Our Penelope continues to be a drama queen but thankfully not as much as before. She's still having her preemie desat/brady moments because she's still developing those necessary skills to help keep her body awake and active to remember to breath while sleeping. She's still on oxygen but sitting more and more at room air or slightly above (21% - 25% O2) on 3L of flow(or rate). They're still actively weaning her off of the high flow so that they can switch her back to the low flow canula and get some of that head gear our of her bed! To recap, the reason for being on high flow is because sometimes when babies come off of the vent their lungs are used to being inflated by the pressure of the machine, once they get off the vent, without the resistance, the lungs collapse and they then have to go back on the vent to help get all the alveoli recruited again. High flow, continues to push air through the canula keeping the pressure in her lungs up so that they stay inflated. Weaning helps bring the pressure down, teaching and strengthening the lungs to work without the immense amount of flow keeping them inflated. The amount (or percentage) of O2 is what her body needs to actually oxygenate and that number is what we're most concerned about. The higher the number means her lungs are not really absorbing the O2 into her blood stream well. 21% O2 (aka room air) is the lowest setting on the flow/O2 "blender" meaning that there's no added O2 being given to her, just what she would be getting without the flow, hence "room air." That means that her lungs are oxygenating properly and she's doing the work on her own. All that to say, the doctors believe that we'll be taking Penny home on some O2 because she's still desating some and because she hasn't been able to sit at 21% for more than just a few hours. This all goes back to her BPD and her body having to grow out of it as time goes along. So when you see us walking around with that cool O2 cylinder hanging from our shoulder, don't be offended when we tell you to put out your smoke.
She's recently been changed to some new vitamins and other minerals to help her body replenish things like calcium, potassium and iron that are being lost due to a combination of other meds she's had in the past and some she's still currently getting. Her biliruben number is still teetering on the high side, not quite low enough to DC her meds for it. A slightly concerning side affect to her bili issue is a change in her poop (oh yes... here we go again) For those that are interested, her stool consistency has been off for a week or so now, beige and clay like, not the healthy breastmilky stool that we've come to want and hope to see. All you parents know what I'm talking about, everyone else... have a parent explain what that's supposed to look like. This is in correlation to her liver not processing her bile right, causing the back up in to her blood stream aka the higher bili number. Her skin tone has changed for the better as the number crawls back to the normal levels, she's got a nice flesh tone glow to her again and not that dull yellow tint anymore. The nurses are pretty sure it's not going in the direction of c.diff because of the stool consistency so we're thankful that for right now and will stick that out of our minds. They're still running labs to keep an eye out on what's going on with her numbers though, just in case there are other things that might begin to go awry. An upside in the feeding area is that the other night, after requesting, I was able to PO feed her 5cc's from bottle!! She handled it really well and so we're hoping that the order will stick for her to be able to have some good bottle feeding time, in small bits of course!
She's still receiving her IV antibiotics until her tests come back negative from the lab, which hopefully will be sometime this week. It still was only showing staph aureas and nothing else. The day that she had to get her IV in, the nurse and docs had to try over 7 times to get a good IV site because her veins kept blowing due to her jaundice. Since then she's knocked out her IV two times and our nurse tonight believes that she's doing it just for her because she's knocked them out just the nights she's been there. So the sooner this test comes back negative the sooner that IV port can come out and she won't have to get stuck as much!! Her spot on her arm is progressively getting better and thankfully it didn't refill or pop up anything else around the area.
Penny's still scheduled for surgery on her bilateral inguinal hernias but closer to discharge time. It had been originally thought that it would be after she hit a certain weight, which she has reached now, but the team has decided that they will continue waiting until she absolutely needs to have it as to keep her off the ventilator longer! We DEFINITELY don't want her back on the vent if she doesn't have to be!
I think that's it for Queen Penelope... as for Sister Lydia, she's continuing on her growth as an at-home preemie! She's been great to stay on schedule of eating, pooping and sleeping but we have noticed that since she's geting bigger, her schedule is starting to get off a bit. We switched her to part formula this week, for dietary reasons, which has allowed her to start gaining more weight but has also caused her to be a bit more, well, stubborn about some things. We're hoping that her little stomach will handle it all ok and not cause any issues. We'll be talking more with the dietician to see what we need to do change up her meal plans and talking more with our pediatrician to see what the next goals she'll be needing to hit when she finally gets to term. Hard to believe that they are a week away from being term babies!! So crazy! It has been a lot of fun to have her home and to dress her up all the time in fun new little clothes. Still so hard to believe that this little life is now in our home and is ours FOREVER! ha! It truly is a blessing and we can't wait to get Penny here as well. That's going to be another game changer! whew!
It definitely should be my turn to take over this writing business since, emotionally, I have the easier load. My dear wife has been under more emotional turmoil than I think I've ever seen and I truthfully don't know how to help her through this except to continue telling her that she's doing wonderfully at what she's doing right now. The expectations set on her are much higher than most moms/parents would normally have to deal with because our timeline for "typical" growth patterns for these girls are all out of wack. A lot of things that we are having to choose to do and stick to our guns about are going to be tough to explain to folks because we have preemie babies. Like I've said before, it is a strange elite club to be a parent of ultra preemies and unless you've gone through the experience, people will not understand that our babies don't follow the same plan as term babies, they're hybrids of sorts. She posted the other day and had expressed to me earlier that the "mommy guilt" has been starting to set in, the feeling like she's not able to take care of them in certain areas, or the "if only-ies" are haunting her along with the "what if's" clawing at her feet. It's been tough for her to shake these demons off, letting the light of these babies' life shine through as the most important thing. Also, the pull to be at the hospital with Penelope or at home with Lydia is starting to wear on us, causing our hearts to ache more and more. We've been taking turns going to the hospital to spend a few hours with Penny which is a drastic change from being there 24/7 with her. It wears at our hearts but even more so on Bethany's. And so, these are our prayer requests.
- Penelope to continue tolerating feeds, processing her food, and continue learning the suck swallow breathe technique.
- Penelope to continue to stay healthy and to not get any more infections!
- Penelope's bili numbers to continue coming down to a healthy, normal number
- Penelope's liver to be ok and not over stressed
- Lydia to handle formula ok and not have too many "passing" issues.
- Bethany's mental/emotional well being.
- Bethany to rest well during the few hours that she does get to sleep so that her body doesn't stress out and decrease her milk supply anymore.
- Spiritual stability as we struggle with being away from our church body.
- To handle this unnatural pull between hospital and home, for us to trust that she is feeling our love and care through the short amount of time that we get to spend with her.
It's still mind boggling to us the people that we still meet or contact us about joining us on this journey. We're humbled that God would use us to share His story of love to so many people and we continue to pray that Christ would be our guiding light and our beacon of hope and direction as we continue wading the waters of uncertainty.
And now to leave with you with a few snapshots of the miracles that you all pray for.
Daddy and Lydia posing for a picture
Lydia gets upgraded to a new bed! This is a radiant warmer.
She's keeping up her temp so she gets to wear clothes!
One of a kind... (x2)
Shhh... I'm resting so i can stay warm!
Daddy needed some kangaroo time
"I pledge allegiance, to my paci"
"When i grow up, I'm going to be a librarian..."
"Does this footie make me look fat?"
"why, oh why!"
"whew! hard day's work."
"i mean, seriously can't we get those numbers to work out?"
Penelope getting some CPT (chest physical therapy) done to help clear some junk from her lungs
free massages? yes, please!
I so gotcha...
Swing low sweet boppy chair...
Lydia snuggling with her Penny Bunny
Bethany made the panadas for their mobile.
we couldn't find the mobile parts so she took a brand new one apart and made one herself!
Penelope's worrisome spot
"oh man! I thought the party was at your house!"
Wide eyed and wonderful.
"get that camera outta my face."
"uhh.. i didn't order the lamb chops.."
"seriously, you're crowding my personal space."
Lydi lamb snuggling with Penny
Holding on to mommy.
Some Papaw time
"some assembly required..."
"If i only had some wheels..."
Trying to be a Nobles.
"Step One... find step two."
After a half hour of work... this appeared. Thankful for Mah Mah and Yeh Yeh
"Penny's new palace"
Penny being shy.