A NICU Story (part 9)

 

From here on out our NICU stay would be less like a roller coaster and more like a train ride, a little bumpy but for the most part pleasant.  For the next 6 weeks Evie was in recovery. We weren’t able to pick her up from under her arms, she was still getting a couple doses of methadone to combat the addiction and we couldn’t bathe her for the a couple of weeks.

Well waiting patiently for the green light to get the heck of dodge Evie had a couple of first. At 7 months she got her first tooth and at 7 ½ months she got to play on the floor. This may not seem like a big deal but imagine being restricted to a bed for 225 days, for us it was very exciting.

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First time on the ground

During this time, we began to sprint Everly on the cannula a couple hours a day giving her a break from her CPAP mask. This was my favorite part of the day because I could kiss her face. Day by day the sprints would get longer and the oxygen would get lowered. In order for us to go home Everly had to be able to maintain her oxygen levels using no more than 1 liter of oxygen while on the cannula.

As our stay in the NICU began to wind down we started the frustrating process of getting medical equipment for home. Our insurance wanted us to go with a specific vendor but the vendor would not lend us their equipment unless we had a home nurse and I did not want a home nurse. This was something I would get asked about frequently by the doctors and nurses some would encourage me to get one but I knew that we could do it on our own. I guess that’s the perks of being in the NICU so long you become comfortable and confident with not only taking care of your child but also knowing the equipment.

Almost 4 weeks after the surgery on February 22nd I was visiting with Everly when I was pulled aside and asked if I had time for a meeting, I of course said “Yes.” In the meeting we talked about Evie’s recovery and how I was feeling about taking care of her since I’d be the one staying home with her. I told them the truth, I felt completely fine. I don’t know if it’s because we had 8 months to prepare but I wasn’t nervous at all I knew without a doubt that we could do it. It was decided than that Evie would go home on March 6th.

I walked out of the room with the biggest cheeser on my face. I immediately called Aaron and gave him the news I could hear him smiling through the phone. Let the countdown begin!

I think back to all we went through and the time we spent in the NICU. All in all we spent Halloween, Thanksgiving, Christmas, New year’s, Valentine’s day, summer, fall and winter there. Everly was put under anesthesia 5 times. She had 2 bronchoscopy’s, G-tube surgery, Pneumonia, Cardiac Catheter procedure and Open-Heart Surgery. Aaron and I also spent our first anniversary there. It was a lot to ask of a new marriage, but we made sure to put each other first even before Everly. We went in strong and came out stronger.

The day before we were getting out we got a huge surprise from friends, family and people we didn’t even know that donated diapers, wipes, clothes, money, formula, gift cards and even alcohol. We were given so much that to this day we still have diapers for Everly and we only just bought wipes for the first time, as for the alcohol let’s just say, mama drank that.

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All the donations

The night before we were getting out we stayed at a hotel it was both exciting and nerve racking. Of course, we were worried that something was going to go wrong and prevent her from leaving but I had a good feeling this time. We fell asleep like two kids waiting for Christmas morning.

And then it was time! We began packing our bags. As we were gathering our things there was a sense of urgency as if we need to get out as soon as possible before they find a reason to keep her. We put Everly in her car seat, started walking down the hallway, took off our gowns for the last time and walked out of the NICU. We did it! We got out! We put Everly in the car and the three of us drove home.

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The last picture we took in the NICU
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On our way home
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The first thing we did when we got home!

A couple of weeks later a nurse that I had grown to love reached out to me. We chatted a bit when she revealed to me that when she first saw Everly her 20+ years’ experience led her to believe that she would not survive and she was right.

Everly doesn’t survive she thrives!

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The most recent picture of Evie, loving/torturing her brother
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Helping with her feed

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Walking for the first time

Stay tuned for more blogging about what it’s been like since we’ve been home.

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A NICU Story (part 8)

Evie spent the next couple of days on life support. The doctors had decided to let Everly’s body rest and recover a bit before they attempted to remove her off of the vent again.

Aaron and I sat by her bedside all day only leaving to eat. Although Evie was unconscious most of the time I wanted to be sure to be there when she opened her eyes. As Sunday night approached Aaron and I started to become increasingly anxious. Monday was the day they were going to attempt to remove her off the ventilator. I knew we needed to get her off of it but I was afraid that she would go into cardiac arrest again. I wondered how many times a heart can go through something like that.

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Still on the vent

 

Unfortunately, time doesn’t stand still for anybody not even for the cutest babies. Monday morning had arrived and I was a wreck. I can’t even explain what it’s like waking up knowing that your baby might die today it was incomprehensible. I don’t even remember anything that happened that morning up to the point of removing the vent. As the doctors, nurses and respiratory therapist gathered round Aaron and I left. I walked out of the PICU and into the hallway. I felt like there was a million pounds on my chest. My eyes started to well up. At that very moment only a hundred feet away our daughter could be dying. After only ten minutes the PICU doors opened and a nurse walked out, she smiled and that’s when I knew, everything went well.

Everly was put back on the CPAP a familiar and welcoming sight. After 4 days they started to wean her off her pain medications but she quickly began exhibiting signs of addiction: restlessness, sweating and general irritability. They decided to give her methadone multiple times a day to help with her addiction.

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Back on the CPAP

On the 5th day post-surgery things started to look a little brighter. They slowly started removing wires and tubes from Evie and she started acting a little bit more herself. One thing the PICU had that the NICU didn’t was a TV. One day I was watching Friends and I noticed her watching it too. Turns out she’s like most kids she loves watching TV. I put it on Sprout and they were playing a show called Ruff-Ruff, Tweet and Dave we had never heard of it before but something about it caught Evie’s attention and to this day it’s her favorite show.

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First time watching Ruff-Ruff, Tweet and Dave

 

One week after the surgery I got a call at home. Whenever the hospitals phone number popped up on my phone I instantly held my breath, I never knew what kind of news was on the other side. It was her doctor she called to let us know that Everly was doing so well that they moved her back into the NICU. It was my favorite kind of news, the good kind!

We had know idea but we were finally on the other side of the storm. Soon our baby would feel the sun for the very first time!

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One week post-surgery

 

A NICU Story (part 6)

After the pneumonia it was expected that Everly would make a full recovery but to everyone’s surprise she didn’t. For some reason she could no longer maintain her oxygen without extra support. Before Everly got sick she was on a cannula during the day and at night she was on the CPAP but after her illness the cannula could no longer support her and she had to be on the CPAP all day. The doctors weren’t sure why she was requiring so much extra support. They decided to do x-rays and ultrasounds of her lungs and heart. What they had found along with the holes in her heart was that her heart was enlarged and she had a pulmonary stenosis. The Pulmonary Stenosis meant that there wasn’t sufficient blood flow to her pulmonary artery to maintain normal oxygen saturations. The pneumonia put too much stress on her heart and as a result she would never fully recover without medical intervention.

The plan was to do a procedure called cardiac catheterization which is a catheter that is inserted into her heart through her groin. If all went well they would be able to close the two holes in her heart and insert a balloon into her artery to widen it. Everly once again was put under and rolled away. It didn’t take long for news to come back. The holes were too big to be closed with a catheter and they could not dilate her artery using the balloon. Everly would need open heart surgery.

However, the holidays were upon us which meant unless it was an emergency the surgery would not be done until after Christmas. This entire time Aaron and I had not been on a date. Between the 700.00 gas bill, 400.00 food bill and the 100.00 a month parking bill there wasn’t much time or money left over to eat out. In fact Aaron had to get 2nd job just to keep our heads above water but this Christmas we decided to splurge. We bought Evie her first Christmas presents, got a hotel and went on our first date in 5 ½ months. I never thought I’d spend Christmas Eve at a Chevy’s but as long as I was with my husband I didn’t care. The next day we went to the hospital to spend Christmas Day with Everly. I was determined to make it feel special. We put her in a first christmas outfit and helped her open presents. There may not have been a Christmas tree or tamales or music but I was with my family and in that sense it was perfect.

The holidays were over and the day had come. Aaron and I had stayed at a hotel to make sure we would get there before they took her into surgery. What Everly didn’t know was that she had a lot of family that had come to the hospital to support her. The moment had come. Aaron and I walked with her as far as they would let us. We watched them take her through the doors and then we watched the doors shut. I started to cry because I knew what they were going to do to her. They first were going to cut open her chest, purposely break her breast bone to expose her heart which was about the size of a walnut, put her on a heart lung bypass machine which means her heart was no longer beating, they will close the two holes, put a stent into her artery, remove her off the bypass machine, hope her heart beats again, close her breast bone using wires that will stay in her forever and then close her up. All while hoping nothing goes wrong.

It does.

A NICU Story (part 5)

Have you ever seen the light at the end of the tunnel and then watched it fade away?

We arrived at the hospital, both very excited as it was the day before we were meant to go home. It was going to be a busy day. We had to meet with the companies that would be supplying us with Evie’s equipment and meet with the doctor to discuss the discharge orders. As we walk up to Evie’s crib the nurse who was not familiar with Everly asked us immediately if it was normal for her to be breathing so fast. At first, we said yes but after looking at her we realized something was not right.

The doctors were called over and after assessing her they decided to x-ray her lungs. It came back positive for pneumonia. My heart dropped. We were so close to going home and then just like that our hearts were broken. Which at this point seemed to be a pattern. I started to cry out of frustration for my baby she just could not catch a break.

It would take them three excruciating hours to get blood from her tiny little veins. Until they could identify the type of pneumonia she had they would not give her any medication. What I did not anticipate is that she would go down hill so fast. All she wanted to do was sleep but they wouldn’t let her. They kept poking and prodding only to be interrupted by x-rays, nurses checking vitals and doctors observing her. Finally, they were able to get blood it would almost be too late. By this time Everly’s heart rate was in the 220’s and she had to be put on the BiPap Machine.

It was determined that the pneumonia was from aspirating on her food. Up to this point Everly was fed via a pump but our insurance company didn’t think she needed it and that we could give her food manually. However, Everly couldn’t tolerate foods manually because she was used to drops of food at a time, the insurance company did not care about this (insert angry face). So, every time she ate she would throw up and every time she threw up she would breathe some formula it into her lungs. Thus, pneumonia.

Through all this she still needed to be suctioned because she couldn’t swallow and now she had even more mucus. Aaron and I went to suction her and when we took off her mask our eyes immediately met. Everly was dying, she was gray and her eyes were fixed towards the back of her head. We called her nurse over which thankfully was one of her primary nurses. She convinced the doctor that it was not normal for Everly to hold a stare like that. They decided to give her a medication for seizures.

After 15 hours and easily one of the longest days of our lives her heart rate began to drop, her oxygen was able to be maintained by the BiPap Machine and her color had started to return to normal. We were out of the woods, well these woods anyway.

On our way home a dark but very real thought crossed my mind, if no one meets the baby did they baby ever exist?

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nurses trying to get blood.

A NICU Story (part 4)

Day in and day out it would seem like there was no change one day melting into the other. I decided that I would go see Everly Sunday through Friday and Aaron would visit every other day. For the time being this would be our new normal. Id drive 140 miles a day. Most days thankfully were uneventful. Although I had no idea how long Evie would be in the NICU I knew that I needed to take care of myself first because Evie and Aaron needed the best of me. For me this meant sleeping in, enjoying my coffee every morning and most importantly putting my marriage first.

I remember for the 14th day in a row I was getting ready to go see Evie and Aaron said he wished we could go out on a date.  Although it was easily one of the hardest decisions to make to not to go see Evie I knew I had to do it. While talking to my sister-n-law I told her it was the first time I was not going to see Evie and she said something that several people would tell me “don’t feel guilty for not going to see Evie” but that’s what people don’t understand you don’t feel guilty because you didn’t go see them you feel guilty because you don’t want to see anybody else. The give and a take of a relationship became a one-way street. For 8 months, a relationship with me was a dead end road.

Within the first couple weeks Evie got three primary nurses they would be with her for the entirety of her stay. Anyone who has ever had a baby in the NICU knows the importance of these nurses they’re the only other people that know your baby almost as well as you. Evie came to love her nurses she would smile just at the sight of them. For us knowing that Everly’s primary nurses were there allowed us to relax just a little.

In the NICU you’re allowed four visitors and the four people you choose would be the only four people that would get to meet Everly. This rule was in place to keep as many germs out as possible. On one hand, it was completely understandable, germs are bad but on the other only four people will meet Everly. I can still remember rocking on my glider in her nursery, 8 months pregnant dreaming of her home coming. We would all celebrate her; people would come visit and talk about how cute she was but that would never happen. For the first 8 months of her life Evie would meet Four people, her grandparents.

Leaving Everly for the night was never easy I would walk out of that hospital without my baby for 246 nights and not one night did it ever feel normal. As the days rolled on we started talking about Everly going home and suddenly we found ourselves packing up. We were so excited! You couldn’t wipe the smile off our faces! Unfortunately, when you’re in a storm this big what feels like the end is actually just the eye.

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A NICU Story (part 2)

After finding out that Everly had CHARGE Syndrome I did what any person would do. I googled the crap out of “What is CHARGE Syndrome?” Essentially, it’s having specific medical anomalies. Each letter of CHARGE stands for something and you can be diagnosed either clinically or genetically. In Everly’s case it was genetic and she has letters C,H,A and E. She has a Coloboma in her left eye, she was born with Heart defects, Atresia choanae and Ear abnormalities and she also has the malacia, which would keep her on oxygen until she was 16 months.

The list of diagnosis were daunting and the statistic were scary with a only 70% surviving to five years old and the highest death rates are in the first year of life. I had no idea if she would survive. Burdened now by these statistic I’d keep them to myself. I didn’t want to worrying Aaron so instead I smiled trying to convince everyone including myself that everything was going to be OK but In the moments when I thought no one was looking my face said it all.

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A photo Aaron captured when i thought no one was looking.

I wish i could say that this was the end of her diagnosis but I’d be dreaming.

At one month of age Evie had her first surgery. After discussing it with her doctors we decide it would be best if Evie had a procedure to have a G-Tube put in as she can’t swallow. This would allow us to give her food directly into the stomach rather than a tube that went through her mouth and down her throat. You would think that deciding whether or not to have a procedure done on your baby would be a hard decision but there was always one question that played through my mind like a broken record and still does today “What is her quality of life?” this question would be the driving force behind any decisions that we made.

The day before her procedure someone from palliative care came to speak to me. They asked me if I would fill out a Physician Orders for Life-Sustaining Treatment (POLST). Let me tell you something, shit does not get more real than when you’re discussing whether or not you want doctors to save your baby.  Obviously, I want them to save our baby.

The day of the surgery I walked with Evie as far as they’d let me go and then I watched them take her away. Since Aaron had to work my mom came with me. We passed the time by going to the cafeteria and grabbing some coffee.  The procedure didn’t take long just a couple of hours. They called me on my phone to let me know that she was back in the NICU. I rushed up to her. When I saw her I could see an immediate change. She was so bright eyed. I knew then that we had a made the right decision. For the first time in her life she could close her mouth completely; no longer was there a tube coming out of it.

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Right after G-Tube surgery

It was such a relief to see how well she was doing and to be able to call Aaron and tell him that his baby girl came through with flying colors.

Like many days in the NICU this was a good day… little did we know we had 216 more to go.