Ethan's story didn't start when he was born, none of our stories do. They start in the hearts of our parents. In the pure elation, panicked excitement and sometimes utter despair when we discover we've created another life. Our hopes and dreams for our children, our worries and fears, all contribute to shaping our child's life.
Ethan was no different. I was so anxious to be pregnant that I never even waited to miss my period, I was peeing on sticks as early as I could. A few months of disappointment passed and then August long weekend right before our annual trip to Grand Forks I thought maybe before we head out on the road I should check, we were, after all, about to head into a week full of wobbly pops! It turned out to be a very sober and nap filled weekend.
We were so excited. It had happened. Another baby. Ella was going to be an amazing big sister. Her nurturing nature and little heart overflowing with love, this was one lucky little baby.
Not only did I have dreams for my little babe to be but I had great plans for my pregnancy too! I was going to be the "fit mom". That girl who only has a belly. I was going to bounce back so much faster this time. I wasn't going to let those sour keys tempt me. And you know, for a while, that is just how it went.
My 1st trimester was pretty typical, although a bit different from Ella's, I should have know it was a boy! I was super lucky to get an amazing midwife team and even hired a doula (that was another goal, no cesarean), I was nauseous (although not nearly as bad as with Ella) and tired and bloated. God was I bloated! Until I found peppermint tea that is. Do yourself a favour and keep peppermint tea at home, have a cup at night and you'll wake up flat as a pancake!! My skin never freaked out at me and my appetite was totally different. I actually craved salad
and veggies. We even took a trip to Palm Springs with friends and enjoyed sunshine, the
pool and some shopping.
There were a few hiccups along the way too. My first ultrasound found an ovarian cyst and a subchorionic hemorrhage (which had caused me to bleed at 5 weeks). We also had trouble finding his heartbeat at 12 weeks which kind of terrified me because that had never been an issue with Ella. But overall everything was quite normal and uneventful.
And then the honeymoon stage hit, or what should have been. If we're going to use marriage analogies here, my 2nd trimester was a horrific divorce...
Friday 28 September 2018
Sunday 4 February 2018
The NICU Journey - Birth to Month 1
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| 1 month old vs 2 days old |
In the past month Ethan has gone through more than most adults have in their lifetime. He has dealt with the following:
PROCEDURES:
- Exploratory stomach surgery (perforated bowel)
- 29 chest/abdominal x-rays
- 13 IV insertions (head, hand/arm or foot)
- 5 Blood transfusions (packed red blood cells)
- 1 Albumin transfusion (blood plasma)
- 5 Echo cardiograms (ultrasound of the heart)
- 3 Head ultrasounds
- 1 renal ultrasound
- 3 intubations (breathing tube in his mouth for the ventilator)
- 27 days on the ventilator
- So much blood work we can't even count it all
- 27 days on Morphine (pain and sedation)
- 13 days on Nitric Oxide (aids in oxygen absorption by expanding vessels)
- 9 days on Midazolam (sedative)
- 8 days of Rocuronium (paralytic)
- 3 days of Dopamine (manages blood pressure post surgery)
- 2 days of Insulin (controls his high sugars)
- 2 rounds of Dexamethasone (steroids to reduce inflammation and help lungs heal)
- 1 1/2 dose of Lasix (diuretic to help him remove fluid from his body)
- 1 dose of Atropine (to increase heart rate)
- 1 dose of Succinylcholine (very short term paralytic)
- 2 rounds of multiple antibiotics (post surgery and precautionary)
All of this was experienced by a baby less than 1.5 pounds. A baby born 15 weeks before he was meant to. A baby who has so much drive he fights his ventilator and demands to do it on his own only his lungs are too damaged to allow his body to try and do it himself. This little guy continues to show the doctors he CAN do it, he just needs some time to grow and evolve.
When Ethan was born his first 4 days were great, the honeymoon stage. He was on CPAP to ensure he didn't tire while breathing and doing "better than expected". Then day 5 came around and hit us like a truck. I had this mom instinct feeling that I should call the hospital (something I hadn't done yet, we had just been popping in) and sure enough when I called they put the doctor on the line and she explained that they were speaking with the team at Children's and would he would need to be transferred there. His belly was a bit distended (which is normal for a baby on CPAP) so they did an xray and saw that there was air outside his bowel. This meant he could have a bowel perforation and would need surgery. The BC Ambulance Infant Transport Team came to transfer Ethan to Children's. Even considering my insider knowledge of their job it was so overwhelming to watch this incredible amount of work being put in just to move my baby to another hospital.
Once at Children's Ethan was quickly settled into his new room and the doctors did their own xrays and scans to verify and decided to bring the OR to his room. Our tiny little baby, barely 1 pound was about to have exploratory surgery. We had no idea just how severe the outcome may be. It could be a tiny hole that needs a simple stitch or it could be necrotizing enterocolitis where the tissues in his bowel are dying requiring part of his bowel to be removed. Steve and I waited very anxiously in the family room for the surgeon to come in and tell us how it went. I cannot express the relief we felt when the surgeon explained it was a very tiny hole surrounded by healthy and well profused tissue.
In the days to come, Ethan's recovery involved antibiotics, morphine, blood and plasma transfusions, and some additional medications. His feeds were stopped while the gut healed. For the most part we have been out of the woods in the stomach department. We had some concerns over his belly being discoloured and he also had quite a large meconium plug which was preventing him from pooping normally.
The majority of his first month has been centered around his lung health. Although at 25 weeks gestation, babies lungs are considered developed they are still very underdeveloped. They are also extremely sensitive to air as they are not yet supposed to be breathing. Ethan has developed quite significant lung disease. The tissues of his lungs are very damaged. He struggles with his upper lobes collapsing and even with ventilation it is a constant struggle to keep them inflated correctly. January 14th was a rough day, his oxygen saturation were low and he was on maximum ventilation support, this combined with a doctor who only seemed able to express how sick our baby was and not any positivity Steve and I began to fear the worst.
After many days of full paralyzation and heavy sedation to allow the ventilation to work and prevent Ethan from fighting it he began to have a few good days mixed in with the bad. We agreed to start a round of Dex to hopefully reduce the inflammation in his lungs. Unfortunately, the Dex didn't seem to help him much. He still had quite collapsed lungs so the team decided to try chest physio (normally not done on such small babies) where they use a small rubber tool to "purcuss" his chest. It basically looks like there are doing CPR and pounding on his chest, very aggressive looking but it did an amazing job and after just 1 day of it both his lobes had opened up. They were able to clear a ton of secretions from his chest and he really began to improve.
We enjoyed 5 or so days of big improvements, we even had chats about being able to extubate him and put him back on CPAP. And then another decline came and that is where we are at now. He is on a second round of Dex and there is concern that he has some sort of infection in his lungs. He is on higher oxygen support and back on fairly high ventilator support and he is back on regular doses of his paralytics to tolerate some frequent position moves to clear some secretions. His breathing tube was replaced and it was discovered that it had quite a bit of blockage at the bottom. So this fresh tube, combined with regular chest physio again, revised antibiotics and paralytics we are hoping he will begin to make an upswing and show some improvements.
Month 2 has started on a low note so there can only be room to go up! Here's to hoping Month 2 is full of growth and improvement, maturing organs, less medications and procedures. Ethan is here for a reason and we are confident he will grow into a strong little boy with a huge drive to succeed and surpass expectations. Your well wishes, positive vibes, prayers and support are so appreciated and don't go unnoticed.
Saturday 3 February 2018
Ethan's Birth Story
I had another NST in the morning and they were unhappy with his performance. He was having quite a few decels (decelerations in heart rate). I was sent back to Labour and Delivery and spent 5 hours on the NST. Again, his decels continued and began to become more frequent and extended. The doctor explained it as "imagine you are swimming to the bottom of the pool over and over again, you will get very tired and poorly oxygenated" thats essentially what Ethan was doing. It's likely that because there was very little amniotic fluid left, his cord was being compressed and restricting his oxygen.
It went very quickly from "we may need to deliver" to "let's get to OR". My cesarean with Ella was overwhelming but this one was a whole new level. We had a team of about 20 people in my operating room. From the OBGYN to the Anesthesiologist to the Neonatologist and Pediatrician. Not to mention the nurses, students and other doctors. The team was incredible, particularly the Anesthesiologist who held my hand the whole time until Steve could come in.
Ethan was born breathing on his own and peeing (typical boy) and placed into a plastic bag for warmth. He was taken by the NICU team to his own bed and put on CPAP. Before taking him into the NICU to get settled they brought him to me so I could see and "hold" him. I could hardly tell what he looked like with his CPAP and hat on, but his tiny hand reach up from the bag and he placed it on my mouth as if to say "Hi Mom, I'm here now". I gave his hand a kiss and he was off to the NICU.
My surgery was completed and after my time in recovery (only about 1 hour) they rolled my bed into the very crowded NICU so I could see him before heading back to my room in Maternity. Thus begins our NICU journey...
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