Week 12 – April 5, 2015
This week was a bit of a hard week; we tried to take C off the invasive vent but after an hour and a half he was just working way too hard to breath in so had to be reentubated. The next step that we have been discussing with the team is surgery for a tracheostomy. There is an OR booked for this week, but Jarrod and I are going to speak with the ENT on Tuesday before we sign a consent.On some more positive notes, Jarrod and I have been able to give a few more baths, and have experienced our first poop explosion for ourselves, and man was is a doozy. C is also up to 6lbs 5oz and is now big enough that they have changed from daily weighing to twice a week.
Week 12.2 – April 7, 2015
Friends and family, we have decided to go ahead with the surgery after talking with our ENT doctor tonight. So tomorrow morning at 11 our little monkey should be losing this tube and will be getting a trach. Prayers are very much appreciated.
Week 12.4 – April 9, 2015
* Wednesday we went into the hospital thinking that we would be sending off our little man to the OR; however, there was a delay until the next day because he also had to have some work done on his eyes*
We can see his face! Connor came out of the OR around 1135 this morning and from what the nurses were told he did very well. We left the hospital once he was back to do a few errands and now are getting ready to head back to see him. As for his eyes we won’t know until next week exactly how well the treatment worked.
Thank you everyone for your thoughts and prayers these past couple of days. And really through this entire process.
Week 13 – April 12, 2015
Hi everyone! A much less stressed, much less worried mommy here to update you all today
This week was a busy week. Jarrod and I came in on Wednesday morning to the hospital expecting to watch our little monkey head off to surgery. Instead we were greeted by the Opthalmology doctor and he let us know that C also needed eye surgery. With that news (which took everyone by surprise, incl. doctors) we decided it would be best to have the procedures done together, and so we were delayed a day. So we stayed at the hospital Wednesday night so that we could see C before his 8am surgery and also stayed Thursday night.
Both the procedures went well, the eyes won’t be checked until this week to see how things are progressing, but we are going is in the right steps. As for his breathing tube, as of this morning C is breathing on his own with the machine only giving him pressure and not any breaths because he’s doing all the work by himself! He is off all pain meds and back to all his regular meds and eating his max amount.
We are so relieved at how things are now progressing and I am now looking forward to what this week might bring.
Week 14 – April 18, 2015
Ok, first off, this kid is FREAKING adorable. I was going through the pictures from this week and I couldn’t decide what one or two to share with you, so know that a lot of thought went into this this week.Second, I know that it is only Saturday night BUT daddy is away on a much needed break in the middle of nowhere NB and tonight ended up being quiet for me.Ok, now for the update. This week turned into quite the week. On Sunday, C was switched to CPAP on his vent which meant that the machine was just giving him the pressure to help his lungs stay open, and he was doing all of the breathing by himself, which was fantastic!On Monday morning, his nurse who had him the day before noticed he needed a lot more suctioning than he did Sunday and at one point got some bright green come up so C then had that tested, his blood tested, his urine tested, and his spinal fluid tested to try to pin point what kind of bug he had growing. We did have cultures grow positive and they went to Infectious Diseases to help with the combination of antibiotics since the cultures were positive in several places. The hard thing was that it took three days for a good central line could be put in for his meds, but he was more bothered by that then by being sick. C, has most definitely started feeling better.On Wednesday ophthalmology checked C’s eyes and one eye was looking better, but the other was showing a bit of swelling; by yesterday when they checked again he was looking better.Thursday was the first trach change, ENT came to do the change and check on everything and they looked happy with everything and seem to think that C will be good.Since C has started to feel better they have started changing his feeds so instead of a continuous feed he is getting the same amount of food but in waves of 2 hours through his nose tube and then a 1 hour break, and he seems to be handling it quite well. They are also working on bringing his vent back to CPAP since they changed it back to oxygen and breaths
Week 14.4 – April 21, 2015
This special mid week post is because we have hit 100 days. Today we switched from a CPAP mode to a completely different machine that just gives humidity, he is almost 8 lbs. He is starting to get his feeds back to a more regular routine, and we gave him some milk through a syringe orally and he LOVED it
Week 15 – April 26, 2015
Happy Sunday everyone! I was so excited to wake up to sun today, oh. my. goodness.
So Mr. C had quite the week this week, lots of changes were happening.Monday, we switched C from a vent to the high flow machine so that he would be getting just the humidified air and has been doing great on it the entire week. He also had his eyes checked again on Monday and they seemed pleased with the progress since last Friday, he was put on steroid drops to help so we are glad that they did their job.
Also this week we were working on getting C back to gravity feeds and introducing a bottle, and I am happy to say that it all paid off and on Friday I was able to give C his very first bottle of 10ml and daddy was able to do the same that night. So this week I believe the plan is to try to get the volume of the bottle up so that he can at some point get rid of the breathing tube.
On Friday C also was moved from NICU 1 to NICU 2. He is now by a window and the hope is that he will get two sites so that we can start the physio aspect and doing more tummy time and playing on a mat or sitting in a chair sort of thing.
This week mommy also took over suctioning when she was around, and is hoping to be starting the daily trach cleaning this coming week. Daddy is also reading our materials so that he too can start.
This week coming mommy and daddy will be part of a team meeting with the neo staff, and the peds staff, to get a good look at what the next little bit holds so that we know what to expect, part of this is when we will be moving to the paediatric floor.