Wednesday, 16 April 2014

Getting prepared, part II: calling all NICU veterans

As a brief postscript to my last post: we went in this week for one of the many non-stress tests that will lead up to little seedling's arrival, and let's just say, she didn't perform up to standardized expectations...Her heartbeat stayed a steady course and was nice and strong, but she just refused to jump on command. H and I weren't really worried though; our parental intuition has become strong, she had been doing her routine kung fu moves on my bowels only an hour earlier. In those moments at the clinic, as bad luck would have it, she was just more in the mood for a snooze than a triple somersault (which of course she was prepared to do as soon as the monitors were removed).

A moment of maternal pride: my kid is already set to challenge the legitimacy of normative, numerically-based testing, achieving in utero what it's taken me four degrees and an entire career to do. Then again, (having proven herself very blissed out early on), maybe she was still just chill from all the jazz music and brown cafes and one too many Belgian beer of last week...?

Either way, a girl after my own heart.

One chilled out baby. Unlike her mother. Source.

 
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But that's not really why I'm here. Today, I want to ask your thoughts on a topic which looms large in my mind these days.

I think when I said that there was much to prepare before little seedling makes her appearance, a lot of people heard stuff to prepare. Trying as we are to be proponents of a certain level of simplicity parenting, we're working not to get too hung up on stuff just yet, especially as her hospital stay will postpone a lot of those immediate needs, and since each baby is unique in there needs and habits, it seems to make sense to wait and see what's actually useful. We have the basics: enough clothes to start her off, a place for her to sleep, and this carrier which is recommended for babies with low muscle tone, as well as a ring sling. All the rest will come, and we're not fussed about that.

Our preparations, however, aren't really about that anyway. Basically, there is a huge part of me that has been terrified preoccupied with the prospect of a NICU stay since the moment the possibility was raised.

I've slowly learned to adjust; there aren't (as many) moments these days of late night sobbing on H's chest, overcome by fear and heartbreak at the thought of my little girl in such a scary, clinical environment, hurting or feeling alone. I'm trying to embrace what lays ahead as a necessary and helpful stepping stone to getting our daughter healthy and home in our arms, where she belongs.

And I'm grateful that we got all these diagnoses prenatally and were given time to prepare mentally. I don't know how I'd cope having all this sprung on me at birth. It helped a lot that we've been able to tour the ward where she'll be staying and get a sense of the facilities there. We've met with the ward staff and the neonatologist and the pedeatric surgeon, all of whom seem caring and good at what they do.

I think I do continue to worry about how the crucial bonding of those early hours and days will work. I've had all the benefits of skin-to-skin parenting so thoroughly drummed into me that I can't imagine how she'll feel our presence or know how much love and strength we want to convey to her if all we're able to do is hover over a hospital bed. Or maybe I'm worrying needlessly...I know the hospital is keen on supporting these opportunities for intimacy where medically possible, and there is a lot of support and education for breastfeeding as well.

But still, I can't quite picture it, how we'll spend our time, how we'll bond with her, what that atmosphere will be like.

So that's what this is mostly about. Being as mentally and emotionally prepared as we possibly can. I guess there are practicalities in there too, like what to pack and what to arrange beforehand.

And really, here is where I could use some help.

Bloggy friends, I know that many of you have walked this arduous road before me, and I could use your nuggets of NICU wisdom right now. Were there things you wish you'd known or done to ease the experience? Little rituals you found particularly comforting? Essential items that made your stay more homey, or at least less stressful? And what exactly is it like in there? How much time did you spend bedside? All your reflections and insights are so appreciated.

15 comments:

  1. Try these sites:

    http://handpickedmiracle.wordpress.com/nicu-survival-tips/surviving-the-nicu/ (I think this is a pretty comprehensive guide for new NICU parents.)

    http://www.lifewithjack.com/2012/10/dear-new-nicu-mom.html (a letter from an experienced NICU mom to a new to the NICU mom)

    http://www.peekabooicu.net/2011/03/what-the-beep-understanding-the-nicu-monitors/ (an explanation of the monitors you'll hear in the NICU-I developed a love/hate relationship with them during our time there)

    All I can really add is that every NICU experience is different. How you feel and what you do during your experience is okay. It's hard to go to the NICU every day and watch your little one struggle, but you end up doing what needs to be done. And it helps so much to talk to others who have been there. Much love.

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  2. I think I told you before, we were lucky with medical staff and nurses that were literally angels on earth. They treated our Yu with such love, care and compassion, while staying very professional, that although it was very, very hard to be away of her those first weeks, I knew she was in good hands and I fully trusted them. Maybe because of my background though, a clinical setting was a source of comfort, I was relieved that she was constantly observed.

    Anyhow, we were able to visit Yu 24 hrs a day, but in practice, we went to see her twice, sometimes 3 times per day. I had counted on camping outside of the incubators (well installing myself in a hospital wheel chair and being with her the whole day, but that was when the reality that breastfeeding (by which I mean pumping 7 times / day, at her feeding times) requires sleep and constant eating in a healthy way. We went to see her in the morning, around 9, and then at the end of the day at 18 or 21h. Sometimes I went during the day too, at around 15h. During our time there we would do kangaroo therapy (skin to skin), change her diaper, hold her, and I would every time put her in my breast so she would get used to the smell and slowly learn to suck and swallow. At the beginning she would suck two or 3 times and then sleep, but she became stronger. We also started combining her nasogastric feedings, with the breast and bottle feeding. This scared me at the beginning because I had studied everywhere that you should never introduce a bottle before 3 months, or breastfeeding will not succeed to establish. These rules do not apply to premature babies. Make sure you get a lactation expert (they probably have one at the hospital) who knows preemies. We used a nipple shield and a system called SNS while she was learning. And though at times it was frustrating and I thought I was going to have to give up, or well, keep on pumping to bottle feed her, at one moment it was like a switch flipped and she just started breastfeeding the whole time.

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  3. I was able to stay the last week and a half of her time at the pediatric department of the hospital, which meant she was in a crib, with me in the same room and I could take care of her every 3 hrs. It was hard being apart of the husband, but we managed, he kept visiting us twice per day, before and after work.

    It seems so hard when I write it down, but you will make it. Time passed so fast, also. Having her with us, holding her, makes you so calm, and makes every single thing worth it.

    As for the practicalities... get your nursing bras sorted, I was 33 weeks, and was waiting to reach 35-36 weeks to get measured again because we were told to wait until the very end. Maybe get 1 or 2 and then some more when the milk comes and you grow again. But , if you don't manage, I discovered triangle bikini tops work well because you can just slip them to the side. I spent those first weeks in Mark's shirts and pijama tops with lots of buttons because I did not have any nursing tops either.

    I know Mothercare has a size called Early Baby or Tiny Baby, if you *know* she will come early for sure, maybe get 5 onesies and 5 sleepsuits, it is nice to have clothes that fit her. At the beginning the first size (52) was huge on her. But those 50--52 clothes will fit her for at least 2 months.

    Also, I finally discovered (late) as I did not really have time to think all of this through at the moment when it all happened that tank top`s and wrap t-shirts / dresses are ideal.

    For your hospital stay bring comfortable clothes, sweatpants, camisoles, but also jeans. Dressing with normal clothes (not pjs the whole time) made me feel more of a person. And bring your favorite douche gel / soap / shampoo / toiletries. It is the little things.

    We were allowed to leave a t-shirt that we had worn and a small plush toy / lovey with her (made to smell like you) in the incubator. I think you had a Peter Rabbit? Or something special?

    I am not sure if the hospital will lend you pumps, if you will rent it, or if your insurance will cover it. But I love the Medela Pump in Style, and there is nothing best than the hospital-grade Medela Symphony (available at hospitals or for rent, I think you can not buy it).We also used a steam sterilizer to clean all the parts every day (which we had to order in a rush) .

    It will all be fine.

    You probably saw this video chronicling the first year of an early baby? I saw it before Yu's birth (now I think it might have been a sign, though she was not so small) and I saw it again this week and could not stop the tears.

    All the hugs. Email me if you have any questions...

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  4. Let's see... I spend about 9am to 10pm bedside. I pump in their room all day. We bond by doing their "cares" - diaper changes, temperature, changing clothes and doing their baths. We were allowed to do skin to skin kangeroo when they were a week old! We also just look at then and talk to them in baby talk voices and they are starting to recognize our voices and follow with their head and eyes! We take their pictures! (No flash). I wish I knew that babies don't like to be "petted" - they don't like small little strokes. They prefer you rest your whole hand on part of their body to soothe them. Attending rounds is very important because you get to hear what happened overnight and the plan for the day. Ask questions when you don't understand. And remember you are mom and your baby's best advocate - if you notice something, bring it up to a nurse of doctor!

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  5. I have no advice for you but I'll be thinking of you and sending all my good vibes. XOXO

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  6. I wish I had some words of wisdom, or insights to share. I know this has to be very hard and I'm continuing to keep you in my thoughts. I know we have a possibility of a NICU stay for these two, depending on when they come, but I know that's not the same type of impending possibility you're all facing- knowing it will happen (*hugs*)

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  7. The NICU can be overwhelming, with all of the alarms and bustling and scrubbing in and warrior babies all in their little stations. It can feel pretty isolating and it's easy to want to isolate yourself because honestly, most folks just don't get it. BUT there was a pretty solid NICU parents group that met in the waiting room during shift rotations. If your NICU has anything even remotely like that, take advantage of it. Talk to other parents going through the same NICU at the same time as you. It helped me feel like I wasn't on a completely different planet. Also, the group had different hospital representatives come in to do informational talks with the parents, which was amazingly helpful. There was always a Q&A session afterwards and that was great because I got to hear other people's questions that we hadn't even thought of! And I felt more informed.

    Other than that, get accustomed to being insistent. Pushy if you need to. Insist on kangaroo care and if you are told that you have to wait before holding baby (or anything else) get as much information as possible about what you are waiting for. Speak up when that goal is met. The atmosphere is super chaotic in the NICU and the nurses have many babies to tend to. Having a focused advocate at their bedside helps them get what they need.

    When my son was in the NICU, I observed his wakeful periods and adjusted my visits to coincide. I was there most of the day and overnight quite often, so I was there when he was asleep too, but it was super important to me that I be there whenever he was awake. It was really tough and super stressful, but I was so lucky that I was able to make it work.

    One thing that was super comforting to me was reading to my son when he was in his incubator and I couldn't hold him. I bought the complete WiWhat was nnie The Pooh treasury and read the thing backwards and forwards. I also sang three songs to him over and over, so he could get accustomed to my voice and the rhythm of the stories or songs. It really did help him calm down. Dang, it helped ME calm down! (And I needed some serious calming at times.)

    I'm wishing you the very best of luck and the heartiest of congratulations. She's beautiful, and I hope that you all get the kind of legendary NICU care that moves you with gratitude even in the midst of all of the tough parts.

    C

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  8. Hi friend, no words of wisdom here, but I shared this post on Twitter as I know quite a few NICU veterans on there. Thinking of you and your sweet seedling, and hoping her arrival and NICU stay is smooth sailing xoxo

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  9. Sadie, I think you've opened the floodgates with this post.

    I agree, every NICU experience is different. Because of that, I really encourage you to find out if you can tour the one you'll be in. Even of you can't physically access the facility, knowing policies ahead of time will be helpful.

    I wrote a post on surving NICU. How integration yourself with your care team is so important. One additional thing I will add is find out if you can decorate Seedlings space. We were allowed to bring in pictures and decorate our door. It helped make it more ours. Also, I got ample Kangaroo care time. Both during feeds and after feeds. Frankly more than I did when we got home (no nurse to help with pumping). The nurses also taught me so much on how to care for our twins, I felt I has an advantage.

    I know how overwhelming the prospect of NICU is. It is scary. But I also know that you can do this. Just take it day by day, moment by moment. Even in the moments where you feel like you're failing, I promise you you're not. Let me know of you have questions and please know that we are all here to root for you and support you.

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  10. Hi there

    I have (fortunately and/or unfortunately) a lot of experience with this

    I would love to talk about this further

    Please let me know if there is an email address i could email you on

    One thing i will say: bring lots of breastfeeding bras and clothes for yourself in which you can breastfeed, bring 2 pairs of confortable shoes, bring your duvet cover from home, bring a few plush toys or tshirts with which you sleep

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  11. While I've not had a baby in the NICU, I know the mom of this organization (http://mikaylasgrace.com/programs/nicu-care-packages/). She had a baby in the NICU and started this non-profit in her daughter's memory. They donate several types of care packages to local hospitals. One such package is a NICU care package. The link I gave you will bring you to the list of items that is included in the care package provided to NICU families.

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  12. Also, get the artifact that saved my life. Your recovery will be different because instead of being (mostly) in bed at home and walking around the house, you will be walking long corridors at the hospital, and probably stairs while you feel your insides might all come out of you and everything will be wobbly. So I got one of these.It is a belly band with velcro tabs that will support your back, core and belly. I used it when outside of the house and it was such a blessing those first days (weeks), otherwise I have a feeling I would totally have messed up my body and you have to take care of yourself to be able to take care of your beautiful seedling.

    It's the kind of stuff used for lifting very very heavy weights, but these are specially designed for after the delivery.

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  13. Not having BTDT, I have no wisdom to offer. Just want to say how touching it is that your focus is not on "stuff" -- which is tempting (especially, I bet, in situations where so much is out of the parents' control) -- but so squarely on making sure that your daughter feels your love surrounding her. I hope her stay in the NICU is short!

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  14. You guys, I am so touched by your long and thoughtful replies. Thank you for sharing your stories with me. You're all a source of inspiration at a scary time. And I'm taking notes!

    And to those who just stopped by to offer love and good wishes, they are so needed and so appreciated right now. Thanks.

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  15. And get a bottle of water. You need to drink a lot (If I remember correctly at least 2 L per day) when you are breastfeeding. I always have trouble drinking enough and keeping track of it, so a bottle was the answer. I adore the aluminum ones from Paperchase. And I always have it with me.
    I also got myself some chia seeds and I add them to the yoghurt or just in my juice. They are a good source of omega 3 and 6 fatty acids, copper, etc, and they really make a difference in the development of the brain and in your health. Even allopathic doctors recommend them. Will be thinking of you. Sending you 3 all the love.

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