Surviving the NICU: Life as a Preemie Mommy

Preemie Motherhood - 2

This article is the first in a series of guest posts. I have invited a few select friends and family members to contribute to my blog. I have chosen them based on two things: 1) I personally go to them for help; and 2) I am fascinated by their unique parenting challenges, because I want to hear how they make “okayest” work for them.

Allow me to introduce you to my sister-in-law, “Dee”, who, along with her 2-year-old daughter, Em, is currently living with us. Em, my niece, was born 3 1/2 months early and survived. Em, a former micropreemie, now weighs 27 pounds and can hold her own against her three cousins (who have managed to outweigh her). We have four children under the age of four living in this house. The chaos, mess, noise, and diapers are out of control, but every time I see Em giggle, hug a cousin, or say “oops” with a lisp, my heart soars. She is the Girl Who Lived. Here is a little window into the world of preemie motherhood.

When Melissa asked me to be a guest writer for her blog, I thought about what “okayest” moments I’ve had parenting my daughter, Em. I could go on for days about different situations we’ve had, but being a mom of a 1.5 lb baby tops all of my other mommy moments. Parenting in a NICU is incredibly difficult, especially when you never saw it coming. There are no perfect moments. There are no lovely, glowing pictures of you snuggling your newborn. It is chaotic, heartbreaking, and eye-opening to watch your tiny baby struggle to live, while you struggle to keep your sanity. Each and every day is about surviving and being okay.

Em’s (glossed over) Birth Story:

At 25-weeks gestation, I noticed a small amount of spotting. I’ve heard it’s not terribly uncommon, but I had my husband take me to the hospital just to make sure. As my doctor was checking me, his expression turned from unconcerned to uncomfortable. He told me that I was 2 cm dilated, and needed to be rushed to a hospital with a level three NICU, so that they could put a stitch in my cervix.

While in the ambulance, I asked the EMT how many premature babies he had delivered. He responded with: “Two. But neither made it, since we aren’t equipped to keep smaller babies alive.” I was stunned and furious. Who says that to a patient that is 25-weeks pregnant and on a two hour trek to the hospital?!

By the time we arrived, I was 4 cm and having contractions. They were able to give me medication to keep Em in the womb for another week, which saved her nearly a month in the NICU.

On the seventh day, I woke up bleeding and contracting, and spent the next five hours begging my nurse to get my doctor to help me. She would come in every half an hour or so to tell me that I was fine, and that I was not in labor. I cried. I pleaded. It took my mother and husband yelling at nurses down the hallways to get someone to come in. By the time my doctor showed up, my daughter was having her legs crushed in the birth canal. I was told I needed a stat c-section. Then an ultrasound showed that there was no time, and she needed to be born breech, immediately. My tiny little baby was born with bruised, black legs, because of my nurse’s negligence. Had she been head first, my time as a mom would have ended that morning.

This is the day Em was born, at 26 weeks gestation, when her eyes were still fused shut like a kitten's.

This is the day Em was born, at 26 weeks gestation, when her eyes were still fused shut like a kitten’s.

Em went through nine weeks of crazy ups and downs. We went through more than I can even write, but here are some of the things I’ve learned along the way.

Being a preemie mommy means:

-…you were (more than likely) unaware that your little one was going to come into this world so soon, and are BEYOND unprepared. And it’s okay that you are! You will learn by watching your baby change each hour of each day (and from the occasional google search that turns out to be helpful, and then is just down-right terrifying).

-…mourning a pregnancy that ended too soon. You will feel gypped. You may have to go to your baby shower while your baby is in the NICU. You don’t get to look super pregnant and take fun maternity pictures. If you’re like me and waited until the second trimester to tell anyone, you’re going to feel like you’ve been pregnant for five minutes.

-…not getting to touch or hold your own baby for days or even weeks.

This is the first time Dee was able to hold her own baby. She had to wait two agonizing weeks for this touch.

This is the first time Dee was able to hold her own baby. She had to wait two agonizing weeks for this touch.

-…being discharged and having to go home without your baby. This was one of the worst nights of my life. The guilt, the pain, the uncontrollable need to just be with your baby…. As hard as the first night is, it gets less painful as visits become routine. Eventually, you will be able to walk out of the hospital with your sweet little preemie and it’ll be a day you’ll never forget.

-…having to decide different courses of action, whether they are invasive, risky, or down right experimental. Em was part of the NEWNO study, which is a double-blind study to test whether or not giving a particular gas to preemies helps them breathe on their own faster. It was a scary decision to make, but to us, everything that was being done to save Em was first tested on preemies that were part of studies like this one. She can know that she made a difference to future preemies.

-…realizing that you and your child are capable of more strength, endurance, and hope than you can imagine. It may not seem like it, now, but trust me. You will see.

The Unique Positives:

-You will get to know your baby sooner than most parents do. You will see their personality shine through from day one, and (let’s be honest) it is interesting to watch a baby develop before your very eyes. When Em was born, her eyes were still fused shut, like a kitten. When she was about two weeks old, we walked up to her incubator to find these odd paper sunglasses on her, and her nurse told us that early in the morning, her eyes opened. I wish we could have seen it, but we put pictures of us in her incubator, so at least she still saw us.

-You will see that your preemie is a warrior. They will go through things that adults can’t handle, and their strength will amaze you. One of Em’s scariest NICU experiences was when a PICC line (an intravenous catheter that is threaded from the arm/leg/head to the heart for prolonged medication) site became infected. For several days I watched the slightly concerning bump on her foot turn into a black, marble-sized wound, that the nurses just would not take seriously. It wasn’t until she started running a fever of 103 degrees with her heart rate at 220 bpm, that they took action. They took off my 2.5 lb infants clothes and made her stay in an open bassinet for hours just to bring her temperature down. Once her fever was under control (days later), they told us that they needed to do a spinal tap to check for a deeper infection. After they performed it (and we cried harder than she did), we went home, for the night. At 3 am, I received a call from the doctor that they didn’t get enough fluid to test, and that she needed consent right now to perform a SECOND spinal tap, while she was all alone. As you can imagine, spinal taps are PAINFUL, and she was only given a small amount of Tylenol to ease the pain. These tests bring grown men to their knees, and yet these preemies often go through some of the scariest things alone. By the time we got there, she was bundled back up and sleeping soundly. It was if she hadn’t just had two giant needles jabbed into her frail back, just hours earlier. I don’t think I would have been in her position.

-You have more milestones to celebrate! Daily weight-checks to see if they’ve gained a few grams, being able to finally put some cute little clothes on your tiny baby, graduating to an open bassinet, and for some preemies, getting to take an ambulance ride to go from a level three NICU to a hospital with a level two!

Life at Home:

Here is the joyful day of Em's homecoming, after almost 3 months in the NICU.

Here is the joyful but intimidating day of Em’s homecoming, after almost 3 months in the NICU.

-The first night at home, you will be thinking: “WAIT. No monitors?! How will I know what her sats are? What if she has bradies (bradycardic episodes)?! How will I know?!?!” The idea of going from medical care 24/7 to being totally on your own is terrifying. Chances are, there will be a lot of unnecessary phone calls to the NICU because you think something is wrong, but DO NOT stop calling just because you think you’re being overly concerned. Had we given in to the many doctors that told us we were just young parents, and were still having some PTSD from Em’s prematurity, she would have never been diagnosed with epilepsy when she was, and she very well may not be here today, had we not followed our parental instincts.

-As time goes on, you start seeing your baby as a normal, healthy baby. No wires, no needles, no bandages, just your wonderful munchkin. Other people, however, don’t always know how to treat you and your preemie, now that you’re home. Which brings me to my next thought.

What NOT to Say to a Preemie Mommy:

1. “At least you’re not 40 weeks! Being this pregnant sucks!”

Say this to a preemie mommy, and she’ll want to punch you in the left ovary. We would give ANYTHING just to have been pregnant long enough to deliver a healthy baby. Bite your tongue!

2. “I wish I didn’t have to breastfeed!” or “You DON’T breastfeed?”

Preemie mommies can’t always lactate, which makes us feel inadequate and guilty for robbing our sickly babies of something that is so good for them. Even if you don’t want to breastfeed, it stinks not to have a choice.

3. “How is your baby having a GOOD day?! It’s so sick!”

Preemies can have good days. Even if it’s just gaining ten grams or coming down on their oxygen levels, it’s progress and that leads to hope. If you aren’t going to be positive/sympathetic, don’t say anything! We could use someone to just listen to us.

4. “Don’t worry, she’ll be fine.”

Yeah? Where did you get your doctorate of neonatology? Not only is this infuriating because no one knows if your baby will be fine or not, but it makes you sound passive about a very upsetting situation.

5. “Yeah, my kid was in the hospital with the flu for a few days. It’s tough!”

There are many parents out there that have had kids in the hospital, and many for reasons far worse than prematurity. But if your kid is in the hospital for poison ivy, don’t compare.

6. “At least you didn’t have to deliver a big baby!”

(Insert the hundreds of “at least you”’s that preemie parents can throw back at you.)

7. “She looks awful!”

She may not look well, because she is small and sick, but come on, now.

8. “She’s a preemie and you took her outside in this weather?!”

I’ve got more doctors numbers in my phone than I have friends/family. If I need medical advice on my kid, I won’t be asking you.

9. When your GYN nurse asks (without looking at your chart) “Did you feel the baby move, today?”

And cue sobbing. Running into people that don’t know you delivered early is tough. I have no advice for this one. It’s just awkward and sad.

10. “I’ve heard that the odds of a preemie doing ____ are ____%”

I’ve heard that the odds of being killed from falling out of bed are 1 in 2 million, so I’d start sleeping on the floor, if I was you. I hear statistics from every doctor and nurse that crosses my path. Don’t be negative, or try to be “realistic” about it. Just be supportive.

A Few Things to Remember:

-It’s okay to have fun outside of the NICU. I’ve had my share of guilt about going grocery shopping, seeing a movie, or just getting some dang sleep, but it’s necessary! You really do have to take care of yourself! Your baby has plenty of people taking care of him/her, so get take a little time each day to do something for you, even if it’s only for five minutes.

-Don’t take people’s crap in the NICU! I had a good share of family members that needed to just get the boot, either from being upsetting or negative. Your baby wants a happy mommy, and he/she won’t get that if mom is stressed out by a visitor that isn’t being supportive. Don’t be afraid to ask them to give you some space!

-The NICU stay will end eventually. It will seem like you will never escape the monitors, doctors and the sickening smell of Purell, but in a few weeks/months, you will hopefully be home with your little one.

There is no such thing as a perfect parent, but it seems like an even more unattainable status when you’re the mommy of a preemie. You don’t have to have it all together. You don’t have to pretend like you didn’t just cry in Target because a woman was pushing around her newborn, and you can’t even find a preemie shirt that will fit your baby (which, by the way, you’ll want ones with snaps that go down the front!). If you follow your instincts, get some sleep every once in a while, and just do your best, you will be okay.

Here is Em on her second birthday. Look how strong and big she is! Photo courtesy Mr. Okayest (Em's uncle)

Here is Em on her second birthday. Look how strong and big she is! Photo courtesy Mr. Okayest (Em’s uncle)

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One Year Later: In Words

First Birthday Twins

My babies had their first birthday this week. I am so proud of them, and me, and my husband, and my oldest son. We did it! Happy 1st birthday to two of my boys! I guess I can’t call them “my babies” anymore, but I don’t like saying “my twins” when they are so different from each other.

Also, happy “Survival Day” to me! While I don’t really want to think about what was happening a year ago, I do want to celebrate surviving that day and surviving the first year. I want to celebrate my boys. I want to celebrate the doctors who saved us. And most of all, I want to celebrate all the friends and family who gave us so much of themselves during the bedrest and the first year. We could not have done this without them. (Seriously, the doctor said so!) We are overcome with love for them all.

Seeing the leaves fall all around our wooded property makes me feel the way I did a year ago. I went into the hospital when it was summer. I came out of the hospital when it was fall. It was only a week, but it was the longest and scariest and bravest and happiest week of my life. Mr. Okayest and I just stood in the kitchen last night and hugged, as three children clung to our legs and cried for attention. We just needed each other for just one moment. He had looked at me and said, “A year ago today we were still in the hospital.” We don’t need to say much more than that. He was by my side for everything.

We both still have a lot of pain to process from that time. What strikes me about that fact is worrying and wondering about all the people who have had far worse stories than mine. I mean, we survived! We had a happy ending! We birthed two children, and even though one wasn’t breathing and had to be intubated and sent to the NICU, we still brought both of them home with us! How is it possible that we still have so much pain and emotion from this one week in our life that actually ended so well?

What about all those who have not had happy endings to their hospital stories? I think about friends of mine who have lost both newborn twins. I think about close family members who had a micro-preemie who spent over three months in the NICU and almost didn’t survive. I think about a family member who has died from cancer. I think about a family member who had to face the decision of whether to terminate a baby who was fatally ill. What kind of grief and pain and loss faces them each morning? How do they process it all? How do they feel when they look at a hospital bed on TV? What kind of hugs do they give their loved ones in the kitchen?

One year later, we are so grateful for everything. We know we could have lost everything that day. No matter how much I complain, I am even grateful for little things, like being able to vacuum or unload the dishwasher, or even change a diaper. There was a long period of time where I couldn’t do any of those things for my family. I have conquered so much, with the help of a small army. I still have a long way to go.

What I’ve conquered:

What I am still dealing with:

Healing physically – After bedrest and three procedures after the birth, then recovering at home with some physical therapy, I am 100% healed, albeit scarred. Healing emotionally- Both my husband and I, as well as my 3-year-old, are still wrestling with some of the emotional scars we bear from that time.
Weight loss- I’ve lost about 75 of my 8o pounds. I have no secrets. Yes, I breastfed, and I mall-walked all winter (and trail-walked all spring) while pushing two kids and carrying another. However, I think anyone who brags about postpartum weight loss should be kicked in the face, because I think my Dad’s genes are probably to thank for the weight loss. I have many friends who have worked a lot harder than me, but still struggle with the weight.  I am just not sure we have as much control as we think we do. Muscle Mass- My body feel soft and wobbly. My belly is still a waterbed. Most of all, I just do not have the muscle I need to carry and lift these tanks I have created. My back and neck hurt all the time. I carry them primarily on one side, so I am all bulked up on one shoulder and not the other. It’s gross and it’s painful. I have no core strength and no arm strength. Mr. Okayest says my arms are like little q-tips, with cotton ball hands. Ha! I usually say, “I didn’t get stronger. I just got sorer.”
Keeping them alive for one year  Making sure they get enough attention and love
Sleeping- I have taught the babies to sleep through the night and nap on a rigorous schedule. We cried it out and it was an excellent decision. All 3 of my kids sleep from 7:30PM to 7AM. Having too much adrenaline – I cannot seem to relax at any point during the day. I am constantly in fight-or-flight mode and I don’t know how to stop.
Starting potty-training my oldest Finishing potty-training my oldest
Learning how to put all 3 to bed by myself- This is possible simply because they are older now. They have learned how to wait. As newborns, they were incapable of that! Really supporting my husband through grad school- Putting the kids to bed myself on school nights is still torture. (I usually have help from my wonderful in-laws, though!)
Childproofing horizontally Childproofing vertically – Umm, my oldest was not a climber. I’m getting schooled by one of my twins.
Learning to plan and execute healthy meals while three kids cry during the witching hour (a.k.a., “the arsenic hour”) Learning to plan and execute healthy meals while three kids cry during the witching hour WITHOUT LOSING MY COOL.
Having a family via adoption and biological means Understanding how to raise each of them to be okay with that

First Haircut

This photo captures the passage of time to me. The leaves are changing again. My babies survived, and grew big enough to need haircuts! Here is E’s hair on the ground, with the attachment to the clippers and some proof of autumn. Last year at this time, there were only the leaves.

My Birth Story: How I Almost Lost My Uterus, My Life, and a Twin

I originally began writing this in December 2012, when the twins were two months old. I didn’t finish it until August 2013, when they were ten months old. It took me that long to address some of the hard memories.

*CAUTION: Medical grossness ahead. This post includes the phrase “torrent of blood” somewhere, as well as the word “uterus” eight times. *

preg belly and r photoshopped

(I had many months to go here!)

My Birth Story: How I Almost Lost My Uterus, My Life, and a Twin

It was scary. It’s true that I almost died, and most certainly came close to having a hysterectomy. More than a couple doctors and nurses  said that if I had been at any other hospital, my outcome would not have been good. I had postpartum hemorrhage and uterine atony (i.e., when the uterus can’t contract again after losing so many placentas, babies, and blood). I lost 5 LITERS of blood – enough to kill me. They worked quickly and ended up doing three other procedures after my c-section, that same day, to save me. I only remember one of them- the most pain I’ve ever experienced (and I would like to think I’ve had my fair share of pain)- and then 2 other procedures while sedated (thank goodness). I woke up with my hands tied down and a breathing tube in my throat and I didn’t know if I still had my uterus or if G had even made it. I never met him until his third day of life.

I had been on modified bedrest for the last trimester of a high-risk twin pregnancy, with a demanding and often quite sad 2-year-old. The women from my LDS church set up a rotating schedule for R during my last month, where a different sister picked him up each morning, and returned him each afternoon. They took him to their houses, or to the playground. For a major introvert like R, this was pure hell. Besides being pure hell, it was also a major contributing factor to the success of my pregnancy, according to my doctors. It was all I could do each morning to get him dressed and fed. I would hide my tears of pain from him as I got up off the floor. I had been having contractions since 18 weeks along. I had very carefully gained my recommended 75 pounds, and then 5 to 10 more of water weight – or tator tots. (I had been in the “underweight” BMI category.) By some miracle, I made it to 38 weeks, which is the very earliest the hospital would schedule a c-section. My pain was so great by the end that I was on narcotics for the last month. Don’t judge. Every ultrasound tech sucked in their breath and clucked with sympathy when they saw my babies’ head positions – dropped and locked. Together.

The day of the birth came. It was October 2012. I was so relieved.

DCIM100GOPRO

I hadn’t slept or sat or eaten properly for weeks. Twin pregnancy is a living hell that I wouldn’t wish on anyone. (Anyone who says otherwise is probably the kind of person who says they can climax during labor.) Thirty-eight weeks is considered full-term for twins. I was doing good, technically. The last ultrasound showed that the babies were only 5 ½ pounds each, which is respectable enough for twins. I had been 2 centimeters dilated for a few weeks, and having irregular, disorganized contractions. Everything looked good on paper. I was technically fine.But I knew something was wrong – or I just knew something was going to be wrong. I am not a pessimist. I just had this foreshadowing kind of a feeling.

The c-section started out normal enough. As they pulled E out, I literally (obviously) felt a huge weight lift – I cannot express the relief of taking a full breath. I saw him, and I could hear my husband exclaim, “He looks like my Dad!” I remember thinking, why is that baby so pink? I had almost imagined him as an African-American, like our first son. And then I couldn’t keep my eyes open. I was going dark. I was in and out of consciousness as they pulled G out. I never saw him. He wasn’t breathing. I wasn’t breathing. Things were going wrong, but no one seemed super concerned. I could hear the various professionals around me commenting on upping my this and my that, but they weren’t rushing and they weren’t nervous. I wondered why no one thought things were that bad. At some point, my husband tried to take a family photo of us with E, just as I had asked him to do. I don’t remember him taking the photo and didn’t see it until much later. My eyes are closed- BECAUSE I AM UNCONSCIOUS! –  and I look gray. It is not the kind of photo you put in your album.

My husband told me later that G first responded to his voice. The doctors and nurses were working on him, somewhere behind me, and it wasn’t until his Daddy whispered to him that he took his first breath.  Many, many months went by before I read all the detailed paperwork and realized G did not take a breath until he was 4 ½ minutes old. He was intubated and whisked off to the NICU.

The babies were huge for twins – or huge for a momma with an underweight BMI. They were 7 ½ pounds each. Well, maybe- they had weighed G with his intubation tube in, so they told me we don’t have an actual weight for him. My husband said to the doctor, “Why can’t you just subtract the weight of the tube from the birthweight?” She replied, “It doesn’t work like that.” He said, “Um, yes, it does.” In any case, the babies were far from the predicted size of 5 ½ pounds each.

As I lolled around, only halfway understanding anything, they wheeled us into the recovery room. I remember thinking, this is weird. I am not okay. Why are we moving ahead here? They gave E to me and my husband put him to my breast. We had a perfectly normal, yet out-of-this-world five minutes together as a family. E began to suckle. I couldn’t sit up and I couldn’t hold him, but E edged his way to his first meal. As a mom who previously did not give birth or breastfeed my “firstborn”, this was a heavy moment.

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(our five minues of heaven with E)

My heart was elsewhere, though, as I fretted for my unknown baby in the NICU. And then said heart started to feel very weak. I sensed the nurses beginning to rush. I wouldn’t say I heard or saw them, because I was getting fuzzy again, but I sensed things changing. It might sound weird, but my true thoughts were, “Finally. Someone knows that this isn’t right. Someone finally knows something is wrong with me.”

My husband took the baby and stood in the corner of this small cubicle as the nurses shoved him aside. They began to poke and prod me. I could understand that I should have been bleeding, and I wasn’t. I was only leaking water. While this sounds like the opposite of hemorrhaging, it is indeed hemorrhaging. I was bleeding on the inside. Two huge placentas and two huge babies detaching from my uterus so quickly can make hemorrhage and atony more likely. My uterus couldn’t adapt. Or maybe I have some sort of bleeding problem. We will never know. The blood is supposed to come out, and it didn’t. The uterus is supposed to contract, and it wouldn’t.

The surgeon rushed in. She began “uterine massage.” This phrase is perhaps the most poorly named phrase in the history of the world. She worked quickly and she worked HARD. She pressed from the top and from the inside at the same time to stop the bleeding. I don’t want to make anyone faint or anything, but I will just say that this is the most painful thing I have ever experienced in my life- AND I WAS STILL A LITTLE NUMB FROM THE SPINAL BLOCK!  Please remember that she was pressing down on an area that had just been cut open and sewn back up.  This procedure left me bruised for weeks, so much so that I couldn’t burp my babies for three weeks because I couldn’t bear the pressure of their tiny feet on my belly.

I was levitating off the table. I was screaming. All I could think of, when I was screaming with blinding pain, was poor little E, there in my husband’s arms, three feet away. I prayed that my husband could read my mind, and he did. He covered E’s ears. What does that do to a child – to hear nothing but misery as he arrives? My husband later said that what he saw was a torrent of blood. His eyes and brain were scarred and I don’t think he has ever  told me the extent of the gore that he saw. He felt completely torn in half. He wanted to hold me, and he wanted to get E the heck out of there.

It didn’t work. I endured that pain for nothing. They whisked me away. I watched my husband and baby get smaller and smaller. I didn’t know what they were going to do to me. I didn’t know if I would hold E. I didn’t know if I would lose my uterus. And, worst of all, I had never even seen G with my own eyes and didn’t know if he was okay.

They mercifully put me to sleep. I don’t remember anything for a while. I woke up two days later, in the ICU, with a tube down my throat. It was dark. I was in terrible pain. I didn’t know where my husband was. I didn’t know if I had had a hysterectomy. I didn’t know if G had survived. It was the lowest point of my life.

Everything was okay. I had not had a hysterectomy, although I had come close, and the doctors told me that I most certainly would have if I had been at a smaller hospital. G was doing very well in the NICU, and was breathing on his own. My tube would come out.

My husband tried to piece things together for me. I was under a lot of narcotics, and this time is very hazy to me. He said that I had actually been conversing with them a little bit during my ICU stay. I didn’t believe him, so he showed me the papers where I had tried to scribble my questions when I couldn’t talk while intubated. He told me that my mother and father had been there too and he had pictures to prove it. I couldn’t remember any of it. Anyone who has ever been in the hospital for an extended stay would understand. I had been sedated into some sort of twilight phase. Sometimes, he would tell me something and these weird, underwater memories would seep back to me. I would cry from pain and confusion.

He told me, several times until I could remember, what had happened to me. When they put me to sleep, they immediately did a D&C to stop the bleeding. It did not work. Then they tried one last procedure, where they inserted a “balloon” into my uterus  to stop the bleeding. They left it in for a couple of days, and slowly decreased the size of it to help my uterus contract. It had a tube to let all the blood out. The balloon works by applying pressure to the uterus from the inside. Like an internal tourniquet. It was this balloon procedure that had saved me.

On the third day, I was wheeled into the maternity ward to learn some things, like how to pee and how to walk. It was an extremely painful week. I remember sleepless nights, although they were sadly from my pain and not from my babies. I remember having the catheter for far too long for anyone’s comfort. I remember tremendous amounts of narcotics – so much that I would get the shakes and the chills and flu feelings an hour before my next dose. My husband was by my side for the whole thing. He brushed my hair and my teeth. He brought back pictures and reports from the NICU, where G was, and the nursery, where E was.

They finally wheeled me down to meet G in the NICU as soon as I could possibly sit in a wheelchair. It was a momentous occasion, but meeting him was almost more than I could bear, physically. Sitting up made me sick and weak. I couldn’t hold my neck up and I didn’t know why. I later learned it was because I had had six ports SEWN into my neck for two blood transfusions. My neck was now bandaged into an unmovable position. I tried to hold G and feed him, but I started to cry and had to be taken back. Just getting back into the bed was more than I could bear. I was hooked up to all sorts of machines and had bandages all over my body for reasons I didn’t know.

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(the first time I met G, in the NICU, 3 days old)

There were some nights when I thought I would never get out of there. There were some moments when I thought I did not have the strength to ever walk to the bathroom again. (Even my throat and neck were searing from the pain of the intubation tube. I was hoarse for weeks. ) What I did felt like it took superhuman strength and willpower. I am not the first person to be hospitalized. I am not the first person to almost die after birth. I am not the first person to recover. I know that. But when it is happening to YOU, suddenly the world is a very cruel place. I can’t even look at hospital beds on TV shows without feeling sick these days.

The worst  pain is that, when I look back on my one piddly little week in the hospital, I don’t remember much about the babies. I didn’t hold them. I didn’t nurse them, although we put them to the breast for comfort. I didn’t burp them. I certainly didn’t change them. I missed their first bath in the nursery. I missed G graduating from the NICU to the nursery. I missed out on a lot, which made me so angry after having missed out on the very beginning of R’s life as well (from the adoption). It wasn’t fair to any of them.

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My husband’s parents kept R for that entire week. They brought him to see me every day at the same time. It was the best and worst part of each day. He was so scared of me. He was so sad. He was so confused. He wouldn’t sit on the bed with me or hug me. He was not exactly an adaptable or happy kid anyway, so this major life event had thrown him. I tried so hard not to cry or show my pain when he was in the room. My husband would always take him down to the cafeteria and try to not let him overwhelm me. My mommy guilt was sky-high. I found out months later that he had thrown up in my in-laws’ Cadillac on the way to the hospital because he was so scared.

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(the first time R would go near me… please know that my kind husband heavily photoshopped this photo to make me look healthier or something)

That first day had been hard on everyone. We had four grandparents, two aunts, two cousins, and our firstborn son waiting in the waiting room for that joyous moment when my husband would come down and shout, “They’re here! Our two boys are here!” That moment never came. Little by little, they began to realize that things were going wrong and they would have to go home. Over time, I heard from each of them about what that day had been like for them, from their perspective, and it breaks my heart. One aunt described it the best. She began to sob as she said, “The whole day can be summed up in one moment: watching your mother-in-law walk out of the hospital with the balloons and flowers she had brought for you.” The joy left the hospital that day.

It was all so scary for me, but I feel the worst for my husband. He saw some major gore, had to deal with all our family’s questions, and had to go home alone that first night. He said that was the worst part: not knowing if I would make it, and having to go home anyway (there is nowhere to stay when someone is in the ICU), and realizing that all 5 of us were in different places. I was in the ICU, G was in the NICU, E  was  in the nursery, R was with grandparents, and even the dog was at the kennel! He wrote me a love letter that first night and sent it to my email…. and I got it a week later when I finally checked my email. Bless him. That was probably the most romantic, yet sad, gesture I can remember. It is too sacred to me to ever share.

I have recovered. I am probably 90% back. It was so slow- I had to learn to walk again. I came home  with a physical therapist and a walker. The whole thing was brutal. As the weight started to come off and the swelling went down, my ankles looked like cartoonishly skinny. My calves looked like a coma patient’s calves. Also, because of the blood transfusions, I almost didn’t make any milk. The doctors told me that transfusions messed with my pituitary gland, and that I might never make any milk. I surprised even the lactation consultants, when it came in later than they had ever seen – somewhere around the eleventh day. I am grateful that I can give my babies a little immunity even if I can’t make them full.

Nobody really likes us to talk about what happened. Only he and I knew how bad it really got. The days and weeks after were filled with sleeplessness, painkillers, a rotation of grandmas/aunts/cousins who never left us alone at night, meals provided by the church sisters,  two tiny babies who needed constant love, and a disgruntled 2-year-old who also needed constant love. He seemed to be dealing with his own PTSD symptoms after having his mother go into the hospital and stay there. Despite all that, my husband and I would catch a quiet moment together now and then, and he would tell me another little piece of my story from that week. He would show me the scribbled notes I had tried to write him when I couldn’t speak- and his translations beside them. He would show me another picture from the ICU. I don’t think I found the pictures of G in the NICU and his oxygen tent until months later, and I burst into tears because I still had no idea what had happened to him during those days when I was sedated. The mommy guilt was crushing. We also had practical concerns to address –  like what would happen if I were to leave him with three little ones!  We leaned on each other and cried, both from relief, and from fear. We had a lot to process together.

I sit here with G strapped to my chest in a carrier, R “fixing” his cars with his tools at my feet, while my husband does the dishes with E in a front pack. Life is good. I’m glad to be here.

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