Shunt Happens

October 14th

 

The Plan: Take Noah to Steven's work picnic, socialize, eat some food, then visit Steven's family.

 

What Really Happened: Late to the work picnic, half-way through Noah started screaming at the top of his lungs, couldn't find a place to sit and eat where we could park the stroller, ended up being late to Steven's family's house and THEN...

 

His back started leaking spinal fluid.

 

Icing on top of the horrible day cake? Immediately after, tornado warning. We were speechless.

 

Oh man. Talk about overwhelming. Earlier that day we gave Noah a bath and while I got ready Steven changed him into an outfit I picked out and I accused him of not drying him off enough because his onesie was wet. That was one accusation I'll always regret and Steven got a very heartfelt apology for. I called Nurse on Call and we took him to the ER for the first time. We were both very calm, cool, and collected. We both knew a shunt was going to be needed. We just didn't know when. I had researched a bunch of facts about VP shunt placement surgery and fet like I had a good grasp on what to expect. We were admitted into our first hospital room on the pediatrics floor and cuddled up on the hospital bed together with Noah by our bedside, ready for whatever tomorrow brought.

 

The next day they took Noah back for surgery to place his first VP shunt. Tears were shed and prayers were said. Everything went fine, he went into anesthesia and came out okay too. We waited a week for his shunt to heal enough to take him home and a week later we were homeward bound again. We praised God for no complications.



Our Newborn

I loved Noah without a shunt and continue to love him with one. But I just thank God for allowing us the opportunity to experience having a shunt-free newborn. Being a new mom is stressful enough. Learning how to handle your newborn, burping and feeding them introduces you to a whole new world of responsibilities. We had 2 weeks to enjoy it and live our lives "normally". No constantly looking out for a shunt malfunction, no worrying about laying them on their shunt, or even incision care.

We were really blessed to be able to somewhat "ease" into Spina Bifida. That's a positive thing about this defect. It's not even all compltely apparent at birth. Babies don't need to walk. So when they're all snug and covered up in their car seat nobody even notices your baby is any different from the next. You have time to accept what comes your way whenever you get to it. Which doesn't stop a person from worrying of coarse, but it helps.

For the first few weeks Noah slept all day every 2 hours

and woke up to eat, look around and then back to bed.

Now that Noah is older, looking back I've realized that the newborn stage is probably the hardest time when you have a baby. Your baby simply wants what it needs and then it's done with you. It took me a while to bond and feel a real deep connection with Noah. I bonded SO much with him during my pregnancy and once your baby is born you have to start the process all over. You have a face to put to the name and memories in your belly. It's all kind of surreal. But I loved every minute of it and now looking back I'd give anything to relive these moments over and over again.

Our NICU Experience

With Noah's back surgery, possible shunt surgery and other complications that could arise the hospital stay we were told to expect was 4-6 weeks long.

When did we break out?

After 5 days.

If you are expecting a Spina Bifida baby and you're reading this... I hope this post gives you some hope. I definitely didn't have any. I thought my birth experience and his NICU stay would be a sad, horrible memory. I was very very wrong. I'm not sure if it's because we made the best out of the situation that we were given or the fact that everything went way better than what we hoped... but it was one of the best times of my life. Believe it or not.

At around 7 months we had our NICU tour. All I remember from it was thinking about how awful it was going to be. How all of the babies looked so fragile and sickly. How all of the parents looked heart-broken and drained. I made it out to the parking lot before the tears came. Between the pregnancy horomones and just the fact we never imagined having a baby that needed to be in the NICU at all; it was very overwhelming.

But instead, Noah went back to the NICU after his back surgery just like we planned. PLANNED- Ahh. Such a comforting word to me. Which makes me wonder if we wouldn't have known he'd be in the NICU if things would have been drastically harder? Hmm. Anyway, Steven wheeled me down to see him and my heart fluttered with immense joy. I couldn't wait to see him again. I was so doped up from morphine and pain killers from my surgery I honestly didn't even worry about his back surgery or the fact that anything could go wrong. I mean.. the child just learned how to breathe! And he's going to go under anesthetic and have a major surgery? Maybe it was a good thing I was so drugged...

Still barely mobile they placed Noah in my arms. I just remember looking at him and wondering if he was really ours. Being a new parent is such a bizzare feeling. You know that you carried this baby for nine months, you felt it move, saw it on ultrasound, but once it's here it's like... "Wow what? Where did you come from?" I had a hard time connecting that my huge belly meant that there was a REAL baby in there!

The nurses called our NICU nurse to have us leave and come back to our room so I could take more pain medicine and I was OUT. Hence the very short, sweet "Noah is here" blog post. I was so tired and happy. We all were. Steven would take me down to the NICU and we'd be all smiles. Excited and ready to see Noah and look around to see nothing but those heartbroken, drained parents. They must have thought we were absolutely crazy. But even though this was their worst case scenario... this was our best and we were enjoying every single second.

I then started pumping for the first time. I wanted Noah to get all of the nutrients from me that he could. Especially at first. I was so excited to breast feed and knew based on our circumstances my first experience would be with a pump. It honestly wasn't bad.. it took a few days for my colostrum to come in but I was just glad that I had the chance to pump and give it to him. We soon tried breast feeding and Noah had trouble latching on... we were both learning the best that we could and finally got everything going right. Soon he was just nursing and didn't need any supplmenting at all. Definite proud Mommy moment.

His vitals all remained stable, his head ultrasound (monitoring his fluid) remained stable and we were in heaven.

After work Steven would come by the hospital and visit with Noah. His love for him was apparent at an early time too. I'm very thankful for that.

We spent a night in a care by parent room. Which was HOT, DEPRESSING and MISERABLE. If it wasn't for the fact that I actually got to take care of Noah for the first time I would have just said no and went home. Okay maybe I'm being completely over dramatic... but gosh. Imagine a hotel room with 90's furniture and decor, a small vintage tv with 3 channels, no windows and a creepy old bathroom. Noah and I laid together and nursed all evening. I loved looking at him. Just getting to stare all I wanted and take in everything about him. Not once did I think about him moving his legs. It didn't matter. He and I were alone together and that's all I wanted at the time.

The next day we went home.