7 weeks old today

Zoey is 7 weeks old today & had a big day to celebrate.  Instead of the pic line they decided to put in another central venus line, this time in her arm, & everything went well with the procedure.  She has been moving & squirming all day & handled it well.  If anyone has been handling all of this well it's gotta be her I must say.  They elected to go this route as has less probability to be rejected & they can do blood draws & nutrients easier this way. They are going to try & jack up her feedings again over the next few days & get her to put some daddy weight on so she can get the heck out of here.  So we can all get out of here.  I must confess I'm burnt out of this place.  Seeing families come & go & constantly changing doctors sucks.  Wonderful usage of the english language I realize.  Just frankly don't want to do this anymore.  Don't need to have any messages of well-wishes or be happy stuff from anyone, just wanted to write it out instead of thinking it over & over haha.  I'm going to go home tonight as Sally has a SWAT banquet tomorrow night.  I need a reprieve from this place & RMH.  The monotony is laughable.  I got my laptop all set up so I can access our at-home DVR so I can watch some of my shows while I sit next to Zoey.  She holds my pinky or ring finger & I watch my shows.  That's how we roll. They never did her upward contrast study, which has been the great mystery as neither the NICU doctors or nurses know why they DIDN'T.  So got a few people trying to figure out what the other hand is doing once again.

Post Surgeon Conversation

Zoey's surgeon actually showed & he & I had a good conversation, which would've been nice to have been communicated several hours ago.  He's not overly concerned with her status as of right now other than the fact she's not putting on weight.  While a big deal, it's easily solved with putting in a pic line for her (we'll have matching pic lines, ridiculous), & getting her back on the TPN nutrients to supplement the milk, as she's just not digesting enough of it with how high they had to fix her tummy in the intestines.  So hopefully that'll get done by tomorrow afternoon and get her putting on weight again, as she's now behind pace to get her 2nd surgery to fix her tummy at that "6" week point post operation as she needs to be 5 pounds ideally to either reattached her intestine or fix whatever's blocking again.  This is another little road bump hopefully, as the surgeon explained that this is a somewhat normal occurrence in the road to recovery.  Outwardly she's a rockstar.  Eye's open, hands & feet flailing & looking great.  She's just going to need another shove to get her going here hopefully.

Waiting game once again

Zoey's massively important contrast study was done this morning to see how her intestines are doing.  Results so far of what they could tell were disappointing, in a word.  It only went down approximately 15cm & was blocked somehow from going further.  So they'll be giving nature a chance to see if it naturally works it's way through with time & the opposite was up to see what the situation is from that direction.  So we'll have to wait till tomorrow morning for more study results & hopefully the surgeon comes to talk to us or me once Sally leaves for back home.  The resident came by & once again didn't know much, so the surgeon's nurse practitioner came by & answered a few more of the questions but nothing definitive.  Otherwise I'll be here for 8am rounds to make sure we're on the same page & don't have poor information again & we have a clear line of action from here.  Zoey's ROP (eye) test finally came back & she's in stage 1 of eye development, meaning she's normal stages for the blood vessels forming & location.  So what should be a happy note of news instead gets thrown in with this stuff.  Hurry up & wait, here we go again.

Bunch of Pics from today

Few days of updates

Zoey had a good weekend, upping her feedings & having the TPN removed from her diet. Weight seems to go up a bit, down a bit, up a bit & so on & so forth every few days. Weight yesterday was 3 pds 2 oz so hopefully get to a point again where the consistency happens. Her line went bad in her arm so that has something to do with it all & the hope is she keeps taking in & absorbing the milk, along with a supplemental milk that has been introduced to replace the bovine milk they have been giving to preemies for years, essentially helps her with nutrient rich milk, absolutely nothing wrong with Sally's liquid gold. Did our research & check it out so we agreed to go this route, as it statistically induces less gut issues, which is obvious of utmost concern right now. She's not quite doing as well as she needs to I'm sensing as they are going to be getting a contrast study done, labs, & xrays over the next day or so. Unfortunately our new resident gives me the sense she has the confidence of a field mouse as she never really knows the answers & is always having to ask someone else. While better than the alternative of giving poor or incorrect answers, I don't see the benefit of sending a young doctor to parents & not knowing answers, regardless of it being a teaching hospital, as then things have then even be disseminated back & forth, resulting in frustrations like we went through before. Always good when you ask the question of, "Overall are we happy with the big picture?" & is followed up with an uncomfortably long pause & a "I think so," as her answer as she decided on to go with. The days are long down here & I tire of this whole situation of the unknown. Her lung health is still doing very very well & is on room air with minimal pressure to her lungs on the c-pap. With the possible changes to her diet, labs, & whatnot over the next few days probably won't be going to hi-flow for awhile yet again as it's just all too much for her to battle with & try & overcome all at once. Sally & I came back last night & able to spend the next 2 days with her together, which is great. Sally is overjoyed to be able to talk to her & hold her with k kare & have momma time, as it is tough for her to be gone for several days working & the coming back back & forth with the driving is a royal pain in the patoot. The route back & forth from EC to Rochester is an annoying one & we can both certainly attest it's getting old. Pray that it's a few more weeks of this & transferring happens to Eau Claire.

I got scolded for shortening Zoey's name. No more nicknames of Z & Zo people, don't need the wrath of Sally coming down on me! lol

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Thursday/Friday update

 Zoey has had a good 2 days, all things considered.  They haven't checked the blod clot location, but will be doing that early next week.  Her surgery ports are doing great & she's handling the bag fine on her tummy & not showing any signs of getting aggravated, again, yet, whatever.  They did her first eye test today, which we didn't find any results from.  Nurses & residents alike were not happy that that part of the equation has not communicated at all.  One of our favorite nurses is on tonight & she said that by the fact they didn't communicate at all is for the best, as when they talk to them/residents/team etc that there is a concern, so the mantra of "no news is good news" is what we get to go by till we find out for sure tomorrow.  Hopefully we don't have to wait till Monday, that'll be a wonderful agitation.  It's an awful test to watch I was forwarned so I stayed away.  It puffed up the right side of her eye/cheek area & could tell there was some discomfort there.

 Because of her full day I didn't do k kare tonight, hard to unravel the little bundle when she was finally content & resting comfortably.  Her lungs are looking good again as the lasics have run their course & she isn't retaining water anymore, again, yet, whatever.  Her feedings are going well & she's either holding her weight or gaining weight each night.  With that fluid she had on her lungs the previous weight of 3pds2oz we thought she got up to was properly not a fair weight.  But the 3pds .7oz she's ringing in at now is a reasonable reporting number.  Again, ounces & grams is a big deal in this little world.

Sally is holding down the fort in Eau Claire at work for Friday thru Sunday then she'll be back to spend some more time with Z.  I'll be heading back tomorrow evening as well as we're having dinner with Sally's friends & I've got a team event for the football team on Sunday for the Special Olympics Polar Plunge in Eau Claire.  They handled the one in Menomonie just fine without me which was great, this one is way bigger & apt for people to screw it up so I better do my best city worker impersonation & "supervise" with my bum hand, because I sure am not pulling people out of that water!

Jam Packed day

Zoey had an interesting day. They've increased her feedings again, which is great obviously as she's digesting & putting on the weight she needs to catch up. Found it interesting on our baby app that gives updates along the gestational timeline on various things I have that it says that your baby should be at around 3.75 pounds and the size of some exotic African fruit. Well we might be a bit behind on the weight but I have to say for us to be able to see Zoey grow from something SOOOOOO small and slowly mature is an incredible experience, despite the absolute crap going along with it. She looks like our little peanut anyways, not some silly fruit only my Aunt Stacy would eat anyways ;). The turned the pressure on her c-pap back up a bit so she could have the oxygen pushed in lessened, which will hopefully allow for her to get the fluid off her lungs, which should be off very shortly, if not already. Several labs were run as well to check in on several important different markers & all came back okay.

Nice pic of her stretching & putting her hand behind her head while I changed her, she seems to like it when I change her & talk to her, seemingly opens her eyes every time. Gosh I'm a sucker already lol.

4 hours of appointments today for me on stuff I should've had done on Monday, mixed in with apologies from 2 different departments. They may do some amazing things down here, but they sure make the day to day stuff difficult, even for themselves. Throw in a dead battery on a 3 year old vehicle & getting a jump in a parking ramp & wasting away for 2 hours at Ford & you've got a full day. But, I got cleared to see Zoey and was able to spend some quality time with Sally & Z while they did their K Kare. Not being able to see her for the past nearly 3 days with being only 2 blocks away has been awful & hard on Sally, her being away at work, not being able to see Z herself & help me while I was attention seeking being sick, haha. But, I'm getting better and at dinner tonight we had a neat moment. While Sally was away from the table the waitress came up & asked,"how long have you guys been dating?" I laughed & made my ring obvious and said,"we've been married over 5 years & together for over 10." She responded with a great compliment of,"oh, you guys seemed to enjoy each others company so much, I thought you guys had just started dating." I thanked her, reflected, & shared with Sally, which she, of course, made a silly joke out that the waitress was probably trying to make a pass on me. Obviously not. But we laughed about & agreed that we do enjoy each others company & makes me happy that it shows.

We also had to move down a floor as they are renovating the 3rd floor next week. As we are designated a "long term family" we were guaranteed a room as they will be closing half the floor for 2 weeks and then the other half for the next 2 it appears. Unfortunate for some of the other families, however frustrating we have to be here, selfishly grateful we don't have to move to a hotel & deal with that mess. So those of you that send cards & care packages and random much appreciated things (little spoon!), we are now in room 204, same address which was 850 2nd St SW Rochester MN


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Step Back

Low moments today. Zoey has developed a blod clot around her central line that has apparently been there for awhile, which they discovered when the pressure of the pump pushing things in was working harder. "Happens commonly" with a foreign body that the body reacts to it, as I can recently attest to with my staph infections in my wrist due to my hardware. They have removed the line & put in another periphery line & hopefully she only needs that for a few days & then possibly no line at all, if everything goes as possibly well as it can. They also down-graded her level of c-pap, which means back to the big tube & hat to try & help her work a little less to get the fluid off her lungs. Sally is back tonight so she is able to spend some time with her today, as I'm still not able to be around until I get cleared tomorrow at my doctor appointment.

Monday

Tonight's update is going to be very short.  I have become so sick in the last 24 hours it's almost laughable. So sick I didn't dare go see Z, which I feel absolutely awful about.  Called several times and they changed around her course of action as she's been working harder to breath the past few days.  She has water on her lungs again so they are doing another round of lasix to get that better,  but they increased her feedings so that's good.

Weekend Update

 Great weekend for Zoey & family.  Zoey got to do Kangaroo Kare with both Sally Saturday & Sunday before she had to head back to Eau Claire for work these next few days.  I got to give her a "bath," more so a scrub-down than anything, followed by a K Kare session of my own this evening.  Amazing how her stats are at their best when she's doing K Kare with both Sally & I & the hours just melt away.  She continues to push through on her feedings & putting on weight, she's now up to 3 pounds, to the very ounce!  She's opening up her eyes a lot lately as you can tell in some of the pics.  She's didn't whine a bit during her bath & seemed to really enjoy being rubbed down & cleaned up, can't blame her!  If I didn't know better I could have sworn she was leaning into the wash cloth.  During one of Sally's K Kare sessions Zoey lifted her head right off Sally's chest, showing some muscle building & getting stronger.  Her belly is still being watched carefully but the ports ( beneath the diaper) still are looking good & even better over the past few days.  All we can do is keep on keeping on.  Another family has came in the past few days with nearly Zoey's exact weight, but born a week earlier than Zoey's 26 weeks.  Heart issues & massive brain bleed concerns are being monitored.  We talked several times today & talked extensively during my K Kare time so they could talk out what we had went through weeks ago & see something tangible they could hopefully look forward to with me holding Zoey & putting on weight etc.  Their little girl has heart surgery tomorrow at 10 days old & 1 pound 9 ounces.  Scary stuff.

Sally's Brother Jesse, his wife Janine, their kid Kaden, along with my uncle Andy & his wife Stacy & their kids Grant & Dillon came down Saturday afternoon/evening.  We all went out to dinner at a local establishment & went back to the hotel where everyone by chance was staying at.  Little pool time for the kids & everyone was pretty much wiped out.  Sally had breakfast with Janine & Sally's sister Allison, who drove in from Sioux Falls, while I hung out with Andy & family.  Everyone dispersed throughout the day & Sally went home for the next few days.  I know it kills her to leave Zoey, but it's a few days & she'll be back & can have a few more days together.

Mixed day

Kind of a 50/50 day for Zoey. While they started her back up on minimal feedings, appears that one of her port holes is not doing so well & is officially infected, so the bag is now off completely until the redness & everything heals to put it back. Her demeanor though is unchanged & she's opening up those beautiful eyes & checking things out while being her feisty lil self. So, as we've become accustomed to, we roll with it and hope for the best. Encouraged though in the fact she's still outwardly looking good for the most part. Hopefully everything on the inside is behaving & getting better.

My appointments went okay, apparently I have 2 different strains of staph infections. One fairly aggressive hence the antibiotics change that will focus more on these. The ID department doctor apologized for her nurse not calling/calling me back on my antibiotics. She wasn't pleased so hopefully doesn't happen to the next person. Got my bandage removed and is doing well for most part, still on painkillers & feels like crap but name of game, 4th surgery in 9 months will do that.

Sally is back for the weekend, great to have her back and have our version of "family time" for the immediate future.

Warning: I'm posting my post-surgery pic of the wrist as well with today's Zoey pic for those of you that have asked to see it, the other side is sliced too about 2/3 of this length, about 4 inches.






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An interesting Day for Zo & Ray, Sally's day was boring :)

Zoey continues to have tummy issues, & while no where near what she was before with symptoms etc, some of her levels continue to incrementally rise, which as wrote in the past few days, has brought caution.  They have decided to put her on antibiotics to try & snuff out whatever is going on, as the hope as it may be coming from some slight redness, possibly infection, coming from one of her surgery ports (the yucky one), which makes sense for that to happen.  She continues to act normal, little feisty, little annoyed, so they continue to have her on her pain killer/soother.  Which for all intents & purposes, she is addicted to, as she's been on it for so long for what she's been through, again normal. So we have a little junkie baby, ha ha.  Good news is she's put on solid weight in the last few days.  She is now OFFICIALLY 2 pds 13oz & some odd grams.  So she's exceeded her birth weight by over a pound (1 pd 10oz) & according to the docs, unless she gets sick sick again, she shouldn't fall beneath & will continue to go up with the nutrients she's being fed.  The significance of this is she's now over half way home in terms of weight in being able to be able to be transferred back to Eau Claire, assuming her surgery ports stay okay & they don't have to go back in to fix the intestines again.  Keep those fingers crossed.  Had a great conversation with my uncle Andy last night that has made me reflect a lot & I found a passage that has soothed me in the past few days that hangs in the hallways of RMH.  "If it beyond me, let me hand it over to God."  I attempted to look it up but wasn't able to find it anywhere so it must be a saying out there commonly used.  By no means am I going to become preachy in these postings nor do I need it from anyone but a select few, but it has brought me to a calm center with everything that has happened with Z, Sally's initial battle, & my blasted wrist.

I received a call from the company that is being used to drop ship my meds to me that an order was made to them to change my meds.  I confirmed the address & clarified what I did/didn't need for peripheries & wondered what was going on.  Called the hospital, spent an hour on the phone, left several messages for my "team."  What a surprise, not a SINGLE call made back to me or voicemail for that matter, I'm still in the dark 14 hours later.  Amazing, my entire med list is changed with no notice as to why.  The laugh-ability continues to mount of my entire "Mayo" experience.  The meds arrived at RMH at 6pm for me to start taking.  New Orleans this morning to Rochester MN this evening.  The amount of money is pharmaceuticals is disgusting.  I keep reminding myself that Zoey's care is amazing & I'll continue to battle through with my stuff.  I have a follow-up with my surgeon tomorrow who has NOTHING to do with my change in meds as they have an entire department that controls that side of things down here, guess get to add to the circus and get some answers, good or bad.

Sally worked on her second day back & comes back tomorrow for the weekend.  Relieved she's coming back, Zo & myself miss her.  Zoey & I got to spend some QT tonight doing some Kangaroo Kare, which I haven't been able to do for weeks, just as Sally hadn't due to Zo being so sick.  It's amazing how the hours just melt away holding her.  Intended to be an hour, suddenly 3 hours were POOF gone.

2 days of updates & Zoey is 5 weeks old today

Apologies on not having update yesterday, day got away from us going back to Eau Claire for the night yesterday.  Zoey is doing okay.  Having some tummy issues once again with her intestines however she's being watched over very carefully but the surgeons, NICU doctors, & nurses.  Not Hi-alert but definitely needs to be monitored as need to make sure we don't go down the path we previously experienced.  She seems very content over the past 2 days as positive, as they had to switch her to a different C-Pap as she wasn't quite ready for full time Hi-Flow which happens commonly with the stages preemies go through.

First TRUE Daddy/Daughter kiss  (my head wouldn't fit in between the top of the tube & bottom so they had to slide her head out for me.  Slightly embarrassing however I got the better picture!

Sally went back to work today as well.  Think she handled it fairly well, as well as one can with my in-person check-in during the day through a phone & steel doors for a drop off of Erbs & Gerbs & Mt Dew for lunch & talking on the phone on my way back to Rochester.  Those of you that already know Sally is a Correctional Officer will hopefully find this funny, for the rest of you, loosen up! : )  I'm sure she's a bit exhausted & will be adjusting going back to work.  Thankfully it's only for 2 days then she's off for 3 so she can come back down & be with Zo.  Uh oh I think I found another nickname.  Zoey & Z & Zo & Peanut are officially acceptable, lock it up.

Sally's head fit..........showoff

I had an appointment with my Occ Med doctor for my wrist, he obviously wasn't too thrilled with my infection & subsequent surgery, nor was he surprised about my Rochester ER & general experience, apparently a running joke within the Mayo system.  Also had my "3rd party nurse" from the Worker's Comp company join the end of the appointment.  Someone should pray for her & that company's eternal soul.  Truly showing the business side of things despite extenuating circumstances.  As one may infer, I'm exhausted & need to hit the hay.

It's possible she was covering her ears from my awful jokes, or singing, or any number of  other things

  

Tuesday Update

Zoey continues to do well with pretty much everything so far a week & a half out from surgery. Feedings are going well, Hi-Flow is going well, surgery ports are doing well, & she put on a little bit of weight again after losing some yesterday.  Amazing how at this size grams are a big deal, up & down for that matter.  Keep the hope up that we don't have any more setbacks & keep moving forward.  Got some great shots today of Zoey & her pacifier & Sally getting in another Kangaroo Kare session. 

Had my blood draws today & site care for my pic line which took awhile but got done.  Got a call midway through the day that some of my levels were off so I had to go back tonight for the 2nd time to get blood re-drawn to figure out if I'm on too much/too little meds, hopefully find out results tomorrow & see what's up.  I'm feeling a lot better than the other day though as I'm resting more & taking it easy.

Pictures from tonights Kangaroo Kare

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Location:14th Ave SW,Rochester,United States

Hi-Flow!!

Zoey's having a great & important day today.  She got a bath that Sally gave her, which she was in great need of, however with all the stress she has been through they were holding off.  With all the edema she had got rid of some gunk had built up that needed to be cleaned off & now she's all shiny & new.  The big news is Zoey was moved to Hi-Flow, essentially a lesser c-pap, way less tubing, & less forced pressure into her lungs.  This is big as it's more improvement & showing she's recovering nicely ahead of schedule.  Her ports are still performing well & have the surgeons happy with every visit.  Her feeds are proceeding at a minimal level however she's putting on the weight she needs to, now ringing in at 2 pounds 9 ounces.  She looks even more content & comfortable since going on a few hours ago.  Hopefully she stays doing well with it but all signs are pointing towards that continued progression. 

I continue to be a bit of an apparent drama queen as I haven't felt too good today but hoping it's just the stuff I'm on & recovering from the surgery.  I have a follow up tomorrow morning for site-care for my pic line & blood tests, so we'll check out what's going on & see if I need to be put on something else at all.  Sally continues to be the rock for both Zoey & I & is doing well with pretty much everything.  Plan as of right now is she'll return to work Wednesday as Zoey is doing so well & we don't want to use up all her PTO so she actually has some when Zoey can get out of this place.

Reminder of the unknown

The baby I've talked about the past few posts passed away. Watching the family and parents go in & out of the room they had to themselves as we either came by or checked into Zoey's room was heartbreaking. Just a stark reminder of the fragility of everything around us & what we have no control of. Makes me so grateful for the healing Sally & Zoey has experienced over the past month thru conditions & surgeries. Guess we can add me to the list for current healing as well. They had a lot of family there so hopefully they are all there for each other & can find a way to heal & cope.

On that note Zoey had another day of progress. Day 2 of feeding again, which has been okay but not quite as well as hoped, but not unexpected & will be up & down as she gets going again. She's now up to a whopping 2 pounds 7 ounces, so progress is progress & we'll definitely take it.


Aunt Jan, Uncle Billy, Krista & Allen came down and had a great afternoon of visiting & laughing, hard not to when Billy comes around! However I seem to be the brunt of the jokes, per the norm haha.

I received my IV antibiotics overnighted & have a neat system that I'll be able to do on the go, at home, NICU, wherever. Takes about 2 hours per time, which will be twice a day, and while annoying, is way better than the over 3 hours twice a day at the hospital. It's eerily similar to the size of a grenade, so it's my grenade IV, it's the bomb..........hahahahaha


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Zoey continues her hot streak!!!

Zoey continues her hot streak again today. Got back into getting feedings of milk by her tube, and continues to do all the work herself breathing. Her lungs are very strong & do better than many babies brought in with respiratory distress, that lung development booster Sally got before getting cut has helped so much it's incredible. Her lung strength could've went out the window with dealing with the NEC & surgery recovery but she continues to fight & impress! Got a picture of her chillaxing on her belly up close & personal.


The baby that crashed the other day & had emergency surgery is not doing well. The parents are very young & very scared. The dad is a lot like me & is so invested I've seen him cry a lot, just like I did & have when things are scary. They seem to appreciate when we give them some nice words & advice, other than from the blue shirts we get it from all day long. Unless you've been in it, you can't compare, you can't relate, you truly don't get it. That's why regardless of background a lot of us parents are able to bond & try & work through it. I feel for them so much as they were apprised to be ready for their baby to not make it. We've had a couple conversations that warned of possible outcomes like this, but not the heaviness that they have been going through.

I was finally discharged today in the early afternoon, after 2 days of poor communication amongst themselves & to us to go along with no timeline for their own expectations. That being said we have found the culprit of what happened with my arm, a staph infection in both my radius & ulna that resulted in the previous posts hardware removal surgery. As we speak I'm getting a vancomycin IV at Mayo Methodist, which I will have to get twice a day, every day, for the next 4 weeks at minimum. Takes about 2.5 hours each time, so needless to say this will be another annoyance we'll continue to work through. They are overnighting a self-administered IV unit that I'll be able to be taught how to use tomorrow night, so I'll be able to be somewhat mobile with it, maybe Zoey & I can share an IV pole?

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Never a dull day

Zoey, thankfully, is a boring update once again. Breathing well, c-pap going well, urination is now normal, her ostomy bag is collecting & doing well, & tomorrow she gets to to back on feeding tube milk. Sally was able to go back & forth between Zoey & me while I waited for doctors to do what was supposed to be accomplished. Expectation was set today by 2 different doctors that I'd be out today, however here I sit in my hospital bed again for the night with a nice shiny pic line for antibiotics for the next few weeks I'll have to come in for to get transfused. I was only able to see Zoey twice today for a total of about a hour'ish as I waited around for specialists that either never came or showed up at the end of the day. After my ER nightmare Saturday & the mass confusion from today, I'm mighty thankful for the care Zoey is getting. My adult viewpoint has massively slipped of this place however and I'll leave it at that. Hopefully the left hand knows what the right hand is doing tomorrow & I can actually get discharged & actually be useful to Sally & Zoey tomorrow & doesn't take the whole day.

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They said no, I said Oh I don't think so!

Pushed back on not being able to see Zoey. They relented. Sally walked with me while I pushed my pole of goodies through the buildings. Went slowly & a bit dizzy but we made it. Put my hand on Zoey & everything was okay. What a wonderful way to end a day.


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Zoey did great again, I failed

Zoey continues to do good,  feisty & combative, (can't wait for that when she's fifteen) and is now ringing in at a near official 2 pounds 5 ounces.  She's is handling the c-pap very well & was fitted for her bag today.


  If all goes well they plan to reintroduce Sally's milk on Friday in a very small & incremental process again.

My surgery unfortunately gets a big boooo for the day.  Infection in both the radius & ulna & hardware removed.  At least tonight admitted & more likely 2 nights in & released Friday, wonderful way to spend my 30th birthday, at least it'll be memorable.  Rather shook up I won't be able to visit Zoey , just a building away (attached though) & a floor down.  Already asked if I could push my IVs etc & see her, rejected.  Well here's to Zoey doing GREAT on her 1 month old birthday!!!

Pic at perspectivereboot.blogspot.com

Exceeding expectations

That's the phrase of the day, as to quote Zoey's surgeon when he came in to check on her today. She's going to the bathroom the way she needs to, she's been extubated and handling that great, looks even more back to herself, & is flailing & swatting at the nurses, just the way she was nearly 2 weeks ago now. She's even rolled onto & resting on her belly, 4 days after getting sliced, even faster than Sally, ha! She's developed quite a following with her nurses as they come & check on her even if they're not assigned to her or even in the same area. Great to have a great cast of care around her that truly feels for her, & us I suppose.

Had another scary dose of reality as all of the parents in the NICU room we were in were rushed out suddenly as one of the new babies that came in had to have emergency surgery on the spot, which they rarely do in this hospital. You could tell the couple was freaked out & were shaken. The boyfriend/husband happened to ride the elevator with us as we were going to dinner & Sally & I reached out to him that if he/they ever wanted someone to talk to, or vent to, ask questions, whatever, to just come ask as we've been here awhile & know the ropes & know how scary it is. He seemed a bit caught off guard at first but rallied & was genuinely thankful & gracious as you could tell he'll need someone to talk to with all of this, just as we did, and still do for that matter.

As for me, MRI came back inconclusive, so here's to hoping that its just a bad tissue/muscle infection they'll remove & some wonderful bone scraping, which should be a good time. Guess I'll be finding out for sure when I wake up! This whole not eating for 12 hours stuff is a bunch of crud, no fun haha. 1030am can't come soon enough. Good thing is Zoey will be just a few floors above so Sally will be able to conveniently go back & forth, what a joy for her I'm sure!


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Interesting Day

First & foremost, Zoey is continuing to have day after day of improvement. She continues to have big diapers (urine obviously) & the edema is nearly gone, thankfully she no longer looks like the michelin man as her skin is returning with the wonderful elasticity babies have. Her ports are doing well & functioning the way they're supposed to. They've left her vent tube in still today as she continues to have a bit of discomfort at times, coin toss if it's from the surgery or the fact she absolutely hates the tube as she continues to try & yank it out. Sally actually had to calm her down a bit today as she almost got a real good grip on it while her nurse had stepped away. You can really tell in the picture how much just in a couple days how much more back to normal she looks, as much as a 2 pound baby looks normal, for that matter.


Unfortunately we didn't get to spend much time with her today as we were stuck waiting at a doctor appointment for me. Over the last few days of last week my pin site where I had my pin pulled from my car accident in May started aching. On Saturday night I went into the E.R. & spent essentially the entire night there, 11pm to 630am, in what was the single-most frustrating & disappointing experiences in healthcare I've ever experienced. Those that know my history know that's saying a lot. I'll stop at that explanation as an effort to keep this journal family friendly. Sunday some nasty stuff occurred with said site & immediately at my appointment today a MRI was scheduled and surgery was scheduled for Wednesday, as I have a bone infection in at least one of the bones my pin went through. If it's one, they scrape the bone & while unpleasant, will be a month or 2 of discomfort. If it goes to/thru both, I have to have the hardware removed, which is a big deal & I start over from my already now 9 month ordeal. Hopefully the MRI results will be available tomorrow afternoon & they'll definitively be able to let me know our expectations for the surgery Wednesday.
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Day 2 continued improvement

Zoey continues to improve.  She's nearly off of both of the pain-killers she's on as they have to ween her off carefully to avoid damage & addiction.  She continues to get rid of the edema with great urination & is looking even better than yesterday.  She continues to be getting all her nutrition from the supplements they're giving her and is still at least a week out from being able to get milk again.  Her surgery ports are still looking good & we were there when the surgeon resident stopped by to get a look at her & continued to be pleased with the sites.  The neo-natal doctor on this weekend, who has done a majority of her lines, was so pleased you could tell he was tempted to remove her breathing tube & extubate & let her go on the c-pap again as her lungs are handling room air & more than adequate breaths per minute.  They're going to continue with the tube though for another day so she can continue to focus on the edema & healing.

Sally's high school friend Niki & her father came down & spent the afternoon with Sally as I stayed back at RMH this morning as I wasn't feeling too hot.

Day 1 after Surgery

Zoey is doing very well day after surgery. Her drugs have been gradually reduced, her heart rate has dropped from the 230s to the 130s, her blood pressure has held true with a little bit of help which they were weaning her off of even more as the night time nurse came in. Her biggest issue all day was her urine output, as it was good in the morning however was next to nothing all day. They introduced another drug to get that going which by the end of the day gave the results she needed. Her surgery ports were looking good so far & were examined by the surgeon & his residents at a few different points today & they were pleased as she showed no signs of infection & good color. While her edema is still significant, it's beginning to go down quite a bit. If you look at the earlier pictures I posted to what I am now going to, you'll see all the fluid weight she has put on, which, to this point, isn't good for a baby still under 2 pounds. That being said this is the road to recovery she needed & she's obviously a feisty fighter.

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Sally's family's friends Tom & Wanda and Sally's parents came down for the day and we had a great day of laughs at each-others expense and much needed levity from this past week.