On Kangaroo Care In The NICU And Being Your Own Advocate

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After sharing the story of Iris’s sudden birth at 30 weeks, in discussion about my adjustment to life in the NICU, I was told by many that I’d have to “be my own advocate”. “Well that will be no problem!” I thought. What I didn’t expect was that “being my own advocate” would mean being reduced to an uncontrollable onslaught of tears as I asserted my right to hold my completely stable, healthy, albeit 3 lb daughter while nurses tried to take her away from me so that she could spend even more time in her isolate.

First of all, for anyone not familiar with the term, kangaroo care, also referred to as skin to skin care, is simply that. You hold your bare chested baby against your own bare chest in an upright position between your breasts. Current research has proven this simple method of care maintains the babies body temperature, facilitates bonding and breastfeeding, increases the mothers milk production, and can even increase weight gain and alertness. It is proven to be a safe alternative to isolates for stable low birthweight infants and is recommended by developmental care specialists who, “insist that parents should be at the center of the NICU, allowed at their babies side twenty-four hours a day, and treated by medical staff not as guests but as the primary caregivers for their babies.” Our NICU claims to encourage this widespread method of care.

At the onset of her NICU stay Iris was connected to a CPAP and IVs, making it more complicated for us to hold her, preventing us from bonding with her as often as we would have liked. We understood the reasons for this and accepted it. After those hinderances were removed we had a wonderful nurse over the weekend whose approach to care finally made us feel like the primary caregivers for our daughter. She dug through a storage area to find me a comfortable chair for kangaroo care, showed us the many ways we could be involved in her care and gave me the confidence to handle my daughter without the help of nurses. I established a kangaroo care routine, scheduling my pumping sessions around her care and feedings. I would place her in her isolate, pump and eat, come back and take her temperature, change her diaper, and then hold her during her feed for two to two and a half hours until it was time for me to pump again. Over the next four days I became increasingly comfortable and content with the NICU experience. I was slightly frustrated by the lack of continuity in her care; each day she has a different nurse and each nurse has slightly different opinions and ways of doing things. Every morning was a reintroduction, but those confusions were small things. Overall each nurse seemed happy to see me, asked what my plan was for the day, said that sounded great, commented that they knew I was there every day and comfortable with things, and made me feel the way a mother should feel in the NICU.

Thursday, the two week anniversary of her birth, Iris had a nurse who, it quickly became clear, was not comfortable with my level of involvement in her care.  After my first pumping session, as I picked her up to get into position for our second stretch of kangaroo care, she told me I needed to leave her in the isolate for this feed because she had a good temperature and she didn’t want to compromise that. Not only have I read enough to know that our skin to skin time does a perfect job of keeping her warm, every nurse I had that week commented on how warm, comfortable and restful she was on me. At this point, with no medically indicated reason to keep her from being held, no one was going to stop me from holding my baby in the limited six hours a day I have to be with her. What I didn’t expect was how emotional I would get as I explained that I do this routine everyday, it is never a problem, and I will continue to practice kangaroo care until a doctor provides me with evidence that it is hindering her growth and development. No one will ever be able to convince me that it is better for my baby to spend all of her time in an isolate. Unfortunately, this is the belief of many nurses who still subscribe to philosophies of traditional methods of care.

The next morning I was greeted by a social worker who listened to my concerns. The nurse that day proved to be even more difficult than the last, and next I was speaking to the manager of the unit, and a doctor. Suddenly everyone was obsessing over her temperature regulation, asserting outdated and disproven opinions about the superiority of the isolate. My baby grows between a half ounce to an ounce a day, exactly what is expected at this stage. My care has been consistent every day, on days she gained more and days she gained less, I did the same thing, making it completely illogical to claim that I am interfering with her growth. Essentially, we are talking about four to six hours out of a twenty four hour day spent being held by her mother. What is a complete non-issue, was suddenly becoming a very large issue. I spent the entire morning crying as I held my baby, debating with people who were trying to limit my kangaroo time to one hour a day. The nurse came over in the middle of Iris’s feed and attempted to take her from me, despite the fact that the importance of not moving her during or for a half hour after her feed to prevent reflux has been stressed to me by every previous nurse. The temperature probe was reading a perfect temperature, better than it had in her isolate, they dismissed this as the blanket warming it so I asked them to take her temperature, it was 98.6. No one succeeded in taking away my baby, and my husband left work as soon as I was able to call him and sat by my side for support. In an attempt to resolve our issue this nurse actually said to me, “I will do things your way for the rest of the day, even if it means your baby will grow more slowly, if thats what you want thats fine with me.” Studies show Kangaroo care increases weight gain in low birth weight babies, and in no way is this method just “my way” as much as I’d love to take credit.

The next day we came in and were greeted by one of the nurses I had previously that week, I resumed my usual routine with no controversy. The same followed for the days after, reassuring me that this was a non-issue that was made an issue by a couple of nurses who are not comfortable with parents in their workspace. Whether the absence of other parents in the unit is a consequence or part cause of this I’m still not sure. I have never seen any other parents in this NICU on a regular basis, and have never seen anyone else practicing kangaroo care, despite the fact that it is a common and recommended practice for premature infants.

Did you practice kangaroo care with your newborn or preemie? Anyone else find that while their NICU claimed to encourage kangaroo care and breastfeeding, its practices often proved otherwise?

 

Patience…

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(image via Pinterest)

Patience, is not my virtue. Sometimes it seems life tries to school you. Though I don’t truly believe that things happen to teach us something, or that there’s purpose and reason in everything, I will try to learn what I can from the hand I’ve been dealt. So far, I’m a slow learner. I want Iris home, well, NOW. Perhaps by the end of this, when she’s home in my arms, I’ll look back and think this all taught me something about things happening in due time. For now, I write the date every 3 hours on the bag of breast milk I pumped before I freeze it, and in the middle of the night, when I get to mark the next day, I feel a momentary sense of relief that we are one day closer to her homecoming. It has been 15 days, they tell me there will be at least 27 more.

New To The NICU

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There is nothing natural about leaving your newborn at the hospital to be cared for by other people, and I’ve felt like a bit of a slow learner when it comes to adjusting to this situation. I want to feel like she’s mine. Instead I felt afraid to handle her, clueless as to how to be involved in her care. It is up to the nurses when I can hold her, for how long I can hold her, when she gets fed and changed. There were several points at which I felt I was doing everything wrong. I want to be there with her every minute, as any mother is with her newborn, but I can’t, and I feel guilty.  Sometimes I simply cannot handle it all and the emotions well up into spontaneous tears.

Overall she’s doing very well, I have every reason to be grateful, and I am. Wednesday morning when I arrived at the NICU the doctor was attempting to reinsert her IV. They’ve been having a difficult time with her lines and going back and forth on whether or not to give her a PICC line for the next few days until she is up to “full feeds” (she receives my breast milk through a feeding tube every 3 hours.) . She has handled every feed increase without a problem, but unfortunately they can only increase them so much at a time and she still needs her TPN. Wednesday she was done with the bili light which meant I could hold her as much as I wanted (all day except for when I had to pump.) They also decided to try her off the CPAP and she breathed perfectly and calmly all day in my arms.

I got to stare at her beautiful face with only one little feeding tube attached, she looked so sweet and perfect resting on my chest, her face so peaceful, her little hand resting on her chin just how they position newborns in their fancy photo shoots. It was a wonderful day. Then after my second pumping session I came out to the news that they were about to attempt to put in a PICC line.  I realize this routine for NICU nurses, but all sorts of emotions bubbled up as I watched them prep her, and then I had to leave for them to begin the procedure. I called back two hours later as instructed to learn that it hadn’t worked, she was put through all of that for nothing.

I know she’ll be okay. I know that in about 5 weeks she will be home, she will be mine, she will sleep on my chest every minute of the day. I hate to see my babies suffer. I hate not being able to comfort her. I’m only at the beginning of figuring out how to navigate all of this, the guilt of not being able to be with both my son and daughter every minute of the day, the pain of watching her suffer, however minimal that suffering may seem to experienced nurses. I have never been able to let my son cry and its breaking my heart that I have no choice with my daughter.

I’ve started telling myself a story about her, about how she kicked her way into this world and has kept fighting ever since. A little woman who knows what she wants. So far that has been my best coping mechanism. To see her as this little force to be reckoned with. In my eyes she is already far more independent and strong a creature than I ever imagined my son. I focus on her feisty little personality and sometimes it helps me to feel stronger too.

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Besides that, so far I’ve figured out a few ways to help with the adjustment to life in the NICU:

I found this store, EVERY tinyTHING, for preemie gear.

I ordered these books: PREEMIESThe Preemie Parents Companion, and Ready For Air to better inform myself.

I decided to hold off on clothes, as it seems they are more of an unneccessary hassle for her at this point, but she wears hats so I picked out these: Bamboo Knot from Kickee PantsMinky Hat from Itty Bitty Baby.

I also picked out these blankets to help make her feel like she’s ours: Aden + Anais Organic Cotton Swaddles.

and special touches like these Art Crib Cards, or ones you make yourself seem nice too.

As far as the practical things, I’ve needed: an extra bottle brush and soap for the NICU, a deep freezer, a pump (I’m using the one I recieved from insurance for Roman), pumping bra, Lansinoh storage bags, breastmilk storage organizer, extra storage boxes, button down/easy pull down shirts for pumping and skin to skin care, comfortable nursing bras, and Lansinoh nursing pads

I feel like the adjustment to the NICU has been a slow process in part because of the questions we didn’t know to ask. All of this is second nature to the nurses and staff, its easy for them to forget what’s it’s like for all of this to feel foreign…

As far as breast milk and pumping:

How much should I be putting in each bottle? When I started pumping at the hospital I received one complaint after the next from nurses. We had the wrong labels, the bottles they gave me were the wrong size, and I was filling the bottles when she was only receiving 3 ml every 3 hours and after the milk is defrosted it is only good for 24 hours. I wished someone had explained to me at the beginning the perfect amount to put in each bottle for her feeds, I didn’t know to ask. (Her feeds have now gone up and the nurses are beyond thrilled that I am filling up so many bottles!)

How much should I be bringing in to store at the NICU? After my first day home from the hospital I returned with everything I had pumped while away, and was informed that they didn’t have enough space for all of my milk. They managed to fit it, but told me not to bring anymore in until they asked for it. Now I just leave what I pump while I’m there and freeze the rest at home.

Her care:

What is her care schedule? A few days into visits a nurse informed us that Iris was on a 8, 11, 2, 5 schedule. This meant that at those times she was fed and changed and we could help, until then we had no idea!

Can I change/ bathe/ feed her? I learned from other bloggers and message boards that I can get involved with her care. At first I felt so helpless, then I started noticing other moms sticking their hands in the isolates whenever they pleased, taking the babies out themselves, and realized I can be far more involved then It seemed.

When can I start kangaroo care? I kept being told that they encouraged this, but whenever I asked when I could start I received vague answers. Finally, Wednesday when I asked, the nurse said I could do it right then! I just had to keep asking.

What am I allowed to do vs when do I need to ask permission? At this point I feel like I need to just come out and ask this question. I want to feel like a normal mother, like she belongs to me, but I’m not trained to care for her and I have to entrust her to the care of these amazing nurses. At first I felt so nervous and hesitant. It seemed that holding her was a selfish disturbance. After our first skin to skin experience I feel its whats best for her, I feel that being cared for by me as much as possible is whats best for her, and I need to gain confidence in my ability to be involved.

Her progress:

The first time I felt really comfortable asking questions was at rounds. On each visit to the NICU we had been able to talk to a doctor, but I struggled on the spot to think of what to ask. During the meeting, throughout the conversation, so many questions came to mind. I was able to ask more specific questions about her goals for discharge, the tests has she had and will have, and get more in depth about each term and procedure being discussed. Each day I am more confident with being inquisitive and vocalizing my concerns and opinions.

Thursday she was one week old. She’s breathing on her own, tolerating feeds and gaining weight. I’ve been able to spend 5-9 hours a day with her, holding her as much as possible, studying her perfect face while she sleeps. The intense, unconscious emotions I’m experiencing feel like evidence that we’re bonding. Things really couldn’t be going any better. I’m learning. I’m wondering if I’ll manage to fully accept the situation before the time she comes home, and just hoping that it goes by quickly.

Recovery and Roman

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Sunday night, after a long weekend of strange looks and nervous behavior towards his Mama, Roman fell asleep cradled in my arms, and it felt wonderful.

He handled the emergency hospital visit for Iris’s birth better than we ever could have hoped. He spent the weekend happily being cared for by my parents, two nights away from us, for the very first time. We had no idea what to expect of his behavior, how all this would make him feel, and we’ve been amazed by how little he seems to mind the separation. He actually seems to behave much better for my parents. I realize that all of this is wonderful news, that we’re very lucky, that its much better than him reaching for me or demanding my presence at a time while I’m physically unable to provide him that care.

Sadly though, he seemed genuinely nervous around me. He witnessed me in serious pain and emotional anguish. I breathed through the contractions the best I could, and Mike removed him whenever things got intense, but for a period of time that night I burst into tears whenever I looked over at him and my husband, and his face would twist into the saddest pout and he’d get so upset. I scared him. Then the next time he saw me I was wearing a breathing mask, hooked up to wires. I couldn’t get out of bed. At 16 months I can’t imagine what all this meant to him.

When my parents brought him back to the hospital the day after the birth he inched over to my lap at one point and sat there swinging his legs, making funny noises, behaving in a way I’d never seen, seemingly full of nervous energy. When I came home from the hospital, and any time I entered a room there after, he barely seemed to notice me. He would occasionally throw a bewildered glance my way. I went from his full time caretaker, the person who fed him, changed him, read to him, played with him and cuddled him to sleep for every nap and every night, to relying fully on my parents and husband to care for him and a nursing staff to care full time for my newborn daughter. I’m starting to heal and gain mobility, but it will be weeks before I can safely lift him again.

But Sunday night, he wanted me in bed with him and his Papa for bedtime stories, and he crawled over to me, wrapped his arms around me, curled into my chest, and pulled on my neck to bring my face to his for kisses. He laid there still, with a little grin on his face, peaking his eyes open until he eventually fell asleep. Such a relief <3

Our Baby Girl Has Arrived

Iris Vega Laielli was born safely into this world November 6th, 8:04am.

Here is her birth story…

After 30 weeks of a completely normal, healthy pregnancy I found myself waking up November 6th with contractions and blood stains at 2:30 am. Before bed I had felt the baby drop, after some reading I thought this was normal enough and expected to spend the next 10 weeks feeling lots of extra pressure. Part of me felt like something was wrong, but part of me always feels like something is wrong, so I let it go. I had been experiencing Braxton Hicks contractions very regularly for weeks, something the doctor reassured me was normal. so at first the tightening I was feeling didn’t worry me, I assumed it was just more uncomfortable because she was sitting lower. The sight of blood upset me enough that my husband woke up, we called the advice line and started getting ready to go to the hospital. While I was on the phone the contractions increased in frequency, in the car I timed them at 3 minutes apart. Our almost 16 month old son Roman woke up with us happily at 2:30, seemingly excited that for once we were getting up for some action in the middle of the night. He was happy to watch Blues Clues for the whole ride. The frustrating thing about arriving at the hospital was the absolute panic I was feeling from what I knew was an emergency being greeted very casually by nurses who sent me to a room to wait another 15 mins for someone to come see me. When the resident arrived she checked my cervix and I was 4-5 cm dilated, she directed them to have the attending Kaiser doctor come immediately. They started me on “mag” and gave me shots to strengthen the babies lungs. My contractions were increasing in strength while all this was happening, my pain and worry were upsetting my son so my husband walked him around the halls. We called my parents to come from NJ, we had no one in the area to come watch him. Then the contractions seemed to stop, at least the pain did. We were moved from triage to a labor and delivery room, and we became hopeful that they were successfully halting the delivery. My son played with clean plastic pee cups and resisted all attempts at sleep, his pleasant behavior through the whole experience on only one 30 minute nap amazed us. Then the contractions came back, more intense but less frequent. The doctors seemed to be seeing more action on the monitor than I was really feeling. They ordered me an epidural in case of an emergency c section. They directed the anesthesiologist to administer it while I laid on my side so as not to put more pressure on my cervix and rupture my waters. This made things very difficult for him, it took about 45 minutes and was very uncomfortable, a completely different experience than the brief painless epidural I received with my sons birth. My husband had to take our son out to the car to get some diapers. The epidural wasn’t kicking in and so they hadn’t catheterized me, so I asked to use a bedpan. I noticed more blood. They came back and checked me again and I was fully dilated. Suddenly the room was full of people, people moving and speaking very quickly and nervously. I was alone and I felt panicked and couldn’t stop crying. All of the panicking people kept telling me to relax. They rushed me down the hall. The epidural still wasn’t kicking in. They moved me onto the operating table. I heard hem considering delivering her vaginally, then they could see her leg coming down the birth canal and finally put the mask on my face to administer the general anesthesia. During my first pregnancy, with my high hopes of a natural birth, this was exactly my worst nightmare. Obviously a baby born this early is a thing worth fearing, but just the idea of being asleep for my babies birth, not seeing them or holding them, missing that experience, that was my worst fear. As they wheeled me down the hall all I wanted was to be put under. I didn’t want to hear them panicking, I didn’t want to suddenly feel like things might be about to go horribly wrong. It all happened so fast. Just two weeks prior we had a perfectly normal ultrasound. As it turns out, I had a placental abruption. I have no risk factors for a placental abruption, and I will never know why this happened. What I do know is how incredibly fortunate we are that the doctors brought our 30 week 3 day old baby out into the world safely. She was placed on a ventilator, but by day 2 is now off of it, breathing on her own with some oxygen tubes in her nose and handling it well so far. She was born at 3 lbs 2 oz, 16 3/4 inches long. Her heart is strong and her tests have been coming back fine. I feel strange and helpless. When my son was born I experienced such an intense rush of hormones and attachment, being separated from him for his brief visits to the nursery for tests, which my husband always accompanied him on, felt unbearable. He spent all of his time lying on my chest and I felt like I had to be watching him always to make sure he was breathing, as if he couldn’t do it without me. This experience is completely different. The first day they brought me to her for 10 minutes while they moved me to my recovery room. I wasn’t allowed to go back to see her until after they could take out my catheter at 8 pm. I almost wasn’t allowed to see her that night at all, news that brought that same rush of panicked tears back, so they had a doctor come talk to us and she was happy to approve of the steps necessary to allow us to visit. On the second morning they had taken her off the respirator right before we arrived at the NICU so I was able to hold her for the first time. I need to hold her more. I’m eager for the coming days when she’ll be ready for skin to skin care. When we can bond. Right now she has a full head of dark “preemie” hair and the sweetest little feet and hands I’ve ever seen. I feel rushes of emotion sometimes. I feel sad that she has to go through this. I feel guilty and confused. Mostly, I truly feel grateful. Grateful to live in a place with access to medical care and technology that allowed my daughter a life that otherwise would have been lost. I feel optimistic, I haven’t actually allowed myself to think about anything but positive outcomes. I feel surprisingly comfortable taking things day by day, which is probably due to how good the NICU staff is at easing our worries. It is very strange having to put your child completely in someone else’s hands, the complete trust necessary, but I do trust them. I trust them to take good care of her, I trust her to keep pulling through, I trust my son to adjust to the upheaval of the challenging weeks ahead. We were told to expect her to be here for 6 weeks, they say the estimate discharge around their full term date. We don’t have a plan yet, we’re taking things day by day.

This is my very fresh birth story update, and I hope to be sharing more of our experience and good news soon.

I love hearing and reading stories about other preemie experiences, so please do share, we are grateful for advice!

A Few Favorite Things About Our New Home…

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Roman’s favorite things about the new house:

1. The ceiling fans: this we expected, he’s obsessed.

2. The stairs: his favorite spot in the house is the bottom step of the stairs, he’s designated it his own personal little seat.

3. The yard: its amazing how easily entertained he is by sticks, tree stumps and dirt, woohoo!

4. Strolling along the sidewalk on his own two feet: he’ll stand at the gate and request that I open it, and then just walk along the sidewalk gleefully searching for treasures, something we couldn’t do so safely or easily out our apartment building’s front door.

My favorite thing about the new house:

Our local bakery. Pretty much everywhere we’ve lived, we’ve had a go to bakery nearby. This one is my favorite. (Pavel’s in Pacific Grove, CA being a close second.) While my parents were visiting over the weekend to help us settle in, we grabbed pastries for breakfast every morning, and I quickly became addicted. So addicted in fact that I walked the mile uphill to get there this week and splurged on cake and cookies!

This little townhouse feels so cozy and homey, much more so than our apartment. Also of course, all of Roman’s favorite things are my favorite things by default. I love walking out the front door to our little yard, and strolling down the street to the playground, no stroller or backpack needed. I’m also pretty excited about our proximity to the metro and to Old Town, Alexandria.

We still have some more settling in to do, but thanks to our parents the bulk of the work is complete! After this weekend we should be in excellent shape, and by Christmas I hope to have things hung on the walls (giving myself a little extra time for that goal…)