Okay, shunt…you’ve got a job to do.

“That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude.” –Elder Joseph B. Wirthlin

Since Chance was born a little over a week ago I have to admit rest is not something that has come easily for me. With each new day comes an added worry, fear, or merely missing my baby boy who I wish were home with us already. I’m pretty sure that this has only complicated my own recovery, not to mention I am up either pumping milk or taking medication necessary to help me recover from my own surgery. Last night, I was up at 2am doing just that. I’ve gotten onto a routine to take medication as necessary and pumping every 3-4 hours. Yes, here’s the 2am dosage that left me eating lucky charms just after 2am to prevent getting nauseous from the medication.

meds *ugh*

I had a tough time getting back to sleep. I hear mother’s have this “intuition” when something is wrong…and I suppose that’s why I couldn’t rest. I admit it’s tough for me to lay in bed after the day prior feeling as though someone had stabbed me in the stomach so I sat in the comfortable glider in our room and wrote one or two friends who have helped hold me together the last few years. I found myself dozing off and at 530 I jumped up faster than I have since the surgery when the phone rang. Instantly I wondered who could possibly be calling at 530. It was an nurse practitioner with the NICU who called to update me on Chance’s progress overnight. Jason and Hope had left him the night prior doing quite well but in a few short hours he made some concerning progress. The fluid in his back built up more. He began to run a 99.4 fever. To be safe they began an IV antibiotic in his head and took him off all feedings. His head ultrasound performed overnight showed his ventricle measurements had increased again and they had ordered a CT scan to help his doctor see what he was challenged with. The nurse said they were preparing for the possibility of Chance going in for a shunt surgery later in the morning. The initial call was more of an update, but coming at 530 in the morning it left me anxious, emotional, and in tears worried knowing they wouldn’t call if there weren’t concerns.

A few minutes later I hear Jason’s phone going off, which was on vibrate mode, it was Chance’s doctor updating us on her plans for Chance later that morning. She felt is was necessary to intervene after giving his back time to heal the fluid seemed to have no where to go. She feared it could potentially cause two things to happen – either the sutures would continue to be challenged by the build up of fluid or it would begin to put pressure on his brain. She felt it was finally time to intervene and have Chance undergo a surgery to place a shunt to help drain the fluid from his head. It was something we all hoped to avoid, but the odds weren’t in Chance’s favor. About 90% of all spina bifida patients require a shunt in their lifetime. All the praying and optimism in the world didn’t spare him from needing a shunt. Once a shunt is placed it remains in place for lifetime unless an infection or malfunction occurs. About 50% of shunts malfunction at sometime in a patients lifetime. Chance went in for surgery just after 730 in the morning and we waited to hear his surgery went well and that it was now time for his shunt to do it’s job. I’ve been told by many who escape a shunt that leaving a hospital without a shunt can leave sometimes more worries than one being put in place. So we were ready to move past this phase, knowing that it would help him once it began to do it’s job.

We finally got to see Chance a few hours after surgery once he was transported back to the NICU and was stabilized in his new room, the ECMO room in the NICU where nurses would keep a very close eye on him until he recovered fully from surgery. Chance was a little restless, but do you blame the little guy – he had a respirator in place and looked a bit uncomfortable with all the wires. The nurse let me stand beside him and let him hold my finger. He definitely recognizes my voice…it was evident today. He opened his eyes big and wide and calmed down for a short time. All I could do was cry as I watched him look so helpless…again. He looked at me as if he was praying I’d help him take all the wires out.

The first time I saw Chance after surgery

I was permitted to take photos of Chance in recovery. For most of the morning he rested. I tried to just admire him because any time I touched him he’d grow restless and less comfortable with the respirator.

Shunt recovery

Shunt recovery

It was a tough day for Jason and I, and we sat beside Chance majority of the day just admiring him and comforting him when he needed it. As Jason did so I began to notice his shunt more…along with Jason comforting our baby boy. Yes, as he grows he will grow into his shunt…but right now it bulges from his head because he is still so tiny.

Getting some love from Daddy

Early in the afternoon as I returned from pumping, I was told by the nurses to look at Chance’s face as they smiled. As I did I noticed the respirator was finally taken out.

Look Ma...I can breathe on my own again!

Most of the rest of the afternoon he rested as the nurses managed his care to ensure he was comfortable. A few times he let us know he wasn’t happy. He got pretty fussy a few times. I took this brief video on my iPhone of him fussing letting us know he wasn’t happy.

Look Ma...I can breathe on my own again!

I think one of the most amazing things today was realizing how much my baby boy was just comforted by my presence. He would go from fussing to calming down just about any time I spoke to him.

Look Ma...I can breathe on my own again!

Look Ma...I can breathe on my own again!

By the end of the day I was exhausted. I could barely stay awake. So I curled up in a chair in the NICU as Jason sat beside Chance the rest of our time there. I’m so thankful he was interested in taking photos. He was beginning to get a bit more comfortable and was all stretched out.

all sprawled out

all sprawled out

Now we continue to pray that his shunt does it’s job. It was obvious it was working as his head where his soft spots were weren’t so poofy. In the final images Jason took you can see the shunt travels down to his belly which also will be less noticeable as he grows a bit more.

I’m a day into taking the added precaution and I wish I could say I felt better. I am waiting for the anitbiotics to kick in. Until they do their job I am on pain medicine several times a day. I noticed mid day today that one of my pain medications only had 2 doses remaining, I feared I’d run out in the middle of the night and be in pain. I hate taking medication but if I waited more than 1 hour beyond when my dosage was needed, otherwise I’d be in pain making it tough to walk, sit or stand. My feet are still swollen and I’m exhausted. I called my doctor to call in a prescription because I failed to recognize how low my prescription had gotten for pain medication. It still reminds me so much of October 2009 and I’m just praying the antibiotics kick in soon. My doctor typically needs us to pick up the prescription for this type of pain medication to help me through the next few days. Knowing we were at the hospital he instead called the on call doctor and had him meet me in the NICU with the prescription. He reassured me that he prescribed enough to help me through the days ahead and that I should be feeling better soon, but if not to call my doctor back because they wanted to keep a close eye on me if I didn’t begin to improve. I was so exhausted when I got home that once I ate dinner I crashed and slept for several hours…something tough for me to do when I have so many people to update.

Thank you all for your continued prayers. It was overwhelming to hear this news – as much as we hate knowing our little man has a shunt – we are relieved it finally has a job to help Chance and hopefully in the weeks and months ahead he’ll forget all these tough NICU moments.

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March 3, 2011 - 9:21 am

kristi peters - Amanda,
Keeping you in our thoughts and prayers today and in the upcoming weeks. Please keep us posted. Even though we have never met, I think all mothers can relate to what you are feeling and going though. I can only imagine. Big virtual love to you and yours,

March 3, 2011 - 10:07 am

Amanda Ridding - Amanda,
I have so been there! Hoping he would be the one that didn’t need the shunt. And even though in your heart you know he likely would, and you know it’s better when he’s in the hospital than to come back. It doesn’t really make you feel any better when the shunt day happens.
Hopefully this will mean one more step to coming home.
I know his shunt looks so noticalbe to you. But where is it? Is it behind his ear or above his temple? When my Nick had his – they shaved the whole area. It was all I could see for months!

The pictures of him looking at you with the respirator in his mouth is heartbreaking! I can only imagine how you felt!
I know you have facebook and baby center, but if you ever need anyone else – I’m just an email away.

March 3, 2011 - 8:45 pm

aida - Dear Amanda and Jason
My prayers are with all of you. Chance looks wonderful. Rest when you can and thank you for sharing. God Bless you all.

March 3, 2011 - 11:36 pm

Melissa L. - We continue to pray for Chance, his sweet mom and dad, and brother and sister.

My brother was born with hydrocephalus and had a shunt in place when he was just hours old. He is now 21 years old and he just finished college. He is an inspiration!

God has big plans for your little fighter. Chance is absolutely beautiful. My husband and I were just admiring his pictures. I love his cheeks!



March 4, 2011 - 5:01 pm

Paris Carter - These photos are beyond amazing Amanda. You and your family and Chance are a real inspiration for me. I will continue praying for all of you.

March 5, 2011 - 7:47 am

Melanie D. - Hi Amanda,

I know that all of us who have had babies born with SB wish SO hard that ours will be one of the 10% that don’t need the shunt. Elizabeth was able to go 1.5 weeks until we got the news. The shunt is a hard thing to stomach….but, on a positive note….those babies born 30-40 years ago didn’t have the opportunity to have a shunt and the first shunts were not programmable….technology has come so far. Hang in there and take care of yourself. You need to be healthy and strong to take care of your handsome little boy…let the hospital take care of him and yourself. It all seems so long and overwhelming now, but it WILL become a memory and a story one day (a well documented one at that!)

You are in my prayers.

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