ever changing

Nothing on this journey has been easy.

As I hit 28 weeks the other day, I started to think that we might really have another child here. The news from last week’s ultrasound that everything looked OK with the baby was very reassuring.

Perhaps with my focus on the growing life inside, I downplayed the risks to me, underestimated them somehow. I took the news about the placenta issues seriously, but I was beginning to feel confident that my new doctor had a plan. But it seems that plan is subject to change.

Today I met with my doctor after she reviewed the ultrasound report and spoke with the attending physician. Again she assured me that the baby looked good. “But,” she said, “I’m worried about that placenta.” You don’t ever really want to hear the chief high-risk OB say she is “worried.”

While placenta accreta usually isn’t diagnosed in advance, I am at risk so they were looking for it. The ultrasound doc is nearly certain that she detected it already. Often the first signs are bleeding during the 3rd trimester. There is no way to prevent it, nothing to treat it. Either they can remove it at birth, or they can’t, which results in a hysterectomy. The idea is make sure the patient doesn’t hemorrhage in the meantime. But there are different gradations of embedding, the most complicated and dangerous of which is when the placenta penetrates through the entire uterine wall and can attach to another organ (placenta percreta). This is the most rare kind, accounting for just 5% of cases. But we know about my odds, right? It’s not just that I’ve been on the wrong end of statistics before. I am actually at increased risk of this because of my prior procedures.

Still, despite my risks and fears, I felt like I was in good hands. I’d been feeling more positive. Recently, I had been thinking about how to re-claim the birth experience to feel more comfortable with a c-section (ironically, I gave away a book on exactly this topic a few years ago). I was thinking of a birth plan to state my preferences to ensure early bonding time with the new baby in the OR and recovery. I was even coming to peace with the hysterectomy I faced immediately after delivery. I thought, if we can bring home a healthy baby, I’ll do what it takes.

So when the doctor told me this morning that the risks of going to near-term were serious and growing, and that she now wants to deliver the baby even earlier, my heart sunk. With delivery at 36 weeks, I was nervous but comfortable. While not ideal, it was close enough to term (a week) that I thought the baby was likely to be fine.

But now? Now she’s saying 34 weeks. The risks of going longer not only create greater risk of deeper embedding and further complications, but also greater risk of an emergency situation over which she would have little control. This way, she can assemble the team she needs and be prepared. They can monitor me weekly. At this point if I had any bleeding, I’d be admitted for hospital bedrest until delivery.

The problem, of course, is now we’re looking at a pre-term baby who will have to do time in the NICU, possibly up to three weeks. For me that changed everything. I felt a lump in my throat. I asked what to expect. I listened to her speak, but all I could think was this baby is now at risk. I asked about lung development, which is a primary concern. I asked about breastfeeding, which would be far more challenging with a premie as well as with the logistics of the NICU. Again I listened to her say that we could try, that they would support it. But all I could think of was how much harder everything will be. Everything. All I could think of was how we would all be separated. Not just me from the baby, but from our daughter and from my husband who will need to care for her while I’m in the hospital. I thought they will send me home without our baby. We live over an hour away.

As the doctor was heading for the door, she stopped, maybe sensing my concerns, my fears. “You’re going to be OK,” she assured me. “The baby is going to be OK.” I thanked her, and I appreciated her humanity in that moment. But honestly I was just thinking, please just go, just go and close the door so I can cry. 

I broke down in the bathroom, literally hyperventilating while trying to pee in a cup. Good sense got the better of me and I put down the cup before peeing all over my hand, so I could just have a good cry. I needed to let it out. I needed to catch my breath. It wasn’t even 9:30 in the morning I had to call Mac before heading to work. I wiped my swollen eyes, blew my nose with a scratchy piece of toilet paper and did some deep breathing. I walked out into the fog and breathed some calm. But of course as I told Mac about the NICU I started crying again. Needless to say, I was completely spent by the time I got to work.

I know NICU babies survive and thrive. I’ve met them, I know. And I need to hear those stories. Because honestly I know too many of the other kind too.

I know I am getting the best care I can get. All the monitoring, the team of professionals ready to go, all of it. I can take some comfort there too.

I know I am so very lucky even to be in this situation. And believe me, I’m so grateful.

But it’s scary as hell too.

 

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~ by luna on July 28, 2011.

33 Responses to “ever changing”

  1. My twins were born at the NiCU at 35 weeks, my friends’s twins at 34 weeks. It was tough, but doable.

    Maybe Esperanza and I can bring dinners to your husband and daughter to make things a little easier…keep us posted.

  2. What an incredibly powerful post. Yay for humanity!! As an odds person sometimes too I feel u-and the body is remarkable–and I Will keep you in my heart with ease ease ease around all of this!

  3. Luna,
    With two baby girls born at 29.5 weeks, who spent 3 months in DIFFERENT nicus in different hospitals (vecause of zoe’s need for surgery) i can assure you that you will get through that period just fine. It will suck at times for sure, but consider yourself lucky to be living in a society where this type of care and monitoring is possible. On so many countries, this would not be an option. Know that you (and mac) will do every second of skin to skin time you can get your hands on. You will be amazed by the intensity of this experience. And know that you will be able to stockpile the hell out of your breast milk that the little one may not be able to consume all at once. And know that you will feel completely humbled by the strength and resolve of the people you will meet with babies far more complicated than yours.
    This is an adjustment period for you for sure, and i feel your pain that comes with shifting your focus from a more natural start, but you will make that shift, you will get through this, and at some point, i promise you, you will feel incredibly grateful that such nicus even exist.

  4. (Of course i meant “in” so many other countries)

  5. A suggestion . . . can you start reaching out to people who might know people near the hospital where you deliver, and begin looking into things such as: a studio apt or motel where hubby & daughter can stay close; recommendations for a babysitter who can start to get acquainted with your daughter NOW and be available for on-call duties near the hospital; ask hospital if they have an NICU mom-survivors in the area who can mentor you, point to resources in area (low cost places to stay, where to get healthy take out, and so on).

    A friend of ours was adopting a baby boy, at birth, at a hospital 90 minutes away. Just by telling people, suddenly a friend of a friend’s aunt offered Maureen the opportunity to stay at her home, 5 minutes from the hospital, until her new son was allowed to come home. Maureen stayed in their guest bedroom for 3 days/nights, and it was right at Christmastime.

    People Want to Help!!! I promise!!! Let them.

  6. I”m so sorry it can’t just be an easy or “normal” pregnancy and delievery. It seems like once you are in this infertile rut that where you stay.
    I have seperation issues so that would be very very tough on me, I was hoping maybe you had close frined that could hang out with you while you are in the hospital, or maybe start asking around for anyone who had hotle points so that you can all stay near the hospital if the baby does have to stay for a while. That would give your daughter a break from the hospital and maybe a nice swim in the hotel pool.
    Delivering ealry does make everything harder for the baby but the whole placenta thing sounds really scary, you don’t want to put your life in jepordy of bleeding out and now having 2 kids with no mom, better to try and come to grasps that it will not be the ideal first month of life but it will pass and you will mourn that it wasn’t how you wanted it but at least you all have a chance to be healthy.
    One blog I follow she has triplets after a few series of IVF where nothing took. She ended up doing a lot of nursing and pumping even with her s in the NICU, you’ve pumped before at least this time if you can get your body trained and goign you won’t have to take any meds.
    I”m sorry you are having to let go of the dream delivery and it just keeps getting harder, thinking of you and hoping you can come up with some sort of plan to help it be a little easier on everyone.

  7. Oh Luna. I’m so sorry. This must be so frightening. I’m abiding with you, and wishing that I wasn’t thousands of miles away: if I were closer, I might be able to be of some practical help as you get ever closer to delivery. But as it is, all I can do is to hold you, and Mac, and Jaye in my thoughts, and will this baby to arrive safely. xx

  8. Oh I’m sorry. I was also told that we would have to deliver early (30 weeks, in my case) in order to give my twin b the best chance of survival. I took my chances and pushed for longer and, indeed, lost him. We were lucky to get to 36 weeks in the end but it was truly a push and pull between myself and the doctor. Ask for the steroid shots now and try to trust your instinct. It’s difficult because there is so much at stake.

    My thoughts are with you.

  9. It sounds like there’s so much to adjust to–first the pregnancy, then the likelihood of early delivery and NICU time. So sorry to hear that things are getting complicated again. I agree with the folks who have suggested reaching out for whatever support you can find during this difficult time. Remember, too, that whatever non-ideal things happen during the first few weeks, that time is a very small piece of your life-long relationship with this kiddo.

    If you’re looking for positive stories, my little brother was born at 29 weeks (weighing 2lbs 13 oz). He’s now 29 years old, 6 feet tall, a successful newspaper reporter, and has had no issues related to the prematurity–and he was born well before lots of the technology that they have now.

  10. My twins were born at a day shy of 35 weeks. They left the NICU 18 days later. One did very very well, the other had some struggles. Both left on the very same day.

  11. Oh, that is not what you want to hear. Did you try asking, “What if we don’t deliver at 34 weeks?” or “What if we wait one extra day, two extra days, one week?” What are other options?

    You know I am a failed home birth person so I appreciate doing it as nature intended but am glad the medical establishment is there when needed. My view is that the medical establishment tries to go for zero risk which we know just isn’t possible. Does it really add that much risk to wait a little bit longer? Could you stay in the hospital and be monitored? What other options might work out and add very little extra risk?

    I am wishing you peace and a healthy baby . . . all the things you dreamed of in a pregnancy and birth.

  12. My best friend’s son was born at 28 weeks and he just celebrated his 5th birthday!! Another friend’s sister had her baby at !!23 weeks!! and she celebrated her 1st birthday in March. You can do this!! I think about you all the time. 🙂

  13. Awww, sweetie. That news sucks. Of course, you have lots to be grateful about, but dealing with all of this must be really, really tough.

    Hey, my precious boy was born at 35 or 36 weeks. He did spend two weeks in the NICU, first while his lungs matured a bit, and then to complete a 10 day course of antibiotics. We never feared for his long term outcomes. He has been an incredibly healthy, strong, jolly kid since then!

    I agree with others who are encouraging you and Mac to ask for help. I suspect it’s not in your nature, but really, people love to feel useful in situations like these. And you do have the benefit of some time to prepare. I wish I lived close enough to come clean your house or something. One thing I CAN do is recommend the Ronald McDonald House. If I”ve put your clues together correctly, there is one near the hospital where you will deliver. We had really excellent experience staying there.

  14. I see someone has suggested the Ronald McDonald house. It’s a good option.

    The other thing I would do is share with Mac and a woman (friend, sister,doula) what the ideal is for you in terms of the baby and you. That way if you can’t make an informed decision (you’re still out from the c-section or something) they are around to be your advocates until you can personally weigh in.

    One of my best friends had a high risk delivery (the baby is 16 now and beautiful) and while she was in surgery, I was able to sort out decisions with her husband. Stuff like offering bottles, etc. Mother and baby were fine in the end. Totally fine.

    I gave birth to Rory at one day short of 36 weeks. She is fine. Well, she has bunions and likes boy bands, but no one is perfect.

    My nephew was born at 33.5 weeks and is 10 and healthy. He was in NICU for like 10 days.

    Remember NBHHY.

  15. I’ve read this post over and over trying to figure out if there’s anything useful for me to say, and there just isn’t. This sucks. But I’m still holding out hope that everything will go well.

  16. Our son was born spontaneously at 33 weeks, my cousin’s son at 28 weeks and both received excellent care from the Best Nurses Ever in different NICUs. I know that it’s not what any parent hopes for or imagines, but I wouldn’t trade my experience in NICU for anything. It restored my faith in humanity for a long time, to know that there are people who are passionate about their jobs and dedicate themselves to nurturing our babies (and us) at the most vulnerable time in our lives. Luna, the best place for a preemie is in the NICU. You can spend as much time there as you like. The NICU nurses LOVE moms who just won’t go away! I don’t know exactly where you are, but perhaps there is a Ronald MacDonald House where you can stay. There is a huge, wonderful system set up for parents and their preemies. I’m sure your hospital can tell you all about it. You will be so well taken care of. One day at a time, I know, but you will be okay!!!

  17. I was born at 34 weeks in the mid 70’s, was top of my class in high school, have no chronic health problems (other than infertility), and made it through med school. 34 weeks isn’t so bad. As far as I know, my Mom managed to breastfeed ok too.
    In your shoes, I’d probably want another ultrasound/MRI (or whatever they’re using to diagnose and follow the placenta accreta) close to 34 weeks to give me more information prior to delivering. If things were still looking like a plain old accreta at that point, I’d likely push the delivery back to 35 weeks or more.
    With the accreta, I doubt you’ll be looking at much in the way of bonding at the time of the C/S, as they’ll be worried about you bleeding too much, and possibly converting you to a general anesthetic for the hemorrhage control/hysterectomy part of the operation. Are you delivering in a centre that would consider putting balloon catheters into your uterine arteries to inflate to control the bleeding if it gets too hairy? At one of the hospitals I trained in, they would do that and possibly take the patient to radiology to have the uterine arteries embolized if necessary, in an effort to save the uterus in case the parents wanted to try for another child. (I realize that may not apply in your case)
    I’m so sorry you’re having to deal with all of this when you ought to be able to just rejoice in your miracle pregnancy. I hope you can get an acceptable plan worked out, and that things go smoothly and let you bring a healthy baby home.

  18. Oh Luna, first sending you, Mac and Jaye lots of warm good healthy thoughts. I’m a long time reader- several years but I seldom post. An occasional comment an adorable picture I think is about it. But, I had been wanting to post on your exciting news–I’d missed out while I was moving (home to northern California actually). But today, when I read this I absolutely had to post to give you a “good story.”

    I was born over 30 years ago (okay, closer to 40 but let’s not quibble), before all this technology was available, before NICU’s were standard–I was somewhere between 7-8 weeks premature (the doctors didn’t think to test to find out exactly how early I was, and we’re talking pre ultrasound for dating). What we know is I was a tiny preemie whose fingers were transparent and had no nails. But, except for being early (and REALLY surprising my mom and dad who were living in the middle of NOWHERE–my mom had planned to stay in Sacramento when it got within a month of my due date so she’d be near a hospital) and staying in the hospital a couple extra days, and not fitting in ANY of the preemie baby clothes or diapers I was fine. 🙂 I’ve obviously grown up and except for having to feed me every couple of hours because of how little I’d eat as a new baby there were no ill effects from my early arrival. And that was before modern medicine was even prepared for such things!

    I will surely be thinking about you.

    Chris

  19. I owe you a big hug when I see you soon … I had not idea what you were facing when you said ‘complications’ until I really started to follow your blog … we will do whatever we can to help M and J when you need it … we are close by the city and are flexible when needed 🙂

    Like others have shared you should reach out for support now so it will be in place when you need it …

  20. I am so sorry that this keeps getting even scarier. I’m not sure if you just need to vent at the moment, or if you are also looking for advice, but since it’s easy to ignore comments …

    I would consider calling the NICU now and asking if they have a social worker on hand who can help you with arrangements. Yes, there is Ronald McDonald house, but there may be other options to help keep your family near the hospital (some hotels have special deals with hospitals, the social worker can certainly put you in touch with volunteers who might help with J).

    Can you find a lactation consultant now to help talk about breastfeeding? It seems worth getting as much information as possible at the moment. I waited to buy my first breast pump, and what do you know it was defective (motor never started) and I had to spend an hour on the phone with Medela while obsessively googling failure to thrive and trying to ignore my baby who was refusing to eat (and is now totally fine).

    Also, if blood loss is one of the biggest concerns, have you talked to your ob/gyn about soliciting donations in advance should you need a transfusion? On the long shot that your husband has a compatible blood type, it might be worth asking him to donate now when he still has time to recover his energy before he really needs it (same for a friend).

    While 34 weeks is early, I certainly know people who have taken home their baby in as little as a week after a planned 34 week delivery (with steroids in place in advance, etc.).

    I am sure that you will go in to your next appointment with plenty of questions, but is being admitted at 34 weeks and waiting it out under close monitoring an option? That is time that you would be away from home either way, and it seems that it might offer one possible compromise to get you a little closer to 36 weeks (if these placenta issues are even something which can be monitored …).

  21. My baby was born at 34 weeks and she was just fine! She didn’t need any oxygen support and was only on heart monitors for a couple of days as a precaution. She did stay in the NICU for a week, but there was really no reason to keep her there. I know at our hospital there is a room that mothers can stay in just down the hall from the NICU. It is first come first served and only for a few days max, but maybe your hospital has something similar?

  22. Sorry about the news and early delivery. Our son was born at 31 weeks and spent 7 weeks in the NICU an hour from our house. Those 7 weeks were rough but he is super healthy now and about to turn 8. I have several friends who delivered at 34 weeks whose kids spent less than a week in the hospital. It is so individual as to how the babies do. All you can do is hope and pray for the best.

  23. Oh man, I wish I lived there. Sigh. This is going to be difficult, but it is not impossible. Ms. J is right – start reaching out – there is a way that will open up to you. You have a lot of support out there with some amazing guidance and options for you to investigate. Like me, you need to arm yourself with a variety of plans, options you can take. You guys are going to be all right, you know? The ride may get bumpy, it is not ideal, but you and your baby can do this. Come on now, put some of that worry over here. I can take it.

  24. I think we may live close. We saw the same doc at some point on this IF journey if I remember correctly. I would love to help out anyway I can (meals, whatever). I know we’ve never met but I’ve followed your story here for quite a while now and I would be honored to help if I can. I’ll be thinking about you and your family especially over the next few weeks.

  25. My sister had her son at (unexpectedly) at 35 weeks. 10 days in the NICU and at 1.5 years later, he shows no impact from it.

    What a scary road you have in front of you. I am here hoping for all the BEST outcomes and hoping the Universe hears. Thinking what a story you will have to tell that little bean.

  26. Babies are resilient little buggers and sounds like you are in good hands. Be kind to yourself.

  27. Oh Luna,
    I’m so sorry this is so complicated and scary. I’m so glad so many have chimed in with these wonderful success stories. I wish I was still in the bay area and I could come running over to you to offer any help I could…:( I agree with Kami…what about monitoring in the hospital while you wait it out just a little longer? Of course I am no doctor and ultimately the decision is yours, hers, and Mac’s… You must be in turmoil. But I know all will be well, in the end. Thinking of you.

  28. So sorry for the scariness.

    My twins were born at 33w4d and spent 15 days in the NICU, caught up in almost every way quickly, and are now quite huge, each advanced in several domains, and marvelous in every way.

    My friend’s twins were born at 33w5d and spent 8 days in the NICU.

    As much as I wanted my twins to make it a bit further, their birth at that point rather than later may have saved my life, as my accreta would have gotten worse and worse. They were born at the exactly perfect time to balance their needs, my needs, and several other aspects of kismet.

    Also keep in mind that when you hear the figures on preemies at any given gestational age, many of them were babies who were born early because the baby or mom was sick in some way. For babies like mine who come early because they are multiples, or those like yours who are purposely birthed early, the likelihood of good outcomes are even better.

    If this doc says you and the baby will be okay, I believe her. She will see to it that you are both okay.

    Take care, my dear.

  29. My twin nephews were born at 34 weeks. They spent 11 and 12 days in the NICU, and the hospital let mom or dad stay in “courtesy rooms” overnight whenever the units weren’t full. The came home with with no lingering concerns. They are 14 months old now and caught up in every way- naughty, noisy, destructive, exhausting and adorable! Best of luck and congratulations on your unbelievable surprise!

  30. […] of all, thank you so much for your comments on my last post. Every single one of them a ray of light — success stories, miracle babies, helpful […]

  31. 34 weeks is the threshold when they consider the long term effects of being on the outside equal to those of babies born at term. With your health to consider and the with the long term effects on the baby low, I think that this is a proactive plan by your doctor.

    Yes, NICU life sucks. (Did it for 15.5 and 14 weeks for my twins so I know.) But, it is doable. Start your planning now so you have people around you to support your family and you will be okay.

    Much love.

  32. Just learning your story & happy I stopped by! Your daughter sounds lovely & I am praying for this little one. I was a 31 1/2wker, 5d in an isolette before they kicked me out for a term heart kid (no NICU for military birthing barns back then!) & was sent home. I wore doll clothes & a child’s sock on my head for a hat. My mother breastfed me without problems. I now have 2 degrees, am nearly done with a 3rd, and used to be a NICU RN (now take care of babies when they get home from the hospital). There is nothing I love more than little preemies! It seems you have an excellent team taking care of you both. You have some very good suggestions above, most important being support!! Do see about living closer to the NICU after delivery because you won’t be able to drive yourself after such major surgery. (Although, we generally look the other way in cases of NICU moms. You do what you gotta do, just remember that passing out on the interstate from loss of blood or getting banned from the NICU due to severe infection won’t be good!!).

    Miracles happen. You have one kicking you right now. 🙂 Will keep you in my prayers!!

  33. thanks for being so open

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