Our Story
Week 7:  08/31/04 - 09/06/04
 

Day 43 -- 08/31/04

5:00 AM:  Talked with Joshua's nurse Leanna, and she said that he's done well -- slept well last night.  His feeds have gone well...no spit-ups.  No spells, and no problems with his oxygen...he's been satting around 90-91% with his oxygen levels in the 40-45% range.  He's been peeing and pooping well (with every feed), and he's been doing well with his respiratory treatments (they suctioned him out once last night and he did well with that).  He weighed 4 pounds, 4.6 ounces.

3:00 PM:  Visited with Josh -- he's doing well.  I asked his nurse about getting him moved to a wall station rather than being on the center aisle, and she moved us immediately...he's now on a wall unit down in the corner...it's nice and private -- just what I wanted!  Now I'll feel much more comfortable trying the non-nutritive nursing (and eventually regular nursing) with him.  His feeds are going well.  I signed us up for an infant CPR class and a "bath" class where we'll get to "learn how" to give him a bath.  Joshua's nurse, Harriet, said that speech therapy had been by to evaluate him and gave him his first bottle (she thinks).  I'm calling to check tomorrow to see what the deal is with bottle feeding -- I wanted to be there for his first bottle, but it's looking like I missed it, but at least I can arrange to be there when they try it next.  I'm a little irritated that I wasn't involved (or at least told about it), but hopefully it was just that the speech therapist had to offer it to him to evaluate his readiness and he'll officially start bottle feeding at a later date...?

8:00 PM:  Good visit -- did non-nutritive nursing, and Josh did pretty well.  He was very alert and wide-eyed...couldn't seem to "concentrate" on the nursing -- he'd suck a minute, then roll his head around, look around, push off with his hands (ouch!), etc.  After I held him for awhile, Chris held him.  They cuddled up, and Josh started falling asleep.  I talked with the nurse, and she she checked his chart -- they gave him his first bottle today (without me... :-(...).  He took 14 ml, then got the rest through his NG tube.  Apparently, speech therapy comes down during bankers hours and tries to match up with his feeding/care times -- so if I wanted to be there, it would have to be 8:30, 11:30, or 2:30, none of which I can do.  I'm very disappointed because it's a big step that I feel like I'm missing out on...I guess I'll have to deal with it, though.

Day 44 -- 09/01/04

What a rough day!!  Josh did well, but I feel like I ran into a wall. 

I called to check on Josh first thing -- all his numbers are good...no real changes in anything.  He hasn't had any spells, and his nurse was able to wean him on his oxygen a little more.  He hasn't had any spit-ups, and he weighed 4 pounds, 4.6 ounces, and was resting well.  When I was getting ready to get off the phone with Nikki, his nurse, she asked (as an "oh, by the way" afterthought) if I was going to be bringing in fresh milk for him.  I told her I wasn't, that they'd have to use the frozen.  She told me that they were out.  Since we had just brought in 12 4-packs less than 2 days ago, I didn't understand how they could possibly be out...when I told her this, she said that they had thawed it out and it went bad, so they had to throw it away.  Seeing as how that was almost 2 weeks worth of milk, I got upset (she knew that I was in tears).  I told her that I didn't understand how that could have happened, because I had just brought in so much frozen milk.  I also explained to her that having to flush 2 weeks worth of milk down the drain when I'm not producing all that much anyway is really a big blow, and is really not cool!  She apologized, saying that she was really sorry it had happened.  I made sure that I told her exactly where I had put the milk, and how much should have been there, and she said again that it had all been thawed out and was now bad.  Needless to say, I was furious on top of being upset.  I just have a hard time seeing how they could make a mistake of that magnitude -- how could they possibly thaw out 50+ ounces of milk and not realize that it would go bad before they could use it?!?  It only stays good for 24 hours after being thawed, and he only gets a little over 8 ounces a day...anyone who can do basic math can figure out that there is no need to thaw out that much milk!  Then, on top of that, I got even more upset because when I told her that I'd make a special trip in to bring milk for him, she said that it wasn't a big deal because they'd just give him formula.  NOT AN OPTION!!!  That's the last thing his little belly needs is a change in food...he's already on medicine for reflux, don't they think that changing up his food could mess his little belly up even worse?!?  The more I thought about it, the more upset I got.  I knew that I wouldn't be able to get myself pulled together to make it to work, and that I wouldn't be able to concentrate even if I did, so I called in to work so I could go over to the hospital and speak with someone in charge.  This was really just my last straw...I was feeling kind of out of the loop and like there have been some discrepancies in his care over the last several days, so I needed to clear everything up.

When I got to the hospital, I went to put the bottles of milk I'd brought into the freezer, and it was full of milk.  I asked the new nurse who had come on what the deal was with the milk, and she said that Nikki had looked in the wrong freezer for his milk.  She said they'd tried to call me, but didn't get an answer.  I talked to Nikki at 6:15, and was so upset about the situation that I was crying when I got off the phone with her (which she knew).  I left the house at 7:30, and had not received a phone call.  They have my home, cell, Chris's cell, and my work phone numbers...there was no reason they couldn't have gotten in touch with me (and if they did try to call, and it was that late, why did they wait that long when they knew that I was so upset?).  The new nurse acted like the whole thing was no big deal...I let her know that it was a big deal -- that switching him over to formula was not acceptable, and that I really didn't feel comfortable with his care if his nurse didn't even know where the freezer was (the new nurse told me that Nikki didn't know that this freezer was there...seeing as how it is a side-by-side fridge/freezer combo, and she had to get the thawed milk out of the fridge section of it, I can't imagine how she missed the freezer).  I also have a problem with the fact that she didn't even think that something might be up (like, maybe we weren't talking about the same milk) when I asked how they could trash 2 weeks worth of milk and she had only thrown out several ounces, at most...shouldn't the powers of deductive reasoning kick in and make her realize that maybe she'd missed some milk somewhere?!?  I requested that I get to talk with a supervisor, and the new nurse said that she'd let me speak with the director (I asked to wait until Chris got there).  In the meantime, I sat with Joshua Ryan and just watched his beautiful little face (I couldn't hold him because he'd just eaten and moving him around could mess up his belly).

I talked with the director of the NICU around 11:30.  Everyone seems to be caught up on the "the milk was found, so no harm, no foul" kick.  While I'm very glad the milk was found, I wanted to emphasize that it wasn't only the milk, it was a lot of little things that finally came to a head.  First of all, it bothered me that the nurse didn't possess the deductive reasoning skills to realize that when I got upset because 2 weeks worth of milk were supposedly flushed, I was referring to a lot of milk (I said 12 4-packs quite a few times, and each 4-pack can hold up to 8 ounces), and if she just threw out a couple of ounces, then maybe we weren't on the same page.  I also wanted them to realize that yes, I know she just made a mistake, but in my eyes, it was a BIG one -- 2 weeks worth of milk (which means 2 weeks worth of pumping, 2 weeks worth of getting up every 2-3 hours around the clock, 2 weeks worth of stressing because I wasn't making that much) is not a trivial thing!  Also, we have just felt out of the loop lately, and it just seems that the right hand doesn't know what the left hand is doing (in this case, literally...the right hand opens the fridge, but doesn't realize that there's a freezer that could be opened with the left?!?).  I just seems like when Josh was moved downstairs, wires got crossed, and communication broke down.  No one seemed to have a straight answer about his feeds (bolus vs. pump?  1 hour on pump or 30 minutes?).  When we asked if he could be moved to a station along the wall, one nurse told us it wasn't possible, the other did it immediately...it was just very frustrating.  Communication about his first bottle feeding was also lacking -- to me, it's a big deal, but it didn't seem like anyone realizes or acknowledges that maybe his Mama would like to be there for it (I'm missing out on so much with him in the hospital, that when there is the opportunity that they could tell me about something and I could be there for it, I feel like I should be told!).

We finally came to an "understanding" and I tried to express to them that I'm not trying to cause problems, but that I simply want to be kept informed, not only of the "whats" but of the "whys" as well.  The warm, fuzzy "he's doing fine" doesn't cut it with me...I need details, consistency, numbers, and reasons for things.

They brought in his doctor to talk with me about Josh's medical care, and she went over the changes that they'd made over the last several days.  They're going to 30 minute feeds on the pump...she wants to up is calories and decrease his volume if possible (this should help with his reflux).  She also wants to come down on the pressure on his nasal cannulas -- from 0.9 to 0.5 or 0.25.  She is also writing orders to allow him to get 1 bottle per day (which we can help with).

Speech therapy came by to try Josh on the bottle again.  He did OK -- not as well as yesterday (he took 14 ml then) -- today he only took 5 ml, and he tried to have 2 spells after getting a little choked.  We decided to hold off on letting us or his nurses bottle feed him, and she's going to come back tomorrow and try again with him.  After she sees how he does then, she'll make a recommendation about whether we can start with the 1 bottle per day, or if we should give him a couple of days and let them try him again next week after a little rest (it may be a little too soon for him).  I finally left after his bottle "feed" -- it was time to let him get some rest and for me to get some rest, too.

8:00 PM:  We went back to visit with Josh.  Paige was his nurse tonight.  I saw Nikki on my way in, and she apologized for "overlooking" the milk -- I told her that it was a big overlook, but that I appreciated her apology.  Paige updated me on basically the same information that the doctor gave me.  We tried to do non-nutritive nursing, but Josh didn't have much interest, so we just cuddled instead.  Chris held him for awhile, too.  They had come down 0.1 L/minute on his oxygen every hour since this afternoon -- he's now at 0.25 L/min.  His oxygen is still high (in the 70s), but Paige is going to try to wean him down some overnight.

Day 45 -- 09/02/04

5:00 AM:  Talked to Paige, and Josh is "doing great."  He had a good night...she got him down to around 50% on his oxygen with around 95-100% on his saturation, sot hat's good.  He hasn't had any spells, and his feeds are going well -- no regurgitation, and no residuals.  He was 4 pounds, 5.2 ounces (gained a little).  She gave him a "quickie" bath -- said that he squealed a little at first, but that he seemed to like having his hair washed...said he should smell good for us today! :-)

1:00 PM:  Talked to Chris -- he'd just visited.  Joshua is satting pretty well with his oxygen in the 60s.  They tried to turn him down a little, and he tried to spell, so they left things pretty much where they were.  Speech therapy tried him again with a PO feeding (PO = by mouth).  He didn't do great, so they're going to give him a couple of days and then try again at the beginning of next week to see how he does.

8:00 PM:  Another bad night (again, for Mama, not Josh).  Got there to visit with Josh, and he'd been moved to the other nursery, back to a middle bay where if I try non-nutritive nursing, I'm exposed for all to see.  His nurse was very nice -- said that I looked stressed, at which point I lost it again.  I feel like he was moved because of issues with Nikki from the other night -- his nurse assured me that it was because a baby had left that nursery and they shift babies around all the time to spread out staffing.  I told her that I had talked to 4 different people (including the NICU director) on 3 different occasions requesting that he be kept against a wall, and just feel like the communication hasn't been there, because of all the babies in the nursery that could have been moved, why was it him?  I went in to pump so I could give Josh some fresh milk, and she moved him back to the slot he had come from (she was really super-nice).  His new nurse, Amanda, apologized when I got back from pumping -- I told her that it wasn't her fault or the nurse from the other side's fault -- it was just that she got to see the end result reaction.  She said that she'd put a note up saying that we would like him kept along the wall.  My big gripe is why it wasn't done any of the other 3 times we requested it -- it just seems like people don't take you seriously there unless you raise holy hell or end up crying or in the director's office.  I shouldn't have to request something 3 times (or more) to see a result!

Anyway, we tried non-nutritive nursing...he sucked a few times, but seemed tired, so I just cuddled him up and held him -- he slept almost the entire rest of the time.  Put him back to bed on his belly -- he looked so cute and comfy...he was satting 100% (with oxygen in the 50s) when we left.

Day 46 -- 09/03/04

5:00 AM:  Josh is doing well -- he slept well and was very settled.  His oxygen was in the 50% range most of the night...Amanda said she could get him down in the low 30s when he was on his belly, but when she turned him over and/or worked with him, she had to turn him up some.  He didn't have any spells, and his vitals were great.  His feedings and exercises have gone well.  He weighed 4 pounds, 7 ounces.

PM:  Chris and I both visited the little man (at separate times).  No real news...the nurses were busy when we were both there.  He's doing well, with his oxygen in the 50s and going down.  I tried non-nutritive nursing, but once again, there wasn't much interest, so we just cuddled.  He was very alert and looking around at everything.  The nurses were turning down his oxygen as I was leaving.

Day 47 -- 09/04/04

5:00 AM:  No changes in Josh's situation.  His oxygen was in the 40s, with no spells.  He'd had a few desats, but most of them were small and he came right back up.  His vitals look great, and he's up to 36 ml of food with no residuals, and no spit-ups.  His nurse, Amanda, commented that he's "so good!" and that he's just as content and laid back as can be.  She said that his exercises are going well, and he weighed 4 pounds, 7.8 ounces.

11:00 AM - 2:00 PM:  Big day!  We had CPR class at 11:00.  Scary, but I'm glad I know what to do...don't know that I could stay calm enough to do it, but at least I know!  Then we had "bath class" at 1:00.  Josh was so content in his bath!  He really seemed comfortable -- he liked having his hair washed, and didn't seem to mind any of it, really.  Dried him off and rubbed lotion on his back and feet...his little bottom is so smooth and soft (makes you realize where the phrase "smooth as a baby's bottom" comes from).  He LOVED having his feet rubbed...he just settled right in and relaxed as I rubbed his little feet!  It was a really good visit!

PM:  Don and Barbara (Chris's parents) visited.  Barbara got to hold him for awhile while he "ate" -- good cuddle times!  I came back around 11:00 PM and held him for a few minutes.  His oxygen was at 29% and sats were good.  I changed his diaper and took his temperature, then got him undressed so he could be weighed -- 4 pounds, 9.4 ounces!  Got him dressed again and snuggled in on his belly.  They turned his oxygen up a little while we worked with him, but he was satting 100% and they were turning him back down as I left.

Day 48 -- 09/05/04

5:00 AM:  Josh is doing fine (his nurse is feeding another baby, so I'll call back later to check on him).

8:00 AM:  Called to check on Joshua, and he's had one spell (around 2 AM).  He's back to around 30% on his oxygen...he's a little cool (97.5), so the nurse put his hat back on and added another blanket to his bed.  She said his hematocrit came back at 29 (a little low), and that the doctor might want to do a transfusion, but that she hadn't been around on rounds yet for the nurse to know.  His feedings have gone well -- he's up to 38 ml without any ill effects.

3:00 PM:  Talked with Dr. Cothren about Joshua.  Got lots of questions answered.  He apparently has a small spot (pimple-like) on his scrotum, but the doctor looked at it and said that it's nothing to worry about.  They're giving him a transfusion (IV in his head...looks awful, but I know it's easier for them to find a vein and less painful for him).  She said it's a "transfusion and a half" and that, if necessary, they'll give him the other half tomorrow.  Because his hematocrit was 29 (indicating that he is anemic), they decided to do the transfusion.  Josh has had lots of desats lately, and anemia could be a contributing factor, so they're trying to eliminate that with the transfusion.  Dr. Cothren said that around 2 months of age, babies begin to better produce their own red blood cells, so hopefully this will be the last time that he needs to get blood.  I asked her about his increased volume in his feeds (since the other doctor said several days ago that she wanted to decrease his volume).  She said that the bottom line is that they want his calories going up so that he continues to put on weight.  At this point, it's easier to go up on his volume (it's apparently difficult, but not impossible, to supplement the breast milk up above 24-26 calories per ounce), particularly since he's tolerating his feeds well and doesn't seem to be retaining fluids.  His increased weight, along with the increased volume of food triggered a need to increase his doses of the Reglan and Zantac (his reflux medicines).  Basically, she said that he's been having a lot of desats lately, particularly after eating, which indicates that the reflux might be a contributing factor.  She upped his reflux meds yesterday, and addressed the anemia today (both of which could help him to get better oxygen saturation levels in his blood).  He's on track to have his respiratory medications and situation looked at tomorrow to see if adjustments in that can help as well.  They will also keep an eye on things and if if he starts retaining fluids or his chronic lung disease seems to be worsening because of  the increased volumes of milk, they have several ways of addressing it:  fluid restriction (decreased volume of breast milk) or an increase in the diuretic that he's on...she said that there's wiggle room in both categories and they'll just have to find the right combination that works for him if it becomes necessary.

PM:  We visited with Josh -- Chris did kangaroo care with him.  They both slept (Chris almost started snoring!).  Joshua was so content -- satting really well!  We put him on his back when we put him to bed...he seemed to be comfortable (satting around 98-100% when we left).

Day 49 -- 09/06/04

5:00 AM:  Talked with Josh's nurse this morning.  His oxygen level is in the 26-36% range, and he hasn't had any spells.  He's tolerating his feeds well, and has been sleeping well.  He weighs 4 pounds, 9.6 ounces.

1:00 PM:  Visited with Josh (took my friend Nicole to meet him).  He's doing well...keeps flirting with desatting, but he comes right back up.  I repositioned him, and he seemed to do a little better.  Talked with his doctor (different doctor this week, and I can't remember her name), and she said they'd made some changes.  She moved his oxygen flow back up to 0.5 L/min to give him a little more support and hopefully be able to bring down his oxygen levels.  She has also taken him off the caffeine for the time being (she said that it's a stimulant and that in order to metabolize it, he's burning extra calories that he could be using to grow and develop).  She thinks that he's old enough that he probably can do without it (but they'll keep an eye on him, and if he needs it, they'll put him back on it).  She really wants to see him sucking this week without desatting, whether it's on a pacifier, a finger, or a bottle.  She thinks that by supplementing him a little more on the oxygen pressure, he may be better able to deal with sucking (the chronic lung disease is long-term, and it's not like bringing down his pressure is going to speed along his recovery from it, so she'd rather give him a little more support now to hopefully help him be better able to progress in other areas).  Everything she said makes good sense to me (I think I like this doctor because she seems to have the "moderation in all things" attitude that I relate so well to, and she seems to want to balance "pushing" Josh to improve with leaving him alone so he can grow and develop).  She said that they're making little changes here and there, based on what he did well with and what he didn't do well with in the last week or so.  She made the comment that this is where the "art" of medicine comes in to play (some people don't like the term "practice" of medicine)...I realize that it's a practice and that they have to make decisions based on what they learn from the patient and from his responses to different treatments.  She said that basically they're going to keep "tweaking" things until they find the balance that works for him.  Hopefully we'll be able to find that balance soon and he'll really start making some good progress towards eating on his own!

8:00 PM:  Josh was so snuggled in -- I hated to wake him up, but we had to get his temperature and change his diaper for care time, so I got him all taken care of and situated.  I changed his clothes, too (we weighed him before we put his new outfit on...4 pounds, 11.8 ounces...we checked twice to make sure it was right!!).  Did kangaroo care with him...once he was settled, he was satting at 100%!  He sucked on the pacifier most of the time...he was wide-eyed and alert at first, then drifted off to sleep -- he just looked so comfortable and content...good bonding time with Mama!

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