***This post is the 2nd instalment of Judah’s story- to read the first part of his story, you can click here!***
Since Judah’s emergency csection delivery at 25 weeks and 5 days, we were told and prepared the worst of the worst.
After I got to see him for the first time, he was still in critical condition and though I wanted to stay by his side, the team needed the space and my body needed to heal- and I needed to start pumping!
I went back and forth from my hospital room to the NICU as much as I could, until I was discharged and then got to stay for 4 nights at the Ronald McDonald house which was right next door to the NICU. It was during those 4 days that I began my long hospital days of being by Judah’s side, and going home or to the RMH room just to sleep (or pump … #pumpingislife ).
Judah was in critical condition for the first few days, which all the Dr’s refer to as the ‘crucial days’. Judah was intubated at birth, and tried on several ventilators to help his very little, underdeveloped lungs. He received surfactant (which they referred to as him being ‘BLESED’ (yes, with one ‘S’)- there was literally a sign above his incubator that said ‘I’ve been ‘BLESED”!!!)- a soapy substance in his lungs that helps them to move and not stick together. He received 3 doses within his first day of life. Judah was initially on the High Frequency Jet Ventilator, at 100% oxygen, with Nitrous Gas as well- in plain language, that’s as much help as a 1 pound 14 ounce babe can get.
Judah’s lungs were actually hyper-inflated, which caused a large pneumatocele (air-filled cyst on his lung) to form. This kid has had a bagillion chest X-rays! In total, Judah had 46 days of being intubated (the first time!), and was moved to non-invasive ventilation from day 47 until he was taken off daytime oxygen support at 10 months of age. So yes, even at his one year birthday, he still requires ventilation at night via CPAP, and oxygen at times for naps.
We were told days after Judah’s birth, after his first brain ultrasound, that Judah had no bleeds in his brain- something that is very common for preemies that can cause a lot of issues for development, etc. We were so thankful.
Judah got Ventilator-Associated Pneumonia at 12 days of life, which was the second time we thought we were going to loose him, and were prepared for the worst. He was treated for 14 days with antibiotics, some of which caused his profound hearing loss, and was again diagnosed with Pneumonia at the end of August. Because of the Pneumonia, Judah also suffered from 2 brain bleeds- a grade 2 on the right and grade 4 on the left, grade 4 being the worst it can be.
I specifically remember one night where Judah was on full support, was so sick, and there was an expected perforation in his bowels. The Dr’s sat us down, and said that if the ultrasound results came back with the perforation, that Judah would need to be transferred via helicopter to BC Children’s (about 45 minutes away), for emergency surgery, but that’s only IF the specialists at Children’s deem him ‘transferable’.
Before we got the results back from that ultrasound, the Dr came back in to tell us that transferring Judah was not going to be possible- he was just too sick and too fragile.
As we awaited the results for that ultrasound, I remember the song ‘Do It Again’ from Elevation Worship came to my heart. So we prayed and believed again, and when the ultrasound results came back, there was NO PERFORATION.
Judah’s course from September through to November was somewhat uneventful- minus the 2 code pinks that were called on him. I just figure he liked being dramatic! We happened to be there for one of them (code pink is infant cardiac arrest), and it was also one of the worst moments in this journey. It was also the day before my birthday. But as you know, he pulled through- thanks to God and our amazing team!
We celebrated Judah’s 100th day of life with a big cake that I made for our team, and of course they had surprised us with a banner and a big card.
Judah also got the chance to be highlighted by Global TV for Variety, the children’s charity. He has become quite the famous little boy!!
Judah was receiving weekly head ultrasounds to monitor the bleeds in his brain and after a while, it was revealed that the bleeds were ‘resolving’- basically the best outcome for him. Our Dr even explained to us that she was quite surprised, and had expected to see cystic formations (which cause Cerebral Palsy), and there were none on his brain tissue. We are still hoping and praying for a full recovery for him, as the bleeds are still there, however we are definitely headed in the right direction!!!
Koby and I were hoping to have Judah home by Christmas, so at the beginning of November, with the ‘approval’ from Judah’s team, we decided to have a little break from the NICU and tried to go on a little getaway before bringing Judah home. TRIED TO being the key words 😉
Judah’s oxygen requirements had been slowly creeping upwards for a couple of weeks and his team had been trialing him again on a number of different CPAP settings. On our 2nd day in Whistler, we got the call that Judah needed an emergency transfer to Children’s, as they did a chest X-ray and it was revealed that the pneumatocele had grown to almost the size of his entire lung and they needed to intervene, but we’re only able to do so with the specialists at Children’s.
So Judah was re-intubated on day 116, and transferred to Children’s as we sped (SO FAST) from Whistler to meet him there.
Since Judah was already getting pretty big at that point, they had to temporarily paralyze him, so that he wouldn’t take out his breathing tube on his own- he’s been known to try!
When koby and I got to this new environment at Children’s, we were shell-shocked, and everything within me wanted to be at our safe, familiar NICU in Surrey. For me, this week was the hardest of this whole journey. We had made it to 4 months, and felt like this was the end.
Judah was again, on death’s doorstep, but became stabilized through the night and the next day they decided to put chest tubes in, one to drain the pnuematocele of air, and another in his lung for the fluid that had built up. Typically this is done in radiology, but as they tried to move him there, he started to crash. So they set up a mini OR, right in the NICU, as I sat and watched on, and waited for Koby to arrive as he was with our other kids.
I’m pretty sure this is the closest to hell I will ever get. To have to sit back and watch your child in a life-saving surgery, while 16 people chased around him (yes I counted), is something I wish on no parent. It’s awful.
But he pulled through again.
Then it was discovered that there was a hole in his lung, that was feeding the pneumatocele, so another procedure or surgery would need to be performed.
What was decided was that Judah would have what’s called ‘selective intubation’- they place the breathing tube down far enough, with a cuff on the bottom of it, so that it only inflates the ‘healthy’ lung, therefore causing the right lung with the pneumatocele to collapse. This is when we started calling Judah the ‘One-Lung Wonder’… he went for 5 days with one lung, still on a lot of support, got pneumonia AGAIN (4th time’s a charm??).
So many times in this journey with Judah I was taken back in awe of how God created our bodies- while the lung is collapsed, it heals up and seals any holes. HOW CRAZY.
So as Judah’s right lung got re-inflated, the pneumatocele went away, and from that point onwards, Judah began to improve MASSIVELY.
We became accustomed to our new environment at Children’s, got moved to a private room (which doesn’t always happen at Children’s!), and continued the rest of our 181 days.
We celebrated Christmas in the hospital with a family visit, all with masks on, as our family got hit with the worst cold/flu right before Christmas. Judah even got to see Santa!!
Right after Christmas, Judah had surgery for his Gtube to be placed. Another thing that I was so nervous for, but in the end have been so thankful for! It was a quick surgery, that again caused my faith to grow as I kissed him before he was wheeled into the OR- at least he was able to make it over there this time!!
The last few weeks of Judah’s hospital life were full of work for Koby and I- we had about 6 classes of training in order for Judah to be allowed home with us… everything from CPR, to equipment training. We also did 2 full days and nights by ourselves with Judah in hospital called ‘care by parent’, who I felt so funny- like we were first time parents again!!
January 13th 2017 will forever go down in the history books as one of the best days of our lives… the day we got to bring Judah HOME. We felt like we were stealing him! He slept the whole way home, and we were greeted not only by a homemade ‘welcome home’ banner made by my kids (and my mom), but also by the crew from Global. Nothing like filming with a TV crew the day you finally get your baby home after 6 months! HA!
So here we are- 2 days out from celebrating his 1st birthday and to be honest, ALL WE WANNA DO IS GIVE BACK.
GIVE BACK to the place that GAVE JUDAH LIFE.
GIVE BACK to the place where our faith was tested and stretched.
GIVE BACK to the place and the people, who changed our lives forever.
So on Saturday the 15th, we will be launching a special little celebration for our guy, and we will let you know ways that you can all be involved in the party!!!
Thanks again for following along my friends. This journey has been the farthest thing from ‘easy’, but was do-able because of the grace of God, AND ALL OF YOU!!!