Tuesday, September 22, 2015

3 Years Later...

By Joe Mata-

A quick recap...Our son, Isai, was born at 26 weeks weighing 1 lb 14 ounces and measuring 13 inches long.  He was diagnosed with a grade 3 brain bleed on the right side and a 4 on the left.  He spent almost three months in NBICU, and every day was just as the nurses said it would be...a roller coaster ride.  Some days were great, others his alarms were going crazy all day with adjustments to his breathing machines, medications, blood draws, IV's, blood transfusions...etc..  As a result of the brain bleeds, he was left with a dead spot in his brain that affects his motor skills.

Isai, now three years old, has been receiving physical and occupational therapy twice a week since he was six months old but shows no signs of neurological problems.  The therapist treat him as they would a stroke patient because Isai has weakness on his right side, especially with the use of his right hand.  He is considered a fall risk, and has been diagnosed with slight cerebral palsy.  He continues to see specialists, a Neurologist, and a Gastroenterologist but the visits are just for follow ups with regard to his treatment plan.  We have had him tested several times for speech therapy, and a year ago, he was treated for a couple of months then treatment was terminated because the therapists said he was where he should be for his age.  The second time, therapy was declined for the same reason.  We had noticed that he began to stutter and delay in initiating his first word so we requested that he be tested.  His therapy is focused on core strengthening to help him with his balance and walking, and occupational focuses on his upper body and fine motor skills to help prepare him to learn how to dress and feed himself and to help prepare him for school.

Isai is a happy and fearless boy and is quite vocal and posseses an amazing set of lungs.  He does not know that anything is wrong with him.  As far as he knows, this is life for him and he finds a way to adapt and use what he's got to do what he needs to do.  Isai loves to explore and because of his lack of fear, he finds a way to get into everything and he has even figured out how to climb onto things.  We know that as he becomes more aware of himself, he will make more of an effort to rehabilitate himself.  My wife and I do not raise him as though he is handicapped.  Instead, we encourage him to try and when we see that he is really struggling, then we will help him and show him how to do things.  It is difficult to see him at therapy but we know that we have to continue to push and encourage him for his own well being.

Eight months ago, we welcomed our 9 lb 14 oz baby boy Diego into our family.  I can not say that it was planned or that we researched the risks of having a normal baby after our experience with isai.  We decided to leave the pregnancy in the hands of the Lord and accepted whatever fate He had in store for us.  Our pregnancy did have some difficulties.  It was discovered that my wife had a short cervix so the doctor had to stitch the cervix shut to give us a chance of carrying to full term and my wife was on bed rest for the last four months of the pregnancy.  By the grace of God, we went to term and Diego was born without any problems that we have detected thus far.

With Isai, we were completely unprepared and alone during his time in the NBICU.  We knew nothing about what was happening and how to deal with it.  When we found POP, a whole new world opened up to us and going into the pregnancy with Diego, we were confident because we knew that we had the support and love of the POP community as well as all of the knowledge that we had gained since the birth of Isai.  We knew this time that we would chance nothing and question everything.  Yes, I'm sure I drove the nurses crazy during our emergency runs to the ER because of what we thought were contractions, but I didn't care.  We already knew what was at risk and were not going to take any chances.  My good friend Jordan told me that "We are their voices" and we have to stand up for our children.  With that always in my mind, I expected nothing but the best care for my child.

Wednesday, September 16, 2015

Matthews Surprise Appearance

By Chris Hedrick-

My son is Matthew and this is his story.

My wife and I waited 7 years to try and have a baby. After those who knew said it might take a while to conceive, she became pregnant right off the bat. We were ecstatic. We made her appointments like everyone else and I tried to attend all of them. Besides a little higher than normal sugar everything was pretty smooth sailing otherwise. She had extra appointments just to make sure mom and baby were fine. Then came a hiccup at 30 weeks (November, 27th): her blood pressure had risen very high, very quickly and Matthew was in slight distress but we thought everything was going to be ok. They sent my wife over to the hospital next door for further testing, while walking to the hospital she called me and told me to be prepared to leave work at a moment’s notice. She called back an hour or two later and said to “clock out” and make the twenty minute drive to the hospital. The only time I have ever answered my phone while ringing up guests. 

I was told upon arrival that Matthew’s weight had dropped in the last 2 weeks probably in part because of my wife’s blood pressure going up. The doctor gave the theory if we had waited to after Thanksgiving mom and/or baby may not have made it. We called, sent out text messages, and Facebook messages saying baby is coming!!! An hour after I arrived I was putting on a paper outfit to go in the operating room for my wife’s emergency C-section. 

When I went in the room they had already started the procedure, so I made sure to keep my head behind the top half of the barrier. After a few minutes and a lot of work and nausea, they had Matthew out. They quickly rushed him to the side room to get him warmed, cleaned and make sure he was well. They pulled me over to see him at which time they had him breathing and the doctor told me he was doing everything he was supposed too. When I first looked at him he looked like a red skeleton not a baby. The doctor asked me if I wanted to squeeze his heel but I thought for certain I would break him if I did that. I was simultaneously scared and excited. I knew God was going to be with him but I still had “what ifs” in the back of my mind. By the time he was wheeled up to the NICU I did everything I could not to cry in front of all the nurses. All the emotion and shock was almost too much. I couldn’t believe I was a dad. I was getting ready for Thanksgiving/Black Friday and now I am a dad. 

Things went very well the next few days. His prognosis was pretty grim but Matthew was showing very good signs. He was off all oxygen in 36 hours. Everyone kept commenting on how feisty he was for a two pound baby. Every three hours they would change his diaper, check his vitals and he would always wake up and voice his displeasure on being woken up by emitting a high pitched squeak while flailing his arms and legs out. So for the next 58 days we sat through all the beepings and blinkings. We would visit him every second we got during the day and trying to work with the nurses whenever possible. Checking his progress charts, hoping and praying that he would not have any major issues along the way. Concerns were raised and tests were done but all the tests came back positive. On his last on January 24th he came home at just under five pounds. 

We named him Matthew because it means “Gift of God”. This was even more fitting after all that occurred because if God were not with us Matthew would not have made it through with no long term issues. The nurse who helped deliver him said he was the smallest baby she had every delivered. He will always be our miracle baby.

As we approach his one year birthday he has really gained some momentum, he is very quickly catching up to his peers that were born at term around the same time as him. He has needed more help with his milestones then other babies including extra TLC and physical therapy but he is crawling all over the place, has a massive amount of hair, 3-4 teeth, is trying to pull up, eating more every day, observes everybody and everything.

Thursday, August 20, 2015

You've Come A Long Way, Little Man

By Joel Brens

There are moments in life that will stick with you through it all. Memories that are a great reminder of all the work you have put in, all the blood, sweat, tears, and most importantly, joy, that comes with being a parent. These moments also lend hope to all that is possible for the future, and as a parent of a preemie that is something I think we all can relate to. It hasn't always been easy. Sometimes we've feel like we have more questions than answers. I have felt more joy and sadness over the last five years of my life than I had in all my days leading up to being a parent. There's nothing quite like it. Looking back on all that has transpired over Jayden's first 5+ years I often have to pinch myself at how far he has come.

Today we put Jayden on a bus to go to a full day of kindergarten. Wow. It's a far cry from the isolette and CPAP machine he used in his early days in the NICU.

I'd like to share five thoughts with you about what our journey has been like to reach this moment...

1. I still have absolutely no idea what I am doing, and that's ok. You can read all the books you want, take in all the advice, whether it's warranted or not, try all the latest parenting strategies, etc. The reality of it is there is no blueprint to parenting, especially for those of us who have had children in the NICU. What might work for 90% of parents may not work for you. Perhaps your parenting style is a bit unorthodox, but find something that works for both you and your kids. Moreover, there are times when something that has worked out great that suddenly doesn't work as well. Best advice? Change your dance step. It'll work out.

2. Be a voice for your child. I think it's fair to say that the doctors and nurses care for your child with best intentions in mind. That being said, there are times when parents and professionals may not see eye to eye on things, and they key to finding resolution is to have open, respectful communication. This especially rings true once your child has come home from the NICU. Doctors and nurses at family practices, among others, only get a small snapshot of your child. The best way to address things is to try and have honest dialogue about what your are seeing. Personally, we would rather go the extra mile and leave no stone unturned until we feel like we are headed in the right direction. Be a champion for your child.

3. Things don't magically go back to normal once you bring your child home from the NICU. That may be hard to read, but it's the truth. The reality is we all have different levels of obstacles and challenges we face as our former NICU kiddos grow up. Sometimes it's really hard to put things in perspective. While Jayden has come incredibly far from where he was three years ago with Early Intervention, we still have a ways to go. Over five years of "holding my breath" as we move to bigger and better milestones. It has been exhausting. But it has also been oh so rewarding. There have been times where I have felt overwhelmed with any given set of obstacles, only to come out the other side beaming with pride and relief. When your in the trenches, it's sometimes hard to see the progress that's being made. But when people who see your child less frequently are gushing about the progress being made, eventually you need to believe them. I challenge you to spend 10-15 minutes a day just observing your child. You will find new things they are picking up on every day.

4. Being the parent of a preemie has been such an unexpected blessing. I'd be lying if I said I haven't thought on a handful of occasions how different life would be had we had a typical pregnancy. But it wasn't meant to be for us. The best part about it? How I have grown as a person and who I have gotten to know along the way. Having a NICU baby lends perspective to things. While I have always been a bit of a worrier, I have been able to sift out a lot of the unnecessary baggage that used to weigh me down. Do I still have the occasional rough day? Of course I do. But being a parent gives you a sense of responsibility that can put such a positive impact on your life. I am ten times more patient than I used to be. I have leaned to adjust when life has throw a curveball or two-hundred. More importantly, I have been incredibly fortunate to meet and work with a community of people who I otherwise would not likely know. There are dozens of people who I know and care about on so much deeper of a level than just "Preemie Parents". What a blessing. I'd encourage you to connect with others as well. It's been life changing for me.

5. Success is a team effort. I cannot imagine what this journey would be like without the colossal efforts my wife has put into parenting our son. Giving your child the best chance for success means you and your wife, husband, partner, or significant other need to work hand in hand. For my fellow dads- that part of the journey begins as soon as your child is in the NICU. Ask questions, be as hands on as possible, kangaroo with your child, change diapers, clean pumping parts. Anything you can do to be there will make a difference. For all the mamas- be patient with your partner, and understand this is a journey from the get go for them too.

I hope that my perspective has helped you in some way or another. It's not always easy, it's not always fair, but if you leave enough room in your heart for hope and love, great things will happen!