Here is a bit of our story.
Pediatrician Well Visit
As a new parent, these are words you don't want to hear at your child's well visit... "It is probably nothing, but your son's head size is off the charts and I would like to refer you to a Pediatric Neurologist."
We went to our pediatrician's office expecting the usual. Our biggest concerns were what to expect next in our child’s life. The conversation we had instead was Not.What.We.Expected.
Granted, we knew Jack had a big head. We have joked about it since the first ultrasound when Daniel pointed out the big noggin. Daniel has a big head. His dad has a big head. My dad has a big head. Jack is in good {smart} company.
However, being off the charts means you are an anomaly – even if someone has to be the one who is not average. It's hard when above average is not considered a good thing and it's your child who is fitting this criteria. In Jack's case, our doctor did say that his big head was part of what makes him so cute {we think so, too}.
Anyway, Daniel and I are not worriers by nature. We didn’t want to waste a lot of energy and time worrying about this. But it was still there. Lingering in the back of my thoughts.
I skyped my parents with the news. I told them not to worry, but asked them to keep us in their prayers. I told them not to google, because it would probably create more concern. I told them we weren't going to google, but my curiosity got the best of me and I went ahead and did a brief search. I don't want to worry, but when the appointment came I wanted to be informed.
I'm not going to lie. I cried at the thought of what this could all mean. Then I picked myself up, snuggled up to Daniel, said a prayer for Jack and did my best to let go and let God. Worrying wouldn’t make any potential problems go away.
Pediatric Neurologist Consult
We went to see the pediatric neurologist. Jack was meeting all of his milestones and was a happy baby. The neurologist measured Jack’s head. Then he measured Daniel’s for comparison. They were pretty similar in terms of percentiles for their respective ages.
The neuro made it clear that the main reason for concern was not that Jack’s head was off the charts, it was more an issue that his head had grown too quickly. It had crossed percentiles in a big way and this was definitely cause for concern. The neuro wanted Jack to get an MRI.
The mama in me did not want to do this to my little boy. But the mama in me also wanted to be sure that we were doing all we could for Jack. We discussed our options: according to our neuro, Jack was too old to do an ultrasound. We could go with a CAT scan but the odds were we would end up doing an MRI anyway. So we decided to schedule the MRI.
The official diagnosis on Jack's paperwork from the neurologist was Macrocephalia. As we left the neurologist, I googled Macrocephalia… Jack didn’t exhibit any of the symptoms of this diagnosis other than having a big head. An MRI would determine if he had Hydrocephalus or if there were any other causes for concern.
MRI
In retrospect I should have talked to my good friend who is an anesthesiologist... She would have told us what to expect and how we could have made sure that Jack had a good MRI experience. But that didn’t happen.
We scheduled the earliest scan possible at 8 in the morning. We had to be there at 6:30 and Jack couldn’t eat after midnight the previous night. He was tired and hungry. And there was no way to communicate to him what was going on. All we could do was be there and hold him.
Daniel spent a lot of time walking the halls with Jack because whenever Jack saw me he would cry from hunger.
We finally got into a patient room and the nurse came in to prep us. She was really friendly and we both liked her right away. She said they would have to put in an IV and that because of Jack’s age they couldn’t numb the area first.
If I had talked to my anesthesiologist friend first, we would have known to request that Jack be put to sleep with a mask first and if that was not possible, we could have considered other children's hospitals like Vanderbilt. But you can’t change the past.
Babies are chubby and their veins are small which makes it hard to insert an IV needle. To start, our nurse put heat packs on Jack's wrists, then it took 4 nurses to hold him down in order to try to insert the IV. During this process Daniel and I held Jack’s hand and stroked his hair. They tried for 40 minutes and Jack fought. The entire time. After 40 minutes they stopped to give him a chance to calm down.
Then came another round of trying... In the end, they managed to get the IV into his wrist. They had to put a splint on his arm to keep the IV from moving. He was so exhausted from fighting them that by the end he just lay still and cried softly.
After the trauma of inserting an IV was over, the nurses let us sit with him in the dark to help him calm down. I rocked and sang to him. He fell asleep in my arms.
They finally came in to take him to the MRI room. We were able to go with him. I held him while they started the drugs and he fell asleep. Watching him get an IV was terrible, but when the nurse told us to kiss him goodbye and leave the room, I struggled not to cry. Leaving him was the hardest thing. He looked so peaceful.
We waited in the patient room. The MRI took less than 5 minutes. We were prepared for the anesthesia to take 15-30 minutes to wear off. Before we knew it, a nurse was carrying him down the hall back to us. He was already awake.
I nursed him and he forgave his nurses. By the time we left, he was happy and even smiled and waved goodbye to the nurses who had to insert the IV.
We went to Chick-fil-a and then drove home. Our little guy didn’t nap much the rest of the day, but went to sleep at 5pm and slept through the night, only waking to nurse. He was so exhausted.
And so we waited.
The Results
We tried our best to not worry; to continue to trust in God that it would all be ok. Friends reached out to say they had similar experiences and their babies were fine. We updated our families and waited for the results.
The afternoon after the MRI, the neurologist’ office called me. Jack’s results were NORMAL. A huge sense of relief flowed over me. I cried. I am so thankful that Jack is ok.
Part of me felt guilty because I know that somewhere another mom received different news. My heart aches for the parents who receive the dreaded call with bad news. They will always be in my thoughts and prayers.
Children are this amazing gift that we have been entrusted with. They are ours. It is scary and awesome that we get to watch a part of ourselves grow up and form into little people. And we have to trust that it will be ok. I think that everyone’s ok is different. For some, ok will be really hard. But we have to trust that whatever happens, it will be ok.This old hymn has been in my head since that first doctor’s appointment:
Walking in sunlight all of my journey,
Over the mountains, through the deep vale;
Jesus has said, I’ll never forsake thee—
Promise divine that never can fail.
Refrain:
Heavenly sunlight! Heavenly sunlight!
Flooding my soul with glory divine;
Hallelujah! I am rejoicing,
Singing His praises, Jesus is mine!
Shadows around me, shadows above me
Never conceal my Savior and Guide;
He is the light, in Him is no darkness,
Ever I’m walking close to His side.
In the bright sunlight, ever rejoicing,
Pressing my way to mansions above;
Singing His praises, gladly I’m walking,
Walking in sunlight, sunlight of love.
Wow... That would have been so hard. But you got through it and Jack is no worse off for it. It's strange that the nurses wouldn't have offered to put Jack to sleep first. Perhaps it's only when requested that they do it.
ReplyDeleteThank you for sharing. :-)