Life as a parent.

So were getting used to early morning feeding and diaper changes. Jake makes his presence known constantly, so he's getting lots of cuddle time. I however am getting little to nothing accomplished in a day. But we're doing our best to enjoy this period of time, but it's taking a little adjusting.

We've been getting out and doing a few things, BBQ's and visiting. The cousins have been introduced, but I don't have any good photos cause Jake is always crying! Next week we're going to BC with my mother to enjoy the last week of summer. Oh ya and Jake is getting dedicated in Banff on Sunday the 26th.

I have to cut this short, once again the baby is screaming. Thanks for all the prayers.

Mel

Home Sweet Home

So I know everyone has been waiting for a in depth update of our lives, and like usual we apologize that it's taken this long. Things seem to go so fast, and yet little gets done. He's an overview of the last few weeks.

We were moved from the NICU to a close observation room on Tuesday July 24th. This was an extremely trying time for me as mom. Having your own one-on-one nursing for the first week of your child's life is a hard thing to let go. It was as if they had just abandoned me and our baby. Not that they had, but the emotions surrounding this transition was so challenging. Jake was still have periodic apneic spells but they seemed to be improving.

After a few days on the floor with continuous monitoring the pediatrician doing rounds informed me that he felt it was time to "wean" mom off the monitors. I didn't realize how dependent I had become on the continuous feed of oxygen saturation and heart rates. It was as if I wasn't watching my child for signs of life but just the monitor. Any parent that has spent time in an ICU must feel this way. I have a new appreciation for the "difficult" parents that I've encountered on the pediatric unit, now understanding that loss of control.

We were discharged on Friday July 27th.

My oh my. What a challenging step in the whole situation. See we never were given a reason to the apnea spells. Just that they would get better (he'd out grow them) or they would get much worse. We spoke with specialists and they all concluded that there wasn't much to do at this time. The neurologist was convinced that they were not related to the increase pressure on the brain, and didn't want to make the life long decision of shunting based on the clinical picture.

I called my mom overwhelmed (as all first time parents do) with the responsibility of taking care of this baby. Cried my eyes out in the bath and fell into bed exhausted after two weeks of sleeping at the hospital.

We survived that first night on our own.

It's been so nice to be home. My mom can up this week and helped me normalize my child's behaviour and unpack our house. It was so good for me.

One piece of advice I'd give parents who's child has a "diagnosis" of any type is try to separate the disease or condition from the child. This has been a daily struggle for me. Every funny facial grimace or cry I want to run to the doctor and ask if it's related to his spina bifida. But beyond all that is a child, with a big personality that will take time from us to get to know. My pediatrician gave me a great bit of advice. "Throw out all those books, you will know, instinctively know as mom if something is wrong. Momma knows, listen to your maternal instinct." I'm working on it and it's been fun getting to know Jake.

Thank you for all the prayers, they have been felt. God has been so good to us we have many blessings to be thankful for. Jake will walk, having almost all the movement of his legs and feet. He doesn't have a shunt as of today, but the final decision will take up to 6 months. We were only in Edmonton for a week waiting, where it could have been a month. The hospitalization was short, only a few weeks and Kev was able to be with us the whole time. And best of all Jake hasn't had any apneic spells since we've been home. These and so much more. Praise God.

Monday July 23rd- Day 9

We had a great night! No apneas, feeding well, and settling better. However Jake did think he’d be charming and visit with wide eyes for an hour after each feeding through out the night. Why can’t we do that in the day and sleep in the night?

Dr. Aronyk was thrilled with the night, and no changes in Jake’s head size and status means no shunt for now. We will continue to watch for apnea (which he has had two small ones this afternoon) and try to find the reason for it.

Another bath today, no more oxygen tubes, IV, or such. He even got to wear clothes for the first time. Please continue to keep the apnea in your prayers. Sometimes even the smartest physicians are unable to give parents reasons for behaviours such as this. I’m terrified that we may not know the reason and I have to go home with him. We might be moved out of ICU tomorrow if the day goes well. Possibly even be discharged by the end of the week, beginning of next if there are no changes.

Amazing. Utterly amazing.

Sunday July 22nd- Day 8

Last night was long and stressful. More apnea, Jake was feeding well but hard to settle, seems to be having some gastric reflux. It may be related to the feeding tube. It causes the top of the stomach to stay open, allowing acid to move up. Daddy Kev stayed up after the midnight feed trying to settle baby for a long time. Mom got a few hours of restless sleep.

Jake wouldn’t wake up for his noon feed, actually I tried and tried to get him awake with little to no luck. It was scary because we’d been warned that lethargy is a sign of increased pressure in the brain. The neurosurgeon came a few times and carefully checked him out. The shunt would be an easy fix if the problem was related to the fluid on the brain, but this one decision lasts a lifetime and making it for the wrong reason would be equally bad. The operating room was notified of the pending decision and prepped incase Jake needed it immediately.

Finally at three Jake got restless and ate, and then ate again at 4:30, and then at 7:00. Talk about making up for lost time…

The need for a shunt will be re-assessed first thing in the morning, pending how the night goes, and changes in his “clinical picture.”

Saturday July 21st- Day 7

Jacob is a week old today. He settled early this morning, and now is sleeping peacefully. They inserted his feeding tube back in and started him back on feeds through it. He seems to be doing 100% better.

I rock him early this morning and pour out my heart to God. Surround him with your angels, one touch of your powerful hand Father. Heal his pain, take away what burdens him. Give him rest. Heal him…

By lunch he is off oxygen, breastfeeding again, and curled soundly, sleeping like a baby.

The afternoon when great but we started to have more apnea spells around dinner. Praying that the night will go better.

We may never know what was wrong, but I know God does. The doctors feel it could be pain and increased his analgesic. Could still be that urine culture… but does it matter?

He’s in God’s hands.

Friday July 20th- Day 6

The terrible, horrible, no good, very bad day.

I had a book named that growing up. Today has been on of those days. It started out good, Jake continued to feed well. But he is restless and unsettled. Around noon he started to have breathing pauses, apnea spells. I was calm for the first few and then a nervous wreck.The doctor on call has put him on oxygen, stopped his feeding, ordered blood work, urine samples, ultrasounds, and xrays. All to see if they can find the reason for the breathing problems.
The day is the longest in my life. I’m a blubbering basket case, unable to comfort my child. He cries all day. It tares my heart out. Never have I felt so helpless.

They start more antibiotics to cover the chance of infection. Look for aspiration in the lungs from feeding. Check the size of the ventricles to see if it’s increased pressure in the brain, requiring a shunt.

Everything seems to be fine. The blood works takes a few days, as does the urine. But Dr. Aronyk doesn’t feel it’s related to the brain. This is good, but leaves us unsure as to why the breathing problems.

Kev is my rock today. He sits at the bedside through the whole scary time, trying his best to comfort our child. I walk back and forward from our little room, crying. My heart breaks with each cry from our little boy. God what is going on?

I’m emotionally spent by midnight and literally crash. They have given Jake some sedatives, but he remains restless like something’s really wrong. Kev gets up through out the night to check on him.

God grants me sleep.