Day 63: Nothing but great news today!

No more CPAP! Lily was moved to the nasal cannula today, and she is doing wonderfully :) At two months, we're finally able to look at her - our beautiful, beautfiul girl. She is awake, alert, looking around the room - responding to our voices - we are overcome by happiness today, it is a huge step and a great sign that Lily's lungs are developing well. She is, without question, the strongest kid I know!

Her blood oxygen is in the mid 90s on about 30% oxygen - the cannula pressures are about 1/2 that of the CPAP, so she really is doing the breathing on her own now. The pressure is just there to push the oxygen alongisde the room air.  Otherwise, in other good news - she had an eye test today, during which no abnormalities were seen. Her eyes are still premature, but nothing that isn't normal for babies at 33 weeks gestational age.

She is truly a miracle! Thank you all for the prayers, good wishes, positive energy sent Lily and our family's way. It has been of tremendous help these past eight weeks, has really helped us stay positive and hopeful. It really, truly feels like the light at the end of this long tunnel is fast approaching - we still have about a month, hopefully not more, left in this journey, and we remain very, very hopeful that this story will have the happy ending that is slowly (but surely) taking shape!

Also - a tremendous thank you to all who have donated, and continue to donate, in Lily's honor. In conjunction with Hillary's amazing help, we have now raised over $5,000 for Hailey's Hope Foundation and $2,500 for a similar foundation in Fairfield County called Tiny Miracles... truly amazing, we are so touched - it is for such a great cause - thank you all so, so much!

Day 61 & 62: Graduated!

Another great couple of days behind us! Lily graduated from the most critical room in the NICU yesterday, and is now in a less critical area - she's doing really well! Hopefully nasal cannula within the next few days. She is digesting well, staying around 23-25% oxygen... the only thing keeping her from the cannula is that she is starting to desat when she's getting fed. Could be reflux, in which case they may start her on a type of prevacid later this week. Also - Lily crossed the four pound mark! She's now four pounds two ounces - really packing on the weight. Can't wait to bring her home!

Finally, after 60 days - we're at a point where the updates can start coming every other day. At this point, no news is good news! Not much to write about these days, just eating, sleeping and growing... what babies are supposed to do. And I hope to keep it that way!

Days 59 & 60: Back to boring!

A couple of good days in a row! Lily is still doing well on the CPAP at about 26/27% oxygen, and doctors were able to turn down the CPAP pressure to '4' today - so the past few days have been pretty boring - and as always, boring is good!

My mom was able to hold Lily today... a first, which was great! Lily did really well during the hour, blood oxygen in the high 90s for the most part. She really liked being held by her grandma :) I'll post up some pictures as soon as Sara gets back from her visit - camera's in the car...

Day 58: Back on CPAP!

Another great day for Lily! She was weaned from SiPAP to CPAP today, so she's doing even more breathing on her own. SiPAP has extra little jets of air, to remind preemies to breathe. Since lily hasn't had any alneas or Bradycardia's, they moved her to CPAP... Just positive air pressure. It's the exact same thing that people with sleep apnea wear- only preemie sized.

Otherwise lily is tolerating her feeds, and Gaines another ten grams last night. Both Sara and I held her for an hour today, and all is well in the world! Really a great feeling to be back in 'boring days'. But very cognizant that we are still in the nicu... just hoping for no more land mines!

Day 57: No more breathing tube!

Lily is no longer mechanically ventilated!

Such a great day! Lily was extubated today and is doing well on the air mask (SiPAP). She's on around 22% oxygen, just 1% above room air! Her pressures are 6/4, as opposed to 33/17 during the scare. It's amazing how resilient and powerful such a small body can be - the swings are fast, and we're very hopeful that this was the last big one - she's back to eat, sleep, and grow mode. And that's just where we want to stay!

So far she hasn't had any apneas or bradycardia's (touching wood). She has never done this before, but we're remaining cautious. Her lungs are sounding good, and though there is still a little fluid in them, it should dissipate over the next few days. She'll be on diuretics until the next step of support (nasal cannula).

We're all too aware that preemies can tire out when breathing on their own - but right now, we're focusing on the positive side of things - she no longer has a tube in her throat, hopefully won't ever have one again in her entire life!

Otherwise, she is up to 35mL bolus feeds and is tolerating them well. So far, so good! I held her tonight for about an hour, here are a few pictures

We're so incredibly thankful for our little miracle - so thankful for seemingly have made it through a very scary time. It still kind of feels like we're walking through a mine field, but it seems less densely mined and it we feel like we're on the right path to avoid another scare.

Thank you all for the support, positive energy, and prayers - I held a miracle this evening!

Day 56: Birthday blessings

Another good day for lily! They weaned her a bit on her pressures, which are now set at 15. Once she gets to the 11/12 range, she might be able to go back to CPAP :) SiPAP actually, but minor difference there is small pressure bursts on SiPAP to help remind lily to breathe. She is also now on full 30ml bolus feeds! She's digesting them well, and everything is moving through properly, if you get the gist!

Having a great birthday :) The sun is shining, Addie is laughing, Sara is smiling, and Lily is on the mend, hopefully close to extubation. Dinner tonight with sara at a craft beer place called Birdsall house - looking forward! 

Love my girls- it's been a good 28th!

Day 55: progress!

Today was another good day, and more progress was made! Lily was switched to the conventional ventilator today around noon, and she is doing well on around 30% oxygen. She is even "breathing over it" a bit - meaning her breaths exceed the ventilator breaths - the oscillating ventilator wouldn't allow her to do that. So this weeks goal is now to get her off the ventilator, back on SiPAP and breathing on her own - with just a bit of air pressure for help, instead of full-blown ventilation. It's nice to hear docs talking about extubation! I'm hoping for sometime this week. It will be GREAT to get that tube out... she'll be a lot more comfortable, and her lungs can start to heal more without mechanical ventilation.

On the gastro front, Lily is now on 25ml bolus feeds, just 5ml short of a "full feed" for her size. Getting to full feeds today is particularly good, because it means they can stop the electrolytes tonight... which in turn means they can take the IV port out of her head and she won't need to be stuck for another IV tomorrow! They are starting lily on a new diuretic tonight, one administered through her feeding tube. I need to catch up with the docs on why we're stopping lasix, but it may have something to do with the potential risks, one of which is hearing loss.

I got to hold lily tonight! The first time she could be held in 10 days, and it was great. Lots of tubes, but I didn't notice them... just our little warrior. Still the strongest kid I know! The amount of work her little body has to do is astonishing. It seems more than any adult body could survive. She really has the strength of thousands. And even though it sometimes feels like we're walking through a mine field, Lily's strength keeps us going!