Blog Feature: Avery

I wanted to do some blog features to highlight some great people I have recently 'met' with special needs kiddos/family members. There stories have helped me and I wanted to share there journeys. For me as a special needs mom I crave that connection with other special needs parents. I get that through emails since I don't have any real life friends with such kiddos. One thing I have learned though is even though I(we) have special kiddos we are all moms and our stories may be different and our families may look different, but in the end we all hurt for our kids, we all get sad and angry, and we all experience the joy in our kids. At the heart of it we are all the same with different paths.

My first feature is Nicole and her son Avery. I 'met' Nicole when she emailed me to share a little bit of her story, which is oddly similar to ours. Her little man is amazing and like B is a little miracle. They both even had G tubes placed within a week of each other (both there 6th surgery). But unlike B, Avery was born a twin and has a sister to join his journey! Here is Nicole and her son Avery's story.

Avery Castle

Born at 25 weeks and 6 days

2lb 4oz

Now 2 years old.

 

1.Tell me a little bit about your sons journey.

It was hard for Keith and I to get pregnant. We did several different kinds of fertility treatments which didn’t work out. After a miscarriage and a failed round of IVF we found out we got pregnant with twins via IVF on 11/1/09. We were ecstatic that we were pregnant and twins made it even sweeter. But our pregnancy was FAR from “normal”. At 6 weeks pregnant, I woke up with the most awful pain. I thought it was a kidney stone as I had bouts with those before and it was a similar pain, but even worse this time. We went to the ER to find that it wasn’t a kidney stone, but that my right ovary, through a complication from the IVF, had become engorged and twisted causing the blood supply to it to cease and it died. So, I had to have surgery to have it removed. I was so scared because I knew that surgery at 6 weeks pregnant was a risk. Thankfully everything went well with the surgery and the babies made it through. Everything was on a fairly normal course after that. Because we were pregnant with twins we had to have level 2 ultrasounds every month to monitor their growth. At our level 2 ultrasound in march (22 weeks and 2 days pregnant) we found out that my cervix had opened. They sent me to Duke University Medical Center and I was placed on 100% hospital bed rest. I was able to keep them inside for about 3 weeks longer, but due to them continually trying to come we delivered them at 25 weeks and 6 days.

Avery on CPAP

Avery and Raegan

Avery had a very rough first few months of life. On day 3 of life, he coded due to a Grade 4 bilateral brain hemorrhage. The Doctors didn’t think he would make it through the afternoon and asked us to sign a DNR because they had already had to do CPR on him once and felt that having to do it again would cause more suffering than it would do good. Keith and I weren’t ready for that and we told them we’d consider it but that it wasn’t something that we wanted to do right then. We called all our family in just in case so that they could see Avery in the event that he did pass. Gradually he got better with every day. A week later we were faced with more bad news. They knew he had some kind of infection, but couldn’t identify it. They brought in infectious disease who tried to grow a culture but couldn’t because they had already begun antibiotics and because he was so small the sample they were taking from him just wasn’t producing anything useful. They called it “presumed meningitis”. Once again they asked us to consider the DNR. He fought that infection for about a week and again gradually got better. In May of 2010 when he was about a month old they decided that they needed to place a reservoir in his head. The amount of fluid that was collecting on his brain was increasing and they were unable to pull off what they needed to by doing spinal taps. So, we sent our one month old into brain surgery. I can’t put into words what it’s like to send your 3 pound baby off with strangers to have something placed in his brain. To say it was awful is putting it mildly. We got back on track after that surgery with learning to breathe and grow. 

Then we were faced with ROP(retinopathy of prematurity) because of the amount of oxygen he had been on. We watched it over the course of a couple of weeks and it just kept getting worse. The Ophthalmologist(eye dr) met with us and said that if we wanted him to have any chance of seeing we needed to do laser eye surgery. So, at two months old, Avery had his second surgery. It was determined that his hydrocephalus(fluid on the brain) wasn’t improving and in order to be able to go home he would need a permanent VP Shunt. Pulling the fluid off via the reservoir was helping but it just wasn’t providing the constant movement that he needed in order to minimize further brain damage. So we had our third surgery at a little less than three months old to place the VP Shunt.  That seemed to be the missing piece and after the surgery Avery took off in the nursery. He began to eat better and they decided that four days after the surgery he was clear to go home! He spent a total of 98 days in the nursery. Funny enough, that was only 3 days longer than his twin sister that had a pretty “normal” course in the nursery. 

Once we were out of the hospital, things were going well. We were complete germaphobics, but that was OK because the worst thing we suffered through that winter was an ear infection! I don’t know many term babies that have it that good. So, we thought we were on the path to normalcy until we went for a routine CT scan in April to evaluate the progress of the VP shunt. Sadly, the scan showed that the shunt wasn’t moving as much of the fluid out of the ventricles as was needed. So the day before they turned one, Avery had to go into surgery and have a VP Shunt revision. Leaving them in the hospital was extremely hard, but having one in the hospital and one at home on their first birthday was heart breaking! But we were able to get home before their party that weekend and celebrate with both babies, so it turned out OK. A little over a month later, I noticed that Avery was staring off and started spitting up more. I called the neurosurgeon and they did another CT scan to find out that the revision had fixed one problem by emptying out one of the ventricles but that had created another problem because it was emptying so much that it was collapsing around the catheter and therefore not allowing the other side to drain. So a little more than a month later we went in for our second VP Shunt revision which (fingers crossed) has seemed to do the trick. 

First Birthday

The last scan that Avery had was beautiful. Recently he was diagnosed with a form of epilepsy called Hemi Hypsarrrhythmia. We thought that we had it under control with medication, but on Friday of Memorial Day Weekend, I found him in his bed having a seizure. Because we didn’t have a medication to stop the seizure, it got out of control and he had to be air lifted to Duke University Hospital. He was intubated for two days and spent some time in the PICU. He came home a couple of weeks ago and is back to his normal self. We have increased medication and now have an emergency dose of Valium to give him in the event that he does have another seizure. On June 18 went back to Duke for Avery’s sixth surgery to have a G-Tube placed. Although he does eat by mouth, he just wasn't taking in the quantity that he needs in order to thrive. At two years old, he barely weighs twenty pounds. He doesn’t have a specific diagnosis but has been put under the CP umbrella. At the moment we are just allowing him to tell us who he is and what he can do. He sees a speech therapist (eating & speaking), occupational therapist (he keeps his right hand clenched and though he can open and close it, he doesn’t have the ability to actually use it), vision therapist and a physical therapist. He also has hearing loss in his right ear so he has a hearing aid. He can roll and kick around on the floor (his favorite thing to do) and can make some sounds (Ba, Buh, Ma etc).

 

2.How is life raising a special needs kiddo and having another child?

It’s tough. To be completely honest, sometimes I ask myself – Is this really my life? I know that may sound harsh but it is one of those situations that you think would never happen to you, but it did. There is no manual so you constantly worry if you’re doing right by both kids. BUT – it is wonderful more than it is frustrating and that is what makes it completely worth all the hard stuff. I compare their developmental differences to a parent who has a toddler and an infant. It can be hard to make sure that I am being fair to both kids. Raegan wants to move, play, talk, sing and explore the world. Avery wants to lay on the floor, roll over, be held and make baby noises. It can be difficult to meet both of their needs.  

The biggest hardship though is to treat them the same when they are so different. We have to make sure that we are conscious of Raegan’s feelings and how we treat her when she is interacting with Avery. I try to not over react when she accidentally falls on him or wants to take him something that will inevitably spill on him. She very much wants to be a part of his world and the balance between keeping him safe and allowing her to interact with him can be hard to find sometimes. We had to learn a long time ago not to say “no, Raegan” every time she approached him. We didn’t want her to think he was “off limits” or even create a divide in her mind where she wouldn’t want to play with him or even resent him. So we make every effort to make her a part of everything that we do with him – including therapy and doctor’s appointments. My biggest fears are that one is being left out. That Avery feels segregated from what we are doing or that Raegan isn’t getting paid attention to because we are focusing so much on Avery’s special needs. What moves you forward is moments when after you have given her a kiss or a hug, she will look at you and say “give Avery a hug”. She truly loves him and things like that tell me that although we may not be doing everything exactly right, we are doing OK.

3.How do you find support for raising a special needs kiddo?

We made lasting relationships with the nurses & NNPs that we met while we were in the hospital and area able to ask them for the things that they know about. Although they may not be their birth children, they have dealt with special needs far longer than we have and have gained a lot of valuable knowledge along the way. Because of the kids low birth weight we qualified for an early intervention program through the state of NC. They have been a valuable resource. Other than that, keeping in touch with parents we were in the ICN with and bouncing ideas off of them. The best advice I was given was DO NOT GOOGLE ANYTHING. I usually ask whomever I am speaking with for resources and do my research that way. Google is a good tool – but it can scare the hell out of you!

 

4.What has your son taught you?

Most of all patience. I have long since been a type A personality. I like to know the who, what, where and when of everything. I am a planner and like things to go according to that plan. Naturally, having a child come into your life throws the “planning” out of whack. But when you have a special needs child, it just all goes out the window. So, I’ve learned to be patient and that not everything has to “fall in line” exactly as it’s supposed to. In fact, if you give “flying by the seat of your pants” a try, it can actually be fun. And a lot less stressful on your children –whether special needs or not. It all goes “perfect” when at the end of the day, everyone is smiling at each other and you can giggle over whatever took place that day.

 

5.What is the biggest challenge about raising your son?

The biggest challenge is actually my own. My biggest challenge is fear. I am afraid that he isn’t happy. I am afraid that I’m not the right mom for him. I am afraid that I’m not doing enough for him. I am afraid that I am pushing him too much. I am afraid that people will treat him poorly. I am afraid that he will feel left out, inadequate. I am afraid that he will not have independence. I am afraid that he will gain independence and then I won’t have the strength to let him be independent. I am afraid that I will lose my son. I think every parent deals with fear – mine is just exacerbated, and I worry that my fear will get in the way.

6.What is your favorite thing about your son?

His smile and laugh.  It’s reassuring that he is happy. And his smile is one of the most infectious things on this earth! It truly lights up a room. He also has a gentle nature and is extremely laid back even with all that he has been through. I feel very blessed.

 

7. Anything else you'd like to add about your son, family, or yourself.

I guess I just want everyone to know how blessed we feel. Yes we have obstacles  - but doesn’t everyone? Our obstacles are just a little more apparent than your average family’s. And we do our very best to take everything as it comes and be as positive as possible. Our family and friends (whom we consider a part of our family) help us to be positive and keep going. We learned really early to appreciate everything and though I wish the twins hadn’t come early and I wish Avery hadn’t had to go through all of the hardships that we have – we actually consider ourselves very lucky. Things happen for a reason and had they not happened the way that they did, many people whom I hold very dear to my heart may not have crossed my path. So, people may look at us with pity – but I look at us as pretty lucky because our lives are truly enriched by the love that surrounds us. Avery and Raegan are nothing but pure joy and I am blessed to be their Mommy!