Sunday, October 28, 2007

WORD UP

L is in the hiz-ous!

She is off the junk. She is healthy as a horse and is eating like one too.
She is home sweet home.

It's her 1 month birthday and it was the best damn day ever.

Story to follow.... but that's the word on the street. Got to get back to our girl now.

Month 1

Every month we'll take a picture of our pretty girl in her 12+ mo shirt for the first year! Like the bump watch you'll see her grow before your eyes.

*We got the idea from Martha- as I was laid up in bed during one of the days they attempted to get me to go into labor. Thanks Martha.

Editors note: never did do this bad boy. Whoops. I guess I should file this one under a fail?!

Saturday, October 27, 2007

Wean Watch 2007

Day 28 of L's life was her last day on the junk. Today, day 29, she is clean. Now we wait.

We are staring at her as if at any point she is going to get up and run to the corner to try to score a hit. So far, so good. It's just a waiting game. Theoretically the 'phine is out of her system, but as they have ingrained in my head "every baby is different and digests the drug differently." She could still relapse at this point, we just have to monitor her. Just when I thought this process couldn't get harder, I have to just 'wait' some more. This is what I get for all those stupid countdowns, how laughable are they now?

That's the update, no update yet- just the usual hurry up and wait.

Friday, October 26, 2007

Pump & Dump

Sure fire signs you are not quite right:
  • The simple question: "How's she doing?" starts tears immediately- no matter who asks: the doctors, nurses, social worker (clearly sent in by the forenamed professionals), the cleaning staff, the meal delivery guy.
  • While leaving a simple voicemail in a middle of a preplanned joke you crack like you are telling the caller you ran over her puppy.
  • The LC nurse at the NICU suggests you go home for the night. And while you are there, drink some wine.... pump and dump.
In regards to pumping, when you are tired and stressed milk production tends to take a lull. I'm fairly certain that I qualify for both and as a result I'm not much producing like the milk cow I once was. In addition to my lactation deficiency I wasn't able to hold it together after the disappointment of continued hopes dashed on Wednesday. Wednesday night, despite my inability to produce milk that my moose child so desperately needs- the LC begged me go to home and get drunk. She took L for a walk around the unit and let me rest for 2-3 hours. When I woke up I could see C through the window talking with her. When I got out there I heard their plan- they wanted me to go home. C had brought his things to stay the night, he was beginning to truly be worried that once L was discharged I would have to be put through intake.

It turned out that our night nurse was someone who was a touch of condescending and truth be told, C doesn't really love her too much. That being said she is great with L and she has 8 kids of her own. I figure other than the neo-natal RN she was totally qualified. Plus her first "cryin ryan" was colically so she knows what it's like. OH yeah did I mention they now think she isn't so much withdrawing as she is colically. Which means, she cries for no reason for hours at a time. As long as she doesn't freak out and get too "jerky" with her movements we'll be fine- but we're talking SUPER SUPER fussy. Awesome. Like we don't have enough to deal with. Dr. Coleman (my mom) had suspected this earlier this week as well. This just proves her theory of her own honorary medical degree.

To avoid permanent residence at the hospital against my will, I went home with C for the first time in weeks. We got to just hang out together. It was nice and just as everyone said I felt like a different person the next morning. I got my supply back to going up and even better- when I came in the next day L was a different woman herself. She took to nursing out of nowhere and even slept for 2+ hrs at a time. What a treat! I should have left her days ago. I checked her ID bracelet to make sure she was really ours and continue the hope that any day now we can all go home together, as a family. I overheard another day estimate on when they might just let us go, but I'm actively trying to forget about it and take it one 24 hr stretch at a time. She is down to one 'phine dose a day, today. Today she is 4 weeks old and is also the 1 month anniversary that we checked into the hospital originally to be induced. I hope to soon be able to pump & dump for celebratory reasons, not to provide a temporary break in between nights here at the NICU. Everyday, we get a little closer...

Wednesday, October 24, 2007

I could take down the post below, I could edit it, I could do a lot of things- but I won't.

Just when you thought it was safe to believe the doctors, they throw you for a loop. Turns out that when one said "end of this week" she really mean "beginning of NEXT week." Turns out that that is up for interpretation because L isn't really feeling this last wean, so beginning of next week could mean anything. I knew that, didn't I? Ah but silly rabbit I fall for it every single time.

Looks like L will be here for her first milestone, month one. What's a few more days at this point you might think. Each day feels like a lifetime, some are better than others. Today being one of those I wish I could have slept through.

We will continue to try to be strong and keep having that faith. At the end of the day we are a very lucky group. She is strong, healthy and besides this littl'addiction problem perfect in every way.

Wean Watch 2007

.06 is where we are at. She currently gets that every 4 hours. The plan is that today she'll be brought down to every 6 hours. Following that, we'll go to every 8 hours. Then the final step being a whopping ZERO. Oh glorious.

She is a bit temperamental, but is able to calmed, so it's fine. On the scoring side of things, we can take it. She isn't so much sleeping on long stretches of time, which means I'm not so much sleeping in long stretches but it's fine. All of these things and more are part of the wean, but if she can be calmed we can continue to wean and even take her home with scores of 5 - 6... how fun for our neighbors!

We get a new nurse every now and again so patience continues to run thin with the continuous suggestions and 'helpful' pieces of advice. Since it is clear they are all reading from the same script, I wish there could be a check list in our file so that they can see we've already been told I should bfeed here and have access to their wonderful LCs or how the NAS scoring card works. How little faith do their have in their colleagues? We've been here for 3 weeks, you think no one has mentioned any of this to me? Instead of that checklist there is likely a note stating that "Mom is a real biotch."

The plan with the morphine is pretty cut and dry, but for my sanity is touch and go. That's the plan- what reality will be- who knows but that is where we stand. We very well could be coming home this week- so keep sending those good thoughts, and keep praying. If you have any 'ins' with the big man upstairs, see if you have another favor to call in.

Monday, October 22, 2007

Cluster Feeding is a CF

C kept talking about this "cluster feeding" where she just mows for a few hours at a time, of course conveniently during the middle of the night. I thought he was full of it, until last night when I was back on shift. Sure enough between the wee hours of 12-7am she would eat like a moose, nod off for an hour and wake up with the munchies. I'm fairly certain if she were to be bfeeding she wouldn't be able to get this kind of satisfaction, I mean I'm only one woman and she kind of cleaned out the fridge with the reserves. Cluster feeding = baggy eyes, among other things.

After Thursday, the last few days have been good. She gets fussy when she's hungry and with the morphine getting lower and lower, baby's getting her appetite back. Let's face it- she's a big girl and she can eat. The drug has been suppressing her desire to eat and now that that is coming down more and more she wants food, and she wants it yesterday.

The plan remains the same, she is coming down by .06 everyday. Today, at 4 pm if she continues to be doing well as she has been doing, she'll be down to .12 and that is as low as she has ever been. Mayday Thursday she was at .15, so today is a big day. At a certain point the dose is so teeny tiny they will just stop giving it, I'm afraid to ask when that is- but I'd put money on tomorrow. The doctors and nurses say she is almost there. I'm not officially packed up yet- but we very well may be home by the end of the week. I informed the nurse last night, I don't want to hear about a day that we might go- just let everyone know I just need 15 minutes and we can be out of their hair. I'd rather not get get my hopes up anymore, so a little warning before we have to leave would be just fine. If we do get to take her home this week, it will be in time for her 1 month birthday! We talked about it last night, going through the last few weeks, it seems like a lifetime already. Can you believe it's been over 3 weeks? Wait until you hear about how she even came to be- the days preceding her birthday were a CF in their own right.

Keep on hoping and praying that this is the week, it very well may be.

Saturday, October 20, 2007

Kicking Dad's Arse

Last night I was discharged, before being admitted to another unit. I walked outside and took in fresh air for the first time since Sunday. C has been trying to get me to go home and let him stay and he finally won. With the weekend here, he stayed with our girl and I went home.

Ah freedom. I came home to an empty apartment (with the exception of poor Abelle who barely recognizes me) and settled in for some TV, dinner and pumping. What a Friday night! I haven't watched TV in 5 days, so I pretty much became a zombie and probably should have slept more, but there was catching up to do.

While I vegged Dad took over. He had to deal with a hippy nurse we had never had before, she of course had her own ideas for L. Like, for example, the kind of nipple she should be using on the bottle. She switched it on us. This goes against what 2-3 nurses have told me as well as the OT person we'd been working with. With L having been on a respirator one of the complications with coming off of it is her reflux- she was vomiting previously a bit too much after big feedings or any feedings at all. She has gotten rid of that- but if moved around too much while eating or not in the right positions, she gets ill. We have been working on this with the OT person. I will say this about our experience, not ever new parent gets hands on training from the best nurses, doctors and specialists in neonatal care in the North East.

L needs to use the "slow flow" nips cause they have her work for the food- and this mimics breastfeeding as well as helps with her reflux because too much milk, too fast means it'll come right back at'cha as well as hurt. Her throat isn't used to swallowing hard- so it's baby steps. When I called this morning to get the status report from C and he informed me of the nip switch, mommy got her sneakers on.

While I aimed at the wrong target, C now armed with more information, had a talk with the new nurse. Hippy was gone and we got that switch taken care of. Last night she was cranky and crying- likely because she had to deal with a new nip and was frustrated. She made C really work for it, to get her to go to sleep. She also threw up her feeding... shocking? No, the poor girl was being bombarded with milk. Idiots. Additional frustration for C, she soaked him with the backfire, literally.

Sometimes when they problem solve they choose the wrong door- it's the same process parents go through everyday. With this situation, we are are trouble shooting - but we aren't alone. We have multiple nurses and doctors making suggestions as well. Too many cooks in the kitchen. Poor girl- she was just snacking and wanting to eat less more frequently and hippy thought ... nah, let's fix that with hosing her down with milk.

In addition to the Nipple Confusion Episode '07, Dad learned a few more lessons. Like when she doesn't have dirty diapers all day, like yesterday, she is going to have a MESSY night. He was woken several times, not by a crying baby but by the shear volume of her arse. Baby had some serious gas last night. He had earth shattering diaper changes last night, each one right after he would change her, sometimes her clothes or her bed.

Our girl also has a set of lungs on her- whenever Dad wouldn't move fast enough she got violent. She would scream louder than the helicopter arrivals. Our room is 'conveniently' under the hospital's helicopter landing pad. Of course. If she wasn't screaming she would try to claw at him like Freddy Cougar... at one point she nearly took his eye out.

L definitely played games with her dear ol'Dad. Even with the disastrous diapers, the near loss of his eye and gasoline that would make grown men wilt- I'm pretty sure he wouldn't change it for the world. With work, Abelle, having to sleep and all- he can't stay too long at night. Getting to stay with her, he gets to spend more time with her- which I know he looks forward to. She has a spot on his shoulder that she crawls up to and nuzzles into... last night she even got high enough that he's pretty sure she gave him a hickey. When a girl is hungry, she's hungry- sure she is a little confused on how to get the food but she knows she's got to suck to get it. She sucks on her fist and apparently also necks if they are handy- it's all the same to her! Hopefully tonight she'll cut him a break.

In terms of how she is doing - she was a handful but normal baby handful not drug addict needing her fix handful. They will wean her at 4 pm down to .24, this is down from .3. Slow and steady is now going to win this race. They will wean once a day at less than .10 each day. This could change, but even I'm comfortable with taking our time for the last bit of this monkey.

Friday, October 19, 2007

So close, yet so far

Yesterday we were steps away from going home. I could smell it. I could hear our crazy neighbors outside in the street, their base bumping cars, honking for their boo to come out. We were so close. She was at .3 in the morning. They brought her down to .15 at noon- if she can hold it together at 12 am they will bring her down to .15 to be given every 6 hrs instead of every 4... which is a wean. I was nervous on how that was going to go. I started seeing signs in the morning that things were changing.

The day nurse slipped that the team of doctors said if all went well last night, we'd be going home on Saturday. I tried not to get my hopes up- I almost didn't tell C, I didn't want him to be disappointed either- we took it with a grain of salt but a girl can hope. I silently planned the next 72 hrs and waited.

Around 3 pm things started getting funky- she started changing a bit. By 8 pm it was clearly not getting any better. The nurse and I tried just about everything. By 12 am they had to increase her dose back up to .2, then another .2 for a total of .4. Before they could get her there- they had to give her more to calm her down and bring her to "baseline" so she could settle down. She cried for hours, I didn't know I could hurt so much. She couldn't calm down- they had all kinds of nurses coming in, all kinds of things to try. There was swaddling, warm blankets, they even got out the unit stroller and was going to take her for a ride- but she had gone too far down that withdraw path for that. It was awful, disappointing and heart breaking.

This morning, after a long nights sleep- she is doing better. Radically better. They brought her back to .3 for today and our plan moves forward this time at 12 hr intervals they will bring her down very very slowly instead of aggressive as that is not working at this point for this last little bit.

They assure me that "soon" this will be over, and even though I can't see it now, she is doing great. They also asked if I waned a change of scenery there is another unit we can be transferred too- a "step down" where people are transitional to go home, but there is no private nook as there is here- and while I hate this place, I hate this unit- it's not them, it's the whole thing. It's this hospital. So maybe I'll behave a bit better, as I don't want them transferring me if they don't have to.* If we do move, apparently this step down unit is a large pit of babes and parents trying to get out of dodge.

Last night I was shaken, I didn't know how to help her- and I don't think I could have. Today I was even gun shy to go to her bedside in the morning as I didn't want to disturb her. The team of doctors came in to talk to me today, once again to make sure I understood what they are doing and why. I think they wanted to make sure I'm on board, because I'm sure somewhere in last nights' notes there is a description of the scene. When the doctor and nurses came in to increase her dosage to .4 I held on to her as if they were coming to cut arm off. It felt like we were going backwards, when really we needed to just press pause.

Today was a better day, and tomorrow we will continue the journey of taking it one day at a time. It's hard to believe that this will ever work, but they assure me it will, it will just take time and we are so close.

Wednesday, October 17, 2007

The Night Mommy Nearly Lost Her Mind

We've been patient with this morphine dance, truly, more so than most might be. We have had faith in the professionals here at MGH and have learned more about NAS scores, respiration rates, heart rates, and oxygen levels than I care to keep track of.

I'd say we are being good god damn sports.

That being said it's wearing thin and these bitches don't know what they are in for, cause while L has taught me patience, I'm no fool and I'm certainly no saint.

Last night L's scores went up to 4- however as it has been explained 100 million times, scoring for withdrawal is subjective. So as people come in they can score one thing, one way and another can score in a completely different way. I understand that- and it is frustrating but it is what it is.

Last night she threw up... it could be withdrawal. It could also be that she breastfeed for 40 minutes, STILL got a tube feeding and was being held by Dad and he may or may not have not been the most graceful putting her down. Result- a little puke and a bad score.

Last night she got the hiccups... it could be withdrawal. It could also be that she has had the hiccups since she got here- hell she has had the damn hiccups since she was 25 weeks old.

Last night she sneezed... it could be withdrawal. It could also be that the bug pulled up her dang feeding tube - and the tube sat behind in her throat where it was would cause consecutive sneezing that she was scored for.

Now, she scored 4s which is STILL "4 or below" and they did bring her down last night at midnight. Instead of going .15, they went .10.

"Why not the .15 decrease?" I asked the nurse.

The nurse started babbling about the fact that nurse before gave her a 2 and a 3 and after that she added another 1 so the first score was a 2 and the second a 4.

I interrupted, "both of these are 4 or below. What is the point? She is to go down by .15."

Insert nurse babble.

I interrupted, "You have got to be kidding. This is a joke. A terrible joke."

The nurse, innocently enough, began explaining the NAS scoring system.
I interrupted her, "I know."

The nurse, innocently enough, began explaining how typically we go down .10 when weaning.
I interrupted her, "I know."

She became disorganized, looked like she might throw up, maybe even had a loose stool- all the signs of withdrawal or maybe just a nervous nurse coming up against a sick and tired mom at 12:30 am.

I held onto the crib, to keep my balance and cool, and carefully constructed my sentences- kind of like how a loony on a Law and Order episode gets calm before he throws a chair at Stabler or Mariska.

"I can not tell you how increasingly frustrating this is. I had the team come back in yesterday afternoon to discuss this plan which is that every 12 hours we are going to come down by .15. I understand this is not your fault, but you are here telling me something that is not what I was previously told. So, I'm going to need you to go and talk to a doctor and make sure this is the case."

She did and returned with the same ol' same ol'. That crazy b even tried to go back to her speech about what a NAS score is and how they get to it. Ultimately the order was never written- however I know it was because I SAW IT. Where to find it was another story- but the doctor and nurse on last night did not have it.

This twiggy little intern that does the rounds in the morning and was part of the team to come and re-explain the wean plan to me the night before- she was on the floor I know she knew the orders however because they claim they weren't 'written' no dice. Plus she sucks and I've always disliked her- she is quiet, mousy and her voice annoys me. This experience with her has not helped her standing on my list.

She did get weaned, however by .1 (and through out the day that's .2 which is MORE than we originally anticipated each day being weaned).

The nurse then had the audacity to say, "I know it doesn't seem like it but really it's not that much that .5."

My reply, "You stay here and go through this and tell me what is small or not. Every day is another day, another story, another plan, another way to do things and another thought. I'm done with recommendations. Please tell the nurses that I will no longer be nursing, as when I do you can't tell how much she is taking so then she throws up - and she gets scored badly because you pump more food into her anyway. I will pump and she will take it in a bottle so we can see it. I want to go home. I want to take her home. If you can tell me how we can get home, fine otherwise, thank you anyway. And please make a note that we need to revisit the weaning plan and how to communicate that."

"I know you... " she started.
"NO you do not." I finished.

She started apologizing, I have no idea- I tuned her out and crawled into my stupid little nook in the back of the room as I cried and emailed Chris with the subject line "I'm going to cut a bitch."

I’m fairly certain one day he’s afraid he’ll come in and they’ll tell him that L is doing great, but I on the other hand had to go visit another floor and will be staying there for awhile.

The Truth Changes

Last night, I nearly lost my mind- but luckily I kept it together. More on that later. For now, just a straight up update with limited sarcasm.

L is having an okay to good day, although last night was an "okay" night not great, not bad. Yesterday, I thought we were going down by .15 every 12 hours (more on that later) but it seems what we need to do is look at her everyday and go from there because each day to come down by .15 isn't 15% of the total amount against her weight which would mean an increase that would be... you guessed it- too fast.

"While we want to remain aggressive, we can't go too fast otherwise she will crash."

Thanks Doc, how sensitive and bedside manner of you.

Yesterday she actually came down 25% total with both weans which is a huge jump. In going back and looking at the notes from yesterday I misheard the plan- which means we're even because these bees aren't always the best when it comes to keeping the plan straight. I thought we were going down .15 every 12 hrs forever moving forward and while yesterday we were supposed to do that, we did that this morning instead. The plan is actually moving forward each 12 hr period is a new period of time to evaluate where we are and where she needs to go. For now, but this too will change.

Right now she is down to .45 and at midnight she will be re-evaluated. She has also been taken off the tube feedings, to try it out- and we are feeding her "on demand." Unfortunately as some nurses have said, this is complicated because with the 'phine she doesn't want to eat. Every baby is different, so she might just be up for it - but so far not so much. Maybe in a few days if this works out, we can take out her feeding tube- which she successfully pulled out twice last night. Super fun.

Today our nurse is an LC- who C has described as a Walk-A-Thon enthusiast. Every cause, every weekend, that B is walking. She has a closet filled with t-shirts and water bottles from all the walk-a thons she has done. We'll call her Nipple Walker, for these purposes. She's an LC, so kind of a boob pusher- but she's been fair with the pushing and does give both sides the "LC thoughts" and the "Nurse thoughts"... you'd think these things would be the same- but they are not. Of course.

I am bfeeding when L wakes up if she wants to- otherwise pump pump pumping it up- so that I can go to bottle if I want, which Nip Walk is not a fan of, but "no judging" she has assured me. Yeah right. Whatever. Whatever it takes- I just want this baby home.

Now it's a waiting game- when she wakes up, what she'll do, we need to count flipping diapers and hope for the best, all the while making sure she isn't displaying any signs of withdrawal as she started to do (allegedly) last night.

Tuesday, October 16, 2007

Wean Watch 2007

L has been doing great- eating from bottles and boobs oh MY and nicely coming off the junk. So far, so good. Gaining weight, two days in a row and getting stronger and stronger!

She is down to .7 of the junk at this point and moving forward every 12 hrs they will come down .15 and see how she does. If she does great today/tomorrow they might get even more aggressive. This could bring us (by not changing anything tomorrow) to zero by Thursday!

B - E _ A-G-G-R-E-S-S-I-V-E be aggressive B E aggressive.

I did always love that cheer... did you know I was a cheerleader? True story.

That's the long and short of it- more details to come later, but wanted to get that posted before I grabbed a shower and nap- in no particular order!

My Obession


vs.



The cankles took my pregnancy experience places. I have to admit, I have a bizarre infatuation with the cankles. Watching them grow has been almost as fascinating as the buddha growing. At the end, they truly took on to look as the top picture shows... know whose feet those are?

hobbit feet

But like hobbits, those magical and crazy characters- my cankles did something mysterious and magical all on their own.

THEY DISAPPEARED.

Take, the previous picture posted-

9th Wonder of the World: My Ankle circa October 2006:


Picture taken today 10/15/o7 a little over a year later:

The tan isn't there- but my girlish curves are coming back and Mama has got a direct line between her ankles, the angle isn't as hott- but I assure you live and in person I have my ankles BACK!

Pictures taken in the last week Oct 2007:



And a horrific walk down memory lane....
Sept 2007:


July 2007


And when the hysteria began, back in June 2007



RIP Cankles
You are not missed

Monday, October 15, 2007

Stupid Noelle

We are going to play the wean by ear, and no longer go down every 4 hrs, as discussed this morning at rounds. Now, we'll go down every 12 hrs to get a better gage on how she is doing, this could change as it has already changed from 9 AM this morning.

This is all stupid Noelle's idea.

Although, truth be told- I understand her thoughts behind it but in doing the math and having her come down .1 every 4 hours I could practically see this place in our rear view mirror.

(no clue what I'm talking about- you've got some catching up to do- now that I'm living here... I've got a lot of time on my hands. I already have one post down for the day and another posted late last night.)

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?



Sunday, October 14, 2007

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.

Saturday, October 13, 2007

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.

Friday, October 12, 2007

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.

Thursday, October 11, 2007

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

Tuesday, October 9, 2007

Lilli Update

I've been emailing updates, when I can remember to do so- and as I do I leave people off- I forget who I told what, or when you last heard from me. I have a small army of communicators out there- who are spreading the word but when I forget to update them or don't know when I last spoke, emailed or texted what's the point? (insert silent praise for technology here- as I'm not sure how we would have been able to keep anyone in the loop with out cell phones and the internet) In an effort to streamline communication - a favorite corporate buzz phrase of mine, I'm going to do what I know and provide updates here. Now keep in mind, I'll likely remain cheeky and sarcastic- but not as entertaining as I have ordinarily found myself to be. Lack of focus and sleep will do that to you.

"But how then do you find time to update this silly blog?" I can hear some ask. My answer is four fold.

1) I can't sleep at every moment I don't need to be awake.
2) The hospital has internet- so when I'm not staring at my beautiful little girl as she sleeps- I get antsy. Not much has changed there.
3) I'm lazy. We continue and remain amazed by the overwhelming outpour of love that people have shown us. When something like this happens you really see who is there for you and how much you are cared for. That being said, when people love you and care about you they want to know how things are going and while everyone understands we can't constantly update them- they still want to know. This way everyone can get the update and I can sleep guilt free.
4) It's strangely therapeutic, so get off my back.

The last week and a half has been pretty much a blur. Days weaving into days- it has been 11 days since Lilli arrived, but it seems like months ago! Tomorrow will be 2 weeks that we entered the hospital. The birth story to come- but to provide a little insight as to what the last week has been like…

Last Wednesday (10/3/07) was a tough day, one of the toughest to date- Thursday was a better day, for sure. Friday it got better, and the trend has pretty much kept up since up until most recently.

We had to leave the hospital, last week, and check out of our room, 1374A. Oh lucky 13.. the room on the 13th floor, who knew we'd want to stay anymore time? It was really hard- to get in the car and leave our girl... Chris was amazing but it would sink in for us at different times. She should be home with us. Seeing the empty car seat, her crib- her room - all that is meant for her to continue to be empty. It was difficult, and it still is. Never mind our arms- just wanting to lay with her- hug her- you envision this experience in such a different way. At least we did. How it would be - and like many things with us- it didn't go as planned. But this time, not so much in a funny twist of fate way like it usually does. Before we left for home, we spent the afternoon with Liliana. She gave us the best present other than being ready to come home... she opened her eyes- little victories.

I had not seen her eyes yet, except from a distance in the operating room or in a picture. It was amazing. It was a good visit. We got to touch her- talk with her- they started to decrease the sedatives she is on- to see how she fairs. It was a great visit. Before it was about not disturbing her- so while some nurses would tell us to touch her and talk to her- others made it seem like she shouldn't be bothered- so I was becoming a little afraid of her- to be honest. Well afraid that if I touched her- talked with her it would stimulate her so much that she would shunt. Shunting is when the oxygen coming in and out has levels of different numbers - and is far in value- it basically means that she is taking quick 'panicked' breaths on her own- while the ventilator does its thing. I think- we've learned a lot about numbers, values, heart rates that are good and not- her oxygen rate - the level of oxygen that they hare giving her- what that means what we should be looking for- just while we are sitting there. Although everyone says the numbers don't matter- she does- but when the damn thing blips and beeps away it's good to know the who what why of the operation...Chris has become an expert.

Seeing her and being able to see her- and have her see me and for the nurse to take off her little earmuff to make sure she can hear us- was great. She recognizes our voices- I can tell.

The next day, Thursday (10/4/07), was even better it's the little things- like we were able to take her temperature, feed her and change a diaper! It was a big day for us! She spent time on her belly- which she loved. We got to see a benefit in her being at the hospital as with out all the monitors this would be a gigantic “no no” in infant sleeping positions. In terms of feeding her- Chris pushed milk through her feeding tube- just a very little bit but they started introducing real food- so every little bit is a good start. After I came back from pumping- they put a bit in a medicine cup- gave us qtips- and had us have her have a little "taste" of it- and she loved it. Which is a good sign, because she hasn't had to eat anything through her mouth- so teaching her how to do that- 1-2 weeks after being born is supposed to take the 'most time' of this recovery process.

But the time estimates just drive me crazy- because I’ve been counting down since we found out about Lilli. Sure a lot of it was due to the fact that I was not a big fan of being pregnant, and some of it was for comic relief- but most of it truly was our excitement to get to know our little one. And now to continue to have to wait to bring her home is a little slice of hell. The great news is every time we call the NICU nurses after we leave the hospital or before we arrive we get great reports- and everyday there are small victories- and sometimes big ones.

Friday (10/5/07) was a huge day. She is eating (still through feeding tube- but digesting everything), her ventilator was taken O U T! She is weaned off one of the sedition drugs she was on, now just "one more" to go- it's morphine though so it's going to be tough. BUT she has been brought down 2-3 times by the 8th and we’d seen no withdrawal symptoms. My mom was singing to her- "trying make me go to rehab" that Amy Winesomething song? Yeah, my baby is in rehab. And at such a young age! And while on Friday she wasn’t showing signs of withdrawing yesterday it started. More on that in a bit.

Chris & I got to hold her for the first time. To look in her little face and see her look back into yours- to get to hold and kiss her- it really does make it all worth it. Although well before we were able to do that, it was worth it. Seeing what true love is. It even makes you forget... a bit... the journey to get her there. And would you do it again? It turns out you would. To wait a week to hold your little girl is some serious bullshit, but as days go by and we get closer to coming home it gets distant. And being loved by her- and our family makes it possible to keep pushing.

Little known fact about having a child: you actually fall MORE in love with your baby's daddy. True story- everyday, literally every single day, I find that I love Chris more than I ever have and more than I thought I could. Then I wake up the next day and I find that it all rinse and repeats.

This, like most things, was not found in any book. Stupid f'ing pregnancy books.

She got her first non-family visit- Kathleen was in town and got to see her- in the flesh. She confirmed what we already knew- she is beautiful. I mean Lilli... although Kathleen did look hot to trot for the NICU. (She came on her way to go out to dinner and out after on Friday- she would have landed a doc for sure- had there been any around).

Saturday, we got the green light. We can hold her ANYTIME we want. We can walk right in there and pick her up- wires and all. She's finally starting to feel like OUR baby, not the dang nurses. Chris changes diapers like a champ. Seriously. And she changes her look everyday> NOW that we can see her mouth it's even better.

Everyday was getting better up until yesterday – now keep in mind nothing horrible happened, but it wasn’t as great as days before. Friday they said “if she keeps going the way she is - we're looking at a 5-7 day homecoming time.” But then yesterday she started showing signs of withdrawal. Now here’s the thing about withdrawal- the signs are actually signs that we have a little baby and since babies can't say "I'm withdrawing" the nurses and doctors have to evaluate these signs and give her scores based on what is going on and assess whether or not she is withdrawing and how that will effect her. Translation: Pretty much licking their finger, sticking it up in the air and guessing which way the wind is blowing. This is where things will start to slow down, although it’s hard to believe they can go any slower. We got a 7-10 day homecoming time quote the day before yesterday, I think, it’s hard to pinpoint when, and the days are meshing into each other. We are not getting our hopes too high up- it would be great to bring her home in 5 days- but we're just going to take it as it comes. Like addicts do, we’re taking it one day at a time. No more countdowns for this girl.

Tuesday, October 2, 2007

The Best Laid Plans

9 28 2007
10:55 pm


Weighing in at 10 lbs 14.8 oz and 22.25 inches....
(that's just about 11 lbs and 2 feet!)


L Avery Guarro*




It was a long road, beyond the 10 months- the story and journey of how L arrived is one that is like no other. I will certainly put that together- at some point but over the last week there has been so much to take in. So much to learn- and so much to think about.


Last week, on Wednesday at 8:30 pm we arrived to Mass General Hospital to be induced, to get "this party" started. Walking in there- I didn't know what I was walking into. Looking back- I'm not sure how we got here.


We welcomed a beautiful baby girl late Friday night. She is absolutely the most beautiful thing I have ever seen and perfect in almost every way. During her time, as she stubbornly stayed put in this little home I made for her- she got sick. She swallowed meconium and has developed Meconium Aspiration Syndrome (MAS).


Typically this has been the place where we put down our thoughts- and they are usually sarcastic, usually pretty funny- if I'm being honest, and always light. That's part of the reason you have been looking here for an update and not finding anything.


Like our class did prepare us- plans can go another way and the way you thought things were going to go may not take that path. I guess they know what they are talking about.


L is in the NICU here at MGH- a fantastic resource that I wish I never had to learn about. With her MAS, she has to be sedated, because she is so strong she is pulling out her tubes, monitors and not letting the ventilator does it's job. Everyone we talk to down there says she is a fighter, stubborn or feisty. She is the boss! Everyone we talk to that knows us says she already takes after me. But if I'm being honest, I'm not feeling as strong as I need L to be. We need her to fight and be strong. I don't know when I'll have an update- but while the first night we were thinking this was just a prevention thing- it is turning out in reality to be a serious situation. They have to remove the bile from her lungs, as more than swallowing it- it has gotten into her lungs. She is in a great ward- the NIC unit here is not only beautiful- but it the place they bring other infants when they are in trouble- the unit/specialist here are supposed to be fantastic. Everyone has been very nice and I trust that she is getting the best medical attention possible.

It is safe to say we have never been so scared. I know I joked around a lot and "hated the journey" but now isn't supposed to be happening like this. We should have the baby in our room, she should be keeping us up all night, I should be joking around about this part. Truly, it's not fair. We just want to know for certain that everything is going to be perfect- because even with all the tubes, etc she is so beautiful and looks perfect.


Everyone keeps telling us that this is not as uncommon as you would think and I know she is in good hands here- she has her very own nurse 24 hrs a day- and like I said is a fighter. We are loved - and I know and appreciate that- but I need that love shared to for people to have all that good wishing and prayers- if that's what they do- thinking and praying for L and making her better. Whatever people do at times like this- we want and need it.



While this isn't the update you're used to getting- it's our update. This has always been a therapeutic way to express what is going on - and while I didn't intend to have to use it to give medical updates for our beautiful baby girl, like I started with, 'the best laid plans..."

*Names have been changed to protect the innocent. And crazy people.
(c) 2007 all rights reserved. aka don't be a D and swipe any content, photos, etc - sucka. Should you be tempted, let me know so I can be flattered and then give me something write about.