Well I think our worst fears were confirmed today. Cole isn’t doing well post op. He is still on the vent and there is talk to moving him to the high frequency vent (this was the vent he was initially put on the first week of life. It makes his whole body shake as puffs of air are forced into his body). Cole had a ton of really bad d-sats today (I’m talking scary d-sats). His CO2 levels are very high and he seems pretty much life-less lying in his isolet. His eyes also look a little droopy (not that we can see them, just from the outside). It honestly feels like Tobie just gave birth because it feels almost exactly like the week of January 8th again. This is getting old. I know what you are going to ask, isn’t there anything they can do for him? Well yeah they are doing it. There just isn’t much intervention you can do for him at this time. This is one of those things that require Cole to want to start breathing on his own again. The machine is doing all the work so Cole probably feels he is on vacation (maybe this kid is smarter than we thought, why breathe on his own if a machine can do it for him). They have seen this type of behavior before with the very fragile kids. They think he might be like this for a few days. We aren’t going to panic now, but we are dancing barefoot on that edge again.
Paige on the other hand is excelling on all things baby. Tobie was holding Paige and she started freaking out. She got so pissed and start making sucky faces. Well Tobie decided to give her the breast and Paige went to town. She had never shown this behavior before. She latched, sucked, and ate until she was full. Also the night nurse last night was able to give her 2 full feeds via bottle. The nurses had talked about a light bulb going on in the babies head when it comes to this stuff. I think Paige’s just turned on. She is still doing great post op and that surgery is almost a distant memory for her. Her O2 requirements keep going down, her weight up, her feeds by bottle are increasing, I think this is her way of saying time to get the baby room finished old man.
I guess we will just sit and wait to see what happens with the little guy. There just is something very unsettling seeing him like this knowing what we was like just a few days ago. It’s all very “Groundhog’s Day” like.
UPDATE: NICU just called. They did put Cole on the high frequency vent. They are also drawing up some blood work to rule out infection. They are thinking he’ll be on this vent for 2-3 days. Super.
UPDATE 3/29 7 am: They had to bump up his vent setting again in the middle of the night. His blood gases looked bad. He also tested positive for an infection. They won’t know what infection for 24-48 hours, but my guess is Group B Strep. He’s on a general antibiotic now. The nurse said she has been pulling out a lot of secretions from his tube.
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I’m sure seeing him so fragile again is really hard. These little ones know they are loved and I’m sure he’s conserving some energy for his big comeback in the next day or two! Thanks for sharing the updates - we so appreciate them.
xoxo
I’m will will be praying for Cole! He has come so far these past few weeks, and I’m sure this is very difficult for you. Hoping the next few days he gets stronger and stronger. Glad to hear Paige is doing well. He just needs to rub off on his brother.
I meant to say she needs to rub off on her brother:)
Gotcha
Hopefully he’ll come off the high freq vent sooner than expected, once he shakes off the sleepy drugs.
Unfortunatley he hasn’t been on any sleepy drugs for over 24 hours.
Haha, I just typed out a long bit about infections when I saw the update.
The light bulbs are weird. Lessa’s snapped on and she was home within about 5-6 days. Ivy’s faded on a few days later, but still couldn’t kick the O2 habit.
And I don’t know why, but Ivy took a long time to recover from the one eye appt (even though not surgery). It required time & vigilence, but by next appt (2 weeks) she felt much better. Will Cole have another invasive eye appt soon?
Just looked at the photo. Sucks about the scalp IV. Those are never fun.
And just cause you don’t have anything else to wory about…is this a picture of what will come in 1 year’s time? (date’s 2007).
OK, gotta go (runs hastily away)…
Having had one of my little ones (now 6 months old but born 27 wks 5 days) go through cranial surgery, I know the stress and anticipation and worry that this puts parents through.
I hope that Cole does better now that they have identified an infection and can start to treat him and that he shows signs of improvement so that you and Tobie can feel like you’ve left that first NICU week far behind!
Hoping everything goes well for all of you.
Lucy
Mum to BBB trips and a older brother for them too.
I’ve been following your family’s story and my thoughts and prayers are with your and your babies during this rough time. Take care.
We’re all pulling for the kids and their parents; like always, let us know if there is anything we can do to assist.