Tag Archives: NICU

I Can’t Believe Where We Are

FullSizeRender-3My sister sent me this today. It’s a photo of Braxton just 5 days old in NICU with a nasogastric tube, laying on a bilirubin blanket because he had jaundice. On top of a condition that doctors could not explain to us. It is crazy to think about where we were 4 years ago compared to where we are now. Every year since we left the NICU I think about the progress we’ve made and complete lack of hope we had in those early days.

 

4 years ago, we didn’t know what was going on with Braxton, and all the doctors led us to believe he was fighting for his life.

4 years ago, I watched my daughter’s face frown in sadness and confusion when we told her she couldn’t meet her baby brother. And every day when I left to sit with him in the hospital.

4 years ago, I sat in a cold hospital room surrounded by a number of other babies holding back tears and praying to take my baby home.

4 years ago, I couldn’t stop crying when I was alone because I wanted nothing more than to have my sweet boy with me at home, where he belonged.

4 years ago, I didn’t want to hear any “success” stories because instead of giving me hope, it made me feel like more of a failure.

4 years ago, I was lonely, sad, depressed, and desperately trying to hold myself together.

 

Today?

Today, we know that Braxton’s condition, while lifelong, is not terminal. It is not something that can be cured, but we embrace it as part of who he is and love him more than anything. We know that Braxton is full of life and spirit and joy.

Braxton

Today, Braxton’s sister is his biggest supporter and the bond they share is something incredible. The looks full of love and embraces mean the world to me.

Aileen and Braxton

Today, Braxton is at home walking and doing things toddlers do. Making messes, getting in to things he isn’t supposed to, taking all of the dishes out of the cabinets and drawers, climbing the stairs, crying when he doesn’t get his way, and so much more.

 

Braxton, doing typical toddler things, like climbing on the oven. (It wasn't on and it's now locked and secured)

Braxton, doing typical toddler things, like climbing on the oven. (It wasn’t on and it’s now locked and secured)

Today, I only cry on the hard days. The days when Braxton won’t stop crying and I can’t figure out why because he doesn’t have the words to tell me.

Okay, I take that back.

I still cry a lot, but there are more happy tears than sad. Especially when things finally come together and Braxton makes progress. Like when he recently learned how to use his Communication App (Speak for Yourself) to request hugs and kisses and in a matter of a few weeks it’s expanded to requesting other favorite toys and activities.

Today, believe it or not, I share OUR success story with others. I’ve shared our story through our blog, on tv, on radio shows, in newspapers (take a look here to see!), and I’ve even given presentations at conferences. I even have a pending webinar where I will talk to professionals about the family perspective and tips for making the experience better for families in those early stages.

Our first visit to KXAN for Feeding Tube Awareness Week.

Our first visit to KXAN for Feeding Tube Awareness Week.

Today, our family is not alone, we are happier, stronger, and full of life, love and laughter. What a difference from 4 years ago.

family-4

Our little family ❤ (Photo by Grease Man Photography)

 

4 years ago, I would not have believed we could be where we are now.

Today, I still don’t have all the answers to what the future holds, but I’m no longer scared and look forward to the adventures that are still to come. Some days I don’t have it all together, but we make it through the day and try again the next. We take it a day at a time, choosing joy every step of the way.

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Letting Go Of The Guilt

I worked on my “Letter to NICU Parents” for a few weeks and even after I wrote it, I read it about 20 times.  Then, something jumped out at me. I left something really important out.  A feeling that I felt then and occasionally still haunts me. A feeling I’m sure lots of new parents in NICU feel.   (And probably some people who are years into the journey).

Guilt.

The idea that I must have done something wrong for this to happen to my child.  Not necessarily Karma coming back to bite you, (although I think some people go there as well). But, when you learn that your child has a congenital anomaly or some kind of change in their gene structure, you immediately feel like it’s your fault.   After all, it’s genetics, right? And genetics are passed on, so it must mean it came from you.

New parents, I want you to know that you didn’t do anything wrong.  You didn’t do anything to “deserve” this.  These things just happen and its just the right combination of genes and circumstances.

Mom and Brax in NICUI remember sitting there in the NICU not wanting to tell anyone what was going on because they would automatically assume that I didn’t take care of myself when I was pregnant or that I had done something that wasn’t safe.  In reality, I took better care of myself while carrying Braxton than I did when I had my older daughter.  I ate better, drank less caffeine, drank more water, exercise – eh not so much, but overall I did a better job.

 

Dad and Brax in NICUI remember talking to Joseph and over and over he said it was his fault.  He felt that maybe his job exposed him to radiation and he brought it home and passed it on to his son.  He works in the oil field and while radiation exposure is possible, it’s really not much worse than what we are subjected to every day.  He thought maybe it was due to his past battles with drugs, but other than alcohol, he hadn’t touched a drug in years so there was no way possible that could be the cause.

Then, finally, a few months after our NICU discharge, we got an appointment with the geneticist.  Talk about a guilt trip.  The first genetics appointment can be a little intimidating.  They want to know EVERYTHING and I do mean everything about your life story.  They want family pictures of anyone who might look like your child, if anyone had any congenital anomalies in the family tree, heart conditions, if anyone had a stroke under the age of 50, medications you took while pregnant, any traveling you did, and it just feels like the barrage of questions never ends.  By the end of it all, you’ve got a list of everything on your side of the family and everything on your significant other’s side of the family, and whether you want to admit it or not, subconsciously you look at the list and compare it – who has more things “wrong” with their family? Who did this come from? Is it my fault? Is it Dad’s fault? Which one of us has the faulty genes? Is there something I could have done to prevent this? Wait, Is it the doctor’s fault? Should he have seen something in the ultrasound? The internal questions never end.  You go on with your fears and your uncertainty. You try to hush the voices and just be grateful for the little boy or little girl you have in front of you, but the guilt lingers.

Guilt is like a ticking time bomb.  Just sitting there, stirring at the back of your mind, waiting to cause a fight.

When our geneticist finally told us she wanted to move forward with Whole Exome Sequencing I just knew this was going to give us the answers we needed.  When the counselor explained WES only provides a clear diagnosis for about 20% of those who are tested, that confidence wavered.  Four months of waiting was excruciating.  After 18 months, what’s another 4? But, when you are waiting on test results, it’s like the last hour right before you are supposed to get off work for vacation – it. takes. for-evv-errrrr. It feels like an eternity.  And again, subconsciously you hope it eases the guilt.

Our appointment to discuss results finally arrived 4 months after testing.  We were nervous, we were shaken, we were scared.  We could finally have an answer or know a whole lot of nothing.  Genetics is an area that is really difficult to understand.  There isn’t really a cut and dry kind of situation.  There seems to be a lot of gray areas.  We received our report and as the geneticist went through each of the variances, that imaginary checklist came back.  Variance number 1 (blah, blah, explanation, blah, blah) Mom is also a carrier.  Variance number 2 (ugh that’s one for me, blah, blah) Mom is also a carrier.  Variance number 3 (crap, it’s all my fault, I knew it was, blah, blah) Mom and Dad are carriers. Variance number 4 (ugh, he’s going to hate me, blah, blah) Dad is a carrier. Variance number 5 (ugh, now he thinks it’s all his fault, blah, blah) Dad is also a carrier….and so forth and so on until we finally reached the end of the report and both stared blankly tallying up our imaginary checklists.

Then, the geneticist finally goes on to say that these particular variances are what they call “Variances of Unknown Significance.” Genes that are known to cause deleterious conditions, but since mom or dad are also carriers it could just be the gene passing down without any issues or there could be issues later, she couldn’t really say for sure.  There was one gene that neither of us were carriers for and it was the one gene that explained all of Braxton’s issues.  This variance is known as a de novo mutation, meaning new, meaning that no one in our family is a carrier, meaning that it was no one’s fault, it’s just something that happened. The geneticist also explained that every single person in the world has gene variances.  If they performed WES on anyone, a whole list of genes would show up even in “perfectly healthy” people.  This is that gray area.  Some genes require that both parents be carriers in order for a disorder to appear, but how do you know that before you have a child? Are we supposed to just go around performing genetic tests on everyone before they have children? Sure, might seem like a good idea, but it’s not logical.

The fact is, there are lots and lots of babies who are born without any issues who carry all sorts of variances. And then there are some babies who have just the right variance to cause things to be not quite right.  Is it fair? No. Is there anything you can do about it? Well, not really.

For future children? Maybe.  Once you learn of a genetic variance, you can find out if it is something that can be passed on or if it is something that is a one time deal.  For us, we know we have a less than 1% chance of having another child with Rubinstein-Taybi Syndrome.  But, we also know that we are both carriers for a gene that causes deafness, so it is likely if we had another child that they would also have hearing problems.  Likely, but we are not completely certain.  Herein lies the issue with genetic testing.  How much is too much information? Do we really need to know all of the genes that are mutated? Does the doctor have the right to withhold genetic information that “we don’t need”?  But, those are all questions for another topic and another day.

We are grateful for the Whole Exome Sequencing.  It gave us the answers that we needed. I know that it doesn’t work that way for everyone.  Some people just get a list of genes and the doctor says “Well, here are all the variances we found, but we aren’t really sure how that fits your child’s picture” Say whaaa??  Those parents are still left in the dark, still searching for answers, still blaming themselves or looking for someone to lay blame with.  To those who are still searching and to those who have found answers, I have to say – stop blaming yourself.  Stop blaming your significant other.  There is nothing you could have done differently.  You might think you could have chosen a different partner, but who is to say that would have changed anything? Perhaps you would be fighting a different battle? A bigger battle? You never really know and playing the “what-if” game gets you nowhere.  Just angry and alone.

So, to all the parents in the NICU (and even some of us veterans) take a deep breath and let it go.  Yes, it is easier said than done, but you have to let it go.  Let the guilt go.  You are not a bad person, a bad parent, someone karma was after, someone God was after – nothing could have changed the circumstance.  Let go of the guilt so that you can move forward.

It is not your fault.  

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Letter to the NICU Parent Who Feels Out Of Place

When people talk about the NICU journey it is usually in reference to children who were born prematurely, but what many don’t know, is that there are many children who were born full-term (or pretty close to it) who end up in NICU due to congenital anomalies or other health issues.  We fall in to the second category.  I recently saw that a local non-profit requested letters to NICU parents from those who have been there that could be handed out as a welcome to families and to ease fears.  I knew I wanted to contribute because it seems like families in NICU for anything other than prematurity often get left out and feel like they don’t belong.  If I could hand a letter to parents in the NICU, this is what I would say to them. For those who also share this experience, what would you add? 

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For parents of children in NICU who were born full term with congenital anomalies.

Dear NICU Parent,

First and foremost, Congratulations on the birth of your beautiful baby boy or girl!  Secondly, I’m sure this has already been quite the rollercoaster and is not at all what you were expecting.  Take a deep breath and know that YOU ARE NOT ALONE.  I have sat exactly where you are and felt many of the same emotions.  Our journey may be different, but we have many, many shared experiences.  I hope this letter helps to ease your worry and helps guide you down the first few steps of this new path.

Brax in NICU My son, Braxton, was born full term and we had absolutely no idea we would need to be worried about him once he was born.  Honestly, it was several hours before we knew anything at all.  To our knowledge, we had a perfectly healthy 8-pound baby boy.  Then, the neonatologist came in and our perfect little world came crumbling down.  She told us that our son’s blood sugar was very low because he would not take anything by breast or bottle.  She continued on to say that there were some features that pointed to some kind of syndrome.  His eyes were wide set, his nasal bridge was flat, his head was very small, his ring and pinky finger on both hands were fused together, and his toes were crossed.  She also thought she heard a significant heart murmur.  But, she could not definitively say he had a particular syndrome, only that he needed to be transported to another hospital to undergo testing.  12-hours after birth, my son was taken away to another hospital, without me.  I was devastated.  I’m sure you are too.

I remember sitting in the NICU thinking, my child does not belong here.  As I heard the nurse tell a mom that her son gained a few ounces and is now a whopping 4 pounds, my heart fell. Here I am with a giant 8-pound baby while the baby across from him is only half his size. I don’t belong here. I said this over and over.  I know now this period was critical in keeping my child alive and I am forever grateful to the experience in hindsight, but in that moment, I dreaded everything about it.

My son spent 3-weeks in that NICU and had a g-tube placed and many tests done to determine the genetic cause of his abnormalities.  The testing in NICU had no results.  We learned of some conditions that affected his eyes, heart and brain, but we had no cause and no prognosis.  After discharge, we began the marathon of therapies and specialists to help my son develop and to give us answers about what was causing his condition.  Braxton was 21-months old before we had an official diagnosis.  Now, he is almost 3 and doing extremely well.  Much better than the neonatologist who first saw him ever expected.  He is almost walking, he is finally eating by mouth and rarely uses his g-tube (we were told he’d need it for life), and he has taught us so much.  We were deathly scared and angered and saddened and every emotion that you could think of in the beginning.  We now know a joy like no other. Make no mistake, this journey is hard, but you can do it and it’s so worth it.

Here are some things I learned along the way and some I wish I had learned early on:

1.  It’s okay to grieve.  In fact, you really need to grieve.  Grief is a natural part of the healing process.  Your entire pregnancy, you were planning for this precious little girl to play dress up and create amazing art with, or a daring little boy who was going to be the next football star or karate champion.  Now, here you are in the NICU and the doctor says they don’t think your child is going to make it, and if they do they will never do anything meaningful with their life.  (We’ll get back to that in a minute.) Your whole world is crushed.  Believe it or not, you just lost a child.  Yes, the child you birthed is here and living, but the child you dreamed of has passed.  The realization that you may not get to do all the things you planned, hits you like a bus.  It’s okay for you to be sad about that, angry even.  Mourn the loss so that you can move on to caring for the child you have in front of you.  You will build new dreams.  You will find ways to make the dreams you had come true.  There are accommodations for everything.  I know of so many children with special needs who play sports, dance, do karate, swim, and so many other amazing things.  The dreams you have for your child can still come true, it just takes a little more work and you might need to make some adjustments, but it can happen.

2. No one has a crystal ball. There is not a single person on this planet that can tell you with complete certainty what is going to happen with your child.  Our doctors do the best they can with the information they have, but they cannot predict the future.  If the doctor says your child may not survive and if they do they won’t have a meaningful life, first, shame on them for saying such a thing, but second, the world is FULL of people who doctors said wouldn’t live for very long and I can tell you that every one of them has a meaningful life.  If you have a diagnosis, understand that all diagnoses have a spectrum and every child with that diagnosis is different.  The research can give you an idea of what to expect, but it is not absolute.  Just look at children with Down Syndrome.  There are children who have severe challenges, but there are also a lot of children who have only a few complications.  Many of them grow up to hold full-time jobs and live on their own.  And I’m sure all of them at some point were told “your child may never crawl/walk/talk/live on their own/hold a job/etc.”   You never know what could happen. Never, never, never lose hope.  

3. You know your child best. Yes, your doctors went to school and have many years of experience, but your child is your child and no one knows your child the way you do.  No book and no amount of experience could let anyone be the expert you are when it comes to your child.  You are the one with him/her day in and day out.  Always trust your gut and don’t be afraid to stand up to a doctor.  Believe it or not, sometimes they are wrong.  You are the advocate for your child and you will have to fight for everything they need.  Just because a doctor says “well children with X,Y,Z Syndrome typically don’t have severe GI issues, so it’s probably just reflux,” does not mean you stop there if your child is projectile vomiting their entire feed, every single feed.  There are lots of tests that can be done to investigate the issue further and just because THEY have never seen a child with X,Y,Z syndrome have the issues your child has, does not mean that it is not possible.  When in doubt, always know you have the right to a second opinion.

4. People mean well, but they almost always say the wrong thing. For us, we hated when anyone told us “Well, things could be a lot worse.” Braxton’s dad would usually quip back, “Yea, well things could be a lot better, too!” Other things like, “You know, God only gives special babies to special parents” or “God would never give you anything more than you could handle” or “he looks normal to me!” And then somewhere along the way you get promoted to sainthood with comments like “Oh, I just don’t know how you do it!” or “God sure knew what he was doing when he gave you that child.” Or “I would just die if that happened to my child, you are so strong.” Um, thanks? I’m not stronger than the person next to me, I’m just a parent and that’s what parents do.  We rise to the occasion, because who else is going to do it?? We are strong because we have no choice but to be strong. I get what people mean most of the time, but it still stings a little.  And, if you are like me, after a certain point you just want to hit the next person who says something out of place.  You learn to ‘grin and bear it’ or use the opportunities to educate the person who says the wrong thing.  Just know that even the most ridiculous things often come from some place with genuine sympathy. Also know, that sometimes people are just downright mean, and those people don’t deserve your time.  If you are quick-witted you may be able to educate them and put them in their place quickly, but most of the time you are so stunned at the sheer audacity they had to say such a thing that you just stare blankly.  If that happens, just move on, they don’t matter in the grand scheme of things.

5. You WILL learn everything you need to know.  I remember getting ready to discharge from NICU and a nurse going over operating the g-tube pump one more time and thinking how in the world am I going to remember all of these steps.  Just before discharge the nurse went through all of the paperwork with me and discussed the specialists I needed to call for follow-up appointments.  We were discharged with what seemed like, a mountain of medical supplies and a long list of people to call.   I was overwhelmed. I didn’t know where to start.  I became more organized than ever.  I made charts, spreadsheets, journals, and kept detailed records.  I created a medical records binder to store everything I needed for Braxton.  As I realized that everyone wanted to know exactly what happened from the time he was born, what doctors he saw, exact dates, exact procedures, I began to maintain a timeline.  This was very helpful in filling out the mounds of new patient paperwork.  Eventually, I created a single page document with a list of diagnoses, medications, procedures, diagnostic imaging and surgeries.  I have a spreadsheet that lists all of our doctors, their specialty, the reason they are treating Braxton, and phone/fax numbers for every one of them.  These two documents have been the single most important for us, and our doctors really appreciate the “Cliff’s Notes,” so to speak, on Braxton.  It is scary and overwhelming, but just take a deep breath and know that YOU. CAN. DO. THIS!

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you. mommiesofmiracles.com

Here is a helpful guide from Mommies of Miracles you can share with friends and family who ask how they can help you.
mommiesofmiracles.com

6. Don’t be afraid to ask for help or accept help when it is offered! This is a hard road and you simply cannot be on “go” 24 hours a day, 7 days a week.  Caregiver Burnout is very real and can affect you and your family. You need to take care of YOU so that you can take care of your child.  Don’t be afraid to ask someone to sit with your child so you can take a shower, take a nap, or step outside in the fresh air for a few moments.  If someone offers to help, let them! Give people specific tasks that help you check off your to-do list and satisfies their need to help you.  Ask someone to cook dinner for you, bring dinner to you, put gas in your car, bring you gift cards for the grocery store, or simply ask them to sit with you and learn about your child.  People care about you and they want to help, don’t shut them out.

7. Take care of YOU! This should probably be number one! It’s okay to take a step back and take a deep breath.  There are going to be many times along this journey that it is all simply too much to handle.  Understand that this is natural and you have every right to take a break.  Go get a massage, a manicure and pedicure, go out for dinner, just do whatever will help to recharge you so that you can be your best for your child.

8. Your relationship with your spouse or significant other will be tested. It’s a well-known fact that men and women process these experiences very differently.  I wanted to talk about all of the possibilities, talk until things made sense, or simply talk for the sake of filling the silence.  Braxton’s dad was not a talker.  He’d listen to me for a little bit, but he’d almost always zone out or change the subject.  He dealt with this in his own way. He buried himself in work and in music. BUT, he was at every single doctor’s appointment. He learned how to use Braxton’s feeding tube.  He woke up in the middle of the night to change out the formula, change Braxton’s diaper, or simply rock him back to sleep.  We became so tired that we lost time for ourselves. We stopped talking to each other.  We argued about so many insignificant things that seemed important in the moment, but I cannot recall one life altering argument that impacts us today.  Don’t let that happen to you.  Make time for each other.  Get a sitter, respite nurse, or close family member to stay with your child so you can spend time together as a couple.  Have a date night and don’t feel guilty about it.  If all else fails, don’t be afraid to go to counseling and find each other again.  Do everything you can to remain a team, but just know that sometimes things don’t work out and that’s okay.

9. You will find your faith, or you might lose it.  I have seen both sides of this coin.  People who learn to see God in their lives through the miracle that is their child, and people who become so angry with God, that they begin to think that He is not present in their lives because of all the hurt and struggle they have faced.  We struggled with our faith and were very much tested spiritually, but eventually we did find our way back and began to see things much differently.   You will find your own path.

10. Understand that support is critical.  We become so wrapped up in caring for our children that we often forget about our own needs.  For so long, I thought I was doing just fine.  I didn’t seek out support groups because I didn’t think I needed any.  One day, I went to a meeting with a local non-profit for children with undiagnosed and rare disorders.  I was hesitant at first and almost cancelled, but reluctantly, I went.  That night changed my life and I didn’t even realize it until much later.  U.R. Our Hope was exactly what I didn’t know I needed.  I was able to talk to other parents who shared my experiences and truly understood my journey.  We talked about doctors and how they could have the audacity to make us wait in their office for 2 hours for a 10-minute visit! I learned about resources available to me that no one had ever mentioned before.  I became empowered.  I listened to other parents tell their stories of challenging the system and advocating for their children and was in awe of the people who were before me.  I found myself seeking out more virtual support resources as well.  We live in such a digital age and I am so grateful.  Virtual support groups can be just as helpful and fulfilling as face-to-face support.  Just knowing that someone out there “gets it” makes all the difference in the world.  Don’t be afraid to look for groups in your area and just jump right in with both feet.  You won’t regret it.

A Worried Mother11. Step away from the computer! There is only so much research you can do before you drive yourself crazy.  As you learn about new symptoms, new treatments, new possible diagnoses, definitely seek out information, but don’t waste all of your time on the Internet or in the library trying to memorize everything.  You will burn yourself out and miss out on precious moments with your baby.  You will also start to worry about things that might never happen.  Some research is outdated and does not paint a nice picture.  When we finally received our official diagnosis, I did some research and I did not like what I read.  By this time, I had started blogging about our journey and when I shared our results and my research, someone reached out to me and said, “Hey, my son has this same syndrome and I know many other people as well.” I immediately reached out and asked to connect with everyone.  I found a Facebook group and began to make connections.  I learned that some of the children were playing sports and doing some truly incredible things.  Many of the children were nothing like the research I had read.  Hope was restored. When you do research add “Parent support for” in front of the diagnosis and that will help you find the support groups or blogs or just real life people who will gladly share their story with you.

12. Don’t isolate yourself or put limitations on you and your child.  Unknowingly, we sometimes hold our children back because of our own fears.  We did not go out to eat for quite some time because we were scared of what people would say if we had to feed our son with his tube in the middle of the restaurant.  Only one of us would go to the grocery store or run errands because we didn’t want to interfere with a feeding time.  We turned down friends invitations for dinner and parties. We kept our older daughter from doing things because of her brother.  I quickly realized this was making her resent him instead of wanting to build a bond with him, so I had to find ways to give her the things she wanted so she could still have her ‘normal.’ You and your child deserve to do anything you would normally do if he/she did not have special needs.  Tube feeding in a crowded restaurant is totally acceptable. At the park? At a birthday party? At Church? Absolutely! Always try to place your child in the least restrictive environment.  Don’t feel like you can ONLY go to special needs parks or attend special needs activities.  Try the regular park, try a regular dance class or baseball team.  Sometimes all it takes is a few simple adjustments and your child is dancing and playing right next to his or her peers as they should be.

Choose Joy Everyday13. Always choose joy.  Joy is a choice.  It is a conscious choice that you have to make each and every day.  When you are going through a rough time, take the time to grieve, but pick yourself up and choose joy.  This whole experience is only as good as you make it out to be.  YOU control the mood and outcome.  The things you choose to focus on are the things that begin to consume your life.  You can choose to focus on the bad things that are happening, have happened or will happen, or you can choose to focus on the positive things that are all around you.  Take some time every day to think about the good things that happened and the things you are grateful for in your life.  Slowly, a positive attitude will come easy and choosing joy will become second nature.  And then something even more amazing will happen; the joy will pour out of you and into the lives of others! I know that right now, this seems ridiculous, but trust me, you will get here.  The fear and the sadness and the anger will subside.  Sometimes those feelings will come back, but every time you will be better prepared and you will notice you spend less time with those feelings and more time with joy and happiness.

Congratulations again on the birth of your beautiful child!  I know things are scary right now, but eventually everything will be okay.  Don’t be afraid to reach out to someone who has been in your shoes.  We remember what it’s like and we want you to stand beside us, so we will gladly reach out our hand to you and pull you up.  We will walk this path with you and help you find your footing.  From this point forward, you are never, ever alone.

All the best,

A-once-scared-NICU-mom-who-didn’t-feel-like-she-belonged-on-this-journey-either

 

//edit: After writing this letter, I realized that I left off one VERY important piece of advice for parents of children with congenital anomalies. It’s not your fault! Read more in my post “Letting Go of the Guilt.”

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Simply click to vote! It's THAT easy. Then feel free to browse some other really great mommy blogs. Thank you!

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Filed under Family, Kids and Family, Life, Special Needs Child

The Early Days (Part I)

Today marks 2 years since Braxton’s discharge from the Neonatal Intensive Care Unit (NICU).  As I mentioned in a previous post, I’ve re-lived those first few days over the past few weeks and although I’ve written about bits and pieces throughout the past year, I finally decided to write everything from the beginning.

Here is Part 1 of The Early Days – All About Braxton’s NICU Stay

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2 years ago, nothing could have prepared me for this journey. I clearly remember leaving our apartment at the crack of dawn, we arrived at the hospital, I got checked in, changed, did all the last minute tests and was hooked up to all the monitors. I waited what seemed like forever for the Dr. to come in and say it was time to go. We were having a scheduled C-Section because my 1st daughter was CS when she stopped responding to contractions (perfectly healthy now by the way) but my Dr. and I decided I should have a repeat CS to avoid any complications.

Nervous, anxious, and excited I walked back to the operating room. My daughter ran up for one last hug, she was terrified that a baby was being cut of me. I never explained in detail (she had just turned 6 at the time), and although I tried to reassure her, she was still scared of mommy being hurt. Reassured her one last time, and off I went.

Everything went well. At 7:58 am Braxton Joseph was born weighing 8 pounds 8 ounces and measured 21 inches long. We had a healthy baby boy and we were beyond excited.

Meeting Braxton for the first time

Meeting Braxton for the first time

 

I was wheeled over the the recovery room and waited for the nurses to finish their preliminary check on Braxton. Finally, they brought him to me to see him and try to feed him. We fell fast in love with our little boy.

Holding Braxton for the first time.

Holding Braxton for the first time.

But slowly, things unraveled.

I couldn’t get Braxton to breastfeed. He was coughing and sputtering everywhere. I thought I was doing it all wrong. I’ve done this before. What’s going on? The nurse came and tried to help and then she took him from me to the nursery. She said they’d bring him to me after while and told me to rest. My doctor brought Aileen in because she was really worried and wanted to make sure I was okay. After a while they wheeled me over to room where my family waited.  We all anxiously awaited the nurse to bring him back.  Dad and some family walked over to the nursery to try and see him.

Dad hanging with Brax in the nursery.

Dad hanging with Brax in the nursery.

A while passed and everyone returned, but I hadn’t seen my son. I called the nursery and asked them to bring Braxton to me. The nurse came and said she would be back to take him to feed. I was devastated. They formula fed my child despite my wishes to breastfeed and they weren’t going to let me try again. His blood sugar had dropped dangerously low and they were unable to bring it up with formula and were going to keep formula feeding him until his blood sugar stabilized. He was asleep when they brought him to me. We cuddled him, gave him lots of kisses, and took a few pictures and then the nurse returned.


I didn’t realize that was the only time I’d have with him that day.

Then, the world seemed to crash down all around me.

Hours later the neonatologist came in and finally explained everything. She began explaining that they had noticed several things “different” about Braxton. His ring and pinky fingers were webbed together, his 2nd and 3rd toes were webbed and crossed, his facial features weren’t “typical;” I was immediately dumbfounded and mad at myself for not noticing. What kind of mother doesn’t check her child’s hands and toes? I didn’t even notice! I was mad at myself. Then I was mad at the Doctor. This couldn’t be true. My pregnancy was PERFECT. I took better care of myself this time than I did the first time around. She also mentioned that Braxton had a severe heart murmur on top of not being able to maintain healthy blood sugar levels.  A million thoughts ran through my mind in that instant and then the Dr. brought what little joy I had left to extreme panic and anxiety. She reported that Braxton was being transported to a NICU at another hospital and I couldn’t go with him. I sobbed. I was mortified. How could they take my child away? I hadn’t even really seen or held him. Neither had any of our family. Everyone waited around and never got to meet him. His sister, oh his sister! She was so overjoyed and she hadn’t even had the chance to see him. I sobbed uncontrollably. Joseph held me and we cried together. We had no clue what was happening, why it was happening or how it would all turn out.

At 9:00 pm, Braxton was rolled in to my room in an incubator. I couldn’t even hold him before he left. I stuck my hand through the small opening and held his little hand until the Doctor told me it was time to go. Shortly after, I demanded a nurse come in and help me remove my catheter and get me in my own nightgown from home. 14 hours post C-Section and I was walking around determined to be with my son. Joseph followed the ambulance to the other hospital and did all of the paperwork to get Braxton admitted while I sat in agony 13 miles away desperately waiting for any kind of news. I called my mom, who was already 40 miles away and just 15 miles from being home in San Antonio, and she turned around and drove right back to the hospital. I didn’t even know how to explain everything, but she sat with me until Joseph returned. When he came back I was a wreck. He told me everything the admitting Doctor told him and tried to reassure me that Braxton was okay. He told me the admitting Doctor had a far different story than the Doctor who had him transported. He didn’t hear the murmur the previous doc did and he did his best to calm Joseph down. We learned that Braxton would undergo several different tests that night and in the coming days. Blood tests, genetic tests, brain ultrasound, an EEG and an EKG. My poor baby was going to have to go through all of this without me.

All I could think about was seeing my son. I saw him all of 20 minutes his first day in this world and I will never forget that day. How I felt, what I thought, the fear, the uncertainty, the angst.

I was released from the hospital the next evening; a mere 36 hours post C-Section. It’s amazing what will and determination can get you through. We went home, unpacked my hospital stuff and picked up some other things and drove to the hospital where Braxton was.

That night we met Stacy. I don’t know her last name or if she even still works there, but I owe so much to that wonderful nurse. She sat with us most of the night answering question after question. She relayed all of the test results that were available. I learned that they thought Braxton had a seizure just before he was brought to me to be transported. The Doctor never told me this. But that’s why the EEG was ordered. I was mad at the doctor for not telling me. I knew it was because I was already highly emotional, but still I should have been told. Thankfully, the EEG was read as normal, but this is when I first learned that Braxton had unusually high muscle tone. Just before transport, because of his high tone he was very stiff and rigid and his hands were fisted and turned in, making the doctor think it was a seizure. Maybe it was, but it’s possible it wasn’t. I don’t remember how long we stayed that night, but I remember Stacy. I remember her sincerity, her honesty and her passion for this job and the little lives in her care. She helped me through the wires to hold my son, really hold him, for the first time in over a day since he came in to this world. She talked to us about the nasal gastric tube being used to feed him. She helped Joseph change Braxton’s first diaper. Something I wish I would have caught on camera, but it’s forever embedded in my heart. Joseph was so nervous and afraid of pulling off a lead or the IV. He used about 10 wipes for that first diaper change. Haha, welcome to the dad club. There were tears, there were hugs, there were kisses, and surprisingly there were laughs. Simply put, there was hope in the room that night. Hope from Stacy, hope from Braxton making slow progress, hope in our laughter, hope from the on-call Doctor that they were going to find us answers.

Those first few weeks were such a blur. We split our time between the hospital and being home with my older daughter, trying to find a way to explain it all even though we had no idea ourselves what was going on.

A FISH for Trisomy 13, 18 and 21 found no variances in those chromosomes.  A full chromosomal analysis also came back normal.  I thought we were in the clear, but the doctors were all convinced that something was very wrong. Every syndrome they threw at me had a life expectancy of less than a year. As the test for each syndrome came back normal, I breathed a little easier, but every time, someone was there to tell me not to get my hopes up. But, in those first few weeks, hope was all I had and I held on for dear life. As Braxton began to stabilize his blood sugars and regulate his body temperature he was transitioned to a less urgent level of the NICU. He was tested time and time again with a feeding team because he was still not able to feed properly. I pumped breastmilk fervently and brought with me everyday what he needed. He failed his feeding trials and swallow study several times. Braxton had already regulated his blood sugars, was able to maintain his body temperature on his own, and he was gaining weight. Feeding by mouth was the last piece we needed to go home. At 2 weeks old the doctors decided Braxton would need to go home with a feeding tube. We discussed the options and ultimately decided to proceed with a gastrostomy tube because it was evident that Braxton would need the tube long term.  Admittedly, we thought he’d be without it in no time, but looking back, the doctor knew it wouldn’t be so quick and that’s why the g-tube was decided upon. Braxton had his G-tube placed at 2 weeks old and we spent the next week learning how to care for him and how to use the feeding tube.

I had the opportunity to room-in on his last night. The hospital had rooms set up that were basically like hotel rooms where parents could stay on the last night to have hands-on “practice” to make sure they’d be okay before getting sent home.  Braxton’s crib was wheeled in and I got to hold and play with him. I was able to set up his feed with a nurse on hand just in case I had any questions.  We made it through the night. Finally, we were able to go home.

After 3 long weeks we were discharged with a list of symptoms, a list of doctors and therapists to call, a load of supplies, but no definite answers. Despite everything we went through in that time, the journey had only just begun.

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The Day Braxton Became a Super Tubie

Since Braxton’s 2nd birthday I’ve been reflecting back on the past 2 years and the journey thus far.  Part of me is re-living every single day all over again and the other (larger) part of me is celebrating every day and the wonder that Braxton is. It’s all very bittersweet. I was also asked to write a guest blog post for another site about our story thus far and I thought it would be a great opportunity to write through many of the emotions I’ve been having lately.  However, when I went to submit my piece I found that the limit was 3 paragraphs and I had written well over 6 pages about the last 2 years.  I’ve been thinking about sharing the piece I wrote here instead, but then I thought instead of sharing it in it’s entirety, I will share it in pieces as I go through each of those early days again.   I didn’t start this blog until Braxton was about 13 months old, so there is a lot about his early days that I barely touch on in most of the posts.  While it will be good therapy for me, it will also be a good opportunity for you to see just how far Braxton has come and get to know him even better.

Logically, I’d start from day 1, but today, I’m remembering the day Braxton had his very first surgery at just 2 weeks old.

2 years ago today Braxton had surgery to have his G-Tube inserted.  I vividly remember everything about that experience.

Here is Braxton with the NG Tube

Here is Braxton with the NG Tube

Braxton had failed several trials with a feeding team who reported his poor oral tone made him difficult to feed.   A swallow study was also done and the test revealed that Braxton was aspirating everything he was drinking.  Each time he swallowed, the liquid filled his lungs instead of his stomach.  As this was very dangerous to his health, Braxton was being fed through a naso-gastric (NG) tube, which is a tube that goes from his nose straight to his stomach.  This of course made sure his food was going where it was supposed to.  Within his first week Braxton was able to regulate his blood sugars since he was getting his nutrition through the NG Tube. He was also gaining weight since he was actually getting everything he needed, and he was regulating his body temperature on his own as well. Each of these a critical step in Braxton being allowed to go home.

One morning, we walked in to see Braxton and the nurse stopped us almost immediately and told us the doctor needed to speak with us.  She paged him and we visited with Braxton as we waited.  When he arrived, I remember the doctor explaining to us that Braxton had reached 3 key goals that had to be met before his release.  The final piece was feeding.  Due to his failed feeding trials and the aspiration revealed on the swallow study, the doctor sat us down and discussed our options about feeding so that we could finally take our son home. The first option was sending him home with the NG-Tube and bringing Braxton back to work with the feeding team.  He went on to say that he really didn’t think this was ideal because an NG-tube was only meant to be temporary and based on reports from the feeding trials, Braxton was really going to need a lot of work.

The doctor showed us how the button would be placed through the skin to the stomach.

The doctor showed us how the button would be placed through the skin to the stomach.

Then, he told us about the Gastrostomy Tube (G-Tube). He drew a picture to explain it to us and told us this would be the best option so that Braxton could get the nutrition he needed and be released to work on feeding at home.  If the NG-Tube was temporary, in my mind, the G-Tube meant permanent.  I remember the fear we both had thinking Braxton was going to need this forever. It was also the first instance of realizing that Braxton would be different forever.

We went home that day and I researched G-Tubes and tried to wrap my head around it all.  I could not grasp the idea of a feeding tube.  What would it really look like? How exactly would we feed him? I felt it would all be so cumbersome and we’d never be able to go anywhere and if we did, everyone would see his tube.   I was mortified.  Would we look like failed parents? What would people think? What would they say? How would he be treated? I think those thoughts scared me more than the thought of the tube itself.  I could not find a single reason NOT to have the tube placed, and if it was really what would be best for him, it felt like it was the only thing to do.

The next day, we returned to the NICU and spoke to the doctor and had him explain everything again. One of the nurses also called someone to come and give us more of a hands on demonstration.  I remember the nurse bringing in “G-Tube Gina.” It was a doll they put a feeding tube on.  The nurse showed us exactly what the G-button was and the extensions and explained the procedure.  We felt a little more at ease about moving forward with the procedure, but still  we were scared about having to handle it all.  Within a few days, everything was set with the pediatric surgeon to come in and do the surgery.

Monday, July 11, 2011 we arrived at the NICU to see Braxton before his surgery.  We met with the pediatric surgeon and he again took the time to explain the procedure.  He would make a small incision below Braxton’s belly button and insert a small camera to guide him.  He would then have to cut through his belly to his stomach and insert the button.  It was a relatively simple procedure, but to a frightened mom and first time dad they may as well have been cutting off a limb.  I remember sitting with Braxton after he received the anesthesia and not being able to hold him.  The nurse told us he needed to be relaxed and that we could only hold his hand and no soft strokes or gentle touches.  We sat with him until it was time to go. I wasn’t able to go with him.  He was again wheeled off away from me and I just had to sit and wait.

The G-button

The G-button

The surgery really didn’t take very long at all.  The doctor came back up and reported that Braxton had done well with the procedure and the team was brining him back up and we’d be able to see him in just a bit.  I remember going back to the NICU room and seeing Braxton just waking up from the anesthesia.  The nurse showed us the button and went over some instructions on how to use it and how to clean and care for the button.  We were handed a folder with pictures, information and instructions.  Braxton’s feeds had been slowed down and with the new placement of the button we had to work our way back up to full feeds.  He was only given a very little amount every couple of hours to make sure he was able to tolerate the food plus the balloon taking up space in his tummy. The recovery time was 2 weeks.  However, instead of keeping Braxton the whole time, they told us they would keep him for the first week and then let us finally take him home.  The first week was critical in the healing of his stoma (the hole in his stomach around the tube) and it was very important the tube did NOT move at all or be wet.  The nurses were able to keep an eye on him and keep him from getting infected and the surgeon was easily able to come over and check him out each day.

Every day we visited they should us how to set up the feeding pump and how surprisingly simple it would be to feed Braxton.  A few days after surgery a representative from a medical supply company came to the hospital to actually give us the equipment we would take home and show us how to use it.  I was so nervous and scared learning about everything.  Joseph had already gone back to work so I really had to pay attention because I was going to have to teach him too! The learning curve was steep, but fortunately I did learn what I needed in that first week to be able to take Braxton home finally.

Looking back as my present self I can’t help but chuckle a little bit.  If I could go back to that time knowing what I know now I would laugh at myself and all the worry and stress that I had during those first couple of weeks.  Yes, it’s very scary when people start throwing terms around that you don’t understand, but it is really all going to be ok.  If I had told myself then that in no time you will be an expert I would have never believed it.

Braxton just hanging out with his tube

Braxton just hanging out with his tube

Braxton’s tube is now such a NORMAL part of our life I don’t even give it a second thought. When I run down the list of medical symptoms and equipment I often forget to mention his feeding tube because his tube is as much a part of him as his arm or his leg.  It’s funny when we see a different doctor at the pediatrician’s office and I have to run down a quick summary for them and then they lift his shirt to listen to his chest and say, “Oh, he has a feeding tube?” And I’m like “Ohhhh yea I forgot to mention that…oops” I forget that it’s different. As worried as I was about Braxton being different forever, I’ve now come to see absolutely no difference it all.   It’s just the way life is.  It’s our normal. His feedings have become second nature to us now and I never would have thought that sitting there in that chair 2 years ago as the doctor told us Braxton needed a G-Tube.

2 years later, we are pretty much experts with using his G-tube, caring for it and troubleshooting when necessary.  We’ve come a long way as parents since then and Braxton…well, Braxton is a completely different child than that little boy I held in the NICU.

Braxton began to really thrive after having his G-tube placed.  He gained weight a little too well and there were lots of adjustments in the beginning trying to find the right amount to feed him.  It was a little different trying to get the right sense of what he needed.  Typical kids will tell you when they are hungry and they eat until they are full.  A tube fed child doesn’t really know what it means to be hungry because they are kept on such a schedule.  There were days we had many appointments and we were an hour or two late with his feed and Braxton was just content.  No crying or fussing from being hungry or anything.

I didn’t realize it then, but his tube saved his life.  Without a feeding tube we would have taken Braxton home and continued trying to bottle feed him without success.  He wouldn’t have gained any weight.  Worse, he probably would have swallowed so much in to his lungs that we would have lost him.  I know now, his tube saved his life then and continues to help him live every day.  We are working very diligently with a speech therapist to get Braxton eat or drink anything by mouth, but having little success.  If he didn’t have his tube he would be completely malnourished and who knows what would happen. The alternative is definitely not something I like to think about.  Instead, I see a happy little boy who is indeed superhero like in every way since his first day in this world.  Braxton is a Super Tubie. A term coined by the Feeding Tube Awareness Foundation for all tubie children surviving and thriving thanks to their feeding tube.

Happy Tubie-versary, little man!

Super Tubie, Braxton

Super Tubie, Braxton

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