17 Days

17 days... that's how long Henry was in the NICU at Cincinnati Children's Hospital. While in the midst of our stay in the NICU it seemed like it was never going to end but now on this side of it I found myself saying we were "only there for 17 days". There are babies that arrived in the NICU weeks before Henry and they are probably still there. I had no idea what to expect of the stay in the NICU but I can tell you our stay in the NICU was nothing like I assumed it would be. I will never forget what it was like being in the NICU for 17 days. The sights, the sounds, the smell the experience is burned in my memory forever.

The first time I saw Henry in the NICU it hurt my heart to leave and head back to the hospital where I was still working on recovery but each day it got a little easier and a little easier. We would stay for a few hours at a time, take a break and then go back for a few more hours. I think the thing that made it easy for me to leave Henry were the nurses. These woman (and men, although Henry never did get a male nurse in the NICU) come along side of your family in the midst of the chaos and they provide stability they provide guidance. I felt a great sense of peace when I would walk away from Henry's bedside each night because I knew he was being cared for by people who cared about him. I cannot speak enough about the Doctors, Residents, Fellows and Nurses that followed Henry while in the NICU they made our stay a little less anxious.

Next to bringing Henry home the greatest thing I walked away from the NICU with was a new perspective. Simply put: Henry just has Spina Bifida. I never thought I would get to the point so quickly in this journey where I would find myself thanking the Lord for Spina Bifida. But when you spend 17 days looking around the NICU and you see babies that weigh little more than a bag of potatoes and they have tubes coming from every nuke and cranny of their tinny bodies, it changes you. You can't walk away from the experience unchanged - you just can't. You go into it not knowing what to expect but leaving with a huge dose of humility. You see other mothers sitting in the waiting room with what looks to be the weight of the world on their shoulders because they've just been told there may be no hope. Or you see babies without their mothers because they have been flown in from other cities, states, and even countries.  You hear alarms going off and nurses who go running into other pods and you find yourself just humbled before the eyes of the Lord.

I spent 17 days sitting in the NICU praying for healing over my son but finding myself also praying for healing and hope for each of the families I met while there. I know there are always going to be people who will look at our life and think "I don't know how they do it - it must be so hard." I know there are going to be hard days, hard conversations, waiting rooms, hospital rooms, MRI images and words that are too big for me to comprehend or spell, but it is my prayer that I would always ALWAYS be able to check my attitude at the door because it's just Spina Bifida. I was able to bring Henry home- not every mother that leaves the NICU has that opportunity.

"Therefore if you have any encouragement from being united with Christ, if any comfort from his love, if any common sharing in the Spirit, if any tenderness and compassion, 2 then make my joy complete by being like-minded, having the same love, being one in spirit and of one mind. 3 Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves,4 not looking to your own interests but each of you to the interests of the others." Philippians 2:1-4

-Erin-

Surgery # 2

We knew after Henry's MM closer surgery that the likely hood that he would develop hydrocephalus (hydro for short) that would need to be controlled by a shunt was about 90%. Before the closer surgery Henry's body was processing cerebrospinal fluid through the opening in his back, once it was closed the excese fluid had no where to go so it started building up around Henry's brain causing the ventricles in his brain to swell.

Each day after Henry's MM closer you could see his head getting a little bigger, a little softer, and you could see he was opening his eyes less and less and eventually the pressure build up was causing Henry to have breathing problems. So they had to put him back on oxygen. It was 10 days after Henry's arrival into this world that his neurosurgeon decided a shunt needed to be installed so I watched them wheel him back into the OR for a second time. I don't care how minor the procedure or how long your child is back in an OR it is still an agonizing feeling when the nurse says "this is where you have to give your hugs an kisses".

During the 2 hour surgery Henry's neurosurgeon placed the shunt in the right lateral ventricle of Henry's brain. Henry has 3 incisions from the installation of a shunt; 2 on his head and one on his belly. The shunt sits in the ventricle and has a mechanism that essentially functions like a dam for the cerebrospinal fluid; the tube continues down the side his head, behind his ear and then eventually ends up in his stomach where the excess cerebrospinal fluid is absorbed by his body.

You could almost instantly see the change in Henry's head once the pressure was under control with the help of the shunt and each day since you can see his head decreasing in size. If I am being honest Henry's shunt makes me extremely nervous, but when you here that 85% of them fail with in the first year I guess you get the right to be nervous. My prayer is that Henry's shunt will work and that a revision isn't needed until he is older and the tube in his belly needs to be longer.

As a mom you hate hearing the words "not if his shunt fails, but when it fails...". But I also know that I can't live in fear of his shunt failing. It would be very easy for me to cling to those words and be hypervigilant in looking for signs that his shunt is failing but if I allow myself to always be looking for what's going to go wrong next I will miss the moments right in front of me. Which I think is true in other aspects of life not just when it comes to my child and his VP Shunt. I know the warning signs, I know what to look for but I need not to worry my days away with every sigh, sound or look he gives me.

And which of you by being anxious can add a single hour to his  span of life? Luke 12:25

-Erin-

A Day of Firsts

Tuesday March 5 was a big day for me!

Holding Henry

For the first time on Tuesday March 5 I was able to hold Henry. Because he is required to be side laying or on his stomach the way they have to position him for us to be able to hold him means he has to lay right on your stomach/lap. Having just had a c-section it had just not been feasible for me to hold him comfortably because the weight of our chunky monkey was too much on my incision.

Not being able to hold Henry for almost a week was more emotional than I thought it would be. I don't really have the words to describe what it was like to hold Henry for the first time, so rather than elaborate with words what it was like, I will let a picture do the talking for me.

Catheterizing

Henry was born with a perfectly healthy urinary tract system. Because the bladder requires functional nerves in the lower spine (sacral spinal cord) in order to have control over urination only about 5 to 10% of children with spina bifida have normal urinary control and are able void spontaneously. The nerves in Henry's lower spine does have some level of paralysis. Because of the location of Henry's Spina Bifida his brain is unable to communicate to his bladder that it's time to potty.   These nerves sense bladder fullness and transmit this message to the brain. In order for Henry's bladder and kidney's to remain healthy we have to catheterize him. Which means a small, sterile, plastic tube is inserted into Henry's bladder to help him void urine.

When Nathan and I chose to have Henry's care handled by the team at Cincinnati Children's Hospital we knew that their urology department was very strict about cathing children with spina bifida early and often to prevent long term damage to the kidneys. I would say that secondary to Henry's surgical procedures this was the thing I worried about the most. Some days it would consume my thoughts when I would read about incontinence in children with Spina Bifida. And not for the reasons that one might assume. I was worried about hurting him. I am clearly not any type of medical professional so doing something like catheterizing my child freaked me out.

But as with many things in life learning to cath Henry was a teachable moment. I worried myself silly about this aspect of Henry's life and when the moment came I thought to myself: "really that's it--that's all I have to do?" My dad tells me all the time that the things I worry about never happen. Here I am just knowing that I am going to poke hole in my child or give him some deadly infection because I'm not a nurse but honestly it was EASY! And now I am pretty much a professional. How often I do this with other things in my life?!? The place that worry takes me is so far beyond what actually happens that you would think that I would have learned by now that worry gets me no where.

So all in all, March 5, 2013 will forever be remembered as a good day for this mama.

-Erin-

Surgery # 1

Less than 24 hours after Henry's introduction in this world Nathan and my dad watched doctors and nurses wheel Henry back to the operating room for the first time. Henry was born with myelomeningocele (MM) at vertebrae L3/L4. Myelomeningocele in every day terms is known as spina bifida. 

"Normally, during the first month of a pregnancy, the two sides of the spine (or backbone) join together to cover the spinal cord, spinal nerves and meninges (the tissues covering the spinal cord). Spina bifida refers to any birth defect involving incomplete closure of the spine.

Myelomeningocele is the most common type of spina bifida. It is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal. This causes the  spinal cord and meninges (the tissues covering the spinal cord) to stick out of the child's back." Info taken from here.

While there have been great advancements in treating MM with fetal surgery, the standard of care for  babies with spina bifida is repair at birth. To hear a surgeon talk about the MM closure is like receiving the recipe for a seven layer salad. I know that sounds really bizarre for me to compare Henry's surgery to a salad recipe but it's the only way I know to describe it. They are literally, for 2-3 hours, putting each layer of his spinal cord, meninges, the skin, etc. back in place.

The precision and execution of this surgery makes my brain hurt but I am so thankful that Henry has one of the best Neurosurgery teams in the country operating on him. I am sure if any medical expert were to read this blog they would be ashamed of the way I describe the MM closer but I am not a doctor, I am a mom and it's enough on any given day for me to remember how to even pronounce Myelomeningocele, let alone describe how Henry's neurosurgeon was putting his spinal cord back together.

Henry had his first surgery while I was still recovering from the c-section at a hospital that was a good 5 minute drive away. I guess waiting is waiting but it felt really bizarre to be so far away from your child during such an important time but later that evening I was given a pass and was able to see Henry for the first time since delivery. I never actually got to see first hand the opening in Henry's back but seeing it closed seemed like no big deal. He is now 8 days post-op from the closure procedure and he has only been able to lay on his stomach or side which makes holding him and feeding him a tad bit challenging, but we have managed.

His incision seems smaller and smaller every day. I look at it now and wonder what it will mean to Henry when he is old enough to understand all of this, but looking at it now by his bedside I am not sure it will be something that ever define who Henry is. If I have learned anything about spina bifida in the last 20 weeks of waiting to meet Henry it is that nothing is off limits. Doctors will place limits on his ability based off their experience but it takes just one wiggle of Henry's toes for those limits to have already been shattered.

Doctors have been encouraged at how quickly Henry has healed from the closure procedure and they are thrilled that he is eating upwards of 90ML (4oz) at every feeding which makes his doctors chuckle. Henry is not a young man who wants to miss a mea--he is about 3 times the size of most his neighbors in the NICU.

"As for God, His way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him." 2 Samuel 22:31

 Daily I find myself taking refuge in the word of Lord because sometimes the hospital words are long and the terminology is over my head and the monitors beep numbers I don't understand but I am always reminded that the Lord's way is a perfect one and for that I am grateful.

Henry holding on to his paci and his zebra friend.