Your baby’s best advocate, Lily’s story

Advocate

When you have a complicated pregnancy and/or a premature birth, you often need to advocate for yourself and your baby. While doctors may know a lot, they don’t always know what is the best decision for you or your baby.

It is your body, your baby, and your mother’s instincts that often have to guide you. Of course, doctors, nurses, and other specialists will guide you and give you their opinions, but you always need to do what you feel is right. You are always the best advocate for yourself and your baby.

Today’s micro preemie had a very rough time in the NICU, but her mother was truly her best advocate and tried to get her baby the absolute best care. She wanted her baby to have the best chance at a healthy life, and I think she did a remarkable job.

Please meet Lily, as told by her mother, Shelby.

1.Please tell us about your baby.

My daughter’s name is Lily Elise, and she was born at 23 weeks 5 days on October 16, 2012. She weighed 1 pound 5 oz and 11 3/4 inches.

There was no warning. I went to the doctors  for a check-up two hours prior to me ending up in the hospital. They told me everything looked perfect, and she was where she should be. I got home and felt some pressure, put my feet up to try to relieve it and when it continued to get worse, I “checked” myself.  I felt my water bag. At that point, I woke up my husband, who works graveyard, and told him we have to go. I was joking the whole time, not feeling any pain, thinking I was going crazy.

They got me in immediately, but because the nurse didn’t position the contraction monitor right, it showed I wasn’t having any contractions. They called the on-call doctor to check me just in case. Another nurse came and re-positioned, and at that point they noticed my contractions were happening every couple of seconds. Not a minute later, the doctor came in, she told me that a lot of women come in claiming to feel their bags but they never do. She then retracted her statement, called out to all the nurses around her, and demanded I get a room because I was fully dilated and effaced and my bag was bulging. I was having this baby now.

I remember arguing with the doctors, demanding a c-section, and insisting that she was 24 weeks (being the cut off age, especially since this hospital did not have a NICU and were not prepared for this). After two hours of arguing, my water broke and Lily’s heart rate plummeted. They had no choice but to give me a C-Section. When I woke up, I remember looking around and asking where my baby was. After an hour of waiting, they informed me that a NICU team was finally here to pick her up. They briefly showed me her in the portable incubator before carting her away.

I was stuck at a hospital 40 minutes away from my baby for two days. Those two days were a nightmare. My husband would face-time with me so I could see her, but only for a little bit. I remember laying there numb. I refused all pain medication. The second day they forced me to take some ibuprofen, and finally I was discharged. I grabbed my things and headed out, refusing a wheelchair.

Seeing my baby there, at that moment, was the best feeling of the world.

2.Please tell us about your NICU stay. What was the hardest part?

Unfortunately, my daughter’s NICU stay was terrible. By not using proper sanitizing methods at her birth hospital, she got sick within two weeks. They injected her bone marrow to try and force her immune system to work and by the grace of God she recovered…..only for her to need a PDA two weeks after she was born.

She was the smallest baby this doctor had ever performed it on.

Two weeks later, she was in kidney failure,  and she was given dialysis. It doesn’t sound very bad, but when you see two doctors and three nurses trying to get my poor bloated baby, who was so swollen and so red from not having peed, to pee, well, it was a nightmare. While she was swollen, they had to do a bronchoscopy to see when her oxygen was unstable, discovering that she had tracheomalacia (a floppy trachea). She would need to be trached. However, she couldn’t be trached until she reached a certain weight.

After 45 days, we finally got to hold our baby!

During the time until her trach surgery, she experienced infections, collapsed lungs, constant change of vents. It never really got easier, and I was reminded daily I could pull the plug. Then she got trached, and all was going well until she got sick. Her trach area caused an infection, but,wait for it, she had 72 hours to get ROP surgery, a surgery that they didn’t do in my area. She would need to be care-flighted.

I had a bad feeling about Valley Hospital, and my doctor, after arguing with my insurance, was able to get her to Salt Lake.  Right when we were about to send her, she had an “episode,” and she wasn’t stable. She needed to wait. We had less than two days, and Salt Lake filled up, so she’d have to go to Valley to Vegas. On her way there her vent stopped working, they had to fly through area 51 (demanding clearance) while hand-bagging her. By the time my husband and I made it there (we were driving) her surgery was done and it looked beautiful, but still I couldn’t get the feeling like something wrong was about to happen…and I was right.

The worst of it came when my husband had to leave to go back to work. I was left there by myself staying at the Ronald McDonald House. The nurses there were horrible (I just found out they thankfully closed their NICU). From what I saw, they never turned her head, so she developed a pressure sore (even though I always demanded they do and they’d insist they did but she was always in the same position and never moved the hours I was there). They would turn on the light without covering her eyes (she just had surgery and was in a completely dark room) as well as she was sick.

A couple of days after the surgery, I came and noticed blood coming out of her nose. The doctor assured me “don’t worry we see this all the time,” but still I was unsettled. Why was my baby bleeding?

After two hours, I was forced to do my 15 minute break, which I used to pump. I came back from pumping and saw alarms blaring, doctors hovering and yelling. My daughter, my beautiful daughter, VOMITING blood. Everything stopped and I ran. I called the nurse I was close with, and she told me to get back in there. Lily need me, and she was my rock. I called my husband up, hysterical. He rushed (10 hours away) straight over.

By the third day, most had given up. I had to yell at doctors to order more blood, and I got crazy when I noticed that the doctor had dropped the rate the blood was going into her, as though I wouldn’t notice. She needed blood, she was vomiting buckets. Why? Because a stress ulcer they created.

They all but gave up. I literally walked in, to see no one in my daughter’s room while she was vomiting blood, her nurse and R.T. flirting outside her door. I had to swoop in, lift my daughters head up because she was choking, grab the suctioner and suction out the blood myself.

After two weeks, I got crazy, and I got mean. She’d had over 60 transfusions at this point. These people were cruel. It was so stressful, and I demanded she leave this hospital, to the childrens next door. They insisted she was unstable, and if they moved her they might as well send her back home. I demand they do it anyways. After two weeks, she had a “stable” day, and we were able to get her home.

Her amazing hospital (St. Mary’s) called nurses on their days off to see if they could come in for her. She had 3 personal nurses. She only threw up once (on Valentines Day) and that was it. They got the clot out, she healed. The warned me that she would most likely need to be moved to a PICU, she was past her due date at this point, that she would be on a Vent in the hospital for years.

Then she did something amazing. She got off all her drugs, started breathing easier, and her vent settings went down. She was then put on CPAP…where she came off that too!

On May 1st (6 and half months later,) I decided to have her moved to the PICU (so I could stay with her full-time). When we got there, they were confused why she wasn’t send home. Her lung specialist insisted that she stay for at least 2 weeks. After two weeks, on May 16th, we came home (on oxygen with a trach humidifier machine and suctioner, but we came home!) one day shy of 7 months. Over 200 days!

3.Do you know what caused your premature birth?

We never found out the reason why she came so early. Most likely, it was due to a severely incompetent cervix.

4.How is your baby doing today?

Today Lily is doing amazing!

She got cleared for CP, although she has some delays. She has some weakness on her left-side, which caused a delay in walking until she was just 3 months shy of 3. Her memory is super amazing, though. She had yet to speak full sentences yet, and was cognitively behind in some areas, but at two learned how to sing and recognize her ABC’s both upper and lowercase. Now, at three, can read over 300 words, knows the letters sounds, and can recognize her numbers 0-12 perfectly and 0-20 semi perfectly while saying them (all in and out of order). She also knows all her colors, sounds, animals, shapes (even crazy ones like octagon) and can read books almost perfectly back to you if she hears them enough.

She LOVES to read. This kid doesn’t play with regular toys, but just reads all day. I love it.

She’s also super feisty and stubborn, but also so sweet, smiley and polite. She constantly laughing and running around.

I forgot to mention, but she had a G-Tube placed when she got trached. She still has it, although she got her trach out the following year on April 9th!  She chokes when she swallows and may always need a G-Tube, which is no problem for us!

Around November of last year (2015) we found out she has stage 3 kidney disease, and this June (2016) her doctor informed us we were able to get her to stage 2! Stage 5 being the worse and in need of a transplant. Eventually, there will be no stopping her kidney disease. She’ll get to stage 5, and she’ll need a new kidney. The goal is to keep the kidneys she has going for as long as possible. She currently sees 6 specialists (It was 7, but we got cleared from her cardiologist!)

She is without a doubt, the sweetest, happiest, beautiful little 3-year-old you’ll meet!

5.What advice do you have for new Micro Preemie Parents?

As Dory says “Just keep swimming”. Every micro preemie parents journey is different, some have it easier and some harder but keep your head up. Know going in that you may have a hard journey. I prepared myself, which is why I was able to handle it so well (at least that’s what people tell me). Most parents break because they weren’t expecting it.

It took me months to accept my daughters kidney disease, because I wasn’t prepared. I had break-downs every day, but I was prepared for the NICU. I was prepared for the possibility of my daughter having C.P., or her staying in the hospital, or being trached all her life, among other things. Prepare yourself. That way, when your beautiful child is able to overcome it,(and they will be able to overcome some,) it’ll be worth celebrating and it’ll lift your spirits.

Cherish your little, but it’s alright to be bitter about what was taken from your child. It’s alright to feel jealous of other kids doing things naturally, only to watch your child have to work so hard for it. Just don’t let it be the only thing. Focus on your baby, and more than anything, keep your baby happy no matter what. Protect her from rude people, make sure she falls asleep every night with a smile on her/ his face.

Thank you so much for sharing beautiful Lily with us. You did an amazing job being her advocate, and her mother. I’m sure you will continue to fight for the best, and we will be rooting for her.

Please leave any supportive comments for Lily and her family below.