Healing Touch

Have you ever heard the phrase ‘healing touch’? It suggests that physical touch or physical contact can heal. Hailey’s life taught me the truth behind this common phrase.

In the first days of Hailey’s life, she underwent surgery,  she had a contraption put on her stomach, she was poked and prodded everywhere with needles as doctors and nurses tried to find good veins for putting in tubes and IVs and drew blood and so on,  she had a blood transfusion, she bruised, she swelled, she would have experienced pain had she not been under the affects of morphine. Obviously, no one wants this kind of life for their child. (But I will say, this life, is better than no life at all… and as you will see in Hailey’s case, this can be turned around with a little healing touch, and faith).

Flailing Frustrations, Like Mother, Like Daughter

In a facebook note I wrote while we were with Hailey in the hospital, I recorded a bunch of things about her to help others get to know her. One of the things I shared was how she had punched her stuffed giraffe in the nose and had punched me in the nose. Did you know little babies could punch? Well they can. 🙂

There was a time when I wasn’t sure if Hailey had the ability to move her legs or arms. It took awhile for me to see her make little movements, which was probably because of her physical condition as well as her little body being under the affects of morphine I’m sure. Eventually I saw movements, first her hands, then her arms, and sometimes her legs. It was a slow, gradual process. But eventually my fear that she couldn’t move her arms and legs was provided wrong. And boy were there times that she would move!

Like any baby, Hailey had her moments of fussiness – sometimes I was unsure what she was fussy from – was it gas or was it pain from her surgery? But whatever the cause, she had moments of extreme alertness in which she expressed her extreme frustration.

A memory of Hailey’s fight

Today I was supposed to go to my doctor on post to get a referral for us to go see a Genetics Counselor. Unfortunately, that was canceled due to the ‘blizzard’ like conditions here in Southern Alabama. We were told that Hailey’s disorder, Full Trisomy 18, was not a result of something being ‘wrong’ with Josh or I, that it was purely random, and that we will be able to have healthy babies in the future if we’d like to try again. Regardless, we were told that we need to see a Genetics Counselor to discuss Hailey’s Trisomy and make sure that everything is okay like they say.

So today I thought I’d blog a little more about our experience with Hailey in the NICU and Trisomy 18…

One of the health problems that most Trisomy 18 babies have is apnea – which basically means that they ‘forget’ to breathe. Since Hailey had full Trisomy 18, every cell of her body contained faulty data which made nearly everything difficult for her body to accomplish, made it impossible for her to grow and develop, etc. Hailey suffered from apnea while she was in the NICU. She didn’t ‘forget’ to breathe, rather her body and the messages from her brain to tell her body to breathe did not always function correctly. I had a better understanding of what apnea was when I saw it firsthand.

Time is a funny thing…

One week ago today Josh and I awoke to find that our baby girl had passed away… The thing we had been dreading had happened. So today is a hard day…

Time is a funny thing. During the 9 months I was pregnant with Hailey, time seemed to crawl at a snail’s pace. I couldn’t wait to be done being pregnant and hold my little girl in my arms. Hailey’s birth couldn’t come soon enough.

And then all of a sudden, the 9 months were over and Hailey was here. Instead of seeming like it took forever for her to get here – it seemed like time went by too quickly. During the first week of Hailey’s life when we spent it in the NICU and a private room at the hospital and we knew she was fighting against time – because it was only a matter of time before she’d be gone – time was so precious and fragile. I was desperate to hold on to every second.

Then Hailey became better and better, and it seemed like maybe we’d be one of the few lucky parents of a Trisomy 18 baby who would get to spend months – maybe even a year with her. I loved the good days with Hailey – when she seemed like a “normal” baby – but I hated those days at the same time. It seemed like a false hope those days, and I had to remind myself she could pass at any moment even if it seemed she was doing well.

When we were first learning of Hailey’s condition, we asked the doctors what would be the cause of her death. They told us it would be either apnea (when she forgets to breathe) or the result of an infection – it would be too much for her little body to handle. We asked how long she’d have with us if she got an infection, and the doctors told us that she would likely pass within 24 hrs.

Well, on January 5, 2010, we noticed something slightly amiss when we were tube feeding her. We called the pediatrician and brought Hailey in. The doctor informed us that Hailey was fine, but she did have a fever of 100.2. The fever would just have to run its course. To this day I can’t believe I didn’t put all the pieces together so to speak. I thought that Hailey would be fine – she was doing so good – not even acting different or sick or anything – she was actually the most successful with feeding from the bottle that day! I really thought the fever would be gone within a day…

But in retro spec I ask myself how did I not know? The fever was likely the result of some type of infection that she had – the doctor told us that. The other doctors told us that if she got an infection that she would have less than 24 hrs. How did I not know it was her time? Well I didn’t… and it was. She passed away the next morning.

The entire time we had Hailey I knew she could go at any minute – and yet I treated those final hours of Hailey’s life like she was a “normal” healthy baby who could fight off an infection…

When the realization that Hailey was gone set in that day, it was like the last 35 days were gone in the blink of an eye. She was gone already? I tried to treasure each day and each moment and make it last and last and stretch time out… but in the end, I couldn’t hold on to time or slow it down like I wanted.

And now, time is a funny thing. Some days this week time has once again crawled to a snail’s pace, and I just want to speed it up and get through with the day. But then today, 1 week since she passed, time seems to have passed too quickly. Can it already be a week? It feels like she passed away just yesterday – not a week ago.

Time really does move on – whether you’re ready for it or not…Oh how I’ve longed to just pause time. I think of how many times I had Hailey in my arms, cuddling her, holding her, breathing her in, memorizing her face, and just being desperate to pause time and live in that moment forever… but I couldn’t.

It seems like time speeds up when you don’t want it to and then it’s gone before you know it. And when you want time to speed up and pass quickly, it seems like it inches along…

So anyway, today, on the 1 week anniversary of Hailey going to Heaven, I will remember the time we spent with her – and thank God for the pictures and video we have of her as we tried to capture each moment, each memory and freeze time…

Hailey’s Story

If you are someone who just came across my blog or just started following Hailey, this post contains most of her story in one place – if you want more information you can read the facebook notes I posted  – and if you already have read the facebook notes and some other posts this next section might be repetitive for you as I’ve written this using a combination of my facebook notes and blog posts as a basis.

My husband and I were 24 years old and had been married for a year and half when we started trying, or not trying not to have a baby (January 2009). At the end of March a home pregnancy test confirmed that we were pregnant. At this time my husband, Josh, was living in Georgia for some training with the Army, and I was back at our home in Illinois so that I could finish out the school year teaching. The long distance relationship meant that I had to share the news that we were pregnant with my husband during a video chat online and that I had to go to my doctor’s appointments alone.

When I was 12 weeks pregnant, I had a Nuchal Translucency Screening done. At the time I had a very minimal understanding of screenings. I knew that the results did not lead to a diagnosis, but they could give you an idea if your baby had a health issue. This particular screening identified the baby’s risk of having a chromosomal disorder, the most common being Trisomy 21 or Down Syndrome.

My attitude about that first screening was “Sure, why not?” I thought the screening was very routine and that I had nothing to worry about. After all, Josh and I were both young and healthy, and the risk factor for our pregnancy came out to be zero meaning it was considered very low risk. In retro spec I wish I had never agreed to that first screening because I had no idea was I was getting  myself into, and I certainly didn’t understand how unreliable the screenings can be.

The first part of the screening consisted of an ultrasound in which the ultrasound technician measured the amount of fluid in the back of the baby’s neck (nuchal). At the time, I didn’t know what they were looking for. I noticed the technician taking a lot of time and numerous measurements, but I really didn’t think much of it.

Afterwards, I was surprised to hear my doctor tell me that the ultrasound came back positive. The doctor explained that the ultrasound showed more fluid than normal in the back of our baby’s head (normal readings are around 3mm, and our baby’s was 6mm). Alone, this did not mean that our baby had a genetic disorder, but it did mean that the chances she had one were greater than normal.

To further determine the chance of our baby having a genetic disorder the doctor had a blood test done, which is the second part of the screening. The blood test was completed the same day the ultrasound was done, but I had to wait a few days for the results to come back.

The doctor explained that if the blood test results came back normal, then our baby was going to be fine. If the blood test came back positive, then that combined with the ultrasound would suggest that our baby had a genetic disorder. She also explained that even if the entire screening was positive, there was really no way of knowing if our baby had a genetic disorder unless I had an amniocentesis, which runs the risk of a spontaneous abortion.

Right after she explained all of this to me and before I even had the blood test, my doctor asked me what I would do if both the ultrasound and blood work suggested that the baby had a genetic disorder. She asked, “Would you want to terminate the pregnancy?” I remember thinking to myself, “Did she really just ask me if I would ‘terminate’ my pregnancy or have an abortion?” I couldn’t believe it. She did. That was the last conversation I expected having at what I thought was a routine doctor’s visit.

Because of my beliefs and faith, I told my doctor that no matter what happened I would keep my baby. I also told her that I would not have an amniocentesis because of the risks associated with it.

After having my blood drawn, I left the office terrified and worried. I had to call my husband and tell him that our baby might have a genetic disorder like Down Syndrome—that was one of the hardest phone calls I’ve ever made. Days passed without hearing from the doctor’s office.

A week later I called to ask about the results of my blood test. The nurse on the line said that if I hadn’t received a call that meant that the results came back normal and there was nothing to worry about.  Even so, I wanted her to check on the results to make sure this was the case, and the nurse confirmed that my results came back normal. Therefore, since the ultrasound was positive and the blood test was negative, the entire screening was negative. I was told that the chances of our baby having a genetic disorder were very low, and she should be a healthy baby. I felt so relieved, and afterwards many people shared with me that those screenings could be very inaccurate – many women have screenings that are positive, and they go on to give birth to healthy babies.

So the rest of the pregnancy continued as normal and everything looked good. I felt confident that we would have a healthy baby especially because we ourselves were so young and healthy, but in the back of my mind was always the thought that there could be something wrong with Hailey.

There were no complications other than my high blood pressure the week Hailey was born, which is something that happens to many pregnant women. On December 1, 2009, when I was 39 weeks and a 3 days along, my water broke after being induced for 2 days. Hailey arrived at 6:04pm. On my birth plan I had made it clear I wanted Hailey put on my chest, skin to skin for bonding purposes, immediately after delivery, even before the umbilical cord was cut, which Josh was to do. After I delivered Hailey I waited to hear what all parents want to hear, the beautiful sound of a crying baby – and I got it. However, I knew something was wrong when she wasn’t being placed on my chest, and I knew they were cutting her umbilical cord. I kept asking Josh and whoever else what was going on and what was wrong with Hailey. I didn’t get any answers. Hailey was then rushed off to the NICU and I never even saw her.

Eventually I learned that it appeared as though Hailey’s intestines were on the outside of her body and physically there were some things wrong with her. They told me that she had to be flown to another hospital that had a level 3 NICU because the hospital I was at didn’t have the capabilities of taking care of a baby like Hailey. (If you want to know more about this you can read one of my facebook posts).

Fortunately, two of our friends were able to drive Josh to meet Hailey at the hospital that night. Also, thankfully, I was able to go to the NICU to see Hailey while waiting for the jet to arrive that was going to transport her. She had countless tubes attached to her and a huge bandage over her stomach. She clearly did not look like a ‘normal’ or ‘healthy’ baby. But I didn’t see ugliness. I didn’t see imperfection. I didn’t see any of that. Instead I saw beauty. She was simply beautiful. When the rescue team arrived, they let me hold her before taking her. I wasn’t sure if I was ever going to have that moment with her, and I am forever thankful for that opportunity.

The next day I was discharged from the hospital and made the drive to join Josh and Hailey at the Children’s Hospital. When I arrived Hailey was in the NICU recovering from the surgery she had the night before (the doctors placed her intestines back inside of her). Josh and I had many briefings by many doctors while we were there. To keep a complicated story simple, Hailey had many health issues, the most prevalent being apnea, which meant she would stop breathing. Many of the issues and several of her physical traits suggested that she might have a genetic disorder.

To determine a diagnosis for Hailey, the doctors ran a FISH (Fluorescence In Situ Hybridization) test which would tell them if Hailey had a genetic disorder and what it was. By the time the results came back a few days had passed. Right before Hailey was to undergo a second surgery, the doctors told us that results had come back showing that Hailey had full Trisomy 18.

We really didn’t know anything about Trisomy 18, so the doctors explained that it was a lethal genetic disorder—lethal meaning that she was going to die. It was untreatable and incurable. They explained that Hailey had three copies of the 18^th chromosome instead of the normal two in every single cell of her body. This prevented her body from functioning and developing correctly. The doctors didn’t know how much time she’d have with us. They explained that it could be hours, days, weeks, maybe months at best.

After having some time to ourselves to process the information, the nurses and doctors met with us again to discuss the next course of action for Hailey. We made the decision that the quality of Hailey’s life was more important than the quantity of days she lived. We wanted to make the most of her time here on Earth and didn’t want her attached to tubes and machines for who knows how long as that was not the kind of life we wanted her to live. Therefore, we made the difficult decision to not go through with the surgery and to stop all medical treatments and interventions.

A few hours later we were moved to a private room, and we were able to have all of our family members with us as well. We were able to hold her, give her kisses, dress her in her clothes, and I was able to work on feeding her bottles of my breast milk. She had an oxygen tube to help her breathe if she needed it, and she had an IV for fluids and nutrients until she was able to take enough of the bottle on her own. Also, she was off of morphine unless we felt like she needed it for pain. We made sure she was held every minute, and she literally was held in someone’s arms for almost a week straight.

A few days passed, and Hailey reached the many milestones she needed to so that we could take her home: she was bottle feeding well, off of her IV, having healthy diapers, and hadn’t had any more breathing attacks. After being in the hospital with Hailey for eight days, we were finally able to bring her home.

When we learned that Hailey had a lethal genetic disorder, our hearts broke, and we were in shock. Everything moved so quickly. The future for Hailey looked pretty dark. We learned more and more about Trisomy 18 by doing our own research online. We learned that Hailey’s birth was a miracle since most babies with Trisomy 18 don’t make to term or don’t survive birth. We also learned that most babies with Trisomy 18 who survive birth don’t make it out of a NICU or the hospital. The fact that Hailey was able to do so well and come home with us was a huge blessing from God.

We knew the entire time we had Hailey that we could lose her at any minute. We cherished every minute we had with her and did everything we could to make sure she was comfortable and happy. Even if she lived a short life, we wanted to make sure it was a full life and the best one she could have.

When we were home with Hailey we had many visitors, and we made many memories with her – car rides in her car seat, a walk outside in her stroller, Birthday parties, baths, reading books to her, singing to her, dancing with her, showing her Christmas lights and the Christmas tree, etc. I made sure she smelled the smell of flowers and felt different textures. I ran her hands along my face, across our dog’s fur, across her stuffed giraffe. Her daddy wiped her chocolate birthday cake on her fingers and face. We covered her in kisses – Eskimo and butterfly included.

One week with Hailey turned to two weeks, and weeks turned to one month – what miracles and blessings from God. On her 5 week birthday Hailey got a fever (most likely a result of an infection, which the doctors explained would likely be the cause of her death). We brought her in to her pediatrician that day and she had been doing so well that I felt like it wasn’t her time yet.

Hailey remained a fighter until the very end and never even showed any signs of being sick. The next day, January 6, when Hailey was 36 days old, God decided to call her home, and He did it just as I had prayed. I had prayed that her death would not be painful or ‘ugly.’ I prayed that she would pass away peacefully in the night while she slept and that morning we woke up to find that she had passed peacefully while we were all sleeping.

In looking back, I am glad that God worked everything out how He did… I’m glad the screening didn’t show Hailey’s Trisomy 18 because I probably wouldn’t have enjoyed the pregnancy as much and I would have been labeled “high risk” and had more complicated prenatal care that wouldn’t have done anything helpful in the long run. Also, I’m glad that the doctors didn’t pick up her intestinal problem in an ultrasound because then I wouldn’t have been able to have the natural, vaginal birth that I wanted and had.

For anyone who knows or has a baby with Trisomy 18 or is pregnant with a baby that has Trisomy 18 – I know that no parent wants their child to be sick or die and how devastating the news can be when you learn that your baby has Trisomy 18 – but know that that child is still AMAZING. Yes Hailey was sick and had many problems. Yes I was devastated to learn she had Trisomy 18. Yes I was devastated to lose her… and yes I wish she had been a healthy normal baby… but she wasn’t…and that’s OKAY. She was created how God wanted her to be created. I never imagined that she could be as amazing as she was since she was so sick… But she was the BEST baby and daughter I could have asked for. She brought me so much joy my heart overflows, even after her death when my heart is broken and she’s not here, the memories I have of her make my heart overflow with joy. She was simply awesome. So to anyone out there who knows someone who is pregnant with a baby that has Trisomy 18 or another genetic disorder – please encourage them to not be afraid and keep their baby because their baby will still bring them so much joy and will touch and bless their lives forever…

What is Trisomy 18?

Facts and statistics about Trisomy 18:
-Occurs when there are 3 copies of the 18th chromosome (instead of the normal 2) in every cell of the body
-Occurs from spontaneous meiotic nondisjunction – meaning the chromosomal abnormality is not inherited nor is it a result of something the parents did or did not do
-Occurs in 1 out of every 3,000 live births
-95% of Trisomy 18 babies die in utero
-Of infants born with Trisomy 18 50% live to 2 months, 5-10% make it to be one year old
-The average life span of a baby born with Trisomy 18 is 5 to 15 days
-A baby can have full, partial or mosaic Trisomy 18 – I am focusing only on full Trisomy 18 which is what Hailey had
-Most Trisomy 18 babies die from apnea or heart problems

Some of the characteristics of Trisomy 18 include but are not limited to:
-Heart defects (Hailey did NOT have – other than a murmur)
-Apnea / Breathing problems (Hailey had this)
-Intestines protruding outside the body (omphalocele) (Hailey had this)
-Growth deficiency (Hailey had this)
-Feeding difficulties (Hailey had this)
-Low-set, malformed ears (Hailey had this)
-Cleft lip/cleft palate (Hailey did NOT have this)
-Clenched hands (Hailey somewhat had this)
-Underdeveloped thumbs and or nails (Hailey had this)
-Webbing / extra skin (Hailey had this)
-Small facial features (Hailey had this)

Disclaimer: I do not list these as being 100% accurate nor do I remember the sources behind all of the information posted.

Trisomy 18 Foundation: What Is Trisomy 18

Hailey Update Sunday, December 20, 2009 at 1:32pm

Just a little update for those of you who are wondering…

Hailey is doing well at home with us. Today she is 19 days old. Every day we have with her is a blessing especially since most Trisomy 18 babies don’t survive birth and most of those who do survive don’t live past 15 days. There are a very small percentage, like Hailey, that can live weeks and months longer than expected. It’s hard to understand how such a small, fragile baby can be such a strong fighter – but that’s our Hailey.

We have hospice nurses coming a few times a week to check in on us and Hailey. She gets weighed every Monday – last Monday she was about 5lbs which meant that she lost about 1lb since birth. She’s still taking bottles of breastmilk, but she was barely getting enough to stay hydrated – drinking takes a lot out of her. So we use a tube to feed her twice a day and she’s getting plenty of nutrients that way. She got an eye infection on Thursday but we’ve been treating it with antibiotics and her eye is doing much better today.

So that’s about all that’s new. It’s great being home with her and we’re excited to spend Christmas with her.