Iris Is Home! Reflections On Her 6 Weeks In The Hospital…

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Exactly 6 weeks after her birth, at 36 weeks and 2 days, our little Iris was discharged from the hospital. The last 6 weeks evoked that familiar sentiment of something simultaneously flying by and feeling like forever. In reflection, there were many chapters in this brief period of our lives. So many emotional ups and downs, so many lessons learned.

There was the beginning, the birth that all happened so fast, the fear, the shock, the immense gratitude that everything went as well as it possibly could have.

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There was my physical recovery, a few days of feeling helpless and completely lacking in control of my own life, unable to take care of my daughter, my son or even myself. Unsure how long that would last and then relieved to heal quickly. How much easier those days would have been if I realized how quickly they’d pass!

There was the part where we could barely hold her, when she was under the billilight, connected to a c-pap and IVs, subjected to a failed picc line attempt. The part where everything was so new and I was nervous to change her diaper. She looked so small and frail and it made me so sad. I didn’t feel like a real mother, I felt like her secondary caregiver, like she belonged to the hospital and I was a helpless bystander.

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Then I started kangaroo care, I became comfortable in the NICU, comfortable handling her and her care. We bonded, my hormones sky rocketed, I became more attached and it became even more unbearable to be away from her.

There was the part where I had to fight to hold her, when for no good reason the NICU became resistant to the kangaroo care. I became obsessed with the importance of family centered care, spent my spare time researching the benefits of skin to skin and the importance of making parents feel like their child’s primary caregiver, not guests in the nurses space, interfering with their work.

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After weeks of handling the transition perfectly Roman started crying every time we left him and clinging to us whenever we were around. I felt so sad, thinking we were traumatizing him with separation anxiety only to realize the next week that he had a new molar.  He had been cranky from teething and was back to his normal happy self despite our continued absence.

Then she was moved to the intermediate nursery, she received more consistency in her care, it was quieter, calmer. She became old enough to start nippling. I relaxed a bit as I felt the end was getting near.

Suddenly she was reaching her goals very quickly and discharge was in sight. We got excited, she would be getting out early at just 35 weeks.

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Then there was the week of discharge disappointments. Of being told she’d go home Friday, then Sunday, then either Monday or Tuesday, then Wednesday and finally then Thursday, always learning the morning of that we had to wait yet again. It was a week of ranting to my husband about how I was going to demand they release her, about how I knew she’d be thriving at home in our care full time. Then getting nervous that I was over confident, doubting my instincts as the doctor told me her bradycardia episodes were too worrisome to leave. The going back and forth in my mind about whether I was pushing too hard, asking too much of her or that I was a rational person in an irrational situation. In my eyes the episodes were happening because she was in the hospital, but she couldn’t leave the hospital because they were happening. She has reflux that triggers bradycardia. Her heart rate comes back up on its own, she has no apnea, never needed stimulation. I could have been caring for her reflux and controlling the episodes better at home. My husband and I decided one of us always had to be with her to give her the care she needed. We got a hotel nearby and took shifts. We fed her carefully and held her upright for an hour after eating. She had no serious episodes. The head doctor explained that these episodes happen all the time to full term babies but no one knows because they aren’t monitored. He said she had no episodes in her history that worried him and we could go home on an apnea monitor. Thursday morning, 12/18/14, my stomach in knots from the stress of not knowing whether or not our doctor would finally agree to release her, we took her home. Suddenly she’s all ours; and it feels so right.

We are fortunate enough to have an amazing support system in our parents that made it possible to spend time with both of our babies every day. We are fortunate enough to live in a time and place with access to medical care and technology capable of supporting a baby born 10 weeks too soon. We were fortunate enough to watch our baby grow and develop steadily with no major set backs or traumas, to get her home in time for Christmas, a relatively easy NICU experience. 

If I could pass on some advice to NICU parents from this experience this would be it: do your best to spend enough time with your baby to get to know them better than anyone else and to be confident in that fact. Do your research and assert your opinions and your rights as her parent. Sometimes the doctors will know best, sometimes the nurses will know best, but sometimes you will know best and sometimes you will see things they don’t and be able to do things they won’t that could make a difference for your baby. I realized eventually that our different doctors and nurses all had their own, sometimes contradictory, opinions.  It is not as simple as just taking their advice. It’s overwhelming and intimidating and you might be made to feel incompetent. Despite already being a mother and having cared for a newborn you might be treated by some like your ideas about what your baby needs are wrong or even crazy. But that is your baby, and as my doctor admitted to me after grossly miss predicting expectations for my babies capabilities and progress, “Mother knows best.” (Father too of course!)

What The Stars Had In Store For Iris Vega

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This was always going to be her story. That’s what our doctor said, in so many words, at my postpartum visit last week. My estrogen levels were probably low from breastfeeding at the time of conception and the close timing of my pregnancies, effecting the placenta from its beginning. Without that timing there would be no Iris, there is nothing to regret. No wondering what I did wrong. No guilt that she didn’t get the start to life she should have. This is her journey, and “though she be but little she is fierce.” My grandmother made a habit of quoting me Shakespeare as a girl, and when I tell Iris how she braved the NICU, IVs, breathing tubes, feeding tubes, when I tell her how she amazed her doctors, how even her brilliant tolerance of her traumatic birth was an impressive feat for a 3lb 2 oz 30 week and 2 day fetus, I’ll do the same. I’ll hope that as she grows she’ll carry that with her, that she’ll have an early grasp on human resilience and adaptability. I hope it gives her courage.

Iris: The 1 Month Update

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It has been over one month now since our sweet baby girl made her early entrance into the world. She is now 35 weeks gestational age and getting quite close to accomplishing all of her goals for discharge from the NICU (temperature regulation, nippling for every feed, and steady weight gain).

They moved her out of the main NICU into an intermediate nursery that is much smaller, calmer and quieter with much better consistency in her care.

This week she passed the 4 lb/1800 gram mark and is now being “weaned” out of her isolette! (i.e.: she can regulate her own temperature.)

She began nipple feeding last week, from the bottle for the first few days and then from the breast. They started her off with one nipple feed a day, after she demonstrated that she was able to handle that they increased to two feeds a day, and then three, and today they bumped her up to four nipple feeds a day, which is every other feed, two of which can be from the breast. Once she proves she can handle that without any episodes (drops in heart rate or breathing from being overtired or stressed) or weight loss, she will be increased to nippling at every feed!

She is an amazing little breastfeeder!I had high hopes for nursing this baby after my struggles with Roman, and her premature birth made me nervous… but she’s a natural! She latches right on and sucks away steadily until she gets her fill. It is such a wonderful feeling. So far she does about 10-15 mins on one breast and then takes a sweet little nap on my chest.

She makes the same adorable newborn faces we remember so well from Roman’s first weeks, except she started “sleep smiling” even sooner.

Its been so amazing to me that a baby so young can seem so very normal. I adjusted so quickly to her size that full term newborns now look huge and in my eyes she is just like any other baby, capable of all the same things. I have to keep reminding myself how premature she is and how careful we have to be with pushing along her progress. I want her home NOW and my instincts about her capabilities seem to be a bit off in the doctors eyes. (Though she’s proven me right every step of the way!)

She wiggles herself all over her little bed and pulls at her feeding tube every chance she gets.

Sometimes she opens her big eyes wide and gazes about with this look of wonder.

I spend at least five hours with her a day, holding her as much as they’ll let me, and it is not enough. I can’t wait until I can stare at her little face all day long… and introduce her to her big brother! The two of them still feel worlds apart, it will be so wonderful to finally bring them together.

We have been so fortunate with her progress… we were warned that NICU stays involve a lot of set backs, “two steps forward and one step back” was how her progress was explained. She has yet to have a “step back” and we hope to have her home very VERY soon!

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.