnerable for all those years, is mind boggling. Sure, He is God and He is in control but he knew all Jesus would have to suffer, and through that God felt immense pain as well. Sigh... The more I grow as a Christian and a parent the more amazed I am at God. May you find some sort of peace during this time.

  12. Dear Zsuzsanna, thank you for the update. My family is praying for yours. Please don't feel pressured to post if it is uncomfortable, or in anyway is stressful to your pregnancy. Although we love to hear about how things are going in "your neck of the woods" it is more important at this time for you to take care of yourself and your sweet family. <3

  13. I have had the steroids numerous times. When I had kaitlyn at good Samaritan hospital I was there for a month on complete bedrest. I had her at 29 weeks and received steroids to
    develop her lungs. Good Sam has a great nicu which is part of Phoenix childrens hospital. When kaitlyn was born she did so well othe
    r that being only 3lb and not having a sucking
    reflex yet she breathed on her own and didn't have to be intibated. As far as location, good Sam is not that far from your home. It's at 11th st and McDowell right off the 10. I had Macy at a hospital at 30 weeks and she was transported by ambulance to the bug phoenix children's hospital. I can not tell you in words how much I love them. She had to be intibated for only 2 days had a rough start in life but look at her now.

  14. The author of the public blog mentioned above, Alexa Stevenson, has written an excellent book about her experiences with PROM in a twin pregnancy, the death of one twin, and the NICU stay of the other. It is called "Half Baked: The Story of My Nerves, My Newborn, and How We Both Learned to Breathe". As the previous poster said, she does not share your faith convictions, but you might still appreciate knowing that you are not alone, that others have been through such an experience and come out the other side.

    Wishing you and your family all the best during this trying time.

  15. We are always praying for you and your family, Zsuzanna. We love reading your updates, but please get as much rest as you can. Praying and hoping everything works out for you.
    The Freund Family

  16. I'm glad to hear your son is still alright. I'm still praying for you and him. I have some friends who don't know who you are but are also praying for you as per my request. And knowing them I know they will. I don't know if it would do any good, but I've heard that taking gelatin is very good for healing bone, artery, and skin tissue. Maybe it would help with healing the membrane. I don't want to give false hope, but it was just an idea that came to me that I thought wouldn't hurt to at least try. If you do decide to take it, make sure it's gelatin from 100% grass fed beef. You will continue to be in my prayers.

    1. I would second the gelatin suggestion! All I've read says that it's excellent for tissue health, as well as gut health, and it seems like that would be an excellent risk-free way to prevention full PROM. Azure has grass-fed beef gelatin, I believe! :)

    2. Thank you for the reminder about gelatin. I ordered some on Amazon tonight.

  17. Hi
    We are praying for your little one and think about you every day. I don't have experience with the NICU but do know that you would definitely want to look into getting a double Medela breast pump to give the baby your milk while in the NICU. Also,my youngest was full term however I did have PROM and we waited 60 hours and the labor would not start.I went through a hard time after that because I had so hoped for a home birth. As mommies I can understand the anxiety and fear of the unknown and can only say that sometimes we will never know why these things happen but we have a heavenly father who does. We have to grieve and give ourselves time to recover it doesn't happen overnight.God be with you all and give you the grace you need.The Withams

  18. Zsuzsanna,

    I will continue to pray for you, your son and your entire family.

  19. There are three excellent NICUs close to your house Good Sam, Desert Sam and St Joseph's Hospital and Medical Center. Sam/Banner ones have their own Children Hospital located on the campus of Desert. St Joe's has a relationship with Phoenix Children. The big plus with St Joesph's is that they have Nurse Widwifery program in house and if you want to be delivered by one of them they will allow it and if things go south they can call in an OB/GYN, also Dr Elliot has an office across the street from them. Majority of their OB/GYN that are employed by St Joseph's are women and are excellent. Another person that might be an excellent resource is your current midwife, they all know each other.
    Wish you the best.

  20. thank you for sharing your updates Zsuzanna. I will continue to pray for you and your family. I am so sorry for the loss of your precious baby. Having miscarried before at 24 weeks I understand the devastation of your loss. I am praying for peace in your heart. One thing that brought me comfort was the thought that the first thing my baby ever laid his eyes on was our Lord!

    I shared with you in one of your other posts about our twins who were born at 23 weeks and 4 days.

    Being in Australia I cannot offer advice on the best NICU hospitals in your area but I hope you find one that was as amazing as ours. The NICU is simultaneously the most terrifying horrible place on earth as well as the most comforting. (I am not sure how quite to word that to make sense)

    I cannot reccomend highly enough accepting all forms of help. Social workers in the NICU are a fantastic resource (I am not sure if that is their job title in the US) but they can put you in touch with local support groups and just generally help you to find your new normal.

    As far as something you can do now; during my short bed rest between my waters breaking and going in to labour I found doing something tangible to reduce infection risk gave me some feeling of control back. The nurses reccomended keeping a container of antibacterial wipes in the bathroom to wipe the toilet seat down before every use and washing all of my clothes (especially underwear) in hot water seperatly from the rest of the family. Changing bed linen and bath towels as frequently as possible was also reccomended but not something we ended up having to do due to going in to labour so quickly.

    I wish you all the best for the next few months I hope and pray you have a long and uneventful time on bed rest!

    Please rest and take as much time for you as you can. I know what you mean about learning to breathe again, my husband and I have only recently said we are both now feeling like we are breathing again now. we have held our breath for so long on this rollercoaster that its nice to be able to look around and take stock of what has happened and focus on the amazing blessings we have. take care of yourself Zsuzanna

    love and prayers from Australia

  21. Praying so much and thankful for this update!!! So thankful Baby B is hanging in there! Keep resting and trusting the Lord. He will carry you through.......Love you!!!

  22. Random thoughts. I hope and pray that baby stays where he belongs for several more months. Other thoughts are I think the risk of infection is high for your baby as your high risk specialist is saying and being born in a hospital might be the safest option just in case he needs emergent nicu care. I will say as someone who has witnessed several hospital births that it is much more about the nursing staff in the hospital as compared to the ob. The ob is present usually just for the births and rounds that day and the next morning while the nurses have much more to do with guarding your room for what you request. I did not have one but in your situation you might want to consider a doula. They are great at making sure your requests are honored and doesn't make your husband have to worry about things other than you. Especially with all your children at home it would probably be nice for you to have someone solely there for you in case an early delivery in eminent and your husband is with the children at home. All so continuing with this rambling post but the baby can be transported to another hospital once delivery has occurred if that would be best for him. Sometimes the best obgyn are not where the best pediatricians are. (Does your midwife have hospital privileges at any of the near by hospitals? I don't know if your state allows it or not, but it might be another option). Also on the random trail you might consider making sure your oldest few children are filling equipped and ready to call 911 if something happens and you can't reach the phone, and your husband isn't around. (I figure planning for bad situations makes them 1000 times less likely to occur). I think you have a pediatrician who you like, I can't remember, but if you do you can call their office and ask who they think had the best nicu, the nurses and physicians almost always have their favorite places.

  23. I am so sorry for your loss.

    I know you don't particularly like doctors or the medical industry, or the insurance industry. You may want to consider, however, how your baby's NICU costs will be paid. Making a decision now to insure that child may improve the care he is able to receive and make the costs to your family more manageable.

  24. 2 Corinthians 1:3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. My nephew was born at 30 weeks and was 3 pounds 3 oz. He was in the NICU for a month. Today he is 9, smart, and healthy. God is able to do exceedingly abundant above all that we ask. Praying for you and the family. I have a son in heaven too that passed away during my pregnancy. I have had two girls since and it is hard even today because I miss my baby. I know you trust in God and all that He has for your family. Grieve the son you have already lost and believe your other son is going to be ok. In reality, he will. Either he will be with you or the Lord so he has a win win either way.It is ok to be inconsolable by people, let God comfort you when people cannot. God loves your boys and He has a plan for them and He will get the glory! Praying for you and yours.

  25. Thank you for your update and for letting us know your prayer requests. I continue to pray for you, your baby and family daily. I'm so sorry to hear of the passing of Baby A, but I know that he is in heaven to be with the Lord forever (which I learned when your husband showed from God's word in a sermon, which greatly comforted me when I reflected on a miscarriage I had a few years ago - at about 14 weeks) and I was able to use those words of God's to help comfort a friend of mine who lost her baby too. While there is such heartbreak I'm sure, we have that blessed hope and know that we shall be with our passed wee ones one day forever.
    Continuing in prayer,

  26. Praying for you and your family in Tn.

  27. Zsuzsanna, I have been an occasional reader of your blog but ever since I first learned what you were going through in this pregnancy you have been in my thoughts and prayers daily. I don't have any experience to share with premature birth or the specific medical issues you have been facing, but I did have a baby in the NICU this spring. (He was born with spina bifida and required surgery very shortly after birth) Until our diagnosis I had been planning a low-intervention birth with a midwife. I hadn't seen a doctor at any point. So it was a big adjustment for us to switch to a c-section and the NICU. But it was a blessing to see what was coming ahead of time, and to be able to prepare for the worst while still praying for the best. Many parents end up with babies in the NICU and no advance warning. When you choose a hospital, ask to tour the NICU ahead of time. (Not sure if your bedrest will get in the way of this, but your husband could still go.) We are in New England, so pretty far away from your area, but our hospital was very accommodating about letting us see where our son would be staying and answering our questions. The doctor who met with us also took notes about our particular concerns and priorities. For example, if breastfeeding is important to you make sure that you tell everyone. Ask about the availability of lactation consultants if there are any issues. Availability of breast pumps in the NICU, places to pump in privacy, policies about asking you before offering formula, etc. My son didn't really have feeding problems, but he was born at 38 weeks so not really premature. Ask for the support you need over and over again until you get it. And start now, because when the baby is born (whenever God decides that will be!) you'll have so much on your mind that it will be hard to keep your thoughts organized. (Your experience with all your other children will also be one of your biggest advantages, though. You know so much more than a first-time mother.) Another thing to think about is support for your husband. I wouldn't have anticipated this until I saw my own husband's experience during our son's NICU stay. The hospital will be very mom-centered. In some ways this is as it should be, because you will be a patient too if you give birth there. But if your husband, like mine, is accustomed to being the head of his family, it can be quite a shock to feel marginalized or pushed aside in the NICU. I'm not even sure they did it intentionally, but it was incredibly hurtful to my husband when he sat by our baby's side for 3 weeks and felt like the doctors and nurses came to me for everything and never asked for his opinions. I ended up (as non-confrontationally as possible) saying something about it, and they changed right away to include him more. Which is why I suspect they weren't doing it deliberately in the first place. But your husband will be going through a lot too, and you will learn to take turns helping each other through the roughest parts and being sensitive to each other's feelings. It's a roller coaster, as you no doubt already know! I'll keep praying for the best possible outcome for you all!

    -- K in Massachusetts

  28. With my 3rd pregnancy I went into pre-term labor at 24 weeks. My doctor never told me what the chances were but I could tell from the medical staff that they weren't excellent. I was on medication and bed rest for 3 months. Went full term and my son, Jordan, is now 22 years old. There is hope.

    Clearbrook, MN

  29. Zsusanna, bless your heart, you've been through so much the past month! I second the advice someone gave above to remove your jewelry before you get the steroid shots. I must add this, as not to scare you, but they're certainly not pleasant. Please be prepared for that, although you've been through so much already that it will probably seem like nothing at all. I'm sure the children are relieved to have a bit of a return to normalcy and it certainly must do you good to have them to focus on and dote over and to take your mind off things while the baby grows. We're keeping you in our thoughts and prayers daily here and appreciate the updates so much. Good luck with finding the right hospital and medical professionals for you, I'm positive you'll find a team that will both honor your sensibilities and take the best possible care of your little one. Don't be afraid to talk to a professional if you find the need, sometimes an impartial shoulder to cry on for an hour is just the ticket to be able to refocus yourself on the tasks at hand. You've suffered a very hard loss and been through two stressful medical procedures, so be patient with yourself and abide in the love of Christ. May God bless you, Pastor Anderson, and the children. Mindy

  30. I hope your baby will be born healthy with all my heart, I hope your family will recover as best as possible from losing the other twin. I wish you the best possible outcome. I also hope your experience makes you stronger and wiser. I hope you see that love is better than hate, inclusion better than exclusion, acceptance better than judgement. You seem a very caring and loving person, I hope you will extend that love to the rest of humanity, even if you don't approve their choices.
    Have strength and courage, hang in there.

  31. oh dear , pet
    my heart goes out to you and your family
    i'm very sorry that you're little baby A passed away the little petal:-)
    but my thoughts are with you for a healthy birth with your other little twin.
    you are strong and will get through all of this ,all of you ,and emerge at the other side stronger, with all your thoughts and learning to share with each other i guess on this whole journey.
    you said to mention any help so i thought perhaps at midwifery you might be able to speak with an experienced midwife who may give further help.
    also if it were possible to contact Ina May gaskin maybe she could give you help!
    and thirdly my husband ordered this herbal book for me though it hasn't arrived yet it's due any day now
    perhaps it may have herbs that could help you and your lil baba
    the book was recommended on
    i think it sounds like a very good book perhaps there may be info in it to help you.
    Genesis 1:29 - And God said, Behold, I have given you every herb bearing seed, which [is] upon the face of all the earth, and every tree, in the which [is] the fruit of a tree yielding seed; to you it shall be for meat.

    Psalms 104:14 - He causeth the grass to grow for the cattle, and herb for the service of man: that he may bring forth food out of the earth;
    lots of love to you ,your baba and all your family
    nora xxx

  32. While I pray of course that everything will go well with the rest of your pregnancy, I would like to encourage you to listen to Pastor Robert Trueloves sermon series "A Quiverfull of Confusion" ( where he biblically dissects all arguments usually used by the quiverfull movement against birth control and proves them wrong. He exposes these arguments as profound misunderstandings of the bible and as commandments of men rather than God that oppose christian freedom.

  33. Praying for you and your family in this time of loss and hardship. ~the Grotte family


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