My Million Dollar Baby part 4

I think the hardest part about going over and writing about everything that happened is sorting it all out in my head.  It’s all so much a jumble of worry, fear, and guilt.  I know guilt is a weird one, but it’s one that a lot of preemie moms, especially micropreemie moms. It’s this awful feeling that my own body betrayed me.  I feel like I should have done something differently.  I feel bad that I wasn’t able to nurse.  I know that I don’t need to feel this way and that we did the best we could, but it’s the little thoughts that creep into my head.  It’s nice though, to be able to sit and organize it all in my brain.

Early on in her stay she got an infection and they had to transfuse her blood.  They gave her 2 ccs of blood. I wish I knew how much blood was in her body overall at that point. It would be interesting to know.  After that though, she really rallied.  She began putting on weight and growing steadily.  They did her weigh-ins around 11pm and I or my boyfriend would call to get her weight.  I was to the point where I couldn’t sleep until I had it.  Most of the nurses were pretty understanding about it.

The hardest part was leaving her alone.  I was always worried if she was lonesome and if she was getting enough attention.  It didn’t matter that I saw nurses going in and out of rooms giving all sorts of care and affection, I wasn’t there.  No matter that she was asleep and growing 80% of the time.  I felt like I was missing things.  The first time she wore clothes, I wasn’t there to dress her.  Her first little bath was someone else.  I took up doing her care as soon as I was allowed.  The first bath I gave her was nerve wracking.  They put a little bowl of warm water in the isolette and I would wipe her down with a soapy gauze wipe and then dry her down with another and massage in baby oil.  The very first time I honestly panicked afterwards.  I kept my cool during, but after I was a mess.  She only weighed 2.5lbs.

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The baby and her daddy have the same hairline.

I know we were fortunate though, so many micro preemies are in the NICU longer than she was.  We were there 73 days and it was awful.  She gained weight fairly quickly though, and even started bottle feeding sooner they expected.  Sh had a tube from her nose to her tummy for the majority of her stay.  I honestly, cannot express how much easier it was made by how amazing our nurses were. I don’t know how they do it.  Four days a week in 12 hour shifts taking care of vulnerable babies, some that don’t make it is a job for people who are basically heroes.  If I cried, they listened, if I was afraid, they reassured me, and they were constant sources of encouragement.  There were a lot of times that I just sat with her and cried.  I did kind of a lot of crying there, I’m not going to lie about it.

It was the beginning of October when the doctors started talking about GOING HOME.  There were a few things she needed to be able to accomplish before she could go home. She needed to weigh more than 4.5lbs, she needed to go 5 consecutive days with out a drop in her breathing or heart rate, she needed to be able to sit up in her car seat without having an event, and she needed to be taking all of her food by bottle.  It was so frustrating because she really took to the bottle right away.  She was really happy to be in control of her own eating, I think but it was hard work.  She was trying and sucking but it was too hard and she started having heart and breathing events.  They cut back on it and gave her another week before trying again and HOLY CRAP was she eating.  Finally we had a go home date. November 2nd.  She passed the car seat test with no issues. Our baby was coming home at 4lbs 6oz in preemie clothes that were too big for her!

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In a car seat that starts at 4lbs and an outfit that starts at 6lb.

So this is it, this is the last of the hospital posts I’m gong to do, I want to get on to the parts where we are living.  I don’t think you can have that without this though.  This the baby that was a little over a million dollars in covered hospital bills and another $78k out of pocket.  She’s worth every penny.

My Million Dollar Baby Part 3

LONG HAUL

It’s worth noting that among all of this insanity, we were moving. We found a townhouse on a Saturday and then on Monday I was giving birth, Wednesday afternoon released me and we had a move in date of Friday the 25th.  My boyfriend had spent the better part of the last decade living like a nomad and had few possessions and no furniture.  I had split from my ex-husband 2 years prior 6 weeks after my dad and so moved in with my mom. I needed a place to regroup and she needed company without my dad.  So I have things in storage, but I left the big stuff, furniture and things with my ex.

My boyfriend and I had nothing really. The plan was to go to a scratch and dent furniture store near my mom’s house and buy everything we needed, put it into a moving truck, go to my storage unit and fill it the rest of the way, and then take it to our new place.  This was a fine plan until I had the baby, now it seemed like basically a nightmare. I had $1000 cash in my purse because if you paid cash rather than credit the store would haggle with you and I left it sitting somewhere in the store. I don’t know when, I just know that I realized it was missing. Thankfully someone turned it in to customer service, but I was a fucking wreck. I cried on an ottoman for a good 10 minutes.  We got most of what we needed though: a couch, recliner, tv stand, a mattress and box springs, and we even found a Pack n Play and a cat tree.

Then we set out to the U-Haul. Oh U-Haul…I hate you. I had called them and let them know I lost the key to my unit and they told me for a $50 fee they could cut it off, I figured that was fine, that was the cost of me being disorganized. Unfortunately when I got there they let me know that they couldn’t cut MY lock off because it is a disc lock. I would have to call a locksmith. It took that guy an hour and a half to show up and quote me $269.  I should have just paid it because my things have been in there since and I keep having to deal with their nightmare customer service and wanting to die every time I talk to them. Plus we’ve spent well over the $269. Meanwhile my boyfriend is teaching himself to pick locks in an attempt to get into the lock without paying a locksmith. I don’t have any more to say regarding this because it’s stupid and makes me mad.

While I was still in the hospital after giving birth they brought me a pump so I could work on getting my milk to come in as soon as possible. I got a few little drops the second day and I was pretty excited. I was pumping 20 minutes every 2 hours for 4 weeks before I quit. I was so discouraged. I was pumping, massaging, taking hot showers, eating oatmeal, eating breast milk cookies, taking fenugreek, and generally adhering to every bit of fact and old wive’s tale I could find trying to get my milk. I drank so much water I felt like I was going to drown. I’d go to the NICU with my lunch bag full of containers with 3-7 milliliters of breast milk and feel like the nurses were disappointed when they opened our rooms little refrigerator. “Just keep trying! It’s liquid gold,” they would all say, cheerfully. I know I’m projecting on them, they were friendly and encouraging. I just felt like my body was betraying me again. I couldn’t keep her in my body and now I couldn’t feed her. Finally I decided that they were giving her donor milk, supplementing with formula and I couldn’t do anymore. She could have a mom that was miserable trying to produce drops of milk, exhausted and self-recriminating or she could be a bottle fed baby with mom that was holding it together.

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Breast milk cookies. They are actually really good. Does not contain tit juice.

I know that a lot of preemie moms are at the hospital 12 hours a day, every day.  They spend hours a day holding them. I joined a 2 micro preemie Facebook groups and reached out for support but I did not find it helpful.  So much of it was moms in a morbid “who has it worse” competition or moms with situations that went even beyond what we were going through. These women were there for hours, making posts about their exhaustion and how their marriages were falling apart. Pretty early in the process we decided that we weren’t going to do that. We went 5 days a week and we stayed 3-4 hours. I did 1-2 hours of skin to skin care each time. We both kind of felt like the less we futzed with her the more time she spent sleeping and growing. I don’t know if it’s accurate or not but we brought her home about 45 days sooner than they estimated when she was born.

At first this was fine, she was a little bit of a thing. It took probably 3 weeks to get her up to 2lbs and we celebrated hard when she finally did. After than she seemed to just flourish. I have to talk about her diapers though. Pampers is the only diaper brand to make diapers as as small as she needed. Even the smallest one was big on her at first. They had 3 preemie sizes, although I believe they’ve recently added on that the baby just lays on if they are too delicate to wear one.

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The little one is half the size of a playing card.

My Million Dollar Baby Part 2

THE AFTER

I got to go to the level 2 NICU at about 2am to see my daughter.  She didn’t even have a name yet. We thought we had 15 more weeks to settle on something.  I had a big list which I realized contained the names of all the Golden Girls. I like old names, Judy was a front runner.

My boyfriend wheeled me down the hallway, a gown tied to me, cold pack, and blood soaked pad between my legs as I cried. I had to see that she was ok, I had to know she was really alive.  It took 2 left turns to get me to a big rotunda and then a secured door where security asked for the number on a wristband delivery had placed on me the moment she was born.

We were buzzed back into the NICU and guided down the hallway to her room and there she was.  I heard the doctors, I heard the nurses, I heard my mom, and my boyfriend telling me important things I needed to know but it all sounded like it was coming from down a long hallway. They were hardly even there for me. My baby was there in her little baby terrarium under a glowing blue Bili light, there to prevent jaundice. Lines attached to her umbilical cord, providing nutrients I was providing hours ago. Nutrients I felt like I should still be providing. I was suddenly filled with a sense of relief mixed with guilt and regret. She was everything I wanted and I had somehow failed her.

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It was pretty impossible to get a picture for the first week. She just looked like she was in a tiny baby rave. I could only reach in through the little port holes and gently touch her hands and feet. I was told only touch, don’t rub, her skin can’t handle rubbing yet. I’d love to tell you that she was beautiful, I would love to tell you that she was a little doll. I can’t though. The poor thing hadn’t really begun to put on any weight yet. She was born 1lb 10oz and barely over a foot long. She looked like a cross between Dobby the house elf and Gollum. Bless her heart.

I am not really the type though to dwell. She was alive, I could work with that. Whatever developmental delays she might have, challenges she may face, or physical disabilities she may have, she was alive. Anything after that was something that we would manage. I didn’t really have a choice.  They pumped both she and I full of antibiotics to combat the effects of the chorioamnionitis. The doctor put her on an experimental treatment of hydrocortisone. The idea was that because she was born in such traumatic circumstances she had heightened cortisol levels and when that adrenaline dropped she would crash.

The next morning the doctors met with me and told me it would be at least after Christmas before I took her home. She was born on 8/21/17, her due date was December 1st. Now I was looking at Christmas or New Years to bring her home. My boyfriend held my hand as I cried and listened to the doctor. Nurses came in, cheerful, caring, and full of the knowledge they have gained taking care of babies on the brink at 12 hour shifts, 4 days a week. These were the women who were going to get me through this.

It was a week before I could hold her.

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My Million Dollar Baby part 1

BIRTH DAY

Yesterday was 6 months since I gave birth unexpectedly. Not that I didn’t know I was having a baby, I won’t be featured in any “I didn’t know I was pregnant” stories. I gave birth at 25 weeks and 3 days into my pregnancy. When I look back at the week or so leading up to my labor I can see how things add up, but at the time I attributed so many issues to just being pregnant.  In fact, I had gone to the doctor for some of them and she diagnosed me with BV, gave me an antibiotic, and sent me on my way.

Babies born at 25 weeks have a survival rate of 50%-80%, but she was born because I had a severe case of chorioamnionitis. It’s a bacterial infection of the amnion and chorion, which are basically layers of the amniotic sac. It only occurs in about 6% of pregnancies and dropped my babies survival probability in half, and it is really super gross. I had at some point gotten a tear in my sac and what I thought was pregnancy incontinence was my amniotic fluid slowly draining, also bacteria was getting inside the sac.

Getting back to they day I gave birth, it was rough. I woke up around 7am with awful abdominal cramping that I attributed to round ligament pain from my stretching stomach muscles. I took a warm bath to try and ease it and that didn’t help much. By 9am I was laying on the couch while my boyfriend worried. By 11am I was bent over the side of the couch crying and trying to convince him I would be fine. “We’re going to the hospital now, before I have to scrape you off the floor,” he said.

We went to the satellite branch of one of the local hospitals and they brought me back immediately, took a look at my cooch, listened to my complaints, and promptly informed me that I was in labor. I advised them that this was of course impossible, haha. They told me they couldn’t treat me there and sent me by ambulance to the main hospital.  At this point they were administering drugs to try and keep her in and stop labor as well as pain meds. I spent hours laying in the hospital bed, screaming with contractions and trying to make it to the toilet to pee because they were pumping me with fluids.

At some point I looked at the toilet before flushing and noticed that it was filled with what looked like egg drop soup. I told the nurse and she looked and her face got very still and she turned and walked away. I wasn’t entirely with it but I knew that probably wasn’t good. My amniotic fluid had gone…well…chunky.

About 20 minutes later a very worried looking doctor from the NICU came to my room and sat down on the end of my bed and began to explain what was going on while my boyfriend held my hand and we cried. I was told she might not make it, I was told about all the developmental disorders she might have due to my infection and her prematurity, and was told that they were going to do everything they could. My boyfriend called my mom and told her what was going on and to hurry to the hospital.

All day long everything had been about keeping her in and now, we were turning on a dime to getting her out as quickly as possible. They couldn’t give me an epidural, my white blood cell count was too high and if there was any of the infection in my blood they risked pushing it into my spine. They also stopped the drugs to prevent labor, so what I had thought was pain before was actually just the tip of the iceberg. My abdomen was swollen from all the infection and I had a nurse cramming a heart monitor hard against my belly. At one point I had an amazing freakout; they had tried to give me an epidural once before determining they shouldn’t and had botched it. I don’t know, maybe they botched it, maybe I wasn’t being still enough. All I know is that at one point I demanded that everyone get the hell out of my room and leave me alone because I needed to gather myself.  Actually, I think what I said was that I needed to get my shit together.  The nurses said, “fine, but we’ll be back and in greater numbers.” Apparently they are sand people.

I would say that I probably was in labor when I got up at 7am and at 10pm after hours of crying to my mom, my boyfriend, nurses, and the new gods and the old they wheeled me to the OR.  The goal was vaginal birth but they wanted to be prepared for anything.

You know, when you watch a movie and a baby is born, the first sound is crying. You expect it.  After only 30 minutes of actively pushing my baby was born and it was silent. I’ve never been so terrified in my life.  “Is she alive?” I asked it quietly and no one answered me. I panicked. I couldn’t see her, I couldn’t hear her, and for the first time in 25 weeks my body was only mine again. “IS SHE ALIVE?”  It was a shout in my own ears. My boyfriend and the doctors answered me, “yes, she’s alive, she’s ok.”

They wheeled me around a corner and I saw her for just moments before she was taken to the NICU. She was so small. She was so delicate. She was wrapped in plastic like leftovers. Then they whisked her away and took me to a room to recover. They would let me know when I could come see her.

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