But spend some time in one of those rooms and you will see a big part of the child life specialist’s job is to help patients through tests and procedures, as well as coping with any life changes they may face. Even though NICU patients are tiny, child life specialists still play a vital role in not only providing support and stimulation for the child, but for the whole family.

“A lot of our parents need support during this time,” said Lauren Bridge, one of two child life specialists in the NICU. “In a way, it's a loss for them because they didn't have the pregnancy they expected. If they delivered early, they may have never had some of the experiences they anticipated.”

With the young patients, Bridge says she tries to focus on infant development and milestones. She and the other child life specialist, Lisa Pool, are always looking for ways to foster development, which could mean putting a mobile over the infant’s bed, making sure the lights are turned down or even just talking to them.

The other huge role they play is working with siblings. Often, parents aren’t sure whether or not they should bring their other children into the NICU. Bridge encourages NICU parents to include siblings in the baby’s care, though she says regressive behavior is common, especially among preschool age kids. This can mean wetting the bed even though they are potty trained, becoming clingier or refusing to sleep in their own bed. Child life specialists are there to help families navigate this stressful time and help siblings understand what is happening to their little brother or sister.

Ultimately, Bridge says she hopes she can help make NICU families’ time at Cook Children’s a little better.

“The best part of my job is seeing families become increasingly comfortable in the NICU and being an integrated part of their child’s care.”

From the beginning, it was clear that my body didn’t like being pregnant. My husband, Shawn, and I worked on getting pregnant for a little over a year and were finally successful after seeing a fertility specialist. I can honestly say that I didn’t really have one day during my pregnancy where I could just enjoy being pregnant. Whether it was being really nauseous, increased problems with my asthma or dealing with high blood pressure.

This new chapter of our lives began on March 13 when I called the doctor with an exceptionally high blood pressure reading. I’d been battling high blood pressure since week six of my pregnancy but it had been controlled with medication. I remember thinking to myself before I called the doctor that morning that I was probably just overreacting. Two hours later, I was in a helicopter being taken from Harris Southwest to Harris downtown. The whole feeling was completely surreal. I didn’t really feel that bad so why were people acting like I was so sick?

I was told that I was being transported to Harris downtown so we could be closer to Cook Children’s in case I needed to deliver. Deliver?? I was only 26 weeks; there was no way I could deliver yet. I wasn’t ready. She wasn’t ready. But, less than 48 hours later, at 8:33 p.m. on Friday, March 14, Avery Leigh Wooley came into this world via a C-section, weighing 1 pound, 5 ounces. The doctors had diagnosed me with preeclampsia and decided it was just too dangerous for me and her to stay pregnant any longer.

Being in the operating room for the C-section was another surreal experience. Shawn just kept telling me to “stay Avery strong!” That has now become our battle cry. We’ve even printed up bracelets that say “I am Avery strong” for friends and family to wear.

We are on day 14 of being in the NICU. Overall, she has done really well. She is experiencing all the normal things that a premature baby at 26 weeks would but nothing out of the ordinary. You never know what news could be lurking around the corner so we’ve really focused on taking it one day at a time. We celebrate the good news, try not to focus too much on her setbacks and try not to think too far in advance. This is definitely a marathon, not a sprint. They say to plan on her being her until her due date, which was June 20.

The care that we’ve received here in the NICU has been incredible. There is nowhere else, except in my belly, that I would rather Avery be right now. All her nurses and doctors show incredible empathy and do a great job of comforting me on a daily basis. It’s not just a job for these people, it’s a calling. They do it because they love it. They’ve taught me so many new terms and do a great job at explaining things in plain English.

The amount of guilt I have for not being able to carry Avery to term is overwhelming. I feel like I failed at my first act of motherhood. I will spend the rest of my life trying to make it up to her. For right now, I am trying to do that by being here with her as long and often as I can and giving her my breast milk to make her grow big and strong, so she can be Avery strong!

Avery's Journey Continued:

• Avery's Journey - Part 2
• Avery's Journey - Part 3
• Avery's Journey - Part 4
• Avery's Journey - Part 5
• Avery's Journey - Part 6
• Avery's Journey - Part 7
• Avery Goes Home! - Part 8
• Thankful to be Home - Part 9
• Avery turns 1 - Part 10
• Independence Day- Part 11
• An Autism Spectrum Diagnosis - Part 12
• NICU Parents Suffering from Post-Traumatic Stress Disorder - Part 13

Just in time for the holidays a reader wrote in with this question:

“My friend...was told by her grandson’s pediatrician that her grandchildren who are vaccinated should never be around any unvaccinated children. Well, the parents of her other grandchildren do not want to vaccinate their small children…As a result there are no more family gathering with all grandchildren. They have to spend holidays on separate days. My question is: Why would the pediatrician say this? If the children who are vaccinated and the children are not showing symptoms what’s the problem?”

This is definitely a sad and tricky situation and one that we should use extreme care when discussing.

One thing I will say is that no matter what one’s choice about vaccinating is, parents believe they are making the choice in the best interest of their child. Of course, I have strong opinions about how important it is, but this discussion is not for the faint of heart.

There are probably some doctors that would tell you it’s no big deal and you shouldn’t worry about it (I would disagree with them). There are other doctors that would say you should never have your child around children who are unvaccinated regardless of your child’s health (I recognize this is not reasonable in many situations).

Here are the questions to consider:

1. How old is the child? The younger the child, the more vulnerable they will be to infection. They cannot receive protection for chicken pox or measles before 1 year. Older children who are fully vaccinated have a significant amount of protection and they likely encounter an unvaccinated child at school every day.
2. Who isn’t vaccinated? This question is about family members which makes transmission of infectious diseases more likely than if you just walked by someone on the street and were not interacting with for longer periods of time.
3. Can you have an open conversation with those involved? The discussion is clearly more complicated than simple medical advice as it broaches on several tricky areas including family dynamics and vaccination.

The easy (get out of having to make a committed answer) is that there is no one answer to the question. The family should talk with their doctor about their specific concerns and make a decision with their counsel.

Should I stop the blog post there? Not so fast.

Instead, I want to give you a framework for having that discussion with your doctor.

What diseases should I be worried about?

I believe that all vaccines are important, period. But there are 3 diseases that jump to the top of my list when considering this issue:

1. Flu

Flu season is predictable in that it comes every single year at roughly the same time. It is unpredictable in that we never know how widespread it will be and how severe the cases will be when it does come around. Flu is particularly dangerous in babies and they cannot be vaccinated until they are 6 months old. Remember that the flu vaccine isn’t perfect, so I’m not saying that everything’s cool if we all have flu vaccines but it would seem logical to get as much protection surrounding the baby as possible.

2. Pertussis

Pertussis, or whooping cough, is still common and is a very serious disease for anyone who gets it. In children, teenagers and adults it tends to cause a very rough and painful cough that lasts for weeks to months. I know of adults who have had broken ribs because the coughing is so hard. The real danger for pertussis comes in small babies (less than 3-4 months). These babies commonly have spells of coughing that cause them to stop breathing; leading to ICU stays for intubation and unfortunately, death. Babies are vaccinated against pertussis at 2, 4 and 6 months which increases the number of children who are protected with each shot but they go on to get another vaccine at 4 and 11 years as well. So, when are they fully protected? It’s impossible to say. In addition, vaccines are not perfect so even vaccinated infants who are exposed could develop pertussis. Pertussis still occurs commonly in the United States and is generally carried by older children and adults who are coughing but do not know that they have pertussis. Just like flu, having the vaccine does not prevent disease 100% and I still feel that we need to do something better with the pertussis vaccine but again, it would seem logical to increase protection as much as possible.

3. Measles

Measles is another disease that still occurs in the United States. In 2014, there was a record number of 667 confirmed measles cases reported to the Center for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases (NCIRD). That’s the highest number of cases since measles elimination was documented in the U.S. in 2000. Measles can cause pneumonia and have a higher risk of hospitalization in children under 5. Children receive their first measles vaccine at 1 year of age, but they have no protection from measles until then.

What criteria should I use for being around others?

1. If your baby is under 6 months, use extreme caution. Many babies do not have full protection until after the 6 months shots. In addition, they cannot receive a flu vaccine until 6 months.
2. If your baby is under 1 year, I would also use caution. Your baby cannot be vaccinated against measles or chicken pox until 1 year.
3. After your child is vaccinated at 4 years, they have much of the protection that they need to protect themselves against the vaccine preventable diseases.
4. Babies or children who may not have a normal immune system-such as those with chronic illness or who were born premature deserve extra caution.
5. Anyone with symptoms of illness, especially fever, cough, congestion or rash, should not be around your baby or child regardless of your contacts’ vaccination status.

Can you get a definitive answer about when your baby can be around unvaccinated children? No, but you at least have some information to make an informed decision.

After you’ve discussed your plan with your pediatrician how do you handle the conversation with friends and family?

Here are some thoughts about some things you might say:

1. Our baby/child doesn’t have protection against many very dangerous diseases and we do not feel comfortable having her around people who could spread them to her.
2. Our baby/child has already been through so much, we can’t risk putting her through another medical problem. Especially something that we could have avoided.​
3. The doctor was emphatic that we cannot be out around anyone (especially someone who is not vaccinated or you could leave that out) until __________. (I’m fine with a family placing the “blame” completely on me.)

We’ve been through so much already in her young life and many of you reading this have followed her story since her birth. I thought this would be a good time to provide an update. “So, how is Avery doing?” A question my husband, Shawn, and I get on a daily basis and we’re often not sure how to answer. Avery is doing well and is a very happy and easy-going baby. She is still on oxygen and will be for a while. And she still eats primarily through her G-button (feeding tube). She continues to make progress but at her own pace. Some people take baby steps; we take micro preemie steps.

One of the hardest parts about being home is that we no longer have a medical team that monitors her daily. I got so used to asking her nurses, therapists and doctors about what was considered “normal” for micro preemies and what wasn’t. Now it’s our job to decide whether something is worth calling a doctor about.

As time goes on and we continue to deal with new issues related to her prematurity, I am developing new coping mechanisms. Some are more productive than others. One has to do with planning her first birthday party.

As I began thinking about her first birthday, it became an obsession for me to create a perfect “Pinterest” worthy birthday party. For those who know me, this is laughable. I’ve never been one who has the patience to attempt anything like most of the “crafty” things you see on Pinterest. But it became my mission. After coming home several nights in a row to me “crafting,” I think Shawn was starting to worry about me!

After thinking about it one night (while crafting), I realized it was my on-going guilt manifesting itself in a new way. Maybe she would look back to pictures of that day and not blame me for her early entry into the world because of how fabulous the birthday party was. If I could make things pretty like a picture then it would fix everything else. I think it comes down to the fact that this was something tangible that I could control whereas I can’t control how quickly she gets better.

In thinking about other ways to celebrate Avery’s birthday, we also decided to do something special to give back to the place that saved Avery’s life – the Cook Children’s NICU. Plain and simple, without the NICU, we wouldn’t have a birthday to celebrate. And so, our family made a donation to the NICU that allows us to have a plaque with Avery’s name on it outside of her room. We used to joke that she deserved a plaque outside that room because she stayed there so long. Now, thanks to my very generous parents, she has one. It’s my hope that her story will inspire and provide hope for others who come to stay in that room.

And so, while I can’t control how quickly Avery gets better, I can control how I use our experience to others who have similar journeys. Thank you all for following Avery on her’s.

Avery's Journey:

• Avery's journey - part 1
• Avery's journey - part 2
• Avery's journey - part 3
• Avery's journey - part 4
• Avery's journey - part 5
• Avery's journey - part 6
• Avery's journey - part 7
• Avery's journey - part 8
• Avery's journey - part 9

Who were they kidding? There's no emotional prepping anyone could do at that time. So, off to the OR for delivery we went. Talk about scared! They gave my baby a 10 percent chance of survival and they gave me a death sentence if they didn't deliver right then and there.

Graysen was brought into this world three months early weighing 1.4 pounds and not crying, or breathing. I remember seeing that he was the size of the nurse’s hand when she was working on him. I got to take one look at him before they had to intubate him immediately to get him breathing, since he was turning blue.

They then hurried away with him to the delivering hospital’s NICU. He was supposed to be born on March 15th (spring break baby) and he came into this world right before Christmas. With only a diaper the size of a tiny flip cell phone (which was the phone we had 10 years ago!), and under a heat lamp for warmth, inch by inch, ounce by ounce, he grew.

Weeks into life, the doctors decided to start feeding him by NG tube (Nasogastric tube that runs through the nose and into the stomach for feeds).

He did fine tolerating the feeds until he got an infection in the intestines, called necrotizing enterocolitis, also known as Nec. This made his belly swell up and, if not cured properly, could have resulted in a hole in the intestines, which is fatal. Surviving Nec was thought to be low. The doctors called to inform me that he was not doing so well and needed to be transferred by Teddy Bear Transport to the Medical Center’s NICU.

They loaded him up and took him by ambulance after two months in the NICU where he was born to begin his next few months of growing. Cook Children’s slowly nursed him back to better health, and, luckily, Graysen did not need surgery on his intestines. Miraculously, he pulled through another obstacle.

Weeks went by before they attempted to feed him again. In the meantime, the doctors had a central line surgically put into his chest so he could receive his nutrients properly. After a few weeks of feeds, the doctors started to see major improvement. They took him off the respirator and put him on a high flow nasal cannula to help with Graysen’s oxygenation and breathing. He did great with this new machine. Now breathing well, it was time to introduce the bottle at around 3 months. He took it, but not all of it.

The doctors had to decide what to do about the feeds he was leaving behind. They decided to put a G-button surgically into his stomach so that the left over feeds could be received by tube. This was the turning point. The hardest decision I had to make. Once that G-button was placed, I would have a medically dependent child.

After being in the NICU for five months, this was the only way he would be able to come home, and I was ready for that day. I gave the doctors the approval, and off to his first surgery he went. That was the first of 14 surgeries he would have throughout his first 10 years of life. Surgeries followed including fundoplication (an operation to prevent stomach contents from returning to the esophagus), hernia repairs, tonsillectomy, and a tethered spinal cord repair. Just to name a few. His spinal cord was taut at the end and neurosurgery was scheduled at 12 months. He caught meningitis after the surgery and, once again, beat dangerous odds.

Graysen went through so much that he didn’t eat. For six years, he was completely tube fed. He went through many years of intensive feeding therapy. He still didn’t want to eat orally. I put him in kindergarten and he saw his peers eating by mouth. That sparked an interest and, at 6 years old, he started eating. Now he demolishes whole cheeseburgers and fries! Not only has he beat death numerous times, he's gone through 14 surgeries and countless doctor appointments getting him to where he is now. This kid is here for a reason. This month we celebrate Graysen's 10th year of LIVING! Graysen is my Christmas miracle.

I could not have done this alone. I am so thankful that I had, and still have, a great network of people working together at Cook Children’s. Without their dedication to their job and to children, I don’t know if Graysen would have made it. Dr. Nancy Dambro was one of his main doctors from the time Graysen was born. Dr. Michael Deitchman has been his pediatrician through all the rollercoaster ups and downs. I can’t thank him enough for his support, countless visits and patience with us. We also see Dr. Jose Iglesias, Dr. Jill Radack, Dr. Bankole Osuntokun and Dr. Fernando Acosta.

It takes a village in Graysen’s case, and I’m glad our village is Cook Children’s!

People tell me all the time that I am strong, but that’s only because they don’t know my twins. Born at 24 weeks, Houston and Quinn Villarreal each weighed 1 pound, 8 ounces and were 12 inches long.

Both of my little ones have gone through so much. At different times in their lives, they were given a 50/50 chance of survival, but they kept fighting. During their time at Cook Children’s they've had many blood transfusions, were on a high frequency jet ventilator for two months and intubated for three months.

Quinn was born not breathing and needed to be resuscitated. At 2 months old, she had patent ductus arteriosus (PDA) surgery at Cook Children’s to control the blood flow to her heart and lungs. On the day I’m writing this blog, Quinn had surgery to remove two cysts in her esophagus that were obstructing her airway.

At 4 days old, Houston had emergency surgery for a bowel perforation. At 2 months old, on the same day of Quinn's PDA surgery, Houston needed treatment after became septic and had bacteria in his blood. Within that same month, he needed surgery to re-attach his intestines and remove his ostomy bag. One month later Houston had another operation to repair two hernias.

But my kids are strong. Today Houston and Quinn are 5 months old. They are on 1/16th liter of oxygen, and eating almost all of their bottles. These little miracles have completely beaten all odds. They have been fighting for their lives from their very first moment. So when people say I'm strong, I say my strength is nothing compared to my little blessings. Strong is these AMAZING babies that came into this world and have already dominated it! Strong is Houston and Quinn.

I truly believe we could not have picked a better hospital to take care of our babies than Cook Children's. From day one, the focus has been on our babies and our entire family. Day in and day out, they made sure our stay at Cook Children’s was as comfortable as possible. We have had the most amazing nurses, doctors, surgeons, respiratory therapist, child life specialists and many more staff members that have impacted our stay. All of whom have said our babies have touched their lives. I don't think they know how much each and every one of them touched ours. This is an unbelievable unit, and we're honored to call them our little NICU family.