Changing of the Guard

When we got here, they told us- every 2 weeks a new resident and fellows come on the unit. Usually when the doctors, fellows and interns do rounds it is a small group- they come in the room and go through a list of things.

• Weight (loss or gained)
• Nutrition (breast/bottle/tube)
  
• NAS scores (this are those pesky withdrawal scores)
• Medication level
• Vitals/Stats (Oxygen, heart rate, blood pressure, respiratory rate, her coloring, her stomach - no clue why I will ask that next rounds, but they always note how her stomach feels)
  
• Social information (basically a report on us- the 'rents)
• Etc (anything else notable- did she spit up, how was her night in general, concerns, etc)
• "Questions from mom" (any questions that I have)

Let me set this up a bit, to really get you there...

Picture it, first night moving back into the hospital. The nurse that is in charge of L, while probably the most attentive, caring and gentle nurse that she can be assigned- she also makes me want to get semi-violent. She literally has a story for everything. Talks to herself, has suggestions and helpful and sugary sweet info to share to the "girls" that me and L and does not stop talking. Ever.

C hung with her Saturday night and when we got back from dinner last night and I saw her on the floor I knew luck would have it that she would be L's nurse. And sure enough- she came in to 'check on the girls' and told me all about the 'girl chat' she and L had at 4am the morning before. They didn't want to disturb dad, meanwhile C had already told me the whole story because he was awake and heard their girl chat for approximately 1 hr. All about stinky diapers, the state of the union, outfit possibilities, a bath in the near future and her thoughts on her niece, nephew and mom- who is like her own child. Yup, in fact just the other day at 83 she went out and got her ears pierced with out telling anyone, if she comes home with tattoos apparently they are going to have a little talk.

To protect the innocent and for identity sake, I call her Harri. Halla Harri.

This entire process has been humbling. Practically having the state of MA check you out, internally, just a few weeks ago- literally the entire building, I'm pretty sure, has seen my goods if not gone in for a closer look. My husband saw my intestines... not once but twice (he couldn't help but look again), I was cleaned up several times by many wonderful woman, but had to be cleaned none the less. My husband had to check my southern region daily for puss and infection- I mean the list goes on.

NOW when I had to feed the babe, I have to whip 'em out 8-12 times a day like it's Mardi Gras and I've got beads to collect and can a girl get a quiet moment? No whenever it's 'feeding time at the zoo' the staff of MGH comes tromping through the room like we're giving away free iPhones.

Harri is no different, she likes to baby talk the babe, while I'm trying to get our feed on. I mean I'm generally against baby talk as it is- particularly from a stranger and always when I've got my top off. And she is a close talker- also something I personally find punishable by death, and once again even worse when my stuff is out and about. But there I am, semi-topless with Harri in our face poking around and trying to talk L into doing what she needs to do to get out of here.

Which, I appreciate, but really can you wait until I got my bra on? Dang.

Now that she is on a feeding schedule of every 4 hours, we did our thing at 8pm and 12 am. She did a'okay. Could be better, could be worse.

This is where the night took a serious focus and turn. At the 12 am feeding, we woke up at 11:30 pm to get going with diaper changes, temp taking, and all of that. Bells and whistles were going NUTS on the floor. Harri came in to tell me not to walk to the left, as there was an emergency. As if I would be taking a stroll at some point tonight. It was awful. As it turned out the baby that took L's room/bed was having the emergencies. Why do these things happen? There are millions of terrible things that happen everyday. But to babies? That I do not understand. Why do they even have to have things like NICUs.

C & I have noticed the parents of this baby- and through quick conversations or by way of being in the lobby at the same time as they are there we learned only a little about them, but yet I feel like we know them so well in ways others that have known them for years will never understand. They live in Portland, ME and are staying here day and night and not able to hold or talk to their little one. We can certainly feel their pain. Their little one seems to be much much worse than they anticipated. They were, however, somewhat prepared early on in the pregnancy that he would need a surgery once he was born. They have so many machines connected to his (I think) little body they don't have any more room to stand them up and have to put some on the floor. He has had to have several operations, and last night I believe they almost lost him. I don't know their name and I don't know why they are here but L and I prayed for them last night- and thought about them before I fell back to sleep. I don't know how we gather the strength to go through things like this, I'm amazed everyday. And truly thankful that we are on a road to recovery. This place though, much like L, has changed our lives and we will no longer be the same. This unit- the staff here- they do amazing things. Even with the jokes and the rocky roads we've gone through and may continue to go down- there are truly angels among us.

I couldn't not mention this but I've gone off track again... it is an important piece to the story as it is the last thing I thought about. It was how I fell asleep- thinking of this family, what they are going through what we've been going through.

I awake to L giving a good ol'cranky cry screaming "I am awake and I must be picked up NOW!" I can't believe how light it is outside, for 4 am and all. I'm foggy, I'm disorganized- these, as you know, are signs of withdrawal. I stumble over to L greet her with a "good evening" and even she looks at me funny. In walks Noelle, one of our day nurses. (That actually isn't her her name, remember we are protecting the innocent here. She looks freakishly just like a girl I used to work with named Noelle, which is how I came to that being her new name. I'd like to say that we make up these names just for your enjoyment, but it turns out we make up names for everyone- now we just publicize it.)

Now I'm totally confused- and since I slept with my contacts on they are dried out and I can't keep my eyes open. So there I stand, with my hair all over the place, I get the night sweats too- so in some places it's pasted to my head/face and in others it is snarled up like a nest, my eyes opening, but mostly shutting - disorganized, confused and looking around like I don't know where I am.

It turns out, L didn't give a peep for the 4am feeding time and Harri never freaking woke me up. Why would she wake me up? Cause I have to feed this kid and pump every 3 hrs, but because she is on the 4 hr schedule then I have to for 4 hrs so when she is ready I have a ready supply for her- but now at this point it has been 8 hrs since I last pumped.

You'd think I'd be excited- I got 8 hrs of straight sleep. Instead went into a tail spin- I was a lunatic- I practically ran Noelle over with her happy sing-songy "Good morning sleepy heads" (yup, she is sugary sweet too, practically sings when she has a conversation) and blow past the receptionists with their "Good mornings" with my hair all over the place and my contacts still not quite right- so with one eye open I get to the pumping room, grab one of those damn yellow machines and get to work. A crazy person running down the halls, because all I can hear in my head is C & my mom, going ballistic that it's been 8 hrs that's 2 pumps in their book that I have now missed. Harri is going to pay for this.

Now that I had that under way and set- as I close up shop I begin to get a little annoyed. I mean, I'm glad I got to slept now but you know when you start your morning not quite right?? Here I was - the first new day in my new digs and not happy with the opening act. That's when I heard voices- not the pumping Nazi's- the doctors and nurses... doing rounds with out me!

WTF. I pushed back the curtains that I had pulled- I mean no one ever had a problem before coming in when the pump was a-going- the freaking cleaning lady comes in like changing the garbage bag is the biggest emergency on this floor, but the doctors aren't going to interrupt and have me be apart of rounds??

This is where I get a bit angry host mom... keep in mind hair still all over the place, the contacts have kind of taken care of themselves- but what I didn't know at the time I have a slight drool line on the corner of my mouth and my nursing tank top wasn't really situated right. I barrel through the curtains and practically knock over one of the interns. They are directly outside my door, but I didn't realize that when I came out at 60 MPH looking to kick ass and take names. After I plow down the intern, I snap my teeth, put my hands on my hips and await being acknowledged, I look around.

They didn't come in because there were about 15 - 20 of them- and they aren't going in any of the rooms. It's the changing of the guards so for the first day of the new residents, fellows and interns - so they do rounds all together. I found this out after the fact.

Rounds went like this (direct quotes possible due to 8 hrs of continuous sleep):

They relived the last 2 weeks for the group, and went through the normal rounds of facts. Meanwhile, I did not connect the changing of the guards at this point- so I'm cranky and pissed that they didn't call me out to participate, and I'm frankly still out of sorts by the way the last 30 minutes have gone.

• Weight (loss or gained): lost weight, after gaining weight- above her birth weight now (she wasn't for a few days) but lost weight from yesterday.
  
• Nutrition (breast/bottle/tube): tube feeding, but goes to the breast before each feed- it is somewhat successful but needs more consistency.
  
• NAS scores (this are those pesky withdrawal scores): scores have been 0-2 consistently for the last 24 hrs.
  
• Medication level: 4q PO 1.0 morphine (every 4 hrs, orally, 1.0 ml of morphine is given)
  
• Vitals/Stats (Oxygen, heart rate, blood pressure, respiratory rate, her coloring, her stomach): perfection, pink and soft - all wonderful.
  
• Social information (basically a report on us- the 'rents): Mom by bedside.
  

At the same time:
Resident on the far right of the crowd that can't see me says, "Can we please bring her out before continuing? Is she here now? "
I say, in a pretty nasty b tone, "I'm right here." as I raise my hand.

• Etc (anything else notable- did she spit up, how was her night in general, concerns, etc): Just spit up a bit, but no vomit- is keeping down PO feedings and meds, IV taken out recently.

At this point, before asking for questions from me- the crew starts discussing the next course of action and how to proceed. This looks and sounds like any ER or Grey's you've ever seen. With the group of 2-4 it's one thing but with 20 of them it takes it to a whole 'nother level. Most of the suggestions were mildly the same - but the course of action they decided to go with is aggressive and exciting.

• They are going to increase her fluids, again, and see how she handles them because she needs more food to gain weight- by increasing her she will be taking what a newborn should be eating anyway.
  

• They are going to decrease her 'phine by .10 every 4 hrs if her NAS scores are LESS than 4. This way as she gets down to 0 there is a rhyme and reason as to why and when they are decreasing her, now that they feel confident they have a handle on how she is responding to the drug as they wean her off. This also means if her scores are above 4 they will go back to the previous dose and hold until she is under 4 again.
  
  
• They talked about moving her to the step down unit because it would be easier for me to stay there. I'm not sure why or what- but I'll take it. The problem is that there is no room at the Inn for us right now, and if there is a baby that would be there and need long term support he/she would get the spot before us because we are not in need of long term care. If you are going to be denied, I guess that's a good reason to be denied.
  

Then we got to the "Questions from mom" the exchange went like this:

Me: "Originally we were trying to feed her by bottle or breast. Then I had a nurse or two that insisted we go via breast only, however the doctor ordered on a consult with the OT to do bottle feedings. What changed? Does it really matter - bottle or breast and if it does which is it?"

DR: "It doesn't matter- it is a matter of personal preference."

Me: "My preference is that I can take my baby home- I don't care how she learns how to eat- she can eat with her feet at this point. If I have to pump for the next year into a bottle because she prefers that, I'm fine with that- unless there is a medical reason that she shouldn't go to the bottle then why aren't we doing both?"

(PS- I thought the eating with her feet comment was smile-able nobody even cracked a grin, tough crowd.)

DR: "If you don't have a preference- we should be trying both. You are right."

I think they sent the OT person in after to confirm and further clarify the feeding situation:

She assured me that not only was I right but I was thinking about it all the right way, and L will end up preferring the breast anyway- it is human nature to bfeed and the skills she needs, she has- to organize them she can do with the bottle or the breast. It is, however, usually difficult to convince mothers of this- as they usually prefer to only breastfeed. Apparently she doesn't know me, but that's okay. She did allude to the fact though that I'm going to have some 'esplaining to do- when it comes to the LCs. As there are some nurses that say "breast is best" and others that feel the bottle is great too- as for me I'm going to stick to my feeling that I truly don't care how she eats- just that she eats so we can gas up the car and get her the hell out of dodge.

It's a long one, but with the changing of the guards and our very first overnight together a lot went down. Next stop... home?

Wean Watch 2007: Reclaiming Limbs and more!

L got her hand back! The IV is out and she has her hand back. In celebration she clocked me with the very hand that was tied down for a few days. She is keeping the dose down orally (through her feeding tube) and continues to try to eat the good ol' fashion way.

In WW news, her dosage is DOWN DOWN DOWN! They took some big jumps since last I wrote- but so far so good! The math has been interesting- and they use a lot of formulas here- I keep begging the question, can't they make an excel spread sheet for this and plug in the numbers and formulas? It seems silly to rely on your fingers and a solar powered calculator in the dark.*

(kidding family, relax. This is a joke- not serious. Side note: not as fun to write when you have family refreshing the screen every 4 seconds and taking every word for the word of God and forgetting my sarcasm that isn't always the whole truth. Moving forward I will put a * after a fact if I embellished a little bit. This way I can avoid explanations like this one and keep the 'integrity' of my inner monologue. Family guilty of said reaction above, please email me so I know you got the message. You know how you are.)

Strangely it is all starting to make sense though (the formulas not our family). To give you some prospective, on Saturday she was at 1.6, every 3 hours, then 1.4 every four hours. By Sunday they had her come down to 1.o! Normally the rule of thumb is they go down by .10 each day but the way each person metabolizes drugs is different and as I previously said at 1.6 and 1.4 it was still too strong. The dose of 1 worked well, so we are back on the road of weaning.

We moved into the hospital- now that she can eat or at least attempt to eat we want to be here to make sure she tries each night. The nurses do try via bottle- but we can try both- well I can try both. Chris stayed Saturday- he will likely do weekends and I will do the weekdays. We'll see how that goes.

More tomorrow- but for now I must get settled into my new digs.

Wean Watch 2007

Getting that monkey off her back takes time, and we should spend most of our energy on positives, for example:

• L is on no support in terms of oxygen (yeah!)
• Is starting to get feeding from the bottle and the real deal holyfield (yours truly) (double yeah!)
• All of her numbers/stats are perfection (triple yeah).
  

That's the great news, the bad news is the wean continues.

Today they tried out giving her fix PO (orally, you can call me Dr. G) and for the first time (this is the third time they have attempted to do this) she has kept it down. That could be a great thing, but with out this being consistent a few times/days we won't know for sure. As soon as they can get her to take the 'phine orally and keep it down (little known fact about morphine- going down it is blue, coming up it is green) they can take out her IV lead. This is, of course, great great news.

Poor little bug has tiny tiny veins and it is extra special difficult to give her an IV lead (just like her ma) and she has "blown" through 2 leads in the last week. The one she has now is on her hand/wrist so it is a matter of time before she takes care of that one herself- as you can see in a lot of the pictures she LOVES to have her hands on her face. Now that she has an ipod strapped to her arm and hand with IV connectors sticking out of it in perfect position to take an eye out- it just really ads flavor to her experience. They have to cover the connectors so it looks like she has a gauze or sock hand. Oh and the line is "positional" which means her tiny little wrist has to be in the perfect position for it to work- and for a girl that doesn't like to be told what to do or which way to position anything it is super fun for her, I'm sure.

By successfully going to a PO 'phine fix, it means we can go to "step down" which is off the ICU unit (holla) and it is one step closer for us to have a wireless bambina. Ah glorious.

She'll still have the monitors- but one less gadget to deal with when holding, kissing, hugging and changing her.

Many loose wires + messy diaper = disaster

In addition to successfully holding down her drugs the good ol'fashion way - they are also decreasing the dose AND the amount of times they are giving her this dose per day. It's a lot of changes that they weren't originally going to do- however they have to because the first dose of the 'phine hit her like a ton of bricks. This could be fantastic news- as potentially her body is ready to go down in this way. As I've heard just under a million times, she's the boss and every baby is different. How each babe metabolizes any drug or takes any treatment is different so they have to see how she responds and adjust accordingly.

Only time will tell- today might have been a big step in the right direction, toward the door home. Glorious.

The Life of a Cow

I am exhausted. I know I was warned- but I'm really exhausted. And it hasn't even really begun yet.

Part of it has to do with my schedule- I've been coming to the hospital early, maybe 6 or 7 am daily and I stay until after Chris gets to the hospital after work- we don't like to leave until she is completely settled for the night, which is usually around 8 or 9 pm. I try to sleep when L does, but it doesn't always work. When she is sleeping and I can't sleep I write or I have been trying to keep that photo album up to date. I'm trying to update it daily so we can 'see' the progress. It helps.

Little known fact: it also helps with nursing.

I was NOT looking forward to the whole thing- and to make matters even weirder- with L not ready to eat from anything- except her feeding tube, I have to use all kinds of machines. Me and my yellow, state of the art, hospital grade milk machine and I spend every 3 hrs together.... NOT what I was thinking when I thought about 'bonding time' but none of this is what I was thinking.

To make sure that the milk arrives, since I was with out a crying baby to begin with, me and the machine have to get intimate for 15 min every 3 hours to start with. C and my mom- both diligent with time keeping and nagging equally, would be looking at the clock waiting to remind to strap in. Every 2 1/2 hrs the reminders would begin. Both of them equally as militant. The two of them even came up with a little song "pump pump it up" - maybe less of a song and more of cheer. Next time you see or talk to one of us, we'll do an impromptu performance for you. While the 3 hour blocks of time were about to kill me, the nurse informed me recently that now that it has been 2 weeks, to keep up with how much L will be eating, I should get intimate with the machine every 2-3 hours and for as long as milk keeps a coming. Fun, huh? Also, none of this was in any book that I read. I am not surprised.

All of this being said- it got EVEN weirder when one of the Lactation Consultant (LC) (most that I have met have NOT been crack pushers- like I anticipated- they've been nice not too crazy) told me it would really help to use L's blankets and pictures while I'm pumping. So there I sit, at 3 am with my yellow machine, in my glider... sniffing a blanket and looking at a slideshow of Lilli. I feel like a dog- with the sniffing blanket piece... and some kind of cyber freak- with my photos.

Sidenote about the LCs here- one said the following when we first started trying out the b-feeding thing. This was Tuesday.

"See how disorganized she is? That's a sign of withdrawal." (true story.)

My thoughts... She's 12 days old- how organized should she be? Is there a lesson plan we should be preparing for her so that she can get her sh%t together? Is there some kind of pattern or organizational chart we should reviewing with her? Disorganized. Again- of course she is disorganized- you've had her doped up literally all of her life. Dang, cut the girl a break- I bet they don't treat LaLohan like this. And if they do, no wonder she falls off the wagon. Disorganized. NO child of mine is going to be disorganized. Wouldn't you be disorganized if all of sudden someone you just met, whose voice while familiar has always been like the voice of Oz? Behind some curtain- now here she is, you finally get a face to a name and before she can even buy you a drink she is disrobing grabbing your head and putting her junk in your face. Disorganized.

Anyway, back to the issue at hand. Whatever works. It is the best thing for her- for so many reasons. One being- lets face it. Baby's got back- and formula is more filling. It also can be tricky- gas wise and the last thing we want to deal with is digestion problems. What will hold her "back" at the NICU is not being able to digest and eat- so like I said whatever works. Plus it's good for her. Yes, I admit it. It is the best thing for her. Now I won't be joining the LeLetches and if she can ask for it, it's time to close up shop - but that's just me. There are many people who share different thoughts than I- some who would rather have their children take milk from someone else's breast then their own and others who would b-feed until their kids were tying their own shoes... and to them I say "GOOD FOR YOU!" Listen, it's better you than me. I'm not saying it's wrong, it's just different. For me- I'll do what I can give her a the healthiest start, especially after all of this. Even if it means feeling like a cow attached to a pump machines for the next few days or weeks. I now have a deep appreciation for those smelly bastards.

I can't wait to be up with her at 3 am- not my yellow machine. It will take longer- I know- cause right now I can "double duty" here with my fancy machine and be done in half the time, you know how I like to multitask. Ultimately, it will be twice as nice with her.

Rehab

Two days ago was not a good day- having had yesterday now behind us- I realize actually how bad Tuesday was. Lilli was wilding out... stupid morphine. I am sure it carries a nice buzz, but the residual effect of getting her OFF the junk is not nice. She has all these "symptoms" of withdrawal that look like baby symptoms! I mean, I’m no expert, but on Tuesday I was convinced that the nurses didn’t know what they were talking about. That what they were sighting as problems, I was fairly sure non-junkie babies have.

They look at this list of symptoms and score her- to see where she is on the withdrawal scale- a 0-3 is where they want her… closer to 0 of course as she gets to 4-5 they watch her closely because once she goes to 6+ she is in a place where the pain, discomfort and overall danger is. It’s not that she will go and jump off the wagon and try to score some ‘phine at the corner- but with increased agitation and discomfort her stats could change. Her vitals- all those numbers and values we have learned about have been great. We don’t want those to change. She is off all aid of oxygen support now- and what is left to complete before we can take her home is to get her off the drug and eat independent of the feeding tube.

Tuesday, I wasn’t seeing it all as clearly. This whole scoring thing was driving me crazy. It is so subjective- they can mark her as having withdrawal - because she "isn't acting like herself." Now that quote would push me close to the edge.

"UMMM, LADIES, HOW do you know what she is like? She is 11 days old and is only now starting to feel anything because you've had her hopped up on drugs since day 1."

That's what I feel like screaming at the nurses.... but instead I smile and say thank you- and pick up my crying little girl and try to calm her quick enough that she doesn't get a bad 'score.' I do ask a lot of questions, but at a certain point I have to have faith in what they are doing- and trust they know what they are doing- but I do question a lot... I can't tell if they appreciate it or want to hurt me. I figure either way I win.

Appreciate it- they like me. They are good to Lilli.
Want to hurt me? Well then they will want to make Lilli better asap to get rid of me asap.

Some signs of withdrawal are:
- crying
- spitting
- sneezing
- alertness
- diarrhea

The nurse we had Tuesday- literally everything Lilli did- I got “that’s a sign of withdrawal.”

The day went like this-

LAG wakes up and fusses until I pick her up.
Nurse says, “that could be a sign of withdrawal”
I say, “Don’t most babies cry when they wake up and need a change?”

LAG shats her brains out. Literally.
Nurse says, “that could be a sign of withdrawal”
I say, “Don’t babies usually have nasty diapers?”

LAG spits up her food.
Nurse says, “that could be a sign of withdrawal”
I say, “Could it perhaps be the fact that she got too much food in this feeding? She hasn’t eaten this much to date- doesn’t it take time to expand the belly?”

LAG sneezes.
Nurse says, “that could be a sign of withdrawal”
I says, “Don’t kids sneeze or is that generally just an adult behavior?”

I was angry on Tuesday thinking that they were just going to willy nilly give my babe her fix, rather than fixing her- sleep deprivation will do that. I questioned a lot and did more research – and like I said ultimately we had to decide whether or not we were going to have faith in the professionals- because last we checked we didn’t attend any kind of medical school. Tuesday night, as they said they might, they increased her morphine and Wednesday I finally saw what the nurses and doctor was telling me. She was a different baby. IF she didn’t have the same cute mug, I might of thought they switched her out with a different girl.

The amount of morphine she was on while they were making her lungs better, was extremely high- and coming down from that will take time. Patience has never been a virtue that I have had, but everyday she teaches me what it’s all about. Last night, they took her down, back to where she tweaked out on Tuesday, and as they said it would happen she is doing better. She is handling this reduction like a champ.

She is currently 1/2 way there to 0. This is in less than a week from when they started weaning her off- looking at it like that shows what a Rock Star she is. But everyday is a different day- nobody said rehab would be easy.


Amy Winehouse - Rehab lyrics