one month of estelle

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Our baby girl is a month old (six weeks almost) and it is officially my due date. How is that possible? The easiest way to describe it is the quote, “The days are long but the years are short.” You don’t have to have a child to understand this saying, but boy does it really resonate once you do. I can’t imagine being pregnant for six more weeks, I was already at my maximum amount of discomfort. I also can’t imagine not having Estelle in my life for the last six weeks.

Bringing our baby home was strange and familiar, all at the same time. There were a few good things about the NICU, the feeding/sleep schedule it created for Estelle and the basic parenting skills it taught Kevin and me. While she was in the hospital she ate every three hours and slept the rest of the time (3, 6, 9 and 12 morning and night); we have maintained this schedule (for the most part) during the transition home. We were also able to pick up some basic parenting tips and tricks that most people have to learn on the fly with their baby screaming at them. We were taught how to properly change diapers, take a temperature, bottle feed, sponge bathe, quickly swaddle, and more with our real life baby, all under the watchful eye of our nurses and while she was hooked up to a million cords. I’ll be honest, every time I touched her, I felt like I was taking a test. At first, I found myself timidly doing the task, watching the nurse to see how “hot” or “cold” I was, in terms of doing it correctly. By the time we were headed home, I was confidently taking her in and out of her isolette, unhooking cords with an abandon that even shocks me a little looking back on it. Basically we got schooled in all things baby, so the basic day-to-day routine stuff wasn’t a big deal once we got home. But, if you are a parent, you know that there is so much more than the day-to-day routine stuff.

At first, I was so nervous every day. Even though I had been holding her for three weeks in the NICU, she seemed even smaller. Less durable. I would hold her with sort of nervous, unsure arms. I felt like I was playing house and just waiting for the moment Kevin would walk in the door from work so I wasn’t the only culpable adult in the house.

I always said I wouldn’t be that mom that googled EVERYTHING because we all know that the internet is a treasure trove of bad news. The worst case scenario sky is falling answer is the most likely to show up first during your search and then all the sudden your baby has some disease that I’m pretty sure they cured in 1802, but the internet says it so it must be true. Alas, here I am…mom that googles things like “is it normal for a baby to neigh like a horse” or “is there supposed to be seeds in your baby’s poop” or “is it serious or is it gas?” That last google search led me to buy something called a Happy Tummi, which is basically a belt that makes my baby smell like a yoga studio. But if it works and gets Estelle to stop crying, NAMASTE.

Health wise, we are rocking and rolling. We are completely back on breastmilk, per her pediatrician, and clear of bloody stool. She is gaining weight, probably due to the 3 ounces of milk she drinks every 3 hours. Girl is always hungry and always rooting that little tongue around for a snack. We are bottle feeding her for now, until she gets the hang of the whole breastfeeding thing. But honestly, if she doesn’t, who cares? I’ll continue to pump milk for her and feed her. Even when we thought she may have to continue on the formula, I never flinched. I know there are a lot of crazy “YOU MUST ONLY BREASTFEED YOUR BABY OR IT WON’T BE AS SMART OR AS COOL OR AS NORMAL AS MY BREASTFED BABY AND I WILL TELL YOU ALL ABOUT THE WAYS MY BABY WILL DEVELOP QUICKER THAN YOURS IF NOT” women out there. So take a breath. I think my baby being fed, however that may be, is what is best for my baby. We will figure it out and it will be fine. I also know about all the bonding benefits, but breastfeeding may not be in the cards for us, and you telling me about your bonding experience only makes me feel bad or like I’m failing to provide an experience for my baby that I have no control over. So let’s just all agree that everyone should do what works for them.

The holes in her heart are closing at an apparently surprising rate. When we went for our initial post-NICU visit to the cardiologist, the doctor was only going to check in on her eating and weight gain, but when she listened for the murmur she decided to do an ultrasound. The ultrasound showed that the hole she had been a bit concerned about was closing quickly due to her weight gain and growing tissue. HALLELUJAH, am I right? It was such an incredibly odd feeling to continuously get good news from doctors after our three weeks of continuous bad news in the NICU.

Otherwise, we are doing fine. I posted a photo on Instagram the other day and immediately got a text from a friend that said, “But how are you REALLY doing?” It reminded me of when I was pregnant and people warned me about how terrible the first few months would be. I REALLY am fine and the first month REALLY wasn’t terrible. Don’t get me wrong, I’m tired from being at home with her all day and having trouble finding moments to sneak away and pee and sometimes when Estelle’s screaming her lungs out, it’s not my favorite …but overall, I’m really happy. Things aren’t a fairytale and I get frustrated sometimes and don’t even get me started on on how perfectionist Kevin deals with things when they don’t go exactly as planned BUT we are really happy. Our baby is home. She is healthy. She is happy (mostly). She is especially adorable. We are hash tag blessed. (Franny may tell you otherwise, though. I think she is constantly trying to figure out how to ship her back.)

Cheers to another month with our baby girl.

coming home

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MAMA, WE MADE IT! After three seemingly never-ending weeks in the NICU, we were finally released. Through this journey I have realized that despite having a supportive tribe, sometimes you have to take your own hand, as if you were someone you’d seen stumble on the sidewalk, and pick yourself up. We all have an incredible capacity for growth and it’s really something to see how far you’ve come and how far you have to go.

Back up a few days…

The blood in the stool was the major concern for the doctors at this point, rightfully so. The problem was that they had no idea what was causing the blood. Over the next few days it was very sporadic, showing up in every three or four diapers. To possibly narrow down the problem, on Sunday the doctor decided to take Estelle completely off my breast milk and put her on a formula called Pregestimil. It is specifically designed for infants who have trouble absorbing fats, GI problems, or are lactose intolerant. We were told that it’s the formula given to babies after stomach surgery because of how gentle it is on their digestive system. However, it smells (and my best guess, tastes) like the baby equivalent of a bad stadium cup. One football season Mississippi State had these stadium cups that to the eye looked like your very run-of-the-mill plastic cups that you’d get at any stadium or arena. Let me just tell you, they were definitely not run-of-the-mill plastic stadium cups. Every time you tipped the cup up to take a sip of your refreshingly cold drink, which you are wont to do on an 80 degree September Mississippi day, you got the smell of…I don’t even know how to describe it. Feet? Garbage? Something much worse? I don’t know the exact right description, but they fixed the problem quickly, because no one has time for gross smells when you’re trying to eat or drink. Not even babies. Sadly for my baby, it’s smelly stadium cup for the sake of busting out of this place.

The doctor wanted to see if she was possibly allergic to my milk, while helping to ease her stomach at the same time. Kevin and I were all in on this plan, even though we both thought it wasn’t an allergy. At least the formula would give her stomach and digestive tract some comfort and hopefully start to heal whatever was being irritated. To insure she would still be gaining weight, they increased her required intake to 46 ml/3 hrs (a little over an ounce per feeding). This worried me a bit since she visibly hated the formula, but we powered through.

The most frustrating thing about this week has been how many different doctors we’ve seen (4 different doctors over 4 days). While we appreciate that Woman’s Hospital wants to have a team of doctors on hand at the NICU to make sure the babies are getting as many eyes on them as possible, it can also cause continuity issues. Every doctor makes decisions based on what he or she thinks is best, but that doesn’t mean that the doctor the next day will agree, so we may end up with a completely different plan or opinion. Also, every doctor has his or her own communication style, some sharing a lot and some sharing the bare minimum. This creates anxiety among parents who just want a set-in-stone plan of action. I finally got brave enough to voice this opinion, which I knew might make everyone at the NICU hate me, but it would also make the doctors communicate more efficiently when it came to my baby. It felt like a necessary march into battle, I couldn’t sit around and wait for everyone to get on the same page.

I found myself trying to explain the doctor situation to people and the response was usually something like, “Oh man, that sucks.” What else could they say? It did suck. But for me, it more than “sucked.” I couldn’t blame my friends and family for not getting it. It wasn’t their baby, they’re heart and soul. But it brought out a fierceness that surprised even me. I am not one who is afraid of confrontation (much to my husband’s usual discomfort) and I assuredly will never back down from defending my loved ones (even some people I don’t love that much), but this was on another level. This was an extension of my heart and my life and I realized that I would never, ever, ever stop fighting this hard for her and I could not let my spirit be destroyed by these setbacks. So it more than sucked, it was the most important thing in my life.

On Tuesday, I met with the fourth doctor of the week. He sat down with me and told me he didn’t want me to feel frustrated or out of the loop (so obviously my message was heard across the NICU loud and clear), so to ask him any questions I had and he would give me all the information he had. While I appreciated his kindness and willingness to include me in the process, this is something that should have been done from the beginning. He let me know that it could be a long time before they knew what was actually causing the blood in Estelle’s stool, which had begun to slow down. He agreed with me that it wasn’t absolutely necessary to monitor her in the NICU when we could work with her pediatrician from home. His main concern was her weight gain since she had been put on Pregestimil which is only 20 calories (almost the exact same as my breast milk).

Wait, slow down, what?

After all that we had been through trying to get home over the last few weeks, no one had mentioned that her current rate of weight gain would keep her in the NICU. We knew one of her continuous goals was to gain and maintain weight, which she had been doing. No one had mentioned that it wasn’t happening at an appropriate rate or that there was a concern. Was this really going to be another, “let’s weight 48 hours and see if she continues to gain and maintain weight the exact same way she has been for the last three weeks?” After a bit of healthy but respectful back and forth, the doctor finally said, “Hey you know what, let’s just weigh her right now and see where we’re at. We’ll make a decision after that.” This seemed so pragmatic that I was stunned.

We got her down to her diaper and weighed her, coming in at 5 lbs 3 oz (up 2 oz). The nurse thought this didn’t seem accurate (neither did I, honestly, but I hoped with all my heart it was). She changed her diaper and re-weighed her. She came in at the exact same weight. We took her diaper off and removed the swaddle blanket from the scale, so that she was laying completely naked on the plastic, to weigh her one more time. There was no way we could cheat the system at this point. She came in at 5 lbs and 3 oz. I could barely contain my joy. The doctor walked by about the time and learned the news. He let me know he’d be calling her pediatrician to make sure that she was ok monitoring everything from home and that, if so, I could expect to go home that afternoon.

I’m sorry, can you say that again? What? Today? Today.

Our pediatrician was more than fine with monitoring Estelle from home but wanted to see her a little sooner than she would normally after a NICU discharge, which was fine with us. We packed everything up, signed all our forms, said our last goodbye to the room, and walked down to discharge parking as our nurse wheeled Estelle in her NICU crib. All the nurses smiling at us and telling us congratulations. I couldn’t believe this was the last time I’d be walking down these winding halls. I felt like I’d been walking the path to her room for so long, it was like when you’re driving to work or home and you look up and you’ve arrived but you don’t even remember how you got there. It felt like we were sneaking out of prison, honestly. Or let’s calm down a bit, maybe more like teenagers sneaking out of the house when they are supposed to be grounded. This was the moment we had been dreaming of for three weeks, to pick our baby girl up and put her in the car seat (that we had thoroughly checked), getting to sit nervously next to her the whole way home as Kevin drove 20 mph on the interstate, bringing her in our house and having Franny smell her for the first time, sitting in our living room staring at her as she slept and breathed. This moment.

In this moment I was able to realize that life can be difficult, but you push back and you get through it. You fight and you cry and and you take it all in and you move forward. You do whatever you need to do for you. And in the end sometimes, you get to celebrate that you are alive and have everything you need.

It was all more than I could have imagined.

 

hurry up and wait

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I haven’t written an update this week because I’ve been in a down and frustrated headspace. My last post was pretty negative and I didn’t want to continue to put that energy out into the world, especially not when it relates to my sweet, little girl.

We were cleared Tuesday to begin her second open air crib trial and were told if all went according to plan (famous last words), she’d be discharged Thursday. In retrospect, I recognize she probably wasn’t ready for the open air crib the first time. She was still a bit inconsistent with her bottles, always leaving us a bit afraid she’d have to be gavaged (tube fed what she didn’t finish). As she started her second trial, she was completing more than her 38 ml required feeding (they always put a bit more in the bottle to account for spit up) every three hours. Her temperature held great and we had something to celebrate.

Cue the disaster. Tuesday night around midnight, the nurse found blood in her stool. The doctor did an X-ray to rule out any sort of infection immediately and it came back clear. They suspected it was either a fissure (tiny tear) or an allergy to the extra calories they were adding to my breast milk that was irritating her stomach.

Cue the heartbreak. The doctor told us she would need to monitor the situation and we would more than likely not be going home the next day. Each time her diaper was changed I did a silent prayer for nothing suspicious and then there was a bit of blood. Luckily, around midnight they stopped and all diapers the next day (Thursday) were clear. Meanwhile, Estelle passed her hearing screening, her car seat test, and checked off every single other box you have to check off to get out of there.

Cue a heart explosion. After rounds on Thursday morning, our doctor called to tell us, barring any sort of incident, we would be taking our daughter home on Friday morning. I could barely breathe, I felt shaky and light-headed, I didn’t think it was possible. I called Kevin and I could hear the joy in his voice, which inspired even more joy in my heart. We spent the rest of the day getting ready to bring little girl home. We also went out to dinner at our favorite place to celebrate and acknowledge our last night as a twosome.

Cue the anxiety. Around 9 pm, my phone rang and I immediately recognized the hospital number. It was the night doctor letting me know that Estelle had more blood in her stool. He said she was an incredibly healthy and happy baby, so he didn’t suspect she was sick, but he was going to do another X-ray and send off for some blood work to definitely rule out the infection again. Both came back better than normal. I called the night nurse every 3 hours during the night to see if there was any change or improvement – neither. We got up the next morning, which is putting it strangely considering I never felt like I went down, and anxiously headed to the hospital.

Cue the hysterics. Our doctor finally came to our room, admitting that she had been avoiding us a bit because of the news she’d have to deliver. We would not be taking Estelle home with us today. They still didn’t know what was causing the bleeding but we were going to start by eliminating the formula being added to my breastmilk to see if she was sensitive to that. If that didn’t work, she would get the gastrointestinal doctors involved. She had no timeline for when we could expect a resolution, maybe in “a couple of days.” This is when I lost it, I’m not even sure what number we’re at for those keeping count on my crazy outbursts. Doctors have been telling me “a couple of days” for weeks. So now, I have to sit in her NICU room and look at my incredibly healthy baby (bloody stool aside) and just wait until something works itself out. We were going home, we weren’t going home, maybe we were going home, we definitely aren’t going home.

Estelle has been in the NICU for 17 days. For those of you who have had NICU babies, this probably seems like a short time. For my friends who have children who were never in the NICU telling me, “oh, I’m sorry, but it will be fine,” imagine someone taking your child, your baby, away from you for 17 days…really longer, but just “a couple more days.” There’s no way to describe the feeling. We don’t all have the same experiences and the playing field isn’t always level. I think this lesson is important for me when dealing with situations in the future, what is easy for some, may be incredibly difficult for others.

However, I have decided that I can’t let this thing that’s happening in a small part of my (and Kevin and Estelle’s) life be so big that I end up closing my heart to things. To hope. To kindness. To joy. Instead of getting sidetracked by these obstacles, I’m going to try to use them as stepping stones. I’m going to let them lead me to something better and happier. I’m going to quietly (or not so quietly, you know me) refuse to settle into this sadness.

Here’s to a couple more days and an even healthier baby.

setbacks

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I don’t know how to start or even write this post without feeling sad, guilty, selfish. You see, Estelle has been doing incredibly well. She is breathing on her own, she is taking all of her bottles (slowly but completely), and she is holding her temperature. These are all things she needs to do to go home. Great, right? Kind of.

I’ve tried not to set expectations while we’ve been here, such as “I think we’ll go home next weekend” or “Maybe we’ll be out by Wednesday.” It leads to heartache and disappointment. I’ve just been going through the motions these last two weeks. Waking up every 3 hours to pump milk, getting up at 7 am, eating breakfast, coming to the hospital, holding Estelle, feeding Estelle, changing/bathing Estelle, going home to eat and sleep, and then starting all over again. It has become so routine that I honestly haven’t thought twice about it. I had a purpose and each day there was something new to tackle.

Over the last week, she has been holding her temperature extremely well in her isolette. Honestly, sometimes it feels colder in there than it does in the room. Saturday, our doctor let us know that they would be weaning Estelle to an open crib starting that night – our last step before she can come home. She has to maintain a temperature of 97.9 degrees or higher for 48 hours in an open crib, while continuing to take her bottles, and she is all ours. This would have her in our car, headed for our house, Tuesday night. We were so excited. It was really happening. We were going to bring our baby home. We had been warned that her feeding may suffer once placed in the open crib due to her using all her energy to stay warm. We had been warned that she may not hold her temperature at all. We didn’t care, we were elated.

We left her Saturday night all swaddled up and snoozing in her open crib. We woke up Sunday with renewed energy and starting putting some finishing touches on her nursery and our home. We made a plan to get our car seats checked this week and to do any last minute errands that needed to be done before she got home. It was go time.

As we pulled into the Woman’s Hospital parking lot, my phone rang. It was her doctor. She let me know that Estelle had not done well in the open crib and that in the middle of the night she had to be put back in her isolette. I was heartbroken. Again. She told me it would be another few days before we could try again. I hung up with her and for the first time since my doctor told me she would be staying in the hospital when I was in labor, I cried. Like, really cried. Ugly cried. I curled my knees into my chest and just wept. All these feelings started creeping back in, the helplessness, the uncertainty. Would we EVER bring our baby home? Kevin sat there feeling sad as well, but in that moment I couldn’t comfort him. I couldn’t even comfort myself.

We walked up to her room and sat down. I felt so out of it. The exhaustion that I had been brushing off for two weeks was hitting me suddenly, my face was swollen, and I just didn’t know how to feel. The doctor stopped by to check in on us and I asked her to explain exactly what happened. She wasn’t sure, so she had the nurse check the notes, and it looked like her temperature had gotten to 97.4 and the night nurse decided to put her back in the isolette. That was it.

There are so many things about this specific frustrating conversation that I won’t divulge. I will say that, for the most part, we have had a great experience with the doctors and nurses in the NICU, so I don’t want to be negative. However, there have been instances of missed communication that have left me with some anxiety. While this is frustrating, I have to remember that we are all human here and we all make human mistakes. It’s just that when you trust someone to make all the exact right decisions for your baby to be healthy and to come home, you want less human error and more patience than normal.

Regardless, here we are. She can’t start the open air trial again until Tuesday and the 48 hour clock will start again. This is assuming her doctor will clear her to begin the open air trial on Tuesday. I want to be excited, but I can’t because I don’t want to open my heart to more sadness. Right now, I just feel like we’ll never leave this place and everyone around us keeps moving on with their lives and I’m sitting here with my baby in the NICU.

Also, I look around at other babies here and realize that there are some families who truly have no end in sight and that’s when the guilt creeps back in. I don’t want to dismiss my feelings, because they are real, but so are the ones of the other mothers here who have early and sick babies.

I wish I could end this post on a positive note, but today I’m not feeling so positive. Today I’m just trying to make it through. The good news is that Estelle is healthy and seems pretty happy bundled up in the isolette sleeping, so I have that to be thankful for that. In fact, she’s so cozy that they had to take her clothes off because she was too warm (which is frustrating because she was placed back in it for being too cold). This is a strange and winding road. Hopefully we will get to the end of it sooner than later.

a letter to my daughter

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I can tell we are in the final stretch of our NICU stay. Not to say we are going home tomorrow, but I can feel that we are closing in on the final steps we need to climb to take our little girl home. As we prepare to bring her into our world, I created this video as a letter to Estelle. FYI it plays WAY better on a phone, because it’s all in portrait, not landscape, because I’m obviously a video expert. Whoops.

To sum it up: We love you you, Estelle.

a week in review

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It’s been a hectic week. It’s strange how time can move so slowly and so quickly simultaneously. I don’t know how it’s already Friday but at the same time it feels like Estelle has been in he NICU for a month and not just 10 days.

She was officially taken off her nasal cannula on Monday and the respiratory team stopped checking on her Tuesday. She is breathing all on her own, which is fantastic. If you ask Kevin he will tell you she’s been breathing on her own almost the entire time. She hated having the tubes in her nose, so she was constantly ripping them out (same with her IV, which is why they finally decided they were over trying to give her an IV). Once he realized she was breathing fine without the tubes, he would find ways to ignore the fact that they had “fallen out,” so mean mommy had to be the rule follower and make sure they were put back in her nose. I don’t like the looks of this parenting dynamic, who knew I’d be the bad cop?

They are done with the Bilirubin tests, which is how they test for Jaundice. She has started to trend downward on their levels chart and so they will no longer be testing her daily.

Her weight is up from 4 lbs 5 oz to 4 lbs 9 oz, which I know doesn’t seem like a lot, but to us it is. She was born 4 lbs 10 oz and usually babies lose weight after birth, but when every ounce counts, it’s hard to watch the fluctuating weight. They think that at around 5 lbs, she’ll be able to regulate her temperature and eat consistently, both things we need to happen before she can come home. At the beginning of the week they began adding calories to my milk to help out a bit.

We learned she has a few holes in her heart. While this is scary, we know it’s common in pre-term babies and think there is a high likelihood that they will close on their own, without having to undergo surgery. We won’t know much more for a few months. You can read more about that here.

Once she was taken off oxygen, she was able to start bottle feeding. This is a big step, as one of the things she has to be able to do before they’ll discharge her is take 90% of 8 bottles in a row through Infant Driven Feeding. Basically, rather than timed and volume based feedings, the nurses respond to signs of hunger by Estelle to initiate and stop feeding. She started at 40 ml/3 hours, but wasn’t finishing the bottles. The doctor took her down to 35 ml and then back up again to 38 ml/3 hours, hoping that maybe with less food she would be more hungry at the feeding times. This has been daunting. Some days she takes a little bit, some days she takes a lot, some times she takes almost none and they have to gavage the remaining milk (a way to feed my breastmilk directly into her through a tube in her nose). Over the night and this morning she took 5 full bottles (1000 PRAISE HAND EMOJIS), which is a huge improvement and something to celebrate. I’ll write more about this later.

That about covers our week but I wanted to end with something that is really important to me. When I was little I watched Mr. Rogers’ Neighborhood every day. I loved him and still do. Recently a documentary came out about him called “Won’t You Be My Neighbor,” and Kevin and I went to see it (I highly recommend this documentary). It showed that during his speaking engagements, Mr. Rogers often asked his audience to take one full minute to think about someone who has really helped them in life. It’s a simple practice, but one that has helped me get through this last week.

I’ve been trying to ask myself, “who helped me today?” and “who did I help today?” The answer to the first question is simple. All of you helped me this week by reading this blog, sending me messages with similar stories or just kind words, dropping food off at my house, sending flowers, calling, texting, caring. Every single one of you have helped me this week and I can’t thank you enough.

listen to the music

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Every wonder why people turn to music when they’re experiencing emotional turmoil? Personally, music can lift my mood and make me feel better. You know what I mean, when you’re in your car and that perfect song comes on right before you get home, so you take the block to hear the whole thing?

This is because it encourages the production of serotonin, a happiness hormone. You can also get a hit of serotonin by exercising, but ya girl ain’t got time for that right now. Calming tunes can also give you a shot of dopamine, which can be responsible for making you feel good. AND another hormone released through music is norepinephrine (similar to adrenaline) which creates euphoria. Basically, long story short, music can make you feel REAL, REAL good.

I’ve loved music my whole life. I love a beautiful guitar intro, or a unexpected beat, and I especially love to listen to lyrics. There are some song intros or specific lyrics that can actually bring me to tears, no exaggeration. I can remember being little and loving to flip through all of my dad’s CDs, memorizing the covers and the bands. Around high school, most of those CDs found their way to my bedroom or car and still probably live in my home now somewhere – sorry, Daddy. I’d replace them but I’m not sure they sell CDs anymore. I remember driving to school every day, feeling so cool listening to my (his) Nirvana MTV Unplugged in New York album or the Siamese Dream Smashing Pumpkins CD. And I am always the designated DJ on a road trip. There’s nothing worse than having to drive several hours with someone who “doesn’t care what you listen to.”

While I was pregnant, I tried to listen to all sorts of music because they always tell you that your baby can hear what’s going on outside of you. My nightmare would be for my child to not have good taste in music, but I’ll love her just the same if she loves some weird her generation version of Justin Beiber. Although, now that I think about it…maybe she hates my music and that’s why she came early?

While I’ve been in the hospital, I’ve been creating a list of songs that make me feel hopeful or nostalgic. Some of them, like The Villagers singing The Wonder of You, make me think of Estelle. While others just make me happy and hopeful, like Everywhere by Fleetwood Mac. Music is also interesting in that it changes throughout your life. When I was in high school and I heard Coldplay sing Fix You, all it made me think about was Caleb Nichols having a heart attack and drowning in a pool in Orange County (if this reference is lost on you, might I suggest The OC seasons 1-3, 4 optional). Now, I listen to it and it makes me want to cry thinking of not just fixing Estelle literally, but my heart metaphorically.

I thought some of you may be bored and interested in a new playlist to listen to at work or in your car. Enjoy! (For those of you surprised not to find any rap music on this playlist, I’m not sure how much the fine people at Woman’s Hospital would feel about me blaring Wu Tang Clan from Estelle’s room.)

the heart of the matter

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We had a bit of scary news this week, which let’s be honest…most news is scary news these days. I got a call on Monday morning that they heard a slight heart murmur while doing Estelle’s morning check up, which is just an unusual sound heard between her heartbeats. They told us that sometimes it takes a few days for the fluid to clear out of a pre-term baby’s lungs, so they don’t catch it at first and they were calling in a Cardiologist.

The cardiologist came in and did an ultrasound which looked insane because the equipment they were using was almost bigger than her little body. I sat while the doctor and the technician watched the screen and made “hmmm” and “mmhmm” noises, having absolutely no idea what I was looking at. It seemed like a never-ending 10 minutes of unspoken communication between them.

Once they were satisfied with and sure of what they’d seen, the cardiologist rolled her equipment over to me, lowered her computer and sat on the floor next to my chair. I know this doesn’t seem like a big deal, but having her come down to my level to explain everything was an incredibly comforting gesture.

The not so bad news? She has a PFO, patent foramen ovale. The foramen ovale is a normal opening between the upper two chambers of an unborn baby’s heart. Don’t worry if that (or any of this) sounds like a foreign language. Same. Basically, the foramen ovale usually closes soon after the baby’s birth, except hers didn’t, so we call that a patent foramen ovale. She also has a Atrial Septal Defect (ASD), which is an abnormal opening in the dividing wall between the upper filling chambers of the heart. Both of these holes are so small she couldn’t even measure them. She feels 100% certain that they will close on their own. Great, hopefully.

The more concerning news? She has a small (2.5 mm) VSD (ventricular septal defect), which is a hole in the wall that separates the heart’s lower pumping chambers. The hole provides an opening for blood to cross the wall, from the left side to the right side of the heart. An increase in blood flow across the hole to the lungs can cause the lungs to become congested. Because the heart and lungs have to work harder, a baby with a VSD will become short of breath, especially while trying to feed (which is the most exercise little girl is doing right now). This could lead to not so great feeding and eventually to poor weight gain and growth, both of which we need to go well for her to come home. The doctor told us she feels like the chances of the hole closing on its own are pretty high and she will continue to monitor it after Estelle comes home through her pediatric appointments. The hole will take months to close, so we won’t know anything for a while. If the hole does not begin to close itself or she begins to experience complications due to the hole being near a valve, she will have to undergo surgery to repair it.

Whew. Talk about a punch to the gut.

We found out the news on Monday and I was absolutely devastated. We have had such good days with weight gain, feeding, breathing…I had been lulled into a false sense of security and suddenly it was shattered.

The doctor could not have been more comforting. As I said, she got low next to me, walked me through every single term, and even drew a diagram for me to have as a reference. She also kept saying she felt really good about the chances for everything to close on its own. This was the most comforting thing, as I’ve learned quickly that doctors don’t like to hand out percentages or certainties. This makes sense, every case and every patient is different, so why offer someone a guarantee when there is absolutely no idea of knowing what will happen? The fact that she gave me 100% on the first two problems and a “I feel certain” on the third problem gave me some of my security back.

I kept it together for almost the entire report, until she got to the surgery portion. I kept thinking, “don’t cry, don’t cry…she’ll be gone in 10 minutes and then you can cry.” Suddenly tears were streaming down my face and there was no stopping them. She gave me a moment and let me know that the worst case was the surgery, but it was such a safe surgery and that children go on to live absolutely normal lives, “She can be a dancer…or a football player.” A woman after my own heart.

Now that I’m a few days removed from getting the news, I feel a lot more hopeful. I’ve done more research, talked to several friends in the medical field, and everything I’ve read and everyone I’ve talked to has told me this isn’t uncommon in pre-term babies. The most frustrating part is that if she was a full-term baby they probably never would have caught this before it closed on its own and I could have lived in my ignorant baby bliss. Alas, that’s not how our story goes.

For now, we are monitoring her in the NICU for the common signs: feeding, breathing, etc. The doctor won’t check her again until a few weeks post-discharge. Until then, we wait and we hope. Hope and wait.

sweet emotions

.Reading time 11 minutes.

Did you know approximately 70-80% of all new mothers experience some negative feelings or mood swings after the birth of their child. What causes this? Well, you know besides all the hormones in your body shifting, lack of sleep, change in routine, the general emotions that come with having a baby growing inside of you for what seems like a million months and then having it finally live outside of you? It’s shocking we all deal with it, right? In all seriousness, it’s more shocking that we don’t talk about it.

Aside from all the statistics, speaking from a personal level, the NICU takes it to a whole different level. I’d like to clarify, that I don’t intend to speak for anyone else’s experience with post-child birth or having a baby in the NICU. This is strictly how I’m feeling one week after having my baby.

The question I get almost every day, more than once a day is: How are you doing? It’s like everyone is waiting on pins and needles for me to explode with emotion. The easiest way to answer that question is, I don’t know how I’m doing. Physically, I feel great. I had an easy and quick delivery. My recovery is almost a non-existent process because I’m not really dealing with much pain or discomfort. Mentally, it’s a little more complicated.

When you’re pregnant, you create all these expectations for what your time in the hospital will be like. You’ll go into labor, you’ll do the hard stuff, your baby will pop out (or be taken out surgically in the case of a c-section), you’ll have that moment where you hold your baby for the first time, maybe you’ll do the “golden hour” where you and your partner and your baby stare at each other for a while after delivery, they’ll wheel you to your room, your baby will be right next to you, people will visit, you’ll pose for photos with with your baby in a matching robe and swaddle, you’ll post it on Instagram. When it’s time for discharge, they’ll wheel you to your car, where your officially checked carseat awaits, you’ll put your baby in, and you’ll head off into the sunset with your new little family.

My experience was that I went into labor, I did the hard stuff, my baby popped out, I got to hold her for two minutes, I was wheeled to my room, my baby was wheeled to a separate room, I didn’t see her again for 5 hours, I slept in my room, she slept in her room, I would sneak out in the middle of the night to her room and stare at her. Two days later, I packed my bag, got dressed, and was discharged. I walked to my car with Kevin like we were checking out of a hotel and drove home without my baby.

I try not to be resentful about this, because it’s no one else’s fault that they have a very standard child birth experience. But it definitely puts it into perspective how much people take that “normal” experience for granted.

One thing I have learned is that our strength is not stagnant, it’s not motionless. It moves and shifts with us. Wherever you land, is where your strength starts over. I just happened to land at home without my newborn baby. How could I be strong? I decided I could give in to the wave of emotions making me want to cry myself to sleep every night (which I have a few times) or I could tackle it one day at a time, one problem at a time. This, for the most part, has worked. When your focus is on one problem at a time, getting her off of oxygen support, producing and pumping milk to provide the NICU so she could eat, making appointments with Occupation Therapist to figure out how to get her to take a bottle quicker, you don’t have as much time to think about “how you are.” You just are.

Outwardly, I’m going through all the motions. I’m doing the things I need to do for my baby and my family. I’m checking in on everyone, sending photos to my family, calling my husband, who is now back at work, with updates. Inwardly, I’m just trying to survive. Sometimes you have to experience feelings without giving up your control. I’ve maintained that control by living in a little bubble with little to no communication with the outside world. (Except here, hi!) Currently, my daily life looks like this: wake up, try to remember to eat, do that mom thing where you frantically pack everything you think you need for the hospital in a bag, rush out of the house, and then forget half the things you need and try not to cry about it.

My nails look horrific, my late grandmother would roll over in her grave if she could see how chipped they are, but I can’t stomach going to my nail salon. I know that as soon as I walk in the owner will ask me about not looking pregnant anymore and then I’ll have to explain what happened. Then I’ll walk to the back to get a pedicure and see someone I know and they’ll know and I’ll know they know and they’ll look at me with pity and we’ll do this weird smile wave thing. And honestly, I just can’t handle it.

Kevin went to Trader Joe’s the other night and someone he didn’t know ran up to him to give him flowers. It was a girl who worked there, who had taken some of my classes at TreadBR, and she just wanted him to know she was thinking of us. I’m so glad it was him and not me, because I would have broken down right in the middle of the pre-made salad section (which I might have done anyways once I realized I was in the salad section).

We went to eat dinner for my birthday on Saturday and as soon as we sat down, someone we knew walked over to say hello and congratulate us. He was incredibly kind but it still felt weird being there which seemed to imply, “Oh yeah, we left the NICU for a while to drink wine and hang out without our new baby who can’t quite breathe on her own.” Then, I felt nothing but guilt.

Every night I sleep in my own warm bed and not the pull out couch in her NICU room, I feel guilt. Every time I think about going into labor early, I feel guilt. Every time I feel irritated that I have to wake up every 3 hours to pump my breast milk, I feel guilt. I’m so exhausted, but my baby isn’t even here. Guilt.

It’s like this, I want to cry but I have things to do.

The easiest way to describe how I’m feeling is this: I feel like a mama without a baby. I miss her all the time. She lived in me for 8 months, kicking and wiggling and building a home. I got used to her rhythm, her movements, her schedule. I find myself sometimes putting my hand on my belly, waiting to feel her kick. I miss her and even though she’s only nine miles away from me when I’m at home, she feels forever away. The distance combined with the uncertainty of her coming home, makes it seem like she’s forever away.

But like I said, strength isn’t stagnant. It meets you where you need it. Right now I need it to get me through this next few weeks. In the grand scheme of things, this will only be a tiny blip in Estelle’s (and my) life. We are strong enough for this. 2019 has delivered some harsh realities and tough mental challenges. But today, I’m trying to just get a glimpse of the way out. I’m going to soften into the path of least resistance and follow what feels good.

And what feels good right now is slipping my sweet girl into my shirt and letting her little chest rise and fall with mine. That’s how I’m doing.

fun medical stuff

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Aside from the emotional rollercoaster we’ve been riding, we’ve been learning a lot of fun medical stuff.

Once Estelle was taken to the NICU, Kevin and I, along with our family, were able to see her in her private NICU room at Woman’s Hospital. She was immediately put in an isolette (or incubator), which provides controlled temperature, humidity, and oxygen levels and has armholes through which she can be reached with minimum disturbance to the controlled environment. She can be taken in and out easily, but maintaining her temperature is really important. We are pretty much able to hold her any time we want; they also allow us to do normal parent things like bathe her and change her diaper.

So what’s the deal with all those tubes? This is a question and concern we get a lot. The short of it is that they are necessary to keep her healthy. Every wire and tube you see are working hard to help her breathe, eat, check her temperature, and heart rate. Yes, we know they aren’t cute. Yes, we know they look uncomfortable. No, they are not hurting her. No, there is absolutely nothing we can do about it. Because of all these things, we let the doctors do their job and add or take away tubes as needed without complaint.

To start with, she was put on a CPAP, which is a type of respiratory support. In Estelle’s case, the CPAP was delivered through a set of nasal prongs. The CPAP was being used to deliver higher concentrations of oxygen to baby girl, since she was having trouble maintaining good oxygen levels in her blood. Without boring you with the numbers, I’ll tell you that she was on this for 3 days and then switched over to a nasal cannula yesterday. This is good news.

What is a nasal cannula? A nasal cannula is a thin, plastic tube that delivers oxygen directly into the nose through two small prongs and is used when only a small amount of oxygen is required for baby.  It looks very similar in her nose, but is a much smaller and quieter oxygen situation and the hope is that if she maintains good saturation levels with the nasal cannula for 48 hours, she will be taken off any sort of oxygen support.

Baby girl is definitely hungry. For the first day, they just had her on an IV. Luckily, this gave my body time to start producing colostrum and milk. What the heck is colostrum? It is a nutrient-rich fluid produced immediately after giving birth (before your milk comes in) and is loaded with immune, growth, and tissue repair factors. It can help baby build a strong immune system, creates a tough coating on your baby’s stomach and intestines to keep germs from causing illness, and helps to prevent low blood sugar in newborns. So basically liquid gold. I am able to use a breast pump and provide this to the Woman’s Hospital NICU team to feed Estelle. Otherwise, they would have used a mix of formula, which would have worked fine, as well. Using a feeding tube (which is very, very tiny) they started by feeding her 10 ml every three hours and now we are up to 30 ml every three hours. Before each feeding they check the contents of her stomach to make sure she is digesting each feeding, with the goal being at least 50%. She has knocked this out of the park. Girl’s trying to eat. Eventually, once she is off all oxygen sources, they will begin bottle feeding her and then we will transfer to breast feeding.

How big does she need to be? There is no real answer for that BUT they think at around 5 lbs she’ll be able to maintain her feeding and temperature. She started at 4 lbs 10 oz, and lost weight as babies do after birth, but is now at a whopping 4 lbs 7 oz.

The last major medical thing we are watching for is her temperature. She has to be able to maintain her temperature in an open air crib for at least 48 hours.

Another extra thing that Estelle is tested for each day is her gas levels. High levels might mean there’s a problem with the liver. In newborns, it can take some time for the liver to start working properly. High levels can make skin and eyes look yellow, called jaundice. If her levels come back at a certain level, she is put under a light for the day. This is a day-to-day test. She was under the light for 2 days but came off of it yesterday.

Feel like a baby doctor yet? I know that was a lot of information, but that’s where we’re at and we’re still trying to understand most of it. For all my doctor friends, if I butchered any of this – I’M SORRY! I have a Communication degree, I don’t science good but I’m doing my best. All of these things are happening simultaneously and also building off of each other.

We are scared but also hopeful every day that we go in and our little girl is still fighting her way home. Now that we’ve covered the fun technical things, we’ll dive into the emotion of it all next. I know you are all waiting with baited breath, but truly, thank you from the bottom of my heart for keeping us in your thoughts.