Sunday, January 13, 2013

What It Is Like To Have An Early Baby

Jack is doing about the same. Not too much new. He is still eating via tube into the intestine. They haven't tried it going into his stomach again yet. He is still having periods of apnea and bradycardia. They are going to try to feed him into the stomach some time this week.

Tuesday January 8th was Julianna's 5th birthday. She came early as well and spent 18 days in the NICU. I was able to give blood on her birthday. That was a big deal to me. I needed single donor platelets after her birth but they weren't available. Jack has gotten a lot of blood transfusions and I did too after my surgery. So giving it back is a way of celebrating our lives for me.

I came across this essay about what it is like to have an early baby. It was on a blog called its a preemie thing.

NOTE: Other than grammatical errors, this post was originally written three years ago, the week Aeva came home from 92 days in the NICU. An update is included at the end.
My husband had posted all of my Facebook notes that were written from the NICU as everyone requested updates on Aeva’s progress. A popular question, with which I still have a hard time dealing with, was, “how are you doing?” I don’t think I’ve ever honestly answered that question to any one other than Anthony.

There is no way to describe what it feels like to have an early baby. No pregnant woman ever contemplates the “what if” of preterm labor and birth, or complications. No one tells you of them. Sitting in the exam room of my OBGYN’s office, of what I thought was a normal appointment, and hearing him as k “how far along is she,” after I failed my urine test was a less than stellar feeling. He came in put me on bed rest, effective immediately following further testing at the neighboring hospital. There was no questioning this, I knew it was bad. When the tests came back so terribly that he sent me to Vanderbilt University down in Nashville because our hospital was ill equipped to handle 30 week babies, it was worse. Getting steroid shots in hopes to aid lung maturity means business, and that there’s a baby coming soon.

I was determined not to have a baby that night.
I held out four days…2 steroid shots…3 ultrasounds…many blood tests…and 4 days in a bed…until the anastesiologist walked in and said “just in case, is now, now.” My husband had gone home to do somethings, and luckily was on his way back, because I was being prepped for surgery. I had a lovely dose of toxemia, meaning my kidney and liver were rejecting the pregnancy, producing enzymes which in turn made my heart work harder than needed. Now called pre-eclampsia, the condition effects 1 in 8 pregnancies. Pre-eclampsia is characterized by high maternal blood pressure, water retention, and protein in the urine. A complication of this is called HELLP syndrome (hemolysis, elevated liver enzymes, and low platelet count), makes this all so very worse. I got both, and with rapid onset.

It was a baby or me situation, and for it to be the both of us, baby needed to be delivered NOW. And NOW means NOW in the labor and delivery wing. I rolled over and I don’t think I’ve ever cried so hard before in my life.There was no way that this baby in my tummy could come now. It just wasn’t time.

There’s the feeling of fear. Fearful that she won’t be okay…or that something is wrong with not just me, but with her. Fearful that even a c-section birth would be too stressful on her. Fearful that though the neonatologist said that babies born at that gestational age (30 weeks) have a 97% survival rate…that she wouldn’t survive. They were worried about her because she was small…would be be too small to survive? Would she be underdeveloped? There’s the fear that your husband would hate you for not carrying his baby to term. Fearful that he’d think you did something wrong to make this happen. Fearful that he thinks it’s your fault. Fearful he’d just hate you.

Luckily, baby girl dumbfounded the doctors in her extreme healthy despite her very low birth weight. And luckily, Anthony didn’t find it to be anyone’s fault.

Anthony and I had a few choices of names picked…and it was this moment that I knew which one I wanted it to be. I wanted Aeva because it was strong name. AEVA RENDINA. So strong. Strong was what she was going to have to be right then when she was going to come out, and through the next few weeks through the rollercoaster of the NICU. Jaqueline came from my Aunt Jackie who was full of piss and vinegar. Also strong. Aunt Jackie was a strong, strong woman. This baby was going to need to be strong and have an attitude. Aeva Jaqueline Rendina. AJR. Her Daddy’s initials. A strong man. This baby was going to need all the strength she could get.

I had an amazing anastesiologist who calmed me down…at least enough that he could give me the epidural…which in itself is a weird feeling. Not having sensation from bra-line down, but feeling the tugging of a baby being taken (not delivered, but taken) from your body is….well…hurtful. You literally feel empty inside when it comes out. You’ve come to know and love this little person growing inside of you as a part of you…and when it’s taken from you…you’re literally empty. What seemed like forever later, the baby made a sound, which at that time sounded like a kitten rather than a baby…the best sound in the whole entire universe. This early baby made a sound.
Not wanting her to be alone, I sent her dad out of the operating room to be with her…I’m a big girl and can handle being alone…this baby was taken from its warm home and thrown into the terrifying world of a hospital of all places, without first being held and loved by her mommy or daddy…she needed her Daddy as close as possible…
I didn’t get to see the baby for 24 hours….I was on anti-seizure medication again and didnt get to see her until the next night.

The night Naomi met her daughter for the first time!
If there is anything in the world that just makes your heart sink…your stomach churn…your eyes water…and your mind go’s seeing that baby that you’ve felt moving in your womb…out into the world so little…so helpless…so peaceful…with tubes and iv lines…
I didn’t see her when she had the breathing tube in (thankfully)..she only had it for 4 hours…
There’s that feeling when you first know that you can finally go see her that’s bittersweet…overjoyed that you can FINALLY see your little baby…and that feeling like you don’t want to see her because it’s your fault…There’s nothing to say to anyone when you have to look through the plexi-glass of an incubator to see your baby…or ask permission of a NURSE to touch YOUR baby…or the feeling when you first hold them…the feeling of relief that she’s okay and she’s made it this far…but the feeling that it’s your fault…the only thing to say to her at this point is, “Hi, I’m your mommy…I’m sorry.”

I’m sorry is all I could really say for a long time. I’m sorry. I’m sorry. I’m sorry. I’m sorry that you’re here so early. I’m sorry that I got sick. I’m sorry that if it came to “you or I” that they picked both of us…they should have picked you. I’m sorry I couldn’t give you the home you needed to grow in inside of me. I’m sorry you have to finish maturing in a plexiglass cage…I’m just sorry.
This is when we finalized her name, and that her birth certificate and incubator tag got a name. She looked like an Aeva. She looked strong. She didn’t look like what you would think a preemie would. She didn’t look sick. She looked strong. She was Aeva Jaqueline Rendina.

Part of it was adjusting to blood pressure medication. but when I’d see her for the first week or so, I’d get really hot, and faint, and would need to sit. The overwhelming feeling of guilt and pain (physically from the c-section, emotionally from this “journey”) just hurt. We couldn’t hold her and tell her everything was going to be okay. Honestly, we didn’t know yet if everything WAS going to be okay.

The only thing we could do was to pull up a chair and sit. Sit there and stare at her. Be there for moral support. Talk to each other, talk to to nurses…talk to her through her incubator (also called an isolette) so that she learned who we were from or voices.

When a preemie is first born, and for some time after, the only way to touch him/her is to put your hand on the soles of their feet, and to cup their head. Stroking a preemie like you would a “normal” (the PC term for this is to call them a term baby)baby is too much stimulation, and isn’t optimal for them. Aeva learned affection, love, and security through this.

The sleepless nights thinking of how she is doing…the eagerness to be next to her even though we couldn’t touch her…there are no words for it. For a while, she went through what we (NICU veterans) call a “spell.” A spell is a bradycardia (decrease in heartbeat) and apnea (forgetting to breathe) episode. Essentially, when she turns blue. At first they are the most traumatic thing post c-section. The first time you see your baby turn blue because they are so small and early that they haven’t learned to self regulate….is…well…heart wrenching. The good news is, is that the bigger they get, the less often they happen, and the more used to them you become. It gets to the point that spells don’t phase you, and how to stimulate her to breathe again is second nature. The beeps and alarms of the NICU become normal, and you can tell what each one means by it differing tone. The higher pitched and faster it is, the worse the reason.

The guilt of thinking that it was my fault she was born early never went away. It got better, but it didn’t go away. Consciously, I know it wasn’t my fault. But as a mother, there is nothing else to say or think than it was MY fault. It was MY responsibility to give her the right enviornment to grow in…MY responsibility to be healthy and keep her warm and comfortable inside so that she’d grow. But somewhere, the universe thought differently. Only 2-8% of women experiece toxemia (preeclampsia) in their pregnancies, and even fewer of that experience HELLP, a complication of the complication. I got both. I got it bad. Somewhere I pissed off the pregnancy goddess and she got her revenge.

There’s the anger feeling…being angry that some women don’t even WANT kids, and have ACCIDENTAL pregnancies, and carry their babies to term. How come I wanted nothing more than to have a baby and experience birth, and I had to get the short end of the stick. I took care of myself. Perfectly. I excersised. I ate well. I took my vitamins. I still got the short end of the stick. I only had gained 10lbs at 20weeks pregnant. At 30 weeks, 1 day, I had gained 37lbs. In the 48 hours I lost 20 of it. Water weight. I never looked pregnant. I looked like I was getting chubby. Never pregnant. Never really had a belly. I could still see my toes. I never really felt her move. She didn’t move often. (Turns out she was breech and I only felt her back) The first time I felt her have the hiccups was the day that I was admitted to the hospital. The doctor was happy to see her “practicing” breathing en utero…it meant she had a good survival chance.

There’s denial…the daily thought that “today’s not the day. I can make it another one. I’m NOT having a baby today.” But honestly, it’s just denying the fact that it literally is a 15 minute by 15 minute wait…when my blood pressure was taken it was just the matter of how high was it. Was it high, but low enough to let me relax and try to hold out…or was it high and was just high. The anxiety of needing to know what my blood pressure was probably never helped. There’s the denial post-”birth.” Not wanting pictures to be taken of her. Not wanting too see the ones that were taken. Not wanting to see that the fact that she was soooo little was immortalized for all of posterity to see. Why would anyone WANT to remember her so little…

There are those moments that the only thing to do is to curl up and cry. Just cry. Not even say anything. Just let it all out. I had to stay calm to try to keep my blood pressure down that there were so so so so many tears built up. They came out over the following weeks.
Then there’s that moment when all that stops. It’s the moment that being a mommy kicks in. It’s the moment that those selfish feelings are put aside…and the only feeling left, is the feeling that says to do whatever you have to do to help her. When you watch a baby in a pure survival mode it’s all you can do…it’s the feeling that if she’s doing what she has to do to survive…then the only thing I can do is put aside my thoughts and do what I need to do to help her to make the struggle just a little easier on her.

In those early days, it meant talking. Letting her hear our voices. It meant eating well so that the breastmilk was nutritious. It meant pumping as much milk as possible because breastmilk was her key to success. It meant taking each day as it came…just like she did…And the hardest one was…it meant not holding her. Holding her stimulated her. It made her burn precious calories that she needed to grow…to regulate her own temperature…to make blood, fat and everything else she needed. It meant out of 1440 minutes in a day…we held her 20. She learned to love us by us doing her care…taking her temperature…changing her diaper..taking care of her umbilical cord…

There is the rollercoaster ride of the NICU…sometimes everything goes well…and then all of a sudden, there’s a step backwards. Indeed, it was a rollercoaster.

But then there’s the triumphant feeling of leaving. Of putting her in the car seat and rushing the nurse through the discharge information…and then walking out that door. For so long we’d watched people take babies out of the hospital while we were bringing stuff in…today was the day that we weren’t taking anything IN. We walked OUT. Healthy. Together. Triumphant over the horrifying NICU. We beat it. We made it through it. Most importantly, AEVA made it. SHE fought each and every day to make it. We just were there for moral support.

I’ll never accept the fact that she was born early. I’ll never believe you when you tell me it wasn’t my fault. I’ll never be able to get frustrated with her for things that aren’t her fault, and that are just from prematurity. It’s hard to not get frustrated when she throws up all the time..or when she doesn’t do something “right.” The only thought that goes through my mind when frustration starts to…is that its not her fault. She’s doing everything the best that she knows how to. If she was a term baby, she’d know how to better. It’s not her fault that she has to work just a little harder to do some things. And it’s definately not her fault she was born early.

I don’t like pregnant women right now. I’m jealous. I HATE hearing pregnant women complain about how fat they are, or how scared of labor they are…how how it hurts when the baby pushes into their ribs. Shut up. Some of us never got any of that. Some of us never got to be “pregnant.” (The big ‘ol fat kind where you can’t see your toes or when you need help standing up from a chair.” Some of us WISH we couldnt lose tthe baby weight…it means that we were pregnant. So those of you who are, or know people who are pregnant, make sure you know that pregnancy is a sacred time. It’s beautiful.

There’s that moment when you get to come home and prepare for homecoming…to nest..finally…that’s like nothing else. It’s what having a baby SHOULD feel like. Exciting. Happy. Anxiety. Wanting everything to be perfect. There’re those moment when you’re so tired from not sleeping that all you want to do is sleep…but all you CAN do it stare at her…wondering how could such a little girl have gone through so much already. Anthony and I didn’t survive the NICU. We aren’t veterans. Aeva is. SHE did that. Aeva made it through the NICU.

There’s that feeling of running your finger over your c-section scar. The scar that reminds you daily of what happened. There’s no forgetting this. There’s no forgetting that Aeva was born early under an emergency circumstance. There’s a 5 inch scar reminding me every. single. day. Everyday. Every time I shower, I see it. I see the place that Aeva was taken from…the place they opened up to see her little tushy staring up at them…Being butt first was her little way of telling the doctors to “kiss my ass.” :)There’s the tingly sensation around the scar from nerves regrowing…its the feeling of being empty…of knowing she was taken from there…

Then there’s relief. Relief knowing that the little girl laying on my chest is healthy. She’s HEALTHY. She defied all odds and is healthy. She’s not delayed in any way; she’s met all milestones thusfar. She’s a strong little girl. There is no strength in the world that surpasses that of child who has survived the NICU. Watch out world, Aeva’s here.

UPDATE: Aeva turned 3 two weeks ago. She is full of personality, highly intelligent (and I’m not biased on that), and shows little signs of being premature. She’s very, very, small for her age. She’s 21lbs, and 34 inches tall. She has overcome hip dysplasia, feeding problems, texture and oral aversions, delayed speech, and mild developmental delay. At 3, she tests 100% on target, if not AHEAD for her age! She has hypothyroidism and growth issues, but undetermined if related to prematurity. She talks, has personality, and is very strong willed, vivacious, little girl. She never stops moving! She is in gymnastics, preschool, and LOVES to play! Aeva has an amazing imagination, and loves caring for babies. Medical care for her is preventative, and for the most part, she can say she kicked prematurity in the butt! She is THE cutest little girl ever, and I am STILL so VERY proud of her. She is my love, my life, my everything. Most importantly, she is my HERO.

No comments:

Post a Comment