Friday, January 17, 2014

One Month

Today my Henry is a month old.  Where did that month go?  I remembered that the early weeks would be a blur and fly by, but that went SO fast!  I'm sad that my little man isn't a newborn anymore! 

My little bug, little bear, Henry Hugaboo, Henny, Hank, Hankenstein, Hank and Beans (poor kid) -- he has become much more alert and awake in the past week or so.  He is still dealing with the symptoms of his (presumed) HS.  His blood work yesterday came back with his hemoglobin at 7, which is significantly low, but the hemotologist we saw at Lurie's doesn't feel it is necessary to transfuse him at this point.  We will recheck his counts next week, and hope they have improved.  He loves to sit up and face out, watches his brother and sister intently, and man, do they adore him!  His head control is unreal, and his eye contact is fantastic.  And then there's the occasional gas smile that shows off that phenomenal dimple!!

He is a powerhouse when it comes to eating.  I've been tracking when he nurses and for how long...  some days are better than others, but for the most part, he is nursing every 1.5 to 2 hours during the day, and 2 to 3 hours (sometimes a tad longer) at night.  We have an appointment with the pediatrician in a few days to check his weight and I am a little concerned.  At our last appointment (two weeks ago now), he was up to 8lb 15oz, but when I stepped on the scale with him a day or two ago, he was only up to 9lbs.  He still looks yellow to us, but he is eating a lot, peeing, and pooping fine, so I shouldn't be too worried, but you can never know with breastfeeding what he is actually getting.

And then there's his suspected lip tie (and possible tongue tie).  I have an appointment for Henry in a week and a half with the pediatric dentist that I took Emily too to have her lip tie revised.  He is nursing much better than either of the kids did, and I have had zero nipple damage (thankfully), but he has had a lot of issues with gassiness and seems to have some silent reflux.  Both are common symptoms of lip/tongue ties.  I'm hopeful that getting the revision(s) done with help elleviate his tummy issues and also help him gain weight more quickly, but I'm also nervous to have the revision done with his hemoglobin is still low. 

Noah and Emily are doing relatively well.  Noah has moments that I want to lock him in his room - we've had lots of issues with yelling, talking back, general naughtiness.  In the early weeks, I'm sure it was because he was bored.  Now that he's back to school, I think it's gotten better, but pops up as a manifestation of exhaustion.  Emily has similar moments, but it's the terrible twos.  Not getting her way, usually.  We (briefly) converted the crib to a toddler bed, and that didn't go well.  She wouldn't stay in bed, and in fact the other night climbed in bed and fell asleep with Noah.  Made for a cute pic, but the crib was reinstated the next day for my own sanity.

I so wanted to be super stay at home mom to three kids, and do it all right off the bat.  Then reality hit me - I'm only a few weeks in, and I have plenty of time to figure this out.  For now, I'm just trying to enjoy my time home with my kids.  :)

Wednesday, January 1, 2014

Henry's first few days: Birth story part two

I keep telling myself to write about our time in the hospital with Henry since last time, it took like a year to write part two of Emily's birth story.  So here's my attempt to remember something that already seems like a distant memory..

Henry was born on a Monday.  The afternoon he was born, I snuggled the hell out of him.  I'm pretty sure Ben held him a few times, but mostly I didn't want to share.  After the initial meeting, everyone went home, and Ben and I just enjoyed a few hours alone with him.  Mom came to visit, the kids came back, and Julie & Scott.  At some point in the evening, Ben and I discussed that he was looking a little yellow, and the nurse must have agreed. 

Shortly after he was born, I asked about testing his bilirubin levels, given our past experience with Noah & Em, and the correlation between the significant early onset of jaundice and hereditary spherocytosis (HS).  We were told there was some new way of testing bili levels, and it wouldn't be done until 24 hours old.  24 hours!?  Noah was in the lights by 18 or so hours!  Of course, it probably didn't help that by the time we got to our room, the peds had already rounded, so I couldn't even consult with him or her about my concerns.  Plus, I was too damn exahusted to fight it.

But anyway, that first night nurse must have seen the coloring in him that we did, and ordered the test early, at about 13 hours, I believe.  His counts were elevated, but not significantly enough that it was concerning. 

Tuesday morning was my first frustration.  The ped who was on that day was someone we had never seen.  I was so frustrated that it wasn't our primary guy, who would literally have seen our name and known our history.  The ped seemed to kind of brush of our concerns, even as I retold our experience with how sick Noah got, how fast, and how they instilled in us in the fear of NICU time and brain damange.  She wanted to give him more time, and ordered his bili levels be retested at 4pm.

That afternoon, Ben's parents and the kids visited.  And of course, that's when the test results came in.  It was like a blur.  The neonatologist and nurses and bili lights and a friggin NICU isolette.  The neonatologist was extremely concerned with his levels (yeah, no shit - I told them I was concerned yesterday) and said he needed to be in the lights and get his bili to stop rising or he was going to the NICU.  Of course, at that, I lost it.  I just fucking gave birth and now you are taking my baby from me.  Even without having him go to the NICU, the horror of our experience with Noah came rushing back.  Noah didn't breastfeed well, nor could he, since we could only have him out of the lights for 20 minutes at a time.  We couldn't hold him, snuggle him, love on him like most people could their newborn baby. 

And the neonatologist has the audacity to ask me what I'm concerned about.  I can't even talk.  I'm so upset, I just shake my head.  He says something to the effect of  "this is what it is, we have to just treat it", and I hear him calling me an idiot.  No shit, we have to treat it.  And by the way, I feel like fucking shit because my kid, my newborn baby, my freaking miracle child that I never even dreamed could be, is sick because of ME.  Because of a blood disorder that he has inherited from ME.  So don't tell me, you cocky son-of-a-bitch that it is what it is, because I know what it is.  I live it.  I have two kids who live it.  I have one kid who was seriously ill at birth and required a blood transfusion the day he turned a month old.  Jackass.

So anyway, I lose my shit.  Hysterical ugly crying while they turn the lights on, get little yellow Henry naked, put on his little superhero mask, and load him into his new bed.  And that thing was out of control.  We could open little doors to touch him and talk to him.  It was heated so at least he wasn't cold.  (Except for the couple times he was HOT because the isolette reset to like 95 degrees...)  The neonatologist ordered the bili levels retested at 9pm, I think, and said that it was over 13, he would have to go to the NICU.

The plan was that Ben was going home each night, in an attempt to keep life as normal as possible for Noah and Emily.  This night, he went home and did dinner and bed.  I called mom, hysterical, begging her to sit at the house with the kids so Ben could come back to the hospital, which of course she did, but in the meantime, Julie sat with me at the hospital til Ben came. 

Thank god, after his test that night, his level was at 12.8 so no NICU for Henry.  I don't know what I would have done.  I'm pretty sure I would have signed myself out of mother/baby and set up shop downstairs.

So Wednesday... I'm doing my best to only keep Henry out of the lights the allotted 20 minutes at a time.  Hard to do when you're trying to establish breastfeeding with a guy who initially wasn't super interested, and then that first day (before the lights) would kinda just hang out and nibble for an hour or so at a time.  I tried to stay on an ever three hour schedule, but sometimes it was closer to 1.5 - 2 hours if he started getting fussy.  So when the nurse comes in Weds morning (must've been early cuz I'm pretty sure it was my night nurse) and tells me the neonatologist wants me to supplement after feeds, I'm upset, annoyed, and frustrated.

**Now sidebar, the perks of being a third time mom, I know what I want and when and where to stand my ground.  Been around the block a few times....**

I know that this little guy needs to excrete to get the bilirubin out of his system, and supplementation is often recommended to get babies peeing and pooping more.  But the reality is, his stomach is the size of a grape (if that) at this point, so you're telling me to breastfeed for 15ish minutes and then supplement up to 45ml?  (45ml is an ounce and a half, FYI)  Yes, my milk isn't in yet at this point, but I have told every nurse that I only stopped nursing Emily four months ago, and every nurse has commented that my milk will come that much faster.

So when nurse tells me he wants me to supplement, I get weepy, but then the frustration takes over and I say no.  It doesn't feel right, you know?  They wanted me to supplement with Emily and I think I gave her formula once, and was so mad about it, and after that gave her pumped BM to supplement.  And with Noah, hell.  We didn't know any better and it was so hard to BF in such a short amount of time that I just pumped and we gave him formula.

Thankfully, the nurse had my back, and supported my right to make the decision that was right for me.  (I think she was the just about 40 wk pregnant nurse, who I'm sure was up on her shit.)  I think it was at that point we discussed pumping and supplementing with that, and the nurse brought me a pump.

It occurred to me a little later that I still had frozen BM from March in the freezer at home.  I asked the new nurse, my day nurse, her thoughts on supplementing with frozen BM and she said she'd check with lactation.  (I later found out that nurse didn't know much about dealing with BM....  hold that thought.)  She spoke to lactation, who spoke to the new neonatologist who was on, and go the order changed to supplementing with expressed or frozen BM.  Bam bitches, that's how it's done.

(So that thought you were holding... yeah, the nurse was all "we have a special thing for defrosting breast milk".  Awesome I think, cuz that usually takes forever.  But she took the biggest bag (6.5oz), defrosted it, and then heated it, effectively making whatever I didn't use in that first feeding garbage.  I took about 1oz out to feed Henry, and then was like, hm, now what do I do with the milk, so I called LC, who told me that it was garbage if it wasn't used within an hour or so.  But I kind of read her, and let her know that I was one to err on the side of "how long is it really good for?"...  she smiled and said something that let me know I was okay to put it back on ice and use it a few more times.)

So I pumped occasionally, and I supplemented with expressed and frozen milk when Henry would take it, but you can't MAKE a kid take a bottle, especially after 15 minutes on the boobs.  He would latch well, and I could keep him going, and get him to do about 10 min on each side.  I was a little lax with the 20 min thing, again, third time in this rodeo, and while yeah, I knew he NEEDED to be in the lights, I also knew an extra few minutes here and there was okay.  He pee and poopy diapers on Wed were very concerning.  Maybe two pees and one poop in 12 hours.

They checked his levels every 12 hours or so.  Usually 4pm and 4am.  Ben charted them so we could keep a visual on when he was at.  His bilirubin level showed that he was responding well to the lights.  I much preferred the ped that was on Weds (as well as Thurs).  We didn't know her well, but she was clearly very proactive and respectful of the fact that we knew what we were talking about.

On Thursday, we got a little bit of a break.  For several hours, Henry was only on half the lights and we could have him out of the bed for up to 40min at time.  (All along, I had been requesting getting a bili blanket and being allowed to have him out for more than 20 min, in part selfishly, but primarily because it seemed counter intuitive to say he needs to eat more so he can pee and poop more, but you are limited to 20 min feedings.)  After the afternoon bili check, they turned the top light back on and reduced us to 20 min again, since his level went back up.

On Thursday night, the ped called after hours and told me that she believed he would be discharged with me the next day and was looking into helping us obtain a bili blanket for home if it was needed.  The nurses said the social worker at the hospital would take care of getting that set up if needed.

Friday morning, discharge day.  Initially we were told he was well enough to take out of the lights, but later the ped decided he needed to stay in the lights until we went home.  They wanted to do sort of a baseline bili count right before we walked out the door, and then recheck it at the ped's office the next day to see where it rebounded to without the lights.

The managing nurse visited and told me that she had 16 moms being discharged that day - we'd heard that L&D had been crazy earlier in the week, as there was a snow storm and a full moon on Tuesday (not to mention our guess that some OBs probably scheduled inductions and c-sections to be done before Christmas).  The nurse told us that she was telling everyone else to plan on leaving by noon, but we were an exception and that we could leave when the doctors gave us the okay.  As much as I appreciated the "special treatment", I was jealous of the 15 other moms who were getting the boot.

Anyways, we finally got word that they were going to draw Henry's blood around 2pm, and then we could go.  We were home that day by 3pm! 

The next day (Saturday), we went to the ped for blood work (which took wayyyy longer than necessary and they didn't even have the previous day's "baseline" on file), and that afternoon, we waited for the call to let us know his bili level and what, if anything, we needed to do next.  They never freaking called!  We have never had issues with our ped at all, so we were pretty pissed when we called them and got the answering service.  So you'd better believe I told Ben to leave a message with the answering service because this was pretty friggin important...  When the doctor (different from the one we'd seen that day) called back, she said they wanted to see him back in two days to recheck.  I don't recall what the count was, but I remember feeling like it had gone up significantly from where it had been the morning before. 

Ben took Henry back to the ped two days later (Monday), again for blood work.  He made sure to let them know we were upset and disappointed that we never got a call on Saturday, and hoped that wouldn't happen again.  When the nurse called with the count later that day, it had gone down a bit, and she said they didn't need to retest it since we were going to the hematologist in another week. 

Of course, that appointment was two days ago, and they only checked his hemoglobin and reticulocyte count, and NOT his bilirubin.  UGH.  But I am taking him back to the ped tomorrow, and will ask them to check his bili again...  I will say though, his color is so much better and his awake and alert time seems to be increasing by the day.

SO, that is the crazy story of Mr Henry's first few days.  I guess it's good that all three of my kids have had similar paths and that I know enough to handle it and be able to stand my ground.  It doesn't make it easier, having to watch your baby be poked so many times, and not have all those first days snuggles, but at least it's our status quo.  We have nothing else to compare it to, and as I've said before, if this is the worst "illness" my children ever have to battle, I'll take it.

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