Whole lot of waiting & a moment of sheer happiness

Another day of questions & little answers. Getting a few different answers & comments, & guessing for all intents & purposes. Had to vent this evening to the neo-natal head again which resulted in even more second-guessing. Surgeons want to wait, NICU wants to proceed to surgery, surgery residents aren't sure exactly what head surgeon wants to do, still haven't met the head surgeon. Not impressed with the past 2 days. Which I, of course, made people aware of & resulted in a quality representative come see us which our nurse had never seen so that was interesting. In mid typing the NICU charge resident called & said she is not on the official surgery list for tomorrow completely different story from Wednesday as we were told if it was status quo for her levels she'd be going. With that being said her surgeon may completely flip his mind tomorrow after seeing her for what will be the 7th day of only having okay levels by massive amounts of help from the drugs/supplements. It's not that we want surgery by any means on our little girl, however this course of poor & inconsistent communication is beyond tiresome. SO, as of now we get to flip a coin in the morning on what we are doing. I know many people want updates but once again, our schedule, it'll be posted when it gets posted.

Our moment of happiness & joy was when Pastor Tyler from Sally's childhood church, who married us, came down & gave Zoey her baptism in the event this surgery goes down or if anything should happen. It was a really special moment for Sally & I as it brought things to a calm & centered state amid all this craziness. We can't say enough how important it was to us to get this done & and the compassion & sincerity of Pastor Tyler in his willingness to come at a moments notice to visit, to talk, to give a prayer, whatever we needed. Beyond words how much it meant. Got some really great pictures...............but it was a crazy day & I forgot the memory card at the NICU.........tbpl (to be posted later (pretty sure I just made that up))


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Evening update

Alright so here we go. Zoey is still on a holding pattern. Belly is more distended, levels are all artificially being kept acceptable by drugs, machines, & a lot of help from the nurses & doctors. Not sure if it's full blown NEC or an abscess or blockage, however it's some version of NEC & complications from it. Head Natal Doc discussed with us this afternoon that she was in a status of 3 different outcomes. 1, she gets better by herself, not likely per the doctor. 2, she needs emergency surgery by a perforation or xrays get worse, which for all intents & purposes, are, as gas is not moving to her lower bowels so it's not coming out, and she's no longer stooling on top of that. 3, we go into surgery Friday, which is the most likely scenario. So we just wait, we see what happens, & we hope for the best. While tough we have some awesome nurses that are keeping things as loose as possible & providing quite a bit of levity. Sally & I need to get out of the NICU as our, specifically mine, stress level is elevated. On a lighter note, Zoey is 3 weeks old today, good job little peanut, you keep plugging on.

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Holding pattern

Zoey got a bit worse overnight with her stats however the xrays aren't showing any definitive results, any more positive or negative.  The surgeons don't appear comfortable quite yet doing essentially an exploratory surgery.  So we are waiting, waiting, & waiting.  Her belly is more distended & her levels are all barely stable due to all the stuff being pumped in.  So, hanging on & out. 

Day 5 of Setback

Updates for the day, here's the facts.  We got a 6am phone call that Zoey need to be put on more drugs due to the fact that her heart rate had went way up again, her blood pressure had dropped too much, her levels of sugar, platelets, her belly swelled again, they would be putting in an arterial line, but her breathing was fine & several other things that I can't even remember any more it's been such a long day.  At 7am got another call that they needed to re-intubate so she could focus all her energy on getting the infection taken care of (even though they weren't sure what was going on for sure) & get better.  At this point I knew it was time to get to Rochester as we spent the night in EC.  Sally & I hurried to Rochester & got to the NICU as one of the surgeons was putting a new arterial line into her foot as the one in her wrist was not outputting enough.  All day was x-rays, surgeons, specialists, forewarning the worst & hopeful that this latest blast of meds & nutrients would be enough to avoid surgery for NEC, despite the fact this wasn't absolutely a lock what was going on as there was no proof of a perforation or abscess in her belly.  Essentially we're hurrying up & waiting through the monitoring of what's going on for the process to play through.  The tone of conversations & bluntness of the specialists have us feeling that the surgery is going to happen, it's mostly just a matter of when.  Her stats for the day have improved as of this writing, however they're all forced by the meds etc.  So the conversation of "she has to tell us to do the surgery by getting better or not" has changed to "we're making her be okay artificially, not her making herself get better."  The chaplain came a few times & we prayed & cried & I had a fairly frank conversation on statistics & results with one of the neonatal heads so that was a positive.  So, Zoey will get x-rays through the night & continue to get her 1 on 1 nurse care & when the morning comes we'll know if we need to let the meds continue to take its course or the surgeons decide to essentially perform an exploratory surgery to find out what's going on with our little girl.

For those we haven't called back...we apologize but this is the most exhausting & painful thing we've ever been through.  When WE feel it's proper time to reach out we will.  Please be thankful for these updates & be okay with them, as this is enough of a chore at times.  We love you all.

Hurrying back to Rochester

Heading back to Rochester.  Got a 6am dropping blood pressure call & 7am we had to re-intabate call.  Supposedly to concentrate all her energy on dealing with infection going on.  I have about as much confidence in their prognosis lately as me losing weight, those who know me, that isn't good.

Evening update

Sally & I are back in EC for the night as I had appointments today.  Called on Zoey & she is still holding to how she was this morning, which was no worse but just a holding pattern of not feeling good.  Still very swollen & whimpering when changing diapers (micro version of course) but still giving response, which is hard to see as a positive, but it is.  Back in the AM till next week for more more appointments.

Sunday night

Zoey is a bit more feisty tonight again as I changed her & took temp.  Stooling has changed from marconium to what appears the transition stuff so that's good.  I'm talking about poop again, holy life changer haha.  She is not naturally urinating everything out though so her fluid retention has went to her lower body in some interesting ways. Her color is a bit better and her evening xrays looked better than the afternoon, so all in all a better evening.  Just have to wait it out & let the antibiotics do their thing & hopefully blasts whatever is going on away.

Sunday Afternoon 1/27 Update

For all intensive purposes we're in a holding pattern.  They have decided to hold off on the lumbar puncture as they're now treating with the thought that she was/is going down the path of necrotizing Interial Colitis.  Essentially concern is that's the scary road this could be.  Heart rate is still too high, glucose too low, hemoglobin too low.  While not meningitis thought process at this time, still no good.  If not treated correctly or soon enough we're looking at sepsis & that road.  Docs are confident with the cocktails of Diflucan for possible fungus concerns, Zosyn, Vancomycin.  They've cut all feedings as she is not digesting anything other than the pushed in nutrients.  She's now on her 3rd blood transfusion in 2 days.  While things aren't near as positive as they were a few days ago, she seems to have a bit more energy than what she has for the past 2 days.  We're being reassured that while this is a serious situation that needs to be addressed & heavily monitored, it's not out of the things they see or handle on a somewhat common situation.  Her color is slightly better on that note.  Good thing we're in one of the highest rated Level 3 NICU's in the world, bout the only thing keeping my own blood pressure from boiling.

Rough Couple Days

Zoey's is officially in her first "set-back," which we're forewarned happens with all preemie's.  The medications she's on isn't getting her better.  Her heart rate is still way to elevated.  Her hemoglobin is way low again so another transfusion is being ordered.  Her sugar is way low again, so more nutrients being pushed.  Blood cultures aren't showing anything so they're doing those again to make sure they're not missing anything.  She's not producing enough urine even through a catheter to provide a urinalysis so they're trying to flush her to get some production.  They're going to do a lumbar puncture this morning to look for the serious stuff (meningitis etc) & hopefully rule that out as soon as possible.  Sorry for crappy update, been a crap 72 hours.  Go Vikings.

Zoey update for the night

7pm xrays didn't look any worse, so that's good.  As of right now they don't see any tears in stomach/intestines as of the moment, so the suspicion is backed up guts essentially and some sort of infection that they are treating with antibiotics.  Their suspicion is her lines are the culprit of the infection, which happens all the time with preemie's.  She had to have a blood transfusion again to get her hemoglobin up which had resulted in how pasty & faded she was looking.  By the time we left tonight she was looking a bit better, not like previous days, but on her way back hopefully.  Going to go to bed early tonight with such a stressful day and tomorrow being a long day as well with going back to eau Claire & menomonie with my football stuff we'll need the rest!

Stressful day so far

Sally is being taken completely off her BP meds as her levels are now 90/63 so they're hoping that goes back up, and another followup next week.

Zoey is not having a good day.  Very lethargic, belly is very bloated, & her color is very pasty.  Certainly not how our Zoey normally is.  They've done a chest/Belly x-ray and labs to figure this out.  Her initial xray has some concerning areas of left vs right abdominal areas where there are density issues.  They'll be waiting to do another xray tonight and results of the labs to eliminate infection or if antibiotics are necessary or if worse case surgery is needed.

Zoey moves rooms

First off on Sally's results.  Hemoglobin went from 8.3 to 9.8, which is still too low, should be in the 11-15 for acceptable, but at least it's going in the right direction.  Liver function is up to par, & no risk for cardiac issues from the preeclampsia at this time & her platelets went from 56,000 to 292,000 in a week, so obviously the iron supplements have worked!  Sally's energy has also went significantly up, which I can definitely tell as her amount of talking & volume has reached near her regular amount.......... : )    So that's a relief, for some of us :)   She has another appointment to do actual check on her blood pressure tomorrow to make sure they didn't reduce her medication too much.

For our errands today we picked up Zoey's birth certificate from the records department of Olmsted County records, so that was kinda fun to have our very own child's funky looking paper & bad watermarks.  

At the NICU today, Zoey was moved rooms.  I'll be completely & utterly honest: I'm not happy about it.  While we do have a window spot, it's right next to another baby "stand," no separation between the families, a wheeled separator thing that is worthless & see-through, & less space, so the nurses are crawling over each other & us to get back & forth to Zoey.  While it does mean Zoey is doing better that she can be moved from her own "suite," she's still in the tube, still on all the monitors, etc etc etc.  It has more to do with staffing & efficiency that way.  So me, not being the smallest person in the world, am not happy.  Luckily I have the eternal optimist of a wife on near all things so I just take it & let her convince me it's okay (but not really lol)  I got to give Zoey her second bath, & dress her in her first jammie's!!!  So that curtailed a bit of my frustration as we wrapped up things for the night.  Good night!  

Zoey doing well again today 2 weeks old!!!

Zoey has been a rockstar the past few days.  Not only on the c-pap & using no tube forced oxygen, they've also backed off the peep pressure to her lungs from 10 to 7 in the last 2 days, which is a huge deal.  As the peep goes down it is more indicative of the fact she's breathing completely on her own & not needing the forced pressure to keep her lungs open for the nerve/organ/development.  While she'll be on the c-pap for a long time, the peep levels hopefully we'll continually be dropped depending on how she does.  Keep crossing fingers she does so well along with ours & everyone else's prayers, as her improvement by the day has been a blessing.  One not so pleasant moment was her new born screening today, which tests for over 50 different potential errors with metabolic issues & multiple others.  The lab techs failed twice on pulling the blood as they couldn't use the venus catheter for this procedure as the fluids within the line would contaminate the sample.   So a transport nurse had to be called in to do the draw & apparently the best place to get this sample from preemie's is through the head in one of the veins at the top of her head.  Unlike the last bone-head decision I made watching her be int-abated I chose to look away & not know what was exactly happening.  Of course I had to know later so I pushed Sally at dinner and she shared.  I need to start listening when she says,"you're not going like this" when she says that in regards to Zoey.  Lesson learned again apparently haha.  Zoey's milk intake has increased from .5 cc's every 2 hours to 1 to 2.6 to 4 cc's in the last 4 days, so she's went WAY up. Which is great as she's had minimal to zero residual (left-over in her belly) so it's moving down, however it is getting stuck in her intestines as her stooling has slowed again.  So back to suppositories unpleasantness & monitoring how she does.  However, I got to do the diaper today & she had a big duker so nurses/docs/parents happy, funny how a poop brings joy.

Sally's parents came down for the day & were a great help once again.  They made us a "picnic" lunch at RMH of corn dogs & corn on the cob, simple but great!  Plus Sally wasn't able to eat corn dogs while pregnant so a return to normalcy a bit there.  Krista went to Sally's doc appt with her while Allen & I ran a couple errands, had some coffee, & talked down in the Rochester "subway" while the ladies were at the appointment.  We then proceeded over to the NICU for some grandparent time.  I went and talked with another couple that is here that is going through a horrible ordeal getting their baby transferred back to EC after their baby was brought back to stable after she was brought to Rochester.  Insurance, staffing issues, & beds thought to be filled by possible births.  If we have this kind of problems they are going through when Zoey hopefully can be transferred I'm going to go ballistic.

We went back to RMH for dinner & Allen & Krista made us tater-tot hot dish.  Amazing how home made comfort food makes ya feel "at home" a bit & is so soothing.  Maybe why I'm so beefy, haha.  They went home after dinner & we headed back over to the NICU for our night shift.

Oh almost forgot to talk about Sally's doc appt to follow up with her appointment from last week.  Her BP has now completely flipped as being 100/50, which they are now concerned on as that's obviously way too low, so BP meds are being reduced & will hopefully improve her energy level, as she's been incredibly drained the last few days.  Hopefully this will be the answer as to why she's been this way & back to her normal self.  Labs were drawn for Sally as well for liver function, heart (for post-partum congestive heart failure concerns), blood platelet levels, and hemoglobin levels.

So, while back at the NICU........right now the nurses are struggling with moving the c-pap machine & getting it situated so Zoey & Sally are at least somewhat comfortable & relaxed for Sally's second kangaroo kare session.  Alright, things are set!  Time for a couple photos & sign off for the night. 

Amazing how days just fly by

All in a day back in EC, my 2 appointments for PT & OT for my back/wrist, DMV, bank, mail, Sally's work to check in & the day was shot in a hurried scurry all day to get back to Zoey.  Unfortunately necessary evils while we go through this process.  I gotta say it was impressive the amount of people that checked in on Sally while she was there at work, which was especially nice.  She obviously works with a great group of people, several new people whom I met today, beyond the people I've met at various functions.  I can tell it meant a lot to her with her co-workers questions, concern, & most important the congratulations she (we) received.    We got back to Rochester about 8pm & spent a little over an hour with Zoey.  She had another good day, which we have established that when we hear nothing, no news is good news.  They put on a new foam piece in between her nose & the actual C-Pap.  Apparently it's a new invention, or at least a TINY version of it, & they're rolling it out with Zoey, as she was very irritated on her lips, nose, & in between.  She looked so calm & peaceful we didn't want to disturb her, as this was one of the more calm & comfortable moments.  Just watching her at these times puts us both at ease & able to go to the RMH for the night.

Daddy's Turn to hold Zoey for first time

Sally & I slept in today after a long weekend & relaxed a bit, missed an alarm that we both slept through so we obviously needed the rest.  Went over to the NICU for a bit, Sally changed her diaper again and I got to hold Zoey today for the first time for 2 hours!  The time just flew by until my back seized up & I'm the one that needed the break.  The nurses were pleased with her stats while she was on me so they were going to let her stay as long as I could stand it.         In terms of her health they were able to reduce her respiration rate to ZERO, so she's breathing on her own completely with the exception of the PEEP, which puts pressure into her lungs, essentially so they don't collapse & continue to grow & develop the nerve endings/clusters/etc in there.  Her fluid retention has been reduced greatly in the past few days with the supplements she's been getting, reducing the Chronic Respiratory Disorder she's going to have while she's here & growing, which happens with baby's of her gestational age.  Sally & I are going to head home to EC for the night as I have to continue my doc visits for my wrist/hand tomorrow, have a good night home to take care of mail, start my vehicle in this ridiculous cold, & any other stuff we need to take care of. We'll be back again tomorrow after that.   

An amazing ending to a great day

 Allison & Ron came down from Sioux Falls again for the morning & late afternoon.  We visited at the NICU for awhile, went to lunch at Newt's North, and grabbed some Cherry Berry.  Allison & Sally got to spend some quality sister time together with Zoey while Ron & I went back to the Ronald McDonald House to watch the NFC championship game.  While the game was wrapping up two of my players (Jacque Ince & Corey Pederson) from my football team arrived as they came down to visit & meet Zoey.  Ron, Jacque, Pede, & myself watched the rest of the game & Sally & Allison came back to the RMH.  We all relaxed for a bit & then Ron & Allison headed back on the 3.5 hour trip back.  7 hours on the road for them.  Quite a much appreciated visit!  Jacque, Pede, Sally, & myself headed back to the NICU to meet Zoey.  Think the guys gained a massive appreciation for the situation & were a bit shocked.  It's hard to really wrap your head around how small she is until you ACTUALLY see her.  Pictures don't quite match the real thing.  Was really nice gesture for them to come down & spend a few quality hours of their day & share in the moment.  DRUMROLL PLEASE!!!!!  Sally got to hold Zoey for the VERY FIRST TIME.  As of this posting Sally is performing Kangaroo Kare with Zoey.  Body to body connection is an amazing therapeutic on many levels for Zoey & momma too for that matter.  It's been a long, fun, & truly exhausting day.  We are going to have a good night sleep...............oh wait, we have to pump every few hours, never mind haha!!!

10 Days old!!!

Quite the day for Zoey & the Roberts.  Sally's Aunt Jan, Uncle Billy & their kid Ryan came down in the morning from up north of the cities.  We had a great time introducing Zoey to them & had a nice sit down lunch with them, which was much appreciated & great to get out of the NICU & have a conversation with someone other than the doctors & nurses!  As soon as lunch was over my Uncle Andy & Aunt Stacy, their kids Grant & Dylan, & my grandma Carol came down from northern Wisconsin & spent a nice afternoon meeting Zoey, relaxing in the family room, & going back to the Ronald McDonald House to spend a bit more time together before they headed back.  It was great to see family & spend some QT with everyone.  These days get long of back & forth & the mental exhaustion that goes along with it.  As for Zoey, C-Pap was a success!  As of this writing she's been on c-pap for approximately a little over 7 hours & her levels are all normal & the nurses/docs are pleased.  This is the progression she needs to make & is doing well so far.  Mom & Dad are pretty stoked all things considered. Almost forgot!  I got to change her diaper today, it wasn't always the most smooth or coordinated effort as I felt like I was going to throw her out of the tube with how little effort it was to pick her up.  Essentially got the job done though!  A little concerning is her central venus catheter as of the moment, as her blood out isn't able to be drawn as of the moment, however her food/nutrients/supplements/etc going in are doing good, which is the most beneficial side of the catheter.  Guess we get to wait & see if it needs to be adjusted, moved, taken out, or whatever to get it functional again.  All in all, great day so far.  More family & friends coming down tomorrow.

Great Day for Zoey!!!

 So Zoey had her central venus catheter put in.  She was given glowing remarks by her doctor & the nurses on how well she took it & reacted to the medicine, the process, & how she's done so far today.  Sally was ALSO able to perform Zoey's FIRST BATH!  Pretty precious stuff watching all of this going on & taking pictures/video taping etc.  Watching being lifted & moved around by the nurse & seeing Sally doing "motherly" things makes me at ease knowing that after all of this, all of the time away from home, & whatever may come ahead, I've got a kick-butt wife/momma to our Zoey. While this is something I've always known, seeing it in action is pretty special stuff.  On another happy note, they're going to try her C-Pap again tomorrow morning, as her levels are normal & acceptable for them to try again.  Whether it's 45 minutes again, days, or here on out she has to fight to breath on her own & this is how it's done.  Plus, considering she's constantly tugging at her breathing tube, I'd say she's hankering to get that thing out & prove she can do this.

1/17 Update Written 14 hours ago

Sally is going on Iron supplements on top of her prenatal s  apparently 100% daily value isn't enough haha. However she was able to get around today without using a wheelchair up until about 6pm, which is significant progress. Hopefully the iron supplements will get her to a point where a transfusion won't be necessary for her platelet levels to be considered normal. Zoey was scheduled to get a central venus catheter today, however the boy next to her had one done & it took significantly longer than planned so hers got pushed back. Essentially it'll be long term more beneficial for needle pokes, transfusions, & every other listed thing they'll need to do. Massively invasive though which scares the hell out of me. Up through the inner thigh, out through the hip, up through the abdomen into her heart. If that isn't scary as hell I don't know what is. When they described the process I started sobbing a bit, just a little much to imagine for her to go through once again, but, the doc that does these is highly successful with them & very skilled. He has the respect of the nurses, which we've come to know & become very close with. So, tomorrow is going to be a stressed one. Need some extra prayers tomorrow, thanks everyone for the support & well wishes. Zoey, Sally, & myself wouldn't be doing as well as we are without them.

Evening Update Written Jan 16, 2013 9:04pm

Good day for Zoey, frustrating day for Sally. Sally's appointment for checkup from all of her issues from last week was 45 minutes delayed, which was frustrating as we were trying to get to see Zoe's social worker (standard for premie's) before she left for the day. Unfortunately Sally's labs were also poor results. While her blood pressure is okay, her platelet levels are 40,000 less than what the docs consider acceptable & her iron level are poor as well. So, we're looking at getting a transfusion again for Sally, similar to what she had got so she was able to deliver Zoey. Zoey, on the other hand, had another good day. She had stooled twice, which was a big deal, as she was having some issues passing up to today, which is encouraging. Because she was able to do this & her hemoglobin levels were good she was able to be removed from under the Bilirubin lights & swaddled & put in normal light. She looked as calm & comfortable as we've seen her since, well, birth. Krista was down for the day as well & provided a sounding board for questions for us, story telling, & help for me while we ran errands & coming & going from appointments & buildings, much appreciated by us. Exhausted & pump time, out for the night

Tuesday Afternoon Written Jan 15, 2013 4:58pm

Sitting with Sally while she's pumping in the NICU. Incredible how much more relaxed & happier she is when she's here & when Zoey is doing well. Makes me feel better too in turn. Zoey is doing well today. She was scheduled to get the umbilical lines taken out but....guess what......Zoey fought that idea too. They were supposed to move to an arterial line & pic line to reduce the risk for infection as opposed to the umbilical line, which is only good for a little over 10 days. They were going to try again later however the people that put them in aren't available anymore today so they'll try again tomorrow hopefully. Zoey is doing well with the larger breathing tube & they've been able to actually turn down her oxygen levels again already, so at least she's cooperating in that regards. A nurse that we hadn't met with yet was very nice & very informative on all the lines, tubes, etc that Zoey is dealing with. She explained a lot of things that we had heard already but was good to hear a "refresher" on things as we are on information overload the past week. Alright, Sally's done. time to go hang with Zoey.

Fight Night for Zoey Written Jan 15, 2013 12:27am

Got to Rochester, got checked in at RMH, met the awesome people that work here & got over to the NICU. When we got there there was a bit of commotion around Zoey. We knew something was up so Sally went & pumped & I went back after setting her up in the pump room. Zoey had either spit up her breathing tube or it had slid out. She proceeded to breath fairly well apparently on her own so they decided to put her on the c-pap machine, which would be well ahead of schedule & her next progression. The docs were encouraged & let her run on the machine for 45 minutes & we anxiously awaited the results for her CO2 suppression & how much oxygen she needed to keep safe levels. Unfortunately they weren't comfortable with her results & decided to put the breathing tube back in which meant intubating her again. I made the beyond regrettable decision to watch her being intubated. Not only did she turn horribly blue & look the worst I've ever seen her, she also rejected the tube & fought gagging it out with everything she had. I can't even describe how bad of an idea it was for me to watch this & I can't begin to properly put it into words. This process drug on for what felt like an eternity and was time for Sally to pump again, so there's your time frame for how long this took. I left & brought Sally to the pump room & went to the family room to relax & try not to freak out. We got done with Sally's pumping & went back in as they had finished up. We found out that Zoey went up 2 sizes of tubes before she took the tube & calmed down. Docs reassured us that she handled it all well as all her levels had returned to stable. Just a reminder of what the steps had told us; for every 2 steps forward there may & will be a step back at times. Just an awful reminder of that truth as she had been doing so well since she got there. We put up a "Milestone" calendar for us/nurses to write on for when anything significant happened so we had a timeline for us to look back on & appreciate the battle that Zoey is going through & fighting for so much.

Rochester bound again Written Jan 14, 2013 3:40pm

And we're off! RMH has us off the wait list & onto Rochester with a room waiting for us & be close to Zoey! eat more happy meals!

Monday morning 1/14 Written Jan 14, 2013 11:35am

Sally did way better last night with sleeping in our own bed for 2nd night in row as RMH (Ronald McDonald House) is still unavailable as of late last night. I'll be calling again this afternoon in the hopes that a spot opens up. Either way we'll take advantage of the discounted hotels through RMH if nothing opens up & head down to Rochester. We've been up every few hours doing the pumping & it's looking like we've got to actual milk phase. It's an amazing process I had no concept of what goes into or how much effort it takes with time, waking up, washing, cleaning, haha. While Sally is still in pain walking around when she gets up, I can tell she's wobbling better than in past few days. Long painful road but she's getting better & working her way through it, as she does with everything in life. Tough girl.

Sunday 1/13 afternoon Written Jan 13, 2013 2:45pm

Still sitting at #3 on the Ronald McDonald house waiting list, which is where we were last night. We were 28th as of Thursday night so guess I shouldn't be worried, however need to get down there & try & not be frivolous with time & $ at the same time. They offer vouchers at local hotels at a discounted rate so we may take that route if Sally's up to it. Otherwise we'll stay home for another night, which is good as we can slowly get things together for clothes & planning things out etc. Sitting watching the Atl/Seahawks game with Sally is great. Kind of our Sunday routine when she's not at work so the sense of normalcy given the situation is much needed.

Sunday morning Written Jan 13, 2013 10:39am

Rough night for Sally, discomfort, sore, & waking up every 2-3 hours pumping to get colostrum going & pain meds. Think I'm getting in daddy mode waking up every time with her & getting everything ready & washed each time. So much for easing our way into it, ha! Allen & Allison came to get the dogs just a bit ago to go to Sioux Falls with her & Ron for the foreseeable future. An amazing gesture & burden they have taken on & eased us from while we go through this. Not near enough effective words to show our appreciation. Truly emotional experience saying goodbye to the dogs, fortunate to have them going to safe & caring home.

Sally is back asleep as needs to continue resting.

Sally Went Home tonight Written Jan 12, 2013 11:38pm

We got home at about 1010pm. After getting discharged finally by about 6pm, we headed over to the NICU to see Zoey. Krista got sent on a wild goose chase to find an open pharmacy unfortunately. Methodist was closed, target was closed, Walgreen's pharmacy was even closed. Felt bad as St Mary's (where the NICU is) was open the whole time however we had bad info that they closed early as well, lesson learned for all. Sally got some great qt with Zoey as did I while Sally was pumping. Got some great pics that I'll post in the coming days of Sally's family visiting. After we got home Sally was exhausted & in pain but toughed through pumping & communicating her med/BP check schedule that we needed to follow every few hours. I realize this is a bit all over the place but I'm exhausted as well. I'm out.

Saturday afternoon Written Jan 12, 2013 2:46pm

Jesse, Janine, kaden, Krista & I went over to the NICU after their arrival & visiting for awhile with Sally. JJKAR got Zoey an adorable assortment of gifts of a couple hats & a giraffe binky thingy, (guy speak), & a couple of books, which I'll be reading to her as she'll hopefully get my reading skills, as we know how much Sally likes to read! I brought her binky & one of the hats over to the NICU in a hopeful effort that she'd be able to have them in her room. The hat was so grossly too big even for normal preemie babies it again reinforced the fragile situation. The nurse allowed me to put her binky in with her inside her tube right next to her so she'll be able to sleep with it & have her very first "blankey." Made me cry, how fast my perspective has changed in 96 hours. I was excited about getting a charging port for my PS3 on Monday. Now I'm scrambling to wrap my head around her eventually coming home & dolls, stuffed animals, & whatever the heck else little girls like! We got back to Methodist & everyone visited with Sally a bit longer after she had showered & got into normal clothes for the first time in nearly a week. She's getting closer to not being so bloated & feeling way better, with the exception of the cut obviously. JJK & K went to grab Toppers for us for a late lunch so Sally could have some non-hospital food. Unfortunate that the best meal so far has been a grilled cheese sandwich, there's no way I would've made it through the food let alone everything Sally has went through. What a rock star.

Discharge day Written Jan 12, 2013 10:51am

Docs came in about an hour & a half ago and gave us surprising news that Sally would be discharged today. Kind of came from no where as the last 36 hours or so the hope for discharge today had went down with Sallys BP & liver function concern. However we got the okay & the morning has been levels checks & paperwork for the birth certificate, history, meds prescriptions, & other stuff that sally is busy filling out. Sally is taking her time with readying herself of reality of leaving today & all that will entail.

Gonna be a long day ;) Written Jan 12, 2013 4:23am

Sally is in a lot of pain already today & hasn't slept more than a couple hours. Starting to feel the pull of using her muscles with as much movement as she has/needs to do. She's concerned about her returned shortness of breath again. The nurse has pushed on her uterus & her pain is at a 7ish right now. She got another dose of pain meds. I took a trip to the nourishment center & she got corn flakes & ice cream for her little snack to tide her over for awhile. Back to try & sleep for awhile.

Nighttime update Written Jan 12, 2013 12:45am

The whole troupe went over to the NICU after Ron & Allison got into town. Was great to see our newly named Zoey Marie Roberts looking better with another day gone by. Her hemoglobin was lower so she was significantly less red. Her oxygen output was a bit low again so they needed to help her out with that a bit but well within the norm. We went with Zoey after it was in our "list" & hadn't actually looked up the meaning until today, which was "life," which we find to be beautifully fitting as she's fighting so hard for hers & the long one she's going to have. Allen & Krista were there & got to see her for the first time in 2 days & saw the marked improvement in her as well, so it wasn't just my bias! Looking forward to Jesse, Janine, & Kaden coming down tomorrow morning to see Zoey & us, HOPING Sally gets discharged tomorrow but BP is still a concern.

Written Jan 11, 2013 8:06pm

Sally dieresed (catheter) 9 liters from 12am to 7pm.  Which is awesome!  Sally has lost 2 pounds from yesterday to today's morning weigh-in, it'll be even more tomorrow as Sally is looking less & less bloated & beginning to look more like her beautiful self.  She's moving around back and forth in the room to the bathroom now that the catheter was removed which is helping with her mobility quite a bit.

Baby's oxygen pumping was decreased, so she's breathing on her own even more already, only after 2 days.  Strong little fighter!  Allison & Ron will be here in about an hour or so to visit & we'll go over to NICU to see her & hopefully have her name finalized by then!

Midafternoon Written Jan 11, 2013 1:18pm

Allen & I just back from EC. Sally is up in the rocking chair trying to stretch her knees a bit & get her back moving a bit. She walked down the hall & back with wheel chair balancing. BP meds are being upped in amount & to 3 times a day as its not getting better at all. Platelet levels are still low & liver function a concern. Still monitoring & being cautious.

Overnight update Written Jan 11, 2013 8:44am

I went home to be with dogs for awhile & to get good nights sleep with Allen. Krista stayed with Sally & got a good rundown of the evening. Night went ok. Lots of nurse checks so not to much uninterrupted sleep. Complains of some occasional shortness of breath. MDs aware and may order chest ray later if it persists. Put out lots of urine which is good. Pumped about 6:30 and maybe left side getting a drop. Hasn't eaten yet. Currently sleeping.

Mommy meets baby girl for first time (fully concious) Written Jan 10, 2013 9:47pm

Sally & I went over to the St Mary's NICU together for the first time. Sally was very tired and exhausted on the way over. Seeing baby girl for the first time was really hard for her, so small, so fragile. After a few minutes I asked if Sally could touch her & the nurse allowed us both to touch baby girl. Very tough, most difficult reality check for us our entire lives. Baby is doing well though, blood pressure is stable, platelet levels rising. She looks tough, just like her mama is



 .

Billing/insurance story Written Jan 10, 2013 4:14pm

As we rushed down here & things have been so chaotic, I haven't had or wanted to waste time going down to billing & hurrying up & waiting. Yesterday they called in the morning in the middle of being addressed by docs for the surgery, the later about 18 minutes after surgery for sally. Needless to say I was a bit frustrated as they had also been fairly rude & short. Then today they called right when Sally was trying to pump & move around. I got extremely frustrated & hung up on them. About 10 minutes later I went down asked for who last called me. The lady sheepishly raised her hand & I proceeded to state "I'm NOT talking with her." I walked after to a guy in a suit & sat down. He pulled up the file for Sally & baby girl & he smirked & said,"ha you've been marked as 'combative'" I laughed & said you haven't seen anything yet. The guy took all the information & signatures & gave me stuff for Sally to sign & was super. Wish he would've been the one had called!!!

Written Jan 10, 2013 3:02pm

Dressing was taken off the cut site, Sally has got up once to get weighed & move around a VERY limited amount. BP was way high earlier but was 115/81 when Allen, Krista, & myself got back from lunch. Hope was to be showered & over to the NICU unit by now but levels are too erratic still. Plugging away at progress.

Written Jan 10, 2013 8:18am

2 different visits from 2 different teams of Sally's on-call surgical team & maternal fetal medicine team to check in on how she was doing. Platelet levels are on the rise which is good, blood pressure is still high, 160/97 as of the moment, but closely monitored & not unexpected. Meal went done without a problem & Sally is working hard at improving her inhaling & exhaling. One of her arterial IVs is becoming an annoyance & bleeding so they are going to have that taken out.

Written Jan 10, 2013 6:59am

Sally had uncomfortable night of sleep, stuck to her back exclusively as being on her sides was way too much pull & stress on her abdomen. She was given a sleep aid & switched off of Dolloted to Oxycontin at night, she was put back on Dolloted so she can hit the trigger button as needed. She has pumped already and just ordered her first legit full meal. Big day ahead, a shower! Hopefully if she can hobble well enough and isn't in too much pain we can get in a wheel chair & shuttle over to the NICU to see baby girl.

Written Jan 9, 2013 10:06pm

Sally is having difficulty breathing after exhaling. Body is so exhausted she isn't inhaling which in turn is making her short of breath & unable to sleep. Nurses have her doing exercises on a breathing apparatus, similar to emphysema patients needing to reach certain levels.

Also had the breast pump on for the first time, obviously didn't get anything out but will be efforting every 2-3 hours to get her system used to producing & hormones working for when baby girl is able to take the milk down the feeding tube.

Watching many, many, many people walk in & out of baby girls' NICU room on the remote monitoring. Relief to have someone always monitoring, always adjusting for baby girl. Best care here, impressive.

Written Jan 9, 2013 7:23pm

Just got back from visiting baby girl in the NICU, she is doing well all things considered. White blood cell count & platelet levels are low but common in preeclampsia cases. She has her own room & has 3 nurses dedicated to her & an outstanding doctor overseeing everything. Her situation couldn't be better & stats/vitals very strong & STABLE.

Sally is doing great! Out of her drugged out phase and ate her first real meal that wasn't liquid in about 50 hours. Very tired still but doing great & extremely tough. Couldn't be more proud for how amazing Sally has done, responded, & battled.

It's a baby........Girl!!!! Written Jan 9, 2013 2:57pm

Ecstatic to say Sally is doing great, awake, sarcastic zingers & proud to announce all things considered healthy, 1pd10oz baby GIRL born at 12:56pm that we have yet to name

Go time Written Jan 9, 2013 12:53pm

At 12:28 Sally was taken from her room. Myself, Allen & Krista said goodbye & well wishes to her & she's off with an amazing team & optimism abound. This is the most stressful & chaotic moment of our lives & thank u for all the messages & prayers.

Written Jan 9, 2013 9:58am

After 3 days of no sleep & first shower, yes I know I'm the stinky kid, realized I wrote the my story section in the 3rd person. My apologies haha!

Written Jan 9, 2013 9:55am

While I was in the shower Sally began experiencing more abdominal pain, the nurse administered oxycodone so she's on her way to relaxing and hopefully getting more rest.

Written Jan 9, 2013 9:03am

Waiting on 7am & 9am labs however team reinforced that 5pm scheduled time isn't likely anymore and is accelerated at this point and will most likely be sooner.

Written Jan 9, 2013 8:23am

Sally is Playing words with friends for some mental stimulation, I think she's nuts & should relax but you all know Sally's stubbornness.

Written Jan 9, 2013 8:21am

Platelet level dropped to 29 over-night, liver function is causing concern from 3am labs. 7am labs ordered 2 hours ahead of schedule to keep an even better eye on situation.

Waiting on docs from shift change to review results to decide if 5pm c-section is still possible or if we need to move up yet again.

Sally just got another helping of Bicitra which is supposed to help with the severe acid-reflux she's experiencing, good thing we drank terrible stuff in college, she's well prepared!

How it all began

On January 7th, after returning from Michigan from a family trip with Ray's family, Sally felt progressively worse with upper abdominal pressure & retaining water became an evident issue.She called the triage nurse line & after some initial frustrations set an appointment with an on call nurse for her blood pressure. Immeadiately upon entering the appointment & getting her blood pressure checked she was admitted into Mayo Luther Hospital in Eau Claire.With her BP levels starting in the 140s to spiking to 174/109 over the next few hours while being monitored in the pre-natal suites of Luther, it became evident to the Luther staff that Sally was VERY sick & the concern for the baby became more & more serious. Sally's platelet levels had dropped into the 30s & caused great concern. They administered a shot of Beta Methazone steroid that helps with rapid lung development while in utero & began monitoring her urine for different levels we would learn more about later. At approximately 7:30pm the docs apprised Sally & Ray that an ambulance ride to either Rochester Mayo or Abbott Northwestern in the cites were in order. They were informed that a level 3 natal department was necessary for both the baby & Sally's continued care and monitoring. Sally & Ray chose Mayo due to Sally's insurance & the Mayo reputation.At appx 9pm Sally was transported by ambulance to Rochester Mayo with Ray 15 minutes behind bringing a vehicle & hurried gathering of neccessities from their home. Sally's parents Allen & Krista came down from their home in the Cities & met Sally as she arrived. Ray arrived shortly after & everyone got settled into their spots in the Rochester Mayo natal suite.Sally was quickly questioned with her symptoms, labs ran, monitoring of her & the baby's levels. At 11:45pm Sally & Ray were shocked to find out that this trip would not be a cautious trip to monitor but they would not only be not leaving any time soon but would also be having their baby being prematurely brought into the world by C-Section in the very near future. The BetaMethazone benefits were further explained with needing a 48 hour sequence of 2 shots & the landmarks of needing to get to 7pm the next night for another injection to continue the accelaration of the lung development.1/8/13The significant fears were confirmed of Sally's onset of sudden preeclampsia & severe HELLP syndrome the next day after monitoring Sally's urine for 24 hours that had started the day before in Eau Claire. On-going conversations & monitoring of Sally's blood pressure that was only being kept in check by Magnesium Sulfate, which greatly lessened her probabiity for seizure. Multiple conversations with multiple teams throughout the day gradually progressed to the urgency of Sally's condition & mutual concern for baby health & viability after c-section. Conversations of watching for brain-bleeding, breathing issues digestive isues permeated the many questions Sally & Ray asked multiple times confirming our apprehension & concern.Between doc & nurse visits Ray, Allen, & Krista had awful overpriced cafeteria breakfast & then later jimmy johns off campus. Sally rested on & off throughout the morning & early afternoon.Sally had an ultrasound in the late afternoon that confirmed proper growth for a baby at the 26 week stage we were in. Cranium devlopment was normal. Heart ventricles were working properly with kidney & umbilical cord function also appeared to be normal. Baby measured at 1.8 pounds, again normal for this stage. Normal was good news & provided some happiness for Sally & Ray as the baby was moving & active & again, "normal." Ray never thought the sound of having his baby being called "normal" would ever be as soothing & reassuring of news as he'd ever heard.At appx 830pm the "evening" team made Sally & Ray aware that surgery for the c-section would be scheduled for 5pm the following day on 1/9/13. Growing concern of Sally's platelet levels & BP have continued through the night.

A Whole New World

This blog actually started as a caringbridge site for my Wife Sally & our newborn baby girl Zoey, & the sudden & unexpected journey this has turned into with my wife's sudden onset of preeclampsia & HELPP syndrome & resulting in premature emergency c-section of Zoey. Through some frustration of the caringbridge site I've decided to create a blog as I'd like to keep writing about our family's journey.