Monday, January 31, 2011

Good Weekend

I feel like a broken record since Judith went on the antibiotics and was moved back to an open crib: she continues to do well, and is doing everything she should be doing.  She got both shots that she needed to get before discharge (Synagis and Hepatitis B), more than passed her car seat test Saturday, is gaining weight, maintaining her body temp, and taking all her feeds by bottle.  She's up to 5 lbs 5 oz, and is eating anywhere from 50-60mL each feed with one or 2 feeds at a lower amount.  The only thing left to do is her hearing test and finish the antibiotic treatment.

Now we're being told that she will be able to come home Thursday instead of Friday, mostly because we've completed almost everything that needs to be done.  We were a bit shocked when they were bombarding us with that last night (and personally I think the nurse practitioner and the nurse telling us this were a little forceful about the whole thing, and I almost felt like they were treating us like we are dumb/not good parents because everyone kept saying "Friday for discharge" and now all of a sudden the nurse practitioner decides to reschedule night watch on us and declare that we "will be doing it on Wednesday" without clearing it with our schedule first).  I get it that things can change, but good grief don't just start demanding that we're doing night watch on Wednesday and bringing her home on Thursday when we're walking in the freaking door and haven't even had a chance to put our coats down.  The nurse practitioner could've been a little nicer about the whole thing, especially since John busted his butt Saturday morning to make cookies for all of the NICU staff.  And the other thing that just royally pissed me off to no end was the nurse practitioner "joking" that she would take our baby out of the hospital Thursday and give her back "when we're ready to take her home."  Yeah honey, not really something you should be joking about.  I'm sure if I really wanted to, I could get her into a pile of trouble for even mock threatening to remove my baby from the NICU and take Judith to her home.  However, I'm willing to let her comment slide since we won't have to deal with her much longer (and I don't really know this nurse practitioner well, because I haven't interacted with her much over the last 2 months).  Vent over.

We have so much to do to get the house ready for Judith's homecoming, and I'm hoping to check a couple things off of that list today.  I have laundry going again, the bottle storage/drying rack is assembled and waiting for stuff to be put on it, and the bottles and all associated parts are waiting to go in the dishwasher for a good cleaning.  The dogs could use a good bath, but it's been so cold lately that I hesitate to do it.  But I might cave on that one and do it tomorrow night - they stink.

I feel like I'm spending another day frantically running around the house trying to get things done.  I guess it's good preparation for what it's going to be like once Judith's actually home though.  Everyone's going to have to adjust to a new routine and a change in environment.  I don't know what it's going to be like, and honestly I know we won't know until she's home, but I really hope we have a smooth transition from NICU to home and everyone can adjust quickly.  I'm sure being essentially shut in for the next 2-2.5 months (or when the pediatrician says RSV season's over, whichever comes first) will help us adapt to a new routine quickly.

Friday, January 28, 2011

8 weeks

That is how long we've been in the NICU.  8 long weeks of traveling back and forth to the hospital every day.  8 long weeks of seeing my baby x-rayed, tested, stuck with needles, connected to countless tubes and wires, and forced to deal with conditions that she shouldn't have to be dealing with yet.  8 long weeks of listening to monitors going off and checking to see if it's my baby causing the noise.  8 long weeks of medical lingo and learning how to care for a 29 week preemie.  8 long weeks of an emotional roller coaster, watching my baby mostly thrive, and watching her struggle at times.

We're finally nearing the end of our NICU stay.  We know that, and are looking forward to it.  Judith's still doing everything she needs to for discharge - it's the antibiotics that still hold us back.

She's up to 5 lbs 1 oz, and continues to gain weight well.  She's outgrown 2 of her preemie sleepers, not so much in weight, but in length.  I'm amazed at the variance in preemie sized clothing, even among the same brand.  And honestly, it kind of makes me a little sad that she's already outgrown those outfits.  I'm realizing how fast she's already growing, and I know it will only continue.  But I've made a promise to myself that I'm going to enjoy every moment of her infant years as I can, because before I know it she'll be in preschool, then kindergarten, and so forth.

Our journey is just beginning, and in the next week the path will begin to change.  Discharge is going to be a significant change for all of us, and it's going to take a while to get used to.  Both John & I are relieved to see an end to the constant running to the hospital, but we also know that we'll be hit with a different kind of exhaustion once she's home.  We're working on getting the house in shape again (somehow things turned into a giant mess in the past week - yikes!), and I'm trying to plan out when to start sterilizing bottles and whatnot.  I'm planning out how many outfits to take to the hospital so I don't have to worry about doing laundry more than once next week (some newborn sizes will have to be included since I'm now 2 outfits short in the lineup).  At the hospital, and once the antibiotics are finished, Judith will have her list of "to-do's" before she can come home: she needs to pass her car seat test (I'm sure that won't be a problem), get her Hepatitis B and Synagis (RSV) shots, and have her hearing test.  That's quite a lot to accomplish, but at least we have a week to get it done!

Wednesday, January 26, 2011

Snow...AGAIN...

Ok, winter.  You can officially be done now.  I'm not appreciating your at least once weekly big snow events.  You're not supposed to be doing this anyway - in case you missed the memo, it's a La Nina year, meaning that your patterns are not supposed to be similar to last year (which was, in fact, an El Nino year).  Oh, and to all the meteorologists who said that this winter would be "mild" and precip would be "average to below average" I give you one big giant raspberry:

:-P

So if you couldn't tell, and for those of you who are reading this from warmer climes (although I use the term "warmer" loosely, since it's pretty darn cold in the south right now too), we're in for another snowfall with amounts on the larger side.  I like to think of these snows as "landscaper storms" - meaning we don't have to worry about snow removal because the total accumulations are 3" or more.  I thought I had made a small pact with mother nature this winter: no snow until the baby comes home from the hospital.  So much for that thought.  I've said it before, and I'll say it again: normally I wouldn't mind the snow.  I happen to like it most of the time, thank you very much.  But this year is an exception, and I want all of that frozen goodness to melt away and soak into the ground.  It makes it so difficult to travel to the hospital, and I will go absolutely insane if I can't make it one day to see Judith.  I went this morning, and the roads positively sucked.  At least they were better for the trip home, and I intentionally didn't linger after her noon care so I could be assured I would make it home safely.  In retrospect, I probably should have either waited the morning snow out (and still wouldn't have made it for a care time or would have been able to stay long) or not gone up at all.  But I made it there and back safely, and that's what counts.

The dogs are less than thrilled about the snow.  We got close to 3" this morning alone, and they were having a fit about going out to do their business.  Buster refused to go farther than off the step, and Lady meandered around confused for a few minutes before finally deciding to finish.  I do feel bad for them - I wouldn't want that cold snow on my bare feet either.  I've thought about getting them some of those doggie booties.  We had some for our Westie when I was growing up, and she enjoyed them once she got used to them.  I'm just not sure that I want to have to worry about putting 8 booties on 2 dogs, one of which refuses to sit still to get dressed (hint: it's not Lady), every stinking time they have to go out.  It's not like they enjoy the snow anyway and want to stay out to play.  Heck, it's a miracle if they even get off the step and actually do what they're supposed to out there!  Once it's all over we'll have to clear off the patio again, and that should help improve things...and make for 2 happier Bostons.

Tuesday, January 25, 2011

Tuesday & Numbers

It was a week ago that Judith got sick.  She looks and is doing much, much better this week.  Let's hope we don't have any more repeat incidences!

We are on day 5 of antibiotics - only 9 more to go, and we can bring her home!  Just as one of the doctors predicted, she's more than ready to come home now, but the antibiotic treatment is holding her back.  As I said in a previous post, though, I'm glad she is and was there when this all happened because they were able to catch it quickly, and, most importantly, treat it quickly before it could progress to a severe state.

So in a nutshell, Judith is doing fabulously well, is gaining weight (she's up to 4 lbs 12.2 oz!), is taking all of her feeds by bottle (and more often than not takes more than her minimum feed amount, eating around 2 oz each feed), and is maintaining her body temperature.  I hope I'm not jinxing her by saying all of this!

I forgot to really commit some of her weekly stat numbers to memory, so I'll just post those that I can remember:
Weight: 4 lbs 12.2 oz
Length: 43 cm
Feed Amount: minimum 45 oz, taking anywhere from 50-60 at almost all feeds (1 or 2 during the day are a bit less, but she's compensating for when she takes extra) - translates to about 2 oz each feed

I'm excited to know that she will be coming home very soon, but at the same time I'm being really cautious about the whole thing.  The other 2 times we thought she was coming home she wasn't able to keep up with all of the bottle feeds and then she got sick.  Both John & I feel good about this time, though, and she's proving to us that she really can do all of this.  And she should be able to, based on her gestational age - as of tomorrow, she would be considered "term" if she were born.  She's still going to be a little peanut when she comes home thanks to the IUGR (intrauterine growth restriction), but she's doing everything she should be doing at this age.  Go Judith!

Buster & Lady had a big day yesterday.  They went to the vet for their annual check-ups.  Both were excited to see everyone, but Buster started to stress once we got into the exam room, and especially once he got up on the table.  He started to do his drooling thing (all over the vet's hand too - gross!), and when I was paying the bill he threw up a little bit on the floor.  Lady was jumping all over the place, and was even "talking" to the receptionist once she realized they were the center of attention.  They got their annual vaccines, and Lady got 2 treats because Buster refused to take his.  Lady was funny when we went to weigh them - she walked right onto the scale and stood still for the nurse!  Buster needed a little coaxing, but he too got up on the scale and sniffed the wall while being weighed.  And Lady apparently felt the need to get on the scale again, because she hopped up with Buster.  Overall, though, they were super well behaved - a good thing, because I had them there myself!  There weren't any other dogs there at the time either, and that certainly helped a ton.

Sunday, January 23, 2011

Moving

Judith has become mobile, but from in the crib.  Since last Tuesday, we've gone from the feeder/grower side of the NICU, to the intensive care side, to the quiet room Judith was originally in, back out to the intensive care side but right outside of the quiet room, across the intensive care side to a bed outside of the opposite quiet room, and back to the feeder/grower side.  She's also gone from an open crib to a bed with an overhead warmer to a giraffe with the top closed to a giraffe with the top up to an open crib.  That's a lot of moving!

Judith is on the mend, though.  Since Thursday, she's been in an open crib of some sort (giraffe or regular newborn bassinet) and has maintained her body temperature well, even after a bath.  She has taken all feeds from her bottle since she was allowed to start eating on Thursday - they were giving her plain breast milk up until 3:00 this afternoon when they began to fortify it again.  She is responding to the antibiotics, and gets her penicillin every 8 hours.  She was having a hard time pooping - she definitely had to go, would push and strain and have lots of gas, but needed a suppository to help move things along.  She gave John a nice, full diaper within 45 minutes of having the suppository in place.  Judith is such a good girl - she remembered our arrangement!  :-)

The best news of the weekend: her cultures all remain negative for bacterial growth!  They definitely caught it early, and thank God she was still in the NICU when this happened!  The early administration of antibiotics is, I believe, a major player in all of this, preventing further growth of the bacteria.  And the penicillin will help to completely wipe the stuff out.

She's been doing everything she would normally need to do for discharge, and if it weren't for the antibiotics, we would have been bringing her home this weekend.  But the good news is as long as she keeps it up we can have her home after her antibiotic treatment is complete!

Thursday, January 20, 2011

Today is better

The title of this post says it all: today is a better day for Judith.  She doesn't have that really "sick" look to her eyes anymore, her complexion is very pink thanks to the blood transfusion, she's responding to the antibiotics, she's finally getting to eat, and she's a crankopottamus.

I can tell that she's feeling a bit better today, but I can also tell that she still doesn't feel good in general.  She's angry about having the IV's in (and will probably be angrier once they get the PICC line in), but is happier with the CPAP off.  Judith was on CPAP for a little over 24 hours and was able to come off of it at 9:00 last night.  She's been fine without any respiratory support, and was actually on 21% with a pressure of 3 by yesterday afternoon (21% oxygen is room air).  So basically by that point it really wasn't doing anything for her except ticking her off.  She kept trying to pull it out herself - reminds me of when she was on it the first couple weeks after she was born.  She was always pulling it out.

They are going to repeat the lumbar puncture tomorrow to get another meningitis culture.  One of the doctors was a bit annoyed with the whole situation (not because of Judith, but I'm not really sure why - all I know is that he was not happy, and it could have been an annoyance with the lab or something).  He examined her, and wrote the orders to switch her antibiotics to a full course of penicillin, which will be given for 14 days starting today.  They're still treating her like she has meningitis along with the Group B strep, and if the culture comes back negative we can stick with the 2 week penicillin treatment.  If it comes back positive, we'll be looking at a longer course of antibiotics.  I'm hoping it comes back negative, and from the way it sounded during her exam this morning, a lot of the inflammation has gone down (her soft spot didn't feel as full as it did when she first became sick).

I'm sure Judith is a bit happier, because she is finally allowed to eat!  They had her NPO for almost 36 hours, and she was able to have her first meal at noon today - I gave her 10mL of milk, and she sucked it right down.  She was pretty mad at me because she wasn't allowed to have more.  She took her bottle again at 3 and did the same thing.  The doctors do have her on lipids and TPN again to help compensate, but I'm hoping that these can be stopped soon since she's allowed to take my milk again.  What's nice about this is that, unlike when we were working on getting her to tolerate her feeds, she is allowed to do cue-based feeds, meaning she can take a bottle whenever she wants.  The NG tube will probably have to go in for a little bit (her nurse didn't want to put it in yet at noon because she wanted to see how she does with the bottles first) - because she's sick and is trying to fight off the infection, she may tire out with the bottle feeds like she was doing Tuesday, so they will have to gavage her feeds if this happens.  Once she's feeling better and the antibiotics have a chance to work, she should be able to build herself back up to taking all her feeds from the bottle.

It's kind of funny, because the one doctor this morning commented that she'll probably be more than ready to go home soon, but the antibiotic treatments will hold her back.  She should be ready to come home once this is all over - she will be 38 weeks 2 days gestation by the time she's done with the treatment.

There's a real bright spot in all of this: they were going to do her follow-up ROP exam tomorrow, but decided to do it today (not sure why, but I think it might be because they're doing the lumbar puncture tomorrow).  She is at a Grade 2, which means her eyes are fully developed!  The nurse was very surprised, and honestly I was too.  I wasn't expecting her eyes to be fully developed until closer to, if not after, her original due date.  She gets to wait 6 months before having another follow-up.

It started to snow here.  Poor doggies - they are so fed up with all of this!  Buster still won't go much farther than the step onto the patio.  And John even shoveled a spot of grass for them.  Lady doesn't care - if she has to go, she charges out there, does her thing, then runs back into the house.  They're about as sick of this as we are!

Wednesday, January 19, 2011

Update

The doctor called me - they have the blood cultures back.  Judith has Group B Strep and related meningitis.  She remains on the current antibiotics, and is still responding to them, but they are waiting for the culture to come back so they can tailor her antibiotic treatment.  She'll be on them for about 2 weeks.

I can imagine that there's only 1 place she got it from: me.  I feel like the worst mother, and it's all my fault that my baby is suffering right now.  I was never tested.  I remember reading in my pregnancy books that it's standard to test for it late in the 3rd trimester, closer to delivery.  I never made it that far, and there wasn't time to test for Group B.  The doctor told me that they wouldn't have altered the course of treatment for Judith, because my membranes hadn't ruptured prior to delivery.

Because of the meningitis, we have no clue what the long-term implications could be.  All the doctor would say was that they would follow her closely in the developmental clinic and through early intervention programs.  At this point, she's not concerned with it being fatal.  I say as long as my baby is alive, any other complications can be handled.

It's going to be a very long 2 weeks.....

Sick

Judith is sick. Really sick. We don't know what it is exactly yet, but we do know it's bacterial. They're also going to keep an eye out in case there's something viral as well, although that's not looking likely right now.

She was doing fine yesterday, except for all of the desats, which we now know were subtle cues she was giving us that something just wasn't right. She went downhill fast - she was ok when I was here, but refused her bottle completely at 3. I left at 3:30, and by 4:30 they moved her to the other side of the NICU, started antibiotics, called the doctor to come and examine her, and ran tests for all possible infections/viruses.

She certainly doesn't look like my happy little baby right now.

The one comfort I have is they caught it early, started antibiotics right away, and they can continue to treat it with antibiotics.

Thank God she was still in the NICU when it happened.

Monday, January 17, 2011

@#$%*&^!

Warning: Some may find this a little TMI, so skip it if you're squeamish.


I went to the doctor this morning (primary care doc this time), because I developed a small problem in one of my boobs Saturday night - I thought maybe I had a plugged duct again, but this time it was super painful.  Symptoms continued through Sunday and were only slightly better this morning because I took ibuprofen yesterday to help manage the pain and the flu-like symptoms.  Turns out I have mastitis.  If you've never had the "opportunity" to experience this little gem, let me fill you in on what it's like: it hurts like h^^^.  I can't touch it, I have to watch how I sleep (thank goodness I'm still sleeping on my sides only - guess some pregnancy habits are hard to break!), and going down the stairs can be interesting.  I'm on an antibiotic to help clear it up.  Apparently it's a bacterial thing, and antibiotics are the only way to get rid of it.  I have to keep pumping regularly, and warm compresses are supposed to help keep things flowing like they should.  The lactation consultant in the NICU told me to keep storing the milk, because it's perfectly safe to give to Judith - it's only the tissue around everything that's infected.  Great news for my daughter, not so great news for me.  I brought this on myself too.  No more super long stretch in the evening!  Needless to say, I've learned my lesson and now I feel like I'm becoming a pumping nazi.  Oh well.  It could be worse: I could have an abscess in there.  I sure hope this clears up fast though.

In other news, John experienced his first diaper blowout this afternoon, and it's partially my fault.  When we got to the hospital, I found out that Judith had taken all of her feeds for almost 24 hours again (we just had to get through the 3:00 for the 24 hour mark), and that she would be moved to an open crib at 9:00 tonight.  Her nurse had just started her care, but I was able to change her diaper and John was able to feed her.  Well, I guess I didn't get the diaper on as snugly as I thought, and there was a gap at the legs.  I went to the mother's room to take care of things while John fed her, and when I got back a little more than 20 minutes later, John had her in the incubator and had a very frustrated smile on his face.  I was confused, and he informed me that Judith had a huge blowout while feeding (he heard and smelled the event - haha!).  He was having a hard time getting her to eat, and there were 10mL left in the bottle at the moment.  We had to change her outfit, blanket, and pulse ox probe.  The little stinker even had the guts to lay in her incubator and smile about the whole thing!  I thought that was very cute, but John was clearly frustrated, especially after everything was getting messed up.  All I have to say is Judith listens to me well most of the time.  We have an arrangement: she saves the poopie diapers for John and gives me the wet ones.  After she was changed, she polished off the remainder of her bottle.

I'm guessing the feeding tube will stay in for at least another day.  I think that's better anyway, because I'd rather see her take on 1 challenge at a time and master it so we don't end up in the same boat we did last Thursday.  They're holding off on her bath too, for this exact reason.  I would imagine that they'll give her a bath at some point, but probably not until she's proven to her nurses that she can be in the open crib more than 24 hours without dropping her body temperature.  It's a small step, but a step nonetheless.

Another Week Begins

Happy Monday everyone!

Today marks 6 weeks and 3 days in the NICU.  We're still close to discharge, but I don't allow myself to get as excited as I was last week.  Judith has to master the whole body temperature and feeding thing before we can even consider it.  She's getting there - it's going to take more time, and I just don't see her coming home before the end of the week.

We're still within the original time frame the neonatologist gave us (6-8 weeks) when we had our consultation before Judith was born.  He even said this weekend that we're moving to get her ready to go home, but didn't give a time frame.  So I'm preparing myself for another tiring week of travel, and on top of that the possibility of really crappy weather tomorrow.  It very well might be the first day in 6.5 weeks that I won't make it to the hospital to see my baby.  I've already put in a special request to the storm system that it changes itself to plain rain quickly so I can get up there!

Judith got her weekly measurements last night, so here are her current stats:
Length: 41 cm
Head Circumference: 31 cm
Weight: 4 lbs 5.8 oz
Isolette Temperature: 27 C (room temperature!!!)

Yes, you read that right - her isolette temp is back to room temperature!  Her body temp was normal last night, but it was starting to creep up toward the 99 degree range, so her nurse decided to knock the temp down to the 27 degree mark.  They didn't put Judith back in one of the giraffe isolettes - they put her in a spare one that they use on the intermediate side for babies like her, that were weaned in the giraffe and went into an open crib but had problems maintaining their body temperature.  They could pop the top on the giraffe.  They can't do that with this isolette.  So she'll have to stay in the closed isolette for 24 hours and then will be allowed to go into an open crib.  She should go into that crib around 9:00 tonight.  I had set a goal for this week that she would go back into an open crib, and it looks like she'll get to do that sooner rather than later.  Hopefully she can maintain her body temps this time and won't have to go back into the isolette.

She's doing well with her feeds, but still tires out after taking a bunch of them.  She did really well at her 9:00 care last night - she took 40mL for me in about 15 minutes.  What a little pig!  That was the second feed in a row that she took 40mL.  Right now, they're feeding her by gavage if she's not taking all of the bottle.  I'd rather get her into the open crib first and have success there, then work on the feeds.  Mastering the feeds is my goal for the latter half of this week into next week.  She should be able to get the hang of this soon - she'll be 36 weeks on Wednesday.

I think the dogs will be excited to have her home.  They're getting curious about the bassinet.  Both of them (not necessarily together) will get up on the bed, look into the bassinet, and sniff. I have a feeling I know where they're going to be sleeping once she's home!

Saturday, January 15, 2011

Waiting...again...

We're in a holding pattern.  It's like a delay on Amtrak's rail lines.  And we have absolutely no clue how long we'll be in this pattern.  But we're getting close to coming home again.

Judith remains in the incubator, but we're almost at the 27 degree mark again.  She took all of her feeds from the bottle in the last 24 hours as of 3:00 this afternoon, but they want to leave the feeding tube in, just in case they need to use it (and so they don't have to put her through inserting it again).  She's still doing well - she just needs to learn that she needs to maintain her body temperature and take all of her feeds from the bottle without burning too many calories and tiring herself out.  And she just needs a little more time to do it.

I'm so glad that she had a nurse overnight and one all day today that we really like, and Judith seems to like and responds well to.  Her day nurse today was one that had her when she was first born, so she knows the progress Judith has made and pretty much knows how much Judith can handle.  I was definitely much less frustrated today when I found out who her nurse was overnight and all day today, and she'll have the same nurses tonight and tomorrow as well.

We were able to work on a little bit of organization around the house this afternoon.  I finally have a place to put blankets, bibs, diapers, and diapering supplies!  I feel much better knowing that I could put all of these things away and have them handy for when she comes home.

Thursday, January 13, 2011

Well, forget that.

We just got delayed like NASA delays a shuttle launch.  No baby home this weekend.  Now we're looking at sometime midweek next week...

Apparently Judith got cold after her bath last night.  Her temp was just slightly below 97.5, and she started to slow down on her feedings because she was using too many calories to maintain her body temp and had no energy left to eat.  So they stuck her back in an isolette and jacked the temperature up to 29 degrees celsius.  I'm not too pleased that they cranked the temperature up that high - naturally, it didn't take long for Judith's body temperature to go above 99.  Duh - I know my daughter, and she gets too hot when the temperatures are that high.  I have a feeling I know who the nurse practitioner was last night, and if it's the one I'm thinking of she's really on my s*** list now (previously this NP diagnosed my daughter with NEC before doing an abdominal x-ray and was telling me all about the condition, as were 2 of the nurses that I had never seen before and honestly haven't seen since).  I am beyond pissed at the entire situation because NO ONE bothered to call me last night to tell us this was happening.  John was making arrangements to take off of work so we could bring her home tomorrow, we made arrangements for my parents to dog sit (Dad was already here to pick them up when Judith's day nurse returned my call), and were planning to do night watch tonight.  Well that's not happening now because she's back in the isolette.

At least I was able to talk to the doctor, who was very apologetic that no one called last night.  I certainly don't blame him - it's not his fault, and he wasn't even there to see what was going on (the nurse practitioners are mostly on call overnight).

Oh, and did I mention that they put the feeding tube back in?  Yeah.  Yet another setback that'll keep us there at least 4 more days before we can talk about discharge.  I can almost guarantee that Judith will self-wean her isolette temp again (just like she did the last time), and since she already took all of her feeds for a 24 hour time period, she'll pick up on that again real fast.  I really hope that they keep her on the cue-based feeds for all feeds and only gavage her when absolutely necessary - like if she's absolutely wiped out and refuses to feed.

Am I in a foul mood?  Heck yeah.  Am I being unreasonable?  Maybe a tiny bit, but I honestly don't care.  I get it that Judith can't come home if she's not going to maintain her body temp and eat like she should.  I get it that if she can't do it at home she'll end up right back in the NICU again.  I could've been saved a lot of aggravation if the nurse practitioner and the night shift nurses would have simply called me to let me know what was up.  I think it would've saved the doctor some aggravation as well, because now he'll have to deal with them not calling me.

Do I hate being a pain about it?  Yeah, I do.  Did I have to call and talk to the doctor as my daughter's advocate.  Yes.  And I'm glad I called this morning, because I probably would've blown a gasket had we arrived tonight expecting to do night watch with Judith in a regular newborn bassinet, only to find her in a closed isolette with the temperature cranked up.

That's it.  Vent over.

T-Minus

The feeding tube is out!  Let the countdown begin!

Oh, and my nesting instinct has kicked in full-force today.  Hope I can get everything done.....

Tuesday, January 11, 2011

Open Sesame!

Despite the impending winter weather (go away snow - you're not welcome right now!), today was a great day!

Judith's isolette top was popped last night, and she has been in an "open crib" since.  I use the term open crib loosely, because she's still in the giraffe, but with the top raised - she can remain in her original bed as long as they don't need the isolette for another baby.  And it looks like she'll be able to remain in it for a bit because they have at least 4 isolettes ready to go, but it's really not a big deal if they move her to one of the cribs they use in the newborn nursery.  She's maintaining her body temperature well, a good sign!

They also gave the order to allow her to nipple (bottle feed) for all of her feeds if she shows signs of interest (alertness, rooting, etc.).  So far, she has taken all of her feeds by bottle!  She took 35mL for me at 9 this morning, and 30mL for me at noon.  Her minimum to take is 30mL.

Along with hitting the milestone of being in an open crib and maintaining body heat at room temperature, Judith doubled her birth weight last night!  She is up to 4 lbs (1820 g)!  I just can't believe how big she's getting!  5.5 weeks ago, I was staring into the isolette of a tiny, feisty little baby who was taken out of her warm nest way too soon (but just in time, depending on the perspective you take, because of the IUGR and my severe preeclampsia).  She was on CPAP with room air, had to be on humidity because her sodium levels were sky high (a side effect of the magnesium sulfate I was given), and was under a bililight for jaundice.  We couldn't hold her.  And now, when I go into the NICU, I'm greeted by a still tiny baby, but one who has body fat, will occasionally smile, is dressed, and can be held when we want to hold her.  What a difference a month makes!

Judith still has the NG tube (feeding tube in her nose); however, if she continues to kick butt with the bottle feeds like she's doing, that will be removed in 24 hours - that puts us at sometime overnight or early tomorrow morning.  You know what that means?  We're looking at discharge being but a few days away!!!  We're getting closer every day and every shift change!  There are a few more steps that we have to go through, like the removal of the feeding tube and the car seat test.  Her nurse today said that this week will more than likely be her last in the hospital.  I really hope so - you all know how badly John & I want her home!

Monday, January 10, 2011

Waiting

Today's title sums up our life currently: waiting.  If I were still pregnant, we'd be waiting for Judith to be born.  But I'm no longer pregnant, Judith has been born, and we're still waiting - waiting for her to come home.

It's exhausting, nerve-wracking, and exciting all at the same time.

Let's face it.  John & I have been very lucky where our daughter is concerned - Judith has done very well since her first moments in this world.  Yeah, there were a couple scares early on, but she overcame them like a champion.  Her feistiness is helping.  I realize that we could be looking at a completely different scenario.  Judith could have encountered many more complications common to babies born at 29 weeks, she could have needed a ventilator to breathe in the beginning, she could have needed oxygen, etc. etc. etc.  But I thank God every day that we've been able to go down the path that we're on.

Judith's daily update by the numbers:
Actual Age: 1 month, 1 week old
Gestational/Adjusted Age: 34 weeks, 5 days old
Weight: 1750 g (3 lbs 14 oz)
Length: 41 cm (16 in)
Isolette Temperature (as of 9 PM 1/9/11): 27.5 degrees celsius (81.5 degrees fahrenheit)
Feed Amounts: 34 mL (1.15 oz)
Feeding Frequency: 8x daily; 4 by bottle, 4 by gavage
Apneas/Bradys in the last week: 0

I've become slightly obsessed by numbers, an amazing feat for someone who really doesn't like math.

I know I say this regularly (probably daily): I'm ready for my baby to come home.  But I want her to be healthy and safe when she does come home.

We are slowly but surely getting the house ready.  The crib still isn't up (it's sitting in the box against the wall, where it's rested for the last couple months), but it's not a priority right now since she won't be in her actual crib for a while anyway.  We got the bassinet, put it up, and have it in position in our bedroom.  It's a bit strange seeing it there, and I was trying to figure out what it was in the middle of the night when I had to get up to pump - I probably would have helped myself if I had just put my glasses on and would have saved a minute of standing there staring at it trying to figure out what was in my way.  Anyway, the nursery still looks like an organizational nightmare, and probably will look that way until I can go out and get some storage baskets to put things in.  Mom looked at it a couple times, and she said it doesn't look nearly as bad as I had led her to believe.  I guess I'm still nesting and I just want everything to be organized and ready since we know she'll be coming home very soon.

The dogs are actually adjusting well right now to the new things coming in the house.  The dresser was the biggest issue.  I'm not sure why they got upset over that - they were curious about the car seat, and curious about the bassinet.  Buster was a bit sad last night because he can't jump up onto the bed from his regular path anymore (he gets up at the foot, and that's where the bassinet is now).  It didn't help him that Lady kept stealing his rawhide bone every time he'd stop chewing.  He almost got it back from her too - what a brave Boo! - but then he chickened out when she pulled the darn thing closer.  Oh well.  I know he's going to be more upset mid-week if we get all of the snow that's predicted.

Saturday, January 8, 2011

Tally Up Another Good Day

Judith had another good day today.  She finished 2 complete bottles today - previously, she would get her usual 3 bottles a day, but normally would only finish 1.  Judith finished 1 for one of her favorite nurses at 9 this morning, and she finished another for me at 3 (yay - it's about time, little one!).  I'm excited, because she's proving that she's getting the hang of the whole suck/swallow/breathe thing, and she's showing us that she can complete feeds from the bottle and not have part of a feed given by gavage.  I have a feeling that it may be a slow process building up to taking all of her feeds by bottle, but I also have a good feeling that something's just going to click with her (all of the nurses say this will happen, but when it does is different for each baby) within the next week or 2.

Her isolette temperature is down below 28 degrees celsius (as of 3:00, it was 27.8).  They have to lower it because her body temperature keeps going up.  The doctor on-call this week and the nurse practitioners didn't really want to give the order to start weaning her because she's still small, but my feisty girl has other plans for them - she's telling them that, because her body temp is going up, she needs the air temp in her isolette to be lower AND she's also showing them that she can handle the change!  Go, Judith, go!  My goal for her this coming week (at least for the first half, because I really think it's possible for her to do) is to see her in an open crib by mid-week.  To get to that point, she needs to be in her closed isolette for 12 hours with an air temperature of 27 degrees.  After that, the doctors will have to give the order for the nurses to pop her top, and then I believe she has to be in the isolette for at least another 12 hours.  After that, they'll move her to a regular crib like a term baby would use in a newborn nursery.

Once we hit that goal, our next one is to get her to take all of her feeds by bottle.  Once she's doing that for 12-24 hours, they'll remove the feeding tube from her nose, and within 48 hours (after the car seat test and if she doesn't have any A/B episodes) she could be home with us.  Neither John or I can wait!

Oh, and I have to mention that they stopped more of her meds - she is no longer on Reglan for the digestion/reflux issues, and her residuals are still minimal.  She's not spitting up, but I'm wondering if she's having some minor reflux because she really doesn't want to burp sometimes.  She tends to hold her breath a bit and tries to suppress the feeling.  She lets it out eventually, but I have a heck of a time trying to burp her.  We'll see if they have to send her home on any reflux meds, or if her pediatrician will prescribe some for her eventually (I'm hoping for no reflux, therefore no need for meds).  She's also off of the caffeine!  Judith hasn't had any apneas or bradys for almost a complete week.  Tomorrow will be the 1 week mark, and she looks like she'll be able to make it - she didn't have any today!

On the home front, the dogs are a bit upset with things today.  Well, at least Buster is.  Mom & Dad brought my former dresser up today, and Buster watched it come into the house with a very sad look on his face.  He knows that the presence of this "new" piece of furniture means a change, and he just doesn't like change.  He makes a wonderful Lutheran dog (ha ha)!  He was fine once we got it in place in the nursery.  I just don't understand how to help him with all of this change - I remind him every day that we love him, and that he's not going to be given away just because his little sister will be coming home soon.  Maybe it'll be easier once she's actually home and he can see that things will change a bit, but he'll still get plenty of attention.

I am mesmerized by the amount of laundry I'm doing already, and the baby's not even home yet!  I have another full basket of clothes, blankets, and a few extra sheets that I have to wash along with the bibs and outfits she's dirtying in the hospital.  I did 3 loads this week alone, and next week's not looking any better.  *sigh*  It doesn't look like it'll ever let up...

Honestly, I'm just plain exhausted anymore.  Half of the time I don't know what day it is, everything seems to run together, and I feel like every day is a frantic race to try to get the house ready for Judith to come home and to get the daily work completed so we can go to the NICU to see her and feed her.  I realize that the exhaustion won't magically go away once she's home, and I understand that sleep will be a lost reality.  But at least we won't have to worry about a 45 minute car ride every day and we won't have to worry about all of the emotional stress of how she's doing etc.  I'm ready for that next step, and at the same time I'm worried about how things will go when she's home and we don't have the monitors to rely on 24/7.

For now, I should just focus on our next goal (the getting into the open crib thing) and keep reminding myself that we need to take baby steps.

Friday, January 7, 2011

Judith and ROP?

Before panicking after reading the title, I offer a caution: no, Judith does not have ROP.  In fact, the opposite is true.  My little sweet pea had her follow-up ROP eye exam this morning, and she has made progress!  Last Friday, they performed the first exam and found that she had Stage 1 ROP in Zone 3 (meaning: the vessels in her eye, specifically the retinal area, didn't have a chance to grow into their proper place; most of the vessels were present, but short and underdeveloped, and they were through almost all of the eye except for the outermost perimeter).  Today the results were great - there was barely a visible line in her eye that didn't have vessels in it, an improvement from last week!  So now her eyes are just immature, and the vessels need a couple more weeks to finish their growth.  They'll do another follow-up in 2 weeks, either in the hospital if she hasn't been discharged or as an outpatient if she has been discharged.

And speaking of, I'm daring to get my hopes up that my baby will be home with us in another couple weeks.  She's doing so well, and is doing everything they would expect a preemie to do. We're still having a few issues with bottle feeding - she doesn't always take the entire bottle, and still has a few small problems with the suck/swallow/breathe reflex - but that will come with time.  I have a feeling that, within the next week, something will just click in her brain and things will really start to come together.  Her temperature control's getting much better though!  Since she's up to 1670 g (or 3 lbs. 11 oz.), she's very close to the point where they will start to wean her down to room temperature more quickly.  Her isolette temp was 29.0 degrees celsius last night, but her nurse was going to lower it again if her temperatures were still stable at noon today (not sure if that happened yet, but I will find out later!).  The nurses and my favorite nurse practitioner said that, once the temperature weaning begins, they can have her down to room temp quickly.  That means we can then graduate to an open crib!  We might be in the open crib for a while, but that's ok - it'll be a lot easier to change her, bathe her, and pick her up to hold her.  And we won't have to try to do so many things through the portholes anymore (if you've never had to do this, let me tell you how much of a pain it can be, especially with a squirming 34 week adjusted baby)!

In other news, I went out and got our car seat the other day.  I took it out of the box, and the dogs promptly sniffed it an proceeded to deposit hairs all over the dang thing.  I started reading the user manual today, and had a 45 minute adventure of adjusting the straps to the approximate places.  Everything has to be in the smallest holes (that's pretty much a given), and the only thing I have to wait to adjust is the tightness/length of the harness straps.  Lady seems to think that she needs a car seat of her own now - she kept looking at it like she wanted to go for a ride.

I think they're starting to figure out who Judith really is.  I often let them sniff her outfits that I bring home to wash, and they're showing a bit more interest in them than before - I brought home the blankets we used for Kangaroo care, and even let them sniff her first hats from when she was born (Lady assumed that Judith's hat was a toy for her and batted at it).  I know they could sense that I wasn't pregnant anymore, but I really believe that they were confused as to why we didn't bring the baby home.

I know they'll be fine with Judith, and I don't have very many concerns.  The 2 that I do have: 1. they'll want to jump up like they always do, and I'm afraid they'll scratch her by accident; and 2. they'll want to lick/kiss her.  On the face.  Especially Lady, because she likes to give kisses the most.  And Lady is "self-cleaning" (gross factor, skip to next sentence if you are squeamish: Lady likes to eat poop).  The kissing thing is going to be interesting for the first few days.

Beginnings

Welcome to my new blog site!

The reason I started blogging in the first place was to have a place where family and friends could go to for updates on my premature daughter, Judith.

As before, I will continue to post updates on her progress in the NICU, and will also post updates once she comes home.  You will also be able to read about our 2 crazy Boston Terriers (and their reactions to the baby), and what life is like raising a preemie born before 32 weeks gestation.

Happy reading!