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Posts Tagged ‘NICU’

A. has a cough, and a cold, and I have a knot in my stomach that gets bigger every time he coughs.  It makes no sense that I would react this way; or it makes all the sense in the world, depending on how you look at it. It’s the end of the day and I’m exhausted from worry.  Fucking worry.

It is not really any different from any of the other coughs our sweet boy has had his first year of life. Why am I obsessing about this one? Ah, oh yeah, I guess I obsess about all of them. It just seems like he’s barely over one “innocent” cough/cold before he’s got another one! Do all babies get coughs this often?  For nearly every cough, we’ve called the after hours nurse line, or his pediatrician, asking if we should bring him in. They always say No, unless he:

a. is having chest refractions, and/or showing difficulty breathing

b. has a high fever and the cough is not getting better

c. is blue

d. is wheezing or making noises when he breathes

e. has the cough for more than 3 weeks

I know these things, I know what to look for, and yet loose grasp of their place in reality. Because I also know Maddie, and I also have lived through a three month NICU stay, complete with diagnoses of Respiratory Distress Syndrome and Bronchopulmonary Dysplasia. And then there’s “swine flu” on the radio. A lovely cocktail of anxiety.

Is he sick because I let him play in the water when it was possibly not hot enough out? (It seemed warm enough, but then the sun would go behind the clouds and the wind would blow…?..?)

While I find myself here, at this point in time,

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there is a part of me that is still here.

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What I want to know is, is there a part of my former preemie that is still here?

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Or is he good to go?

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Is this a “normal” cough? Are his lungs perfect now? He has not had a single infection, nor hospital stay, nor dose of oxygen or albuterol, nor antibiotics nor post-discharge breathing episode. He has not had RSV or pneumonia or bronchitis or bronchilococolitis (or whatever that cousin of bronchitis is called). A test last year revealed that he did get “paraflu,” the virus that can lead to “croup” but he did not get croup. But still, I worry. Thank god for wine, and thank god for the hour when it is acceptable to drink it.

Mister Finn never saw a pulmonologist post-discharge, because he did not come home on oxygen. But I wonder if I should get his pediatrician to write a referral for one so that we can have tests done to alleviate some worry? Do such tests exist?

This boy is the best thing in the world. I love him so much that sometimes it’s scary to think about how much I love him.

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maryplaymobil

I feel really nervous sitting down to write this. I want to write it all out so that I can anchor myself in the present as I plan A.’s first birthday.

This is the first time I saw my son, standing.

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I was totally drugged on magnesium for the first day and a half after A.’s birth (to prevent seizures as my liver was recovering).  He was born on a Saturday night, and I didn’t realize I had had a baby until Monday.  Am I a mother?  Do I have a son? The first time I let myself think those thoughts, I was washed with a joy uncertain. It would rise up like a question, I would hold it a minute, then let it go before I got too hopeful.

W. and I had no knowledge of preemies and their ability to turn into healthy kids, so we were terrified and in shock. It would have helped immensely if I had already been connected to this blogging community.

There were so many weird, fucked-up feelings coursing through me, especially the first few days.  I read about these feelings in support books, but I was certain that mine were worse.  There was:  Fear of my baby, fear of looking at my baby, fear of loving my baby and getting attached to him, fear of dying and not being able to raise my baby. Disbelief that I had given birth. Feeling like I was cheating, somehow, if I said I gave birth, because I didn’t, really; rather, I had to have a crazy emergency surgery because I was very sick because my body failed pregnancy and instead got me and my baby very sick. I was actually embarrassed. I had to call and cancel a hair appointment for February 14th, and I was embarrassed. Embarrassed that I had failed, as though my pregnancy and now childbirth were a sham.  Had I really even been pregnant? Even that seemed doubtful at this point. Resentful that this was my baby’s birth. Resentful that the name we picked out for our healthy beautiful baby was going to be given to this baby. (How terrible is that? That is the worst one.) Mad at myself for all the fucked-up thoughts. Mad at myself for failing my baby. Mad at my body for not doing what it was supposed to do. Worried that he would die. Worried that he would have permanent health problems. Worried that I would die. Worried that I would have permanent health problems.  Disappointed that there would be no beautiful pictures of me and my baby just after birth, with me looking tired and blessed and him looking new and whole. Instead there would be incubators and wires, and me all swollen and sick. Guilty that I wasn’t what he needed now, for his third trimester. I couldn’t give him what he needed to live. I had failed, and the job was passed to the professionals, who would do it right. Guilty.  I know he needed my milk and that I succeeded in giving it to him. But at the time, I didn’t believe he really needed it, because I had failed him on all counts. I thought the nurses were just telling me it was liquid gold to make me feel better. Sometimes, I couldn’t imagine that there was any way this was all going to be OK– that he would be OK– and I would long for my life before I got pregnant.  Guilty. Guilty for not believing in him from the very beginning. Guilty for not landing on my feet and hitting the ground running. For not launching myself into motion right away and determinedly seeing him as a fighter and myself as his tireless cheerleader. He was a helpless thing that I failed. And what was I? Really, I didn’t know.  I was his visitor that would try not to accidentally hurt him while taking his temperature and changing his diaper.

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I would see the equipment, the nurses, the specialists, and be stunned, thinking: wow. you really have hope for this little being.  your hope is more beautiful than mine. mine is desperate, doubtful. yours is certain and steady and generous. mine is selfish and wounded.  yours is the hope that he needs right now. you are what he needs right now.  why am i not the one he needs right now?  how can i be the one he needs right now?  am i doing this right?  is this hurting him?  why are his alarms going off?  is this normal?

Much of the time in the NICU, I was keenly aware that I wasn’t supposed to be seeing him yet; he wasn’t supposed to be born yet. Looking at him in his isolette, I often felt like I was looking at an ultrasound. I was seeing my baby, but I was taking a peek at him through a barrier that felt 2 feet thick; I was catching him off guard, disrupting him.

From the very beginning, we were told that there would be good days and bad days; that we’d be on a rollercoaster for three months. That things might get very scary. We were very fortunate that things never did get very scary. There were definitely days that were harder or easier or more distressing or assuring, but there was no day among the 99 days where anyone was truly concerned about his progress. Yet the neonatologists, nurses, respiratory therapists, physical therapists, nurse practitioners, lactation consultants, social workers, other parents, and March of Dimes ladies were constantly reminding us that things could get bad any minute now. We were on the edge of our seats for three months, always waiting for the other shoe to drop. There were echoes of other people’s shoes dropping all around us. Two babies died in our nursery.

All of this, and I still knew—I have to admit that I always knew– very deep down, that he was going to be OK. I looked at him, raw and red, and saw a perfectly formed baby. Did I really make him?  Look! He has toes and legs and hair and hands!  He is perfect!  Just very little is all.

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He is holding W’s wedding ring in that picture.

I was excited to blurt his name, his full name, to anyone who would listen. I was certain it was the best name in the whole world.  I drew hearts on all the February 9ths on all our calendars, like a 12 year old with a crush. I sent an email out to all of our friends and family, with the subject heading: our little bird.

He was furry. Especially his shoulders.  We could touch him gently by “containing” him, putting our cupped hands around his head and feet.  He would calm when we did this. It was a few weeks before I could hold him. I felt like his mother when I held him.

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Cheech and Chong taught us how to pump. It was funny, but also like Hell.  Two night nurses showed up around 11:30pm the day after his birth. One spoke Chinese primarily, the other spoke Spanish primarily. “Hello Susanna! Do you have pain?! How are you?!  Now, you pump!”  Are you kidding me? Now? I’m only a few hours off the magnesium and totally wiped out. And, Really? You think I’ll even make milk? How could my body possibly make milk? They smiled with relentless cheer and bickered about how best to wash the pump parts, reprimanding Wifey, “No! You wash three times hot water, one time cold water! No soap!”  Then the other would tell us the opposite. “Use Ivory soap only!  You soak 20 minutes!” Then the next day the lactation consultant told us something completely different.

It sucked being in the postpartum unit, where I could hear healthy babies crying in the rooms next door with their mothers.

I was discharged on February 14th. Two days later, my C-Section incision opened. And I was also feeling some of the same abdominal discomfort that I had felt the few days before he had to be delivered; maybe liver issues?  Back to my OB. To be sure the liver issue had resolved itself (as it usually does with HELLP Syndrome), she did bloodwork. My LFT (Liver Function Test) was still very high. (It is supposed to be 0-40 and mine was in the 400’s). I was readmitted to the hospital, and stayed for another frightening week. No one knew what was wrong with me. Sometimes HELLP shows up/sticks around after delivery. Since delivery of the baby is the only cure for HELLP, what do you do if the baby is already delivered? Obviously, you die. Or, remain heavily medicated. But no one was telling me that.  They were just running lots of tests, doing labs twice a day. There was the possibility that it wasn’t HELLP after all, so I was visited by a different doom-speaking specialist every day, and each would order a nerve-wracking ultrasound of a different body part, usually to be performed at some ungodly hour of the day. There were perinatologists, gastroenterologists, wound care specialists, and all the OB’s in my OB’s practice.  I behaved bizarrely stoic through all of this, even cracking jokes with all of the medical staff working on me, and I’m usually not really that funny. I took pictures of them doing wound care on the 1.5″ deep, 5″ wide gash in my abdomen. Really, I was scared, mainly at night. W. stayed with me every night, sleeping on a cot. I would usually wake her in the night and ask her to climb into my hospital bed so that I could feel her breathing and relax enough to sleep. I was very afraid that I would die of this strange disease.

A week after delivery, my LFT was still climbing, not lowering. After ruling out several more possible causes, the OB’s and perinatologists gave up and handed me over to the liver specialist.  He was fatherly, with thick Scottish sweaters. He assured me I would not die, and put me on a hefty dose of prednisone, and the LFT started going down, slowly. I was discharged, and we’d have to wait and see what my liver did on prednisone over the course of a few months. More diagnostic possibilities were weeded out, including three different forms of autoimmune hepatitis, which is what the liver specialist thought I had. This would have meant being on steroids the rest of my life. Each of these tests took forever, and it was weeks before we had answers. Hepatitis E was also ruled out, but first I was called (as in, personally, on the phone, for 45 minute interviews) by the (suddenly concerned!) federal and state government health departments to see how I might have contracted Hepatitis E without having left North America in the last 6 months. Oh yes, I felt special.  Only one case per year is reported in North America, and it is more common in India and some other developing countries. The most rare of all of these possibilities was the very last one, the one the liver specialist took forever to admit that I had. Variant Acute Fatty Liver of Pregnancy, which one in 15,000 women get. It is usually diagnosed after death, and otherwise can only be diagnosed by biopsy or, the preferred and  less-invasive method, process of elimination. The OB’s still refer to it as HELLP, because Acute Fatty Liver of Pregnancy and HELLP are on the same spectrum of liver shut-down. It’s like you have preeclampsia on one end and then HELLP and then Fatty Liver.  A person recovers from Fatty Liver of Pregnancy, once the LFT is managed, usually–hopefully– without the help of steroids beyond a few months. I was going to be fine. But I was told that I would die if I tried to have another baby. I was finally weaned off the prednisone on May 7th, A.’s due date.  (Ironic, isn’t it?) I had to go back this week, actually, for my 6 month follow up blood draw to check my LFT, to make sure it is still down. I’ll find out in a week. It was hard being back there, like visiting an old nightmare.

There’s this Bonnie Prince Billy song called “No Bad News” on the album The Letting Go that goes:

hey little bird
hey little bird
thank you for not
letting go of me
when I let go of you.

That’s the song I sang to A. over and over as I held him on my chest.

31weeks

He was so light. We kept him covered with blankets that had been warmed for him. Gradually, we did “skin to skin” for an hour every day. I brought my own bathrobe, and would wait with butterflies in my stomach for the nurse to tell me he was stable enough to be held that day.

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Alarms were always going off, for him and the five other babies in his nursery.

Fortunately, we only live 10 miles from the hospital A. was at. I wasn’t one of those mothers who stayed at the NICU for fourteen hours a day. (more guilt).  Wifey and I would go for about five hours per day, either together or alone at two different times. The last few weeks I would stay longer, but earlier on we couldn’t really go more. I was still sick, and W. was trying to take care of me and go to work, and keep our bills paid, our food stocked, our dog happy, etc.

I was a cheeseburger-eating zombie for three months. Stoic, if I’m feeling generous, but mainly depressed and single-minded. The prednisone was doing weird stuff to my mood. I would walk through the halls of the hospital feeling like I was in a bubble, somehow floating through the real world without being a part of it. The bubble effect was even greater outside the hospital.  I was actually glad to have to pump every 3 hours because it gave me something productive to focus on. I felt lost and confused and dim witted. Somehow the time passed. I ate lots of cake in the hospital cafeteria. My parents visited a lot; my mom went with me to my scary doctors appointments. We would both eat cake. I think I was taking refuge in the cafeteria, because it seemed like the greatest place at the time.  I had three doctors appointments each week for a while: wound care, OB, liver specialist. Doctor, pump, NICU, cafeteria, sleep, repeat.  I guess we only renewed our monthly parking pass 3 times, but it felt like 10.

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Often A. would sleep through our visit, often he would fuss in discomfort. On those days I would leave deflated. Other days he would engage and interact with me and it felt like the moon in my hands, we would have conversations staring at each other. There were good days practicing breast feeding and bottle feeding and scary days where he choked badly. Once he stopped breathing — choking while breastfeeding — and I had to shout out for the nurse. I think that incident had some lasting traumatic effects, because for months afterwards I would break out in a sweat with anxiety every time I nursed him.

There were three blood transfusions, no surgeries, 8 days on the ventilator, many weeks on CPAP, then vapotherm, then nasal cannula. He stayed in the ISCU for three weeks after he was off oxygen because he was having a hard time eating via nipple. He did better with breastfeeding than with the bottle (an uncommon occurrence), but still not well enough to get a full feeding, eight feedings per day. Each day in the ISCU seemed so long. I started getting more demanding with the nurses, quizzing them at the beginning of their shifts. I was starting to believe that I could take better care of him than they.  We would get hopeful that he would be coming home, then have to wait. May came, and with it his due date, my birthday, and Mothers Day, all passed. Everyone kept saying, “It’ll be at least two more weeks.” Then on May 15th he yanked out his own feeding tube and they didn’t put it back in. On May 16th they said he was coming home tomorrow. I don’t think it was until that day that we let ourselves totally believe he was really ours, that we would get to keep him. That we could really be this lucky.

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I wish therapy had been required postpartum treatment. Then it wouldn’t have taken me so many months to finally seek it myself.

Dots are being connected. Healing is happening.

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This past week A. has had a lot of preemie doctor action; that is, several appointments related to his preemieness. Even though we have been back to the hospital for a few low-stress visits since A. was discharged, this time I felt on the verge of a panic attack while going through the habitual motions of finding a parking space in the underground lot, walking through the lobby, taking the elevator to the sixth floor, walking the long hallway to the NICU. Last February through May, every time I got off the elevator to go to the NICU, I dreamed of showing healthy, big A. the colorful mural stretched across the hallway. And here we are 7 months later, with this healthy big squirmy boy.

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I am so grateful to be able to say that all of the appointments went well.  So so so grateful, and so aware of every little thing that had to go right in order for him to be healthy today.

Last Monday, A. had his 6 month (adjusted) physical therapy follow up, and the physical therapist was happy to find him in the 6-7 month range. Interestingly, she changed her tune since our last visit (at 3 months adjusted), during which I engaged her in a 30 minute philosophical conversation in response to her concern that A. was performing the appropriate tricks of a circus seal baby of his adjusted age, rather than his birth-date age. I did not understand why she was concerned, when all the doctors consistently state that it is the adjusted age, not the birth-date age, they go by.  We just went around in circles, misunderstanding each other.

PT:  Well, it is just because he is a preemie that he is delayed and needs to catch up to the other kids in his age group. But that will happen over time. It is my job to make sure he catches up.

Me: What strange language you use! “Delayed?” “Catch up?”  Isn’t he right on target for his adjusted age– that is, the age from his due date, which is the date that his developmental clock started ticking? We are in a “play group” with other babies the same age, and he acts exactly like them. Why do you think he should be acting like he’s three months older than other babies with their May due dates just because he was ripped from his cocoon early? Why do preemies get extra homework? Haven’t they had a hard enough time already? And isn’t it not a matter of “catching up”– but rather that three months doesn’t make as much of a difference the older the child gets?

PT: We want to see him catch up to his birth-date age.

Me: Why?

PT: Because that is when he was born.

This was all very confusing to me, as this was the first I’d heard of the birth-date age being the “real” developmental age. I spoke with A.’s former NICU nurses, doctors, and present pediatrician about our odd PT encounter and they all thought it was as Twilight Zone-ish as I did, which was encouraging.

So for this most recent appointment, we went into it with the agreement that we would let PT lady do her job, and then basically ignore her. But this time she was pleased as punch, even though he scored exactly within his adjusted age group, again.

Afterward we went down the hall to the NICU and were able to see A.’s primary nurse, Carol. Wifey and I were each struck by how A. interacted with her. It was as though he remembered her.

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This week, A. had his 6 month appointment with his main NICU neonatologist’s high risk follow up clinic.  It went really well. It was good to see Dr. Stoltz again, and he was really pleased to see A. all chubby and pretty. He doesn’t have any concerns about A.’s development. Grateful grateful grateful again.

And today we had our first visit from the Synagis Fairy. The season starts late in Seattle, and even later (by two weeks) if you have poor-people health insurance. This latter slice of reality was not met peacefully by me, but there was nothing I could do. But we rather liked the Synagis Fairy. She will visit us monthly through April.

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I wish I had started a while ago, when A was in the hospital. Or even earlier, when my pregnancy started to get all scary.  Or while we were trying to conceive…. I suppose I could keep going back.  Blogging communities are such a unique place for support and story-sharing. A blog writer can be semi-anonymous; that is, anonymous enough to feel free to talk about personal things without taking many risks.

I suppose many, or even most, contemporary American babymakers get a lot of comfort and support from our mainstream contemporary American babymaking culture– the effect of which is so much stronger than I ever thought. I didn’t think I cared about it. It turns out it had infiltrated my subconscious, probably before I could even say “Barbie.” I have deviated from the norm: by being gay, by having a miscarriage, by having a difficult pregnancy, by having a preemie, by nearly dying in childbirth, and by having postpartum depression (along with a host of other postpartum acronyms; ah the bouquet: PPPTSD anyone? How about PPOCD? PPAD?)  As I interact with other moms who had babies around the same time I did, I feel like there stands between us many layers of my otherness. I still enjoy their company, as probably one day my baby will enjoy their babies’. But I am frequently reminded of my differentness, and the different circumstances that got us all our babies. At least I am white (like they all are) and speak English as a first language (as they all do); otherwise, it might be too much to bear. So, maybe by having some virtual/blogging friends who are gay, some who have preemies, some who have dealt with depression or a miscarriage, or difficulty getting pregnant– maybe I’ll have all my bases covered, with the cumulative effect of feeling less strange. That is my hope.

I started reading Alexa’s Flotsam blog first, at the suggestion of a dear friend. As someone who had never read a blog before, I found the similarities between my and Alexa’s stories totally incredible, as though stars had aligned to make this amazing connection. It turns out she has hundreds of readers all over the world who share a similar connection. She is an amazing writer, with the uncanny ability to describe the big and the small in the same paragraph, without either losing any sincerity. I would read her posts with mouth gaping, “Oh my god, that is exactly what A is doing this week!”  And I would read the comments her readers wrote– so caring and encouraging.  I clicked around, and soon came up with several blogs I was interested in enough to check on regularly. I’ve been doing all this online stuff while pumping, so every night I’d see how people were doing.

I started to see a trend among the women whose stories I’d learned:  When it came to babymaking, they didn’t have it easy, one way or another. They didn’t have it normal. Sometimes it seems like the world could be divided into two groups: those who had babymaking easy-peasy, and those that had it world-crashingly difficult. I know that there’s a vast gray area between the two, even amongst the blogs I read. But still, the difference is there.

My sister-in-law didn’t have to miss a single day of work her entire pregnancy, “might have been a little queasy one day,” carried past-term, was in labor for 2 hours, and pushed for 20 minutes.  Whatever.

I’m glad you all are out there. And I’m glad I finally got the gumption to add my story to the mix.

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