Cerebral Palsy

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I realize that 2016 came and went and I didn’t put up a single post. 2016 began with what can only be described as a punch in the gut. Let me explain. With the boys being born very premature, we expected to have some developmental delays. Because of this we were enrolled in a program called Babies Can’t Wait. Babies or BCW is Georgia’s early intervention program that is designed to provide screening and therapy services to infants and toddlers up to 3 years old to enhance their ability to develop or catch up. BCW is a federally mandated program under the Individuals with Disabilities Education Act (IDEA).

We started with an occupational therapist we saw a few times a month shortly after they came home from the NICU. She would come to the house and work on a variety of “issues”. I would attend some of the sessions, but often times Chris and I would be at work when she would visit. It was pulling teeth to get a visit report, so I finally got very blunt and asked her what, if anything was she focused on. What were her goals, and how were the boys doing with those goals? I brought up my concerns; sensory issues for Nolan and Landon’s sometime odd walk. We also got a new nanny about that time who had worked with BCW before and she was not pleased with what she was seeing. Our new nanny was a blessing to our family. I contacted the coordinator and discussed my concerns. I asked for a new therapist. The coordinator told me the county was short on resources, and that she always got the best reviews on our therapist, and that I should give her another chance.

At the boy’s 2 year old checkup, our Pediatrician asked about how BCW was going. I shared with her that I was still frustrated, and that the therapist disregarded Landon’s turn out when he walked, his inconsistent gate, and the fact he fell randomly, more than seemed normal. It’s minor I know, but in my gut I knew something seemed off. Our Pediatrician wrote a script for Physical Therapy and said to give it to the coordinator and ask for a PT evaluation through BCW. This slowly got the ball rolling.

With the PT script in hand, I contacted the coordinator once again. She said she would see if she could find a PT with some availability and get us and evaluation, but again stressed that they were low on resources and it might take some time. About 2 months past when she finally called me back to let me know that she had found someone to at least come and do an evaluation. I would have to fill out some paperwork and they would be back in touch to schedule… 6 more weeks. Finally, a lady named Andrea comes to our house to do Landon’s evaluation. She was great! She gave me a ton of things to try at home that may help him, and this was only supposed to be an evaluation. She did recommend him for services; in fact, she recommended weekly visits, but he was approved for one visit a month which would start basically 2 months later. We were now into late summer/ early fall, but he was starting PT and just in time as he was getting worse.

Landon’s turnout was now an occasional limp. He had fallen more frequently. We weren’t sure if he was tripping over his own feet, if his hip was giving out, or if he was just clumsy. Yet, most days were good, very good. We still had our first therapist in addition to Andrea our new PT. The original therapist saw Landon on one of his worst days; he could barely walk… her thoughts on the matter, he must have slept wrong. And with that, I was done with her.

By Andrea’s second visit, she knew it was “something more”, but she wasn’t sure what that something was. It seemed like more than just coordination or strength issues. She had identified that whatever the problem, it was on the left side and causing residual effects on the right hence the inconsistency we had observed. She had a few things in mind that she wanted to rule out and said a pediatric orthopedist would be the next steps. She told me of a few locations that were affiliated with CHOA that she would recommend. We called and got an appointment as soon as possible, January 6th. This would be 3 weeks shy of they boys 3rd birthday. This process had taken me a year, but I was finally getting somewhere.

Landon and I arrived and I filled out all the paperwork. They started with a few X-rays of his hips and legs and then brought us back to wait for the doctor. Landon is typically a good patient, but in my opinion this was not one of his better days. Luckily, we didn’t have to wait long. The doctor came in and began by discussing Landon’s history. He had pulled all of his records from CHOA and fairly quickly jumped to confirming that Landon is a patient of Dr. Reisner (Pediatric Neurologist) and that he had a brain hemorrhage at birth and cyst on his brain. We discussed my understanding that the cyst was nothing more than the equivalent of a freckle and he agreed. He completed his exam in the room and asked if Landon would run up and down the hallway. Landon running at full speed was a sight. He looked very cartoonish and it was sure to bring a smile to everyone’s face. All the nurses stopped to watch and Landon loves the limelight.

Back in the room the doctor in a very nonchalant way asked if I had ever heard spasticity or had anyone be it the therapist or doctor mentioned tone issues. Those terms were not entirely new to me. The therapist has mentioned tone. I was aware that Landon had overdeveloped muscle tone, but Nolan has abdominal muscles. I just assumed when you have no body fat the muscles show through more… right? Well I was wrong.

There have been a few times now that someone’s words have actually taken my breath away. Then came that punched in the gut; I can’t possibly have heard you right moment. “How familiar are you with Cerebral Palsy”

I wasn’t familiar. I had a mental picture, but it wasn’t my child that had just run up and down the hall. So many thoughts immediately filled my head. Was he going to get worse took the top spot. Luckily, the doctor could see the wheels turning and quickly put my mind at ease.

Landon has Hemiplegia Spastic Cerebral Palsy. To break it down, CP is a neurological disorder, likely caused by the brain hemorrhage he had at birth. It is non-progressive! That was a big one for me. Hemiplegia means it only affects one side of the body. For Landon that is the left side. Spastic is the most common type of CP. It means there is a stiffness or tightening in the muscles. The muscles may fight each other by trying to tighten and relax when they should be working together making movements more difficult. He gets tired more easily. We are so very blessed that Landon’s case is extremely mild. The doctor said the best thing we can do for him is encourage him. Put him in sports, let him do everything he wants to do. This is a disability not a disease; it is chronic, but manageable. There are special therapies, he may need surgery if his tendons don’t grow at the same rate as his bones, he may need braces on his legs during growth spurts, all of those things can help increase his quality of life if they are needed. So, far they have not been.

I expected to walk into the orthopedist’s office and leave with something fixable. I have always associated those type of doctors with putting people back together once they have sprained, strained or broken themselves. The shock factor of that appointment was extremely high, but once that wore off. I was able to count my blessings. I have healthy children. Sure we may have more doctors’ appointments than most, but when I look at my boys in their preschool class, they are no different. We have been luckily that in all of 2016 Landon didn’t have a major growth spurts. I imagine when the next growth spurt happens, there will be some challenges. Until then, this diagnosis rarely affects our everyday life.

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Allergies

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Every once in a while you have that failure as a parent moment. I often will sarcastically say, I am a candidate for mom of the year. Well, after today, I might very well be a front runner…

We recently had a routine visit with our pulmonologist. With the boys being preemies and Landon’s continuing respiratory issues, he is someone we see a few times a year. He noticed Nolan’s eczema. Apparently, eczema is triad and goes hand in hand with allergies and asthma. NEC babies are also prone to food allergies. He decided we should get Nolan tested. I asked, since we were going if he would write the order for both boys. I always schedule their doctor’s appointments in twos, so why should this be any different. He looked at me, thought about it, and just when I thought he was going to say no, he agreed.

A few days later, we were off to the toddler torture chamber aka the blood lab. Getting blood drawn from the elbow of 2 two year olds is not easy, and they don’t even have stickers. Good thing my boys are just as happy with a band aid as they are with a super hero sticker.

A week later the nurse calls with Landon’s test results… He is allergic to MILK, and not just a little allergic. There is a classification rating system and he is moderate to high. She ran down the list of other things that he reacted to like dust mites and mold as well as the most common allergens he was not allergic to. Then we went back to the milk topic, I told her I can’t say I am surprised. He would get blotchy sometimes and this makes sense. I was still processing this new news and expected some sort of instruction but got nothing.

They also couldn’t locate Nolan’s results. She said we will check again on Monday to see if maybe they just needed an additional day or two.

Monday morning the same nurse called me back, Nolan’s “specimen” was missing. She had contacted the lab and they were “trouble shooting”. We would know in the 24 hours if he had to return to the torture chamber or if they located it.
Before we got off the phone she said, on Friday you said Landon got blotchy, can you elaborate? I told her around his ears and neck he would get red flushed spots. She asked if it was raised, I told her no and that it faded away fairly quickly. She said that sounded like a mild anaphylactic reaction. As I am practically tearing up thinking of how much milk I have given him over the last 2 years and 5 months she threw in there, but typically kids out grow milk allergies. Does that mean it use to be worse? So… I have caused my child to have a borderline , possibly life threatening, allergic reaction, a couple times a day, every day for years, but no worries cause he will most likely out grow it…. Mom of the year!

Oh, I can’t wait for Nolan’s results!

(repost) St. Patrick’s day- 2011

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It was a Thursday, St. Patrick’s Day, a co-workers birthday, I was getting my annual performance review or at least that is how I thought my day would go.  By lunch time, I was in agonizing pain.  My back hurt, but of course my back hurt I was 6 months pregnant.  That is normal right?
I called my boss and asked if we could do my review now, so I could leave and go to the chiropractor.  I hadn’t been to the chiropractor in years, but this would be my third trip in a week.
She felt around my back, nothing really out of line and mumbled to herself in a frustrated tone,  “I have to figure this out, if only I could x ray you. But I can’t, your pregnant, all the more reason to figure this out… pain is bad for you or baby, it will raise your blood pressure.”
As I laid face down on her table, I was unsure if she was speaking to me or to herself, but her words echoed in my head.  I went home; dug out an old home blood pressure machine I had gotten after my dad’s stroke many years before, hunted down some fresh batteries and checked my blood pressure for myself.  130/70- completely normal.  About the same as it had been when I was at the doctor the week before.  The same light hearted doctor’s appointment where I was told I was having a picture perfect pregnancy.
 

(repost) The Before Snapshot

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It has now been several years since I originally posted the blog below. In honor of Ansley’s upcoming 4th birthday, I decided to repost my story from the begining…

I recently read a book, Heart of the Matter, by Emily Giffin.  The book began “…I find myself reconstructing those final, ordinary moments. Moments that make up our lives. Moments that were blissfully taken for granted—and that likely would have been forgotten altogether but for what followed. The before snapshots.”

I am all too familiar with the before snapshots, those days where everything was right in my world.  When I truly felt my life was going absolutely perfect.  I couldn’t have planned it better.  Before my world was turned upside down.  This week is the one year anniversary of my before.  I remember every detail as if it happened yesterday.  I can tell you the weather, what I did day to day, even what I was wearing.

Having given myself a year to grieve and allow my heart to begin to heal, I felt it an appropriate time to start my blog and share my life and my story. My hope is that I can raise awareness.  Awareness for a condition called HELLP, which took the life of my daughter.  A life that had not “really” yet begun.

Failure to Thrive

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It has been a while since I have written a post, but I had a proud mom moment and this seemed just the way to share. But first, the back story…

Since the boys were preemies, it was assumed they would be developmentally delayed and may need help in other areas as well. Because of this, they were assessed and qualified for a state run program called Babies Can’t Wait. An Occupational therapist comes to our home to work with the boys on a range of skills. If our insurance pays for any of her visit, Babies Can’t Wait pays the balance and we owe nothing. If our insurance denies the claim, we owe a % based on our household income level.

The therapist was hit or miss as to if she brought any value, and if I am being honest it was more miss. She and I have not exactly seen eye to eye or maybe it is that we have different work ethics. However, more often than not it was a free service and I didn’t want to leave the program because if the boys needed speech therapy (or something like that in the future), Babies could provide those services as well.

Two months ago, after her end of month visit, she declared Nolan “Failure to Thrive”. I typically wouldn’t know this because although I have requested notes from her visits, she never provides more than a text message. However, in addition to this “diagnosis” and I will use that term loosely, she submitted to the insurance company a diagnosis of a sensory disorder that falls within the autism spectrum. In the state of Georgia, autism treatments are not covered under insurance. This resulted in a rather large packet of information being sent to us along with the medical claims that were originally submitted.

To say I was annoyed would be an understatement. As I read the packet I felt this type of thing deserved more than a text message. Then I started playing devil’s advocate in my own head; maybe she was just filing this way for a bigger pay day? Well it turns out she did me a favor.

Nolan has always liked a challenge. For example, when his brother was discharged from the NICU he was still on a feeding tube and on Oxygen. Never in my wildest dreams would I have thought he would have come home 6 days later, off the feeding tube and off of Oxygen.

Soon after the “failure to thrive” Nolan’s vocabulary took off. His favorite words were No and Cookie, but he had lots of other words too. I tried to keep up on a word count, but was quickly losing track. Mommy, Daddy, Abbey, dog, brown bear, cookie, no, thank you, please, bye bye, hi, car, truck, keys, yummy, more, juice, shoes, outside, hot, cold, upstairs, bubble bath, duck, sit, Elmo, ball, football, golf ball, What’s it, I got it….

In addition to the larger vocabulary, which had surpassed Landon’s, he was becoming more sociable. Okay maybe that is a stretch, but slightly less shy. He is more confident, he is silly and he is happy.

Then the proud mom moment happened. We had gone to Grandma and Grandpa’s house. The boys found a container of peanut butter filled pretzels. We told them they could each have one, Nolan looked at Chris and in his tiny little voice said TWO. My 21 month old apparently can count to two. Take that failure to thrive. He might be small, but he is mighty!

Oh What a Year

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Oh what a year it has been. An amazing life-changing year. Since I have not done a very good job keeping my blog updated, here is a year in review.

Feb 1, 2013- The phone rings in my hospital room, it is my doctor. After further review, she and the high risk doctors agreed that although I past my morning tests {barely}, they didn’t think I would make it through the weekend… Super Bowl weekend; a weekend many take off or call in. She wasn’t willing to risk an emergency situation with a skeleton crew. So, we welcomed Landon and Nolan into the world at 3:37 and 3:39pm. I had made it 30 weeks and 5 days.

It was right around midnight when I finally got to go to the NICU and see my boys. I was on a lot of medication, so it is bit of a blur. They were so tiny with lots of tubes and wires. I found out their official weights; Landon 3lbs and Nolan 2 lbs 8 ounces.

Feb 3rd – We finally got to see Landon’s face. The CPAP and jaundice mask had covered all but his chin.

First time seeing Landon's face.

First time seeing Landon’s face.

Feb 5th- Landon rolled over for the first time. Preemies total body weight vs. muscle allows them to do things other babies won’t do for months.
Feb 9th – After 8 long days, I finally got to hold Landon for the first time.

First time holding Landon

First time holding Landon

Feb 10th – Chris got to hold Nolan for the first time.

Chris Holding Nolan

Chris Holding Nolan

Feb 11th- I got to hold Nolan for the first time. Only one of us can hold each baby for 30 minutes to an hour, and then they have to go back into the incubator. Also, Chris held Landon for the first time.

First time I held Nolan

First time I held Nolan

Feb 12th – The first VERY SCARY day in the NICU. We had just been warned the “honeymoon phase” was ending and risk of infection was setting in. Nolan had NEC (necrotizing enterocolitis). It was a very serious infection that ‘kills’ the small intestine. It can require surgery, and in severe cases it can be fatal. They were treating him with high doses of antibiotics and suctioning everything out of his stomach. He looked Grey we knew it was not good, but the NICU felt they were ahead of the infection.

NEC

NEC

Feb 13th- Nolan was working to hard to breath, so he got put on a ventilator and also got a PIC line put in his scalp. (this was also Nolan’s first haircut since they had to shave his pretty blonde hair) Much of the day was spent debating about moving him to Children’s Hospit al of Atlanta. The doctors still felt they were ahead of it, so for now he stayed.
Feb 18th- Nolan came off of the ventilator and Landon came off of oxygen support for 5 hours.
Feb 19th – We finally started to work on the nursery. Better late than never.
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Feb 22nd- Nolan got to eat again for the first time since his infection began.
March 9th- The boys became roommates once again. They had been living in incubators in individual rooms and are now large enough and healthy enough to share a room. This was also the first time I got to hold both of my babies at the same time.

First time holding both babies at the same time.

First time holding both babies at the same time.

March 18th- The boys first tornado warning. The NICU had to move all the babies to a more secure location.
March 20th- Landon got to come home! While this was great news it was also a new challenge, Landon could not come back to the NICU to visit his brother. One baby home, one baby in the hospital. Never have I wanted to clone myself so badly.
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March 22nd- Nolan removed his own feeding tube (not the first time, but this time it stayed out).
March 23rd- Nolan was removed from Oxygen support
March 26th- To everyone’s surprise Nolan came home. We had expected him to be weeks behind his brother, and I am not going to pretend like I was not apprehensive about him coming home so soon after coming off of oxygen.
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Life at home as a family was so much easier, although I quickly realized it was almost impossible to get anywhere on time. I mostly kept the boys in a bubble not taking them out in public except for doctor appointments. And, there were plenty of doctor appointments. I had interviewed several doctors to try and find the one that was the right fit for our family. The first pediatrician we saw was not going to work out. After a lecture from him about Nolan being small and not gaining weight after leaving the NICU and him telling me I could not breastfeed he had to be on formula, I knew it was time to find someone else. He wanted to do weight checks every other day and when I refused to schedule a follow up appointment, the front desk girl read between the lines. She offered to schedule us with another doctor in the practice, the one her daughter sees. I reluctantly agreed.

Two days later we met Dr. Smiley. She walked into the room with a page of notes and the complete NICU files she had ordered. I noticed they were highlighted and notes were written on them. I immediately felt like the right decision had been made.

Mid May we held a “Home Coming party” for the boys. Until this point very few people had met them. We didn’t allow friends to come to the NICU (for the most part), so this was a great way to introduce them to everyone at once. I was surprised how many people were reluctant to hold the boys because they were still so small. Nolan was not even 6 lbs and Landon was just under 8 lbs. I understand they were little, but they were so big to me.

May 14th I was at my OB’s office following up on some post partum complications {did you know you can have a post partum hemorrhage 10 weeks after giving birth?} My doctor had been holding Nolan and feeding him while we talked. She handed him back to me and was about to leave the room when he spit up. I was very accustomed to his spit ups so while I did think they were excessive, I was not alarmed; embarrassed since it covered my doctor, the wall, and the floor, but not alarmed. My doctor on the other hand was very alarmed. She stated while she was not a pediatrician, she would have him evaluated. Spit ups should not projectile 5 feet across a room. Taking her advice, I called the pediatrician. She said she would take my OB’s word for it being abnormal and asked me to take him to Children’s Healthcare of Atlanta. She was going to call ahead and let them know we were coming… Our first trip to the hospital.
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The ER doc thought we were likely dealing with Pyloric Stenosis. It is where the sphincter at the bottom of the stomach doesn’t drain properly. If that was the diagnosis we would be looking at surgery to correct it. Lots of tests, and one long night in the ER later, we found out it was in fact just really bad reflux. I was relieved that he wouldn’t need surgery, but annoyed when the doctor told me it was more of a laundry problem than a medical problem.

May 28th Nolan’s reflux had been getting worse, every now and again he would get choked on it. About an hour after his 9 PM bottle, he began spitting up. Typically we would have put him in his crib, but this night he fell asleep in his swing down stairs and since he would still eat a midnight bottle we let him stay put. I grabbed a cloth to go clean him up and realized he was not only choking he was turning blue. I grabbed him turned him over and shoved my fingers down his throat to check his air way. Chris grabbed the bulb syringe and began to suction his throat. Moments later he got his color back, but was extremely pale. We debated a return trip to CHOA (Children’s Healthcare of Atlanta) but decided just to watch him all night instead. The next morning we called the doctor and I can’t say I was surprised when she asked us to head back to the hospital. This time he would be admitted for a life threatening event.

We spent 3 days at CHOA and during that time they must have run every test under the sun. The diagnosis…. Reflux! This time they felt it was a bit more than a laundry problem and sent us home on monitors. I had hoped we were done with wires when we left the NICU, but they did give me some peace of mind.

My days were filled with so many doctors that at times it was hard to keep them all straight.
• Pediatric Cardiologist – Nolan had a heart murmur which eventually closed on its own.
• Pediatric Brain surgeon- Both boys had a grade 1 brain hemorrhage at birth; it sounds scary but is fairly normal for preemies. During a brain scan to be sure the hemorrhage resolved they discovered Landon had a cyst on his brain. It was basically declared a freckle, nothing to lose sleep over.
• Pediatric General surgeon- In the NICU Nolan had a hernia. It was reduced and has since been a non-issue. No point operating on a non-issue.
• GI Specialist – Reflux!!!
• Pulmonologist – Nolan was diagnosed with chronic lung disease. He doesn’t use his whole lung capacity, draws hard, and has a high respiratory rate. Nolan gets monthly synergist shots that will protect him from RSV. The shots (one in each leg) are live antibodies. They also follow Landon due to being a preemie.
• Pediatric Ophthalmologist- Landon had tear ducts that never opened. He will be having a minor surgery to correct that soon. Nolan has perfect vision.
• Occupational Therapist- Due to being so preemie they both have had some expected developmental delays. The Therapist comes once a month to work with them on achieving milestones.

July 9th – Landon made it on the growth chart for weight at 13lbs and 3.5 oz and the 4th percentile. Nolan made to double digits.
July 12th – Both boys slept through the night
July 26th – Mommy’s first business trip since they were born; 4 nights away from my babies. Did I mention I was still nursing? Explaining frozen breast milk to TSA agents at the airport security was… um…interesting. (I will write a blog post about this at some point.)
Sept. 14th- Landon would sit all by himself
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Sept. 26th Nolan will not let Landon get too far ahead, so he started sitting up by himself too.
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Oct. 17th – We had a first word and it was MAMMA from Nolan!!!!
Oct. 29th – The boys first cold. It started with Landon, he gave it to Nolan, then Daddy, then Mommy, and then it circled a second time.
Early Nov. – We started introducing solid food. (And, Nolan started vomiting a lot) Also, Landon started to crawl!
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Mid to late Nov. – Nolan gets diagnosed with a wheat allergy. I am very thankful for the Gluten free trend. It gives us some options but is still hard at times to figure out what to feed them. Also, Nolan started to crawl.

Nov. 26th- Landon was not feeling well, he was fussy, sleepy and running a fever. I had strep the week before so I was sure he must have caught it. We head to the doctor only to find out he does have strep, and scarlet fever, and an ear infection complete with a ruptured ear drum. My poor baby!
Dec 1st- The boys see Santa and there were no tears!
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Dec 24th/25th- The boys first Christmas was so much fun! They liked the bows and tissue paper the best.
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Before I knew it, I was planning their first birthday. They were my super babies so they had to have a superhero party. The whole year went by so fast. They have filled our home with laughter and smiles. When they were only a few pounds, I wanted them to get bigger; now they are growing up too fast.
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Babies Firsts

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A lot happened during our 2 month stay in the NICU. There were happy moments and scary moments, times of frustration and times of rejoice.

In addition to seeing my boys for the first time and holding them for the first time. These are some of my other favorite firsts.

First time seeing Landon's face.

First time seeing Landon’s face.

First time seeing Nolan"s face.

First time seeing Nolan”s face.

First time holding hands.

First time holding hands.

First time holding both babies at the same time.

First time holding both babies at the same time.

Landon's first bath (given by mommy).

Landon’s first bath (given by mommy).

The boys first time sharing a room!

The boys first time sharing a room!

First tornado!  Moving all the babies into a secure hallway was a big ordeal.

First tornado! Moving all the babies into a secure hallway was a big ordeal.

Of course there were many other firsts that took place during the boys stay in the NICU, most of which we don’t have pictures of.

Fingers Crossed

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I just submitted a short story about Ansley and HELLP Syndrome to She Writes Press. They are putting together a book entitled Three Minus One. It will be a collection of stories, art and poetry all based around the unpleasant topic of stillbirth and neonatal death. Please keep your fingers crossed that Ansley’s Story is one of 80 submissions selected.

Ansley

NEC

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We were settling into life with babies in the NICU. Chris had taken a week off of work after the babies were born to spend time with them and also to help me. As it turns out a c-section is a bigger recovery than I had anticipated. I am not sure why I didn’t think it would be a big deal; after all it is a major surgery. Even recovering, I spent most of my time in the NICU minus the one day I was running a mild fever. If you want to torture a new mother, first tell her she can’t hold her babies, and then tell her she can’t see them for 24 hours.

First time holding Landon

First time holding Landon

Day 8 will go down as one of the best days of my life. It was the first time I was able to hold one of my babies, Landon. Eight long days had passed of only being able to look at them and reach in a small hole in the incubator and gently touch them. Eight days of hearing them cry and being unable to comfort them. On day eight we were able to start Kangaroo care.

Once a day, for one hour, Chris or I could hold a diaper clad baby against our bare chest. Kangaroo care allowed for bonding time, but also had many other benefits. For me, it helped my milk production. For the babies it helped them regulate body temperature, heart rate and respiratory rates. It allowed us to get to know one another in a way not possible with them confined to the incubator.

Chris Holding Nolan

Chris Holding Nolan

On day 9 Chris got to hold Nolan for the first time. As much as I wanted to hold him, I had to allow dad his time too. So it was day 10 that I was able to hold Nolan for the first time. There are no words to describe the feeling. The babies were so small it was intimidating for a split second, but that feeling was quickly overcome with so much joy.

First time I held Nolan

First time I held Nolan

We had developed our schedule. Chris would go to the NICU in the morning and visit with the boys, I would come around lunch time and Chris would meet me there after work. The doctors would do their rounds between 9 and 10 am. Chris would wait to head to work until after the morning updates. On day 11, I didn’t get my normal update phone call from Chris. I assumed rounds were taking longer, maybe they got a new baby in the NICU, maybe Chris got caught in conversation. It never crossed my mind that something might be wrong. I don’t know why, after all, just the weekend before we had met with the doctor and he advised that the “honeymoon phase” was ending and they boys were at high risk of infection. He advised we not have lots of visitors for awhile and take extra precautions. Even with that conversation fresh on my mind, I couldn’t fathom one of the babies getting sick. But, I heard it in Chris’ voice when I called to see how the babies were doing.

His voice was somber, he barely sounded like my husband. He told me Nolan was not doing well. He had an infection called NEC or . I had heard of this. This infection was one reason they were so firm about the boys getting breast milk rather than formula. Chris said they were running lots of tests and starting antibiotics, we would know more later in the day, but they felt they were ahead of it. I jumped online to read everything I could about the condition; It is a gastrointestinal disease….typically effecting preemies in the first 2 weeks of life…may require surgery… survival rates of 70-80%. That mean20-30% don’t survive.

I couldn’t bear the thought of losing another baby. I prayed like I have never prayed before as I drove to the hospital. As I entered the NICU there was a lot of activity all centered around Nolan. Chris was sitting in his room, trying to be present yet out of the way. The PA addressed me as soon as I arrived. She told me they felt they were still ahead of it, they had just run another blood gas and done another series of x-rays. They were monitoring him closely. They were not yet sure if he would stay in the NICU there or get transferred to Children’s. They felt he was starting to work harder than he needed to on breathing and warned us not to be surprised if they ventilated him. They wanted all his strength going towards beating the infection. The crowd had cleared out of Nolan’s room and for the first time that day I got a good look at him. He looked sick. His skin was a grayish hue that hope to never see again.

I soon learned that it was Nolan’s night nurse that first suspected something was off. She had cared for Nolan every night she had worked since he was born. She knew his coloring and his activity level; she knew all things normal to Nolan. And, she knew when things weren’t normal. I give her a lot of credit; we may not have ‘gotten ahead of the infection’ had it not been for her. I always preferred when the boys had the regular nurses. They would occasionally have on call or traveling nurses in the NICU. Some of them I liked, some of them I didn’t. Go figure today Nolan would have one of the on call nurses that I didn’t care for. I felt she would say things to Chris and I trying to invoke an emotional response. We were both in survival mode, collecting information, staying strong and focused; we could be emotional later.

Just when I had had about enough of the nurse, my favorite day nurse stopped by to check in on Nolan. She placed her hand on my back and told me she has stood in my shoes. Her daughter had NEC and her twins ended up in different hospitals. It doesn’t make things easier, but then again none of this is easy. If we end up with two babies in two different hospitals 35 miles apart, it is just another challenge that we will be able to overcome. That was the message I needed to hear.

We spent the rest of the day and ½ of the night sitting with Nolan. They had stopped feeding him, in fact they were suctioning all stomach excretions out of him. So, all we were able to do was a quick diaper change every few hours. Before we finally left for the night they made sure they had both of our phone numbers on the top of the chart. They also wanted to know where we lived and how quickly we could get back to the hospital if need be. It was a very unsettling feeling leaving the hospital.

NEC

NEC

We had planned to return first thing in the morning, but before we could get out of the house we got a call from the NICU. They had put Nolan on a ventilator overnight and also added another PIC line through his scalp. They just wanted to call and tell us because it can be shocking and a scary sight if you were not anticipating it. They also had to shave a small part of his head, but saved me his pretty blonde hair. His first hair cut.
Luckily he never got any worse, the NICU staff had caught it early and the medication worked. He got to stay in the same hospital as his brother, and he wasn’t going to require any surgery.

My heart still breaks to think about him on the ventilator. Imagine a baby trying to cry, but no sound comes out. You can tell they are in pain and you can’t do anything to comfort them. They mostly kept him sedated. Four days and one partially collapsed lung later, he was taken off the ventilator, but it would be another 6 day before he could try to eat again.

Landon’s first trick

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*I am still so far behind on my blog. I will try to get caught up soon*

A few days old

A few days old


There is something fascinating about preemies. Their muscle mass to overall body mass ratio allows preemies to do things most newborns would not do for months. Both boys were very active. They would wiggle and worm their way around the incubator. We joked any minute they would get up and walk on out. Landon liked to lie on his back, arms up above his head, legs propped up on the ‘nest’ the nurses made to try to contain him. Every 3 hours after a diaper change, temperature check and feeding, he would get repositioned. Back to sleep rules don’t apply in the NICU.

When Landon was 4 days old, Chris and I were sitting in his room. We spend most of our days moving back and forth between rooms watching our babies in their boxes aka incubators. Chris had begun to refer to them as his little turtles in a terrarium. We had not been able to hold the boys; we could simply sit and watch and wait.

Landon decided since we were watching he would put on show. He was in a prone position and we watched as he stuck his butt up in the air; think downward facing dog yoga pose. We were joking with the nurse that he really didn’t seem to want to be on his tummy when before our very eyes he rolled over. He managed to put all his weight on one leg and flipped and flopped on over. Once on his back he assumed his favorite position and fell right to sleep. I, for one, could not believe my eyes.

In the days to come, we were often told how active our babies were. This was good news. Active babies equal strong babies. They had a lot of fight in them. Their activity level helped to reassure us they were going to be okay.