Saturday, August 30, 2008

The boy next door

There is something very attractive in a man who knows how to massage. My neighbors son is in town for the weekend (used to live here when I first moved in) and he stopped by to catch up. One thing led to another and after some dialog and picture looking I got the most wonderful hand and foot massage. If I wasn't so tired and stressed out, I may have gotten turned on or something. As it was, it got me motivated for a nice hot bath and a few bottles of water. And, now I'm headed to bed....yes, alone. Now, I don't want to paint to glamorous of a picture. I was in a trashed house (the weekend sitters daughter came with her today and Max had to show her each and every toy he owns, very few of which got put away), with a sleeping baby on my chest, in wet puke stained and smelly PJ's, with Ice Road Truckers on the TV. Ah, but if he lived closer and did that on a more regular basis, well then, it may be a different story.

Friday, August 29, 2008

The right path

Once I decided to become an single mom by choice, I felt such peace and a strong strong feeling that I was on the path and headed in the direction I was meant to head. The trying to conceive years were tough ones for sure and I've had to make some difficult decisions and choices along the way no doubt. Through it all, and especially lately, I just feel so strongly that I'm on the life journey I'm supposed to be. I have the children I'm supposed to have. Difficult, yes. Stressful, certainly. Busy, you better believe it. Right for me, absolutely.

Ray has been home a month today. His assessment from regional center today. He will qualify for services just because of his prematurity. They will start with early intervention which is working on stiffness and massage type services as I understand it. His apnea monitor started going off with increasing frequency the last few days. I think it was the leads (although that doesn't make sense), but I changed them out and it hasn't gone off since last night. Just in case I headed in for a quick peds visit to get him checked out since we are going into a long weekend and all seemed fine.

Max met his new teachers today and headed off to his last day of gym camp. Didn't see him much today and he was asleep when I got home. We found out that a boy we had met at church and invited to his birthday party (on a whim really because we see them a lot and the boys play so nice in church) and whose house we are going to on Sunday for a BBQ/swim is in his class. The kids seemed to click as have his mom and I a bit. Maybe because he was a premie and the parents know all too well what I'm going through. It was a surprise because the boy is a year older and has already gone to the school last year, but I think it is because we are both signed up for M-F, full days. I don't know them all that well yet, but just get the feeling that we will be friends for a long time as the boys grow. It feels nice.

Nora's doing fine. I've been attempting breast feeding the last few days. Attempt being the operative word. It's been going quite badly. Less badly each day, but bad none the less. The nurse put in a request of a lactation consult for me for next week. She's going to be on antibiotics at least until next week now. Her head u/s showed the brain ventricles even more swollen this week then last although less fluid. If they are still swelling by next week, she may need surgery to put in a stint for awhile. I'm just taking it day by day with her. Sometimes I wonder if she's going to be a special needs child after all this or how much of a special needs child since each child has special needs of some sort. I've moved to the point where I'll be more surprised if not than if so, but who really knows. A strong part of me still hopes that she will be a smart energetic spit fire that keeps her brothers in line. The reality is that she is going to be who she is with strengths and weakness that are hers alone, just like the rest of us. If there is one thing I have learned from being a parent is that each child comes to you as they come and I strongly feel that my job is to enable them to be the best given who they have been born to be.

The last few days, I've just been feeling so much like this whole hard NICU journey was needed to keep me on a path I'm supposed to be on; that N is the child... the daughter... I was supposed to have; Ray is supposed to be N's twin and Max's brother and I'll need to make sure that he gets his due sitting between N and M who I think will suck all the life energy given the chance and have me loving most of it; and Max, my miracle baby, has the siblings he was supposed to have. I can't really explain it, but at least right now, I'm at peace with where I am in life, with my family, and the journey we are on. All the while pondering and trying to make a plan for those pity freeze embryos on ice and being pissed off in a serious way at the claims disability manager in charge of my short term disability, both of which are topics for another day.

Wednesday, August 27, 2008

Week 11



News could be better

The news on Ms. N wasn't horrible today, but it could have been better. The head u/s showed the ventricles have grown. Neurosurgeon is being called back in. The LP went fine and is looking much better. The proteins are higher (which is good), but there are still signs of infection. The eceocartigram showed the debris still there and specialist doesn't think it will be going away any time soon if ever. Neonatologist is going to talk to the immunity docs (another immunity test is going to be done tomorrow) and the disease control specialist about all these tests, then come up with a course of action. I think it will be at least another week of antibotics and recheck everything, but what do I know. I'm just the mom.

First breast feeding attempt today was a total bust. N was just too tired after a morning of procedures. She wouldn't even take the bottle from me, just slept in my arms as she likes to do and I handed her off to the nurse to be the bottle pusher. A bit disappointing, but as I told the nurses I'm in it for the long haul and the timing today was just plain bad. I wished I could have staid later or could go back, but alas, it is not to be and I'm just tired today...enough that a nurse commented. Sigh. I need to make myself go to bed when Max does since I'm up when he is and several other times during the night.

ps. Week 11 pics will be coming, just need to pump real quick and get to my appointment so no time now and I haven't even taken any of Mr. R yet.

Truth

Really, often truth can be stranger than fiction. I find it incredibly ironic and amusing that the NICU staff who control (or have controlled) the whole of my babies lives in their hands for far too long can't and don't trim babies nails because of the liability. They can and do determine how they breath, when they eat, when I can and can not hold them, whether I can breastfeed (or attempt it or not) and for how long, but they don't trim nails...because it is considered cosmetic...even though if not done, they can gash themselves and poke out an eye or something. Okay, that poke out an eye is an exaggeration, but babies sharp nails hurt. So, I dutifully brought in nail trimmers and cut Ms. N's nails yesterday while she slept to the praise and delight of the nurse and doc. Go figure.

What I am doing right now....pumping. What I really, really, really want to be doing....sleeping.

I have never ever been fond of being up in the 4 am hour, especially when it likely means no more sleep for me for the day, but soldering on I am....but, I don't have to like it.

At bedtime last night, I talked to Max about how he could come into my room at any time if he really needed be, but if he waited until the first number on the clock was a 6 I would actually be happy to see him. Yes, I know, nice mommy. I told you, yesterday was filled with some not so nice mommy moments, but hey...it is the truth. I figure the strategy probably won't work, but if it does...oh my, a bit more sleep in these early hours would help some.

And, I forgot to mention in my complain post of yesterday because I ran out of time (and not sure if it actually made any sense or not), that I can't find the damn remote control for the TV in my room. I can't tell you how irritating that is as I have to be up with no hands available for things like browsing a computer so many times during the night. It has to be here some place. I have no proof, but I'm blaming the disappearance on the boy. The older one. He's guilty until proven otherwise.

Tuesday, August 26, 2008

Blah

About a week ago, I felt was might have been ovulation pain in my left ovary area. I was hoping I was wrong. I wasn't. Period started yesterday and I feel like blah. Bloated blah.

I tweaked my back or something. It's been sore for a few days. I woke up today and can barely move my head/turn my neck and have a low grade headache that won't quit. And, I almost forgot to call the chiropractor back to confirm tomorrow after calling today and begging for an appointment.

I yelled at my son (the older one who has been almost as tired and crabby as I) more times than I care today and did battle over things like him not wanting eggs, not even on his plate, then eating them all and asking for 3rds after I refused to take them off telling him he didn't have to eat them, but as a mom I was going to serve him a well balanced meal. Or, the fact that he couldn't decide whether he wanted milk in the yellow or the blue cup, then insisted on both, and when I put it in the blue cup had a huge meltdown and insisted it get poured into the yellow cup...BY HIMSELF.

I got on Noemi after she cleaned up a mess I specifically asked her not to that Max had made because he needed to do that himself. Of course, he didn't want to do that himself. A bit selective this independence thing.

It's not all bad. I got to hold all three of my darlings today and smile at them and whisper sweet nothings. I verbally got the go ahead to attempt to breast feed Ms. N. I missed rounds with the doc yesterday and got turned down. I was there today. I guess it is easier to turn down a nurse on that than the mom herself face to face.

I'm tired. Mr. R who has been asleep peacefully all night while I wasted time doing nothing I should have is awake and wanting me.

I hope I get some more sleep tonight, don't have a back ache tomorrow/feeling better in general, and am the type of mommy I want to be for more of the day rather than just pieces of it.

Monday, August 25, 2008

That's what I get

Just talked to the night nurse who is a perfectly capable woman, but not one of my favorites. She's a bit cold and standoffish IMHO. Plus, you don't get a wealth of information from her when you do call in. Mostly, you just get "she's fine. sleeping right now" as in bye see you later, don't bother me. Probably why she works nights so she doesn't have to deal so much with the families most of the time. She mentioned that Ms. N was going to be paired with THAT baby tomorrow instead of the one she has been thus getting a different day nurse than expected after I mentioned something (don't remember what even though it was just mere minutes ago) about the day nurse. See, that's what I get for talking about them. Sigh. I actually really like the nurse I'm getting as well, but just find it ironic that hours after just saying I was glad N hadn't been paired with can't follow simple hand washing procedures family, we are now paired with them. She also said that N had an explosive tummy rumblings and a big explosive poo right after starting to feed her breast milk last time and that she refused to drink it so she gave her the PE22 formula instead which she gobbled right down. And, she was going to "try it again" like she was going to be attempting to give her poison to "see how she does". Lovely. The nurses impressions carry so much weight with the docs. I've already been questioning why N hasn't been put back on enhanced breast milk full time (which in general she has been tolerating just fine) and instead is getting formula one feeding and enhanced breast milk the next. The explanation I was given was that she had a loose stool over a week ago and they just didn't want to make a change until they saw how things were going. Couldn't just be coincidental, eh? One loose stool in weeks? The heavy duty antibiotics she has been on? No, must be the breast milk which has been cultured to death but turns up good each and every time. Fine (typed with sarcasm). Not something I'm going to go to battle over. Once I get her home, I can feed N any damn thing I want. The thing is I told the nurse I thought I was getting back today that if N was seen by the doc before I got there that I was hoping to try breastfeeding her which I need an order of approval before doing so from the doc. I hope this doesn't delay or hinder an approval for that which it could. Oh well, it will be what it will be. N's scheduled to pick up a new doc for the next two weeks, we'll just see who she gets and how it all plays out. Again, once I get her home, I can do as I please until then I just need to bid my time and work within the establishment.

And, what's up with Mr. R who after having a terrific breast feeding session (thank you very much) with the same breastmilk Ms. N gets, who is wide awake and doesn't seem to care that mommy says it is the middle of the night, not daytime. Hey, not a huge problem cause he's not screaming or anything, just looking around, trying and succeeding in pulling off his oxygen, spitting up on his outfit and blanket requiring an outfit change, and refusing to stay swaddled, and getting a tad miffed when he spits out his paci and I don't quickly put it back in for him. But, it's all good.

Reportedly iffy breast milk has been pumped and I'm going to try to get us both back to sleep post haste. Too bad the Olympics is ending as it was a good middle of the night distraction when one must spend so much time up at odd hours every night.

ETA: A call back reviels that N tolerated the breast milk just fine at the last feed, but it was labeled as fresh (implying it made a difference). Never you mind that she has been getting fresh milk for days since I've been pumping there and the nurse has been mixing it up and I think the "other" milk she didn't tolerate was from the same "bad" batch. Okay, enough bithyness from me. Really, I'm going to try to get R and I back to sleep before Max decides it's "wake up time".

Sunday, August 24, 2008

SCN D 6

We moved from "room E" into special care nursery D, bed 6 over a week ago now. The big move happened because Ms. N was stable and another babe went into isolation for MRSA (only found that out for sure today when said baby was crying and his nurse was tied up with her other baby and our nurse was on break, but the other nurse couldn't go in to help...unless it was a life threatening situation because it was a "MRSA" baby). There were 3 babes, including N in E. There are now 4 on the front side of room D and 2 on the other side where we are under strict orders not to venture. I must say I am less than impressed with the "new" family because they don't follow basic procedures for isolation including hand washing after they have been "in" (holding/touching their baby). I've seen the nurses explain the procedures several times and still they either don't get or ignore such a basic step. As I have mentioned, I was already a germ conscious person prior to kids and a sick isolation baby. I reported the mom the other day after she answered her cell phone (which aren't supposed to be on in the nursery) and then rushed out to take the call. As I told the nurse, she puts us all at risk and no way, no how do I want Ms. N getting something else before getting out of dodge. I also told the other family that I see to be careful and wash everything down because they are moving chairs back and forth. But, I digress.

The babe that has been next to Ms. N for quite awhile and caused the move into room E was born of a 16 year old girl who I have seen a few times mostly in the evening when I was able to stay past shift change. That poor babe is sick and the nurses spent all afternoon getting blood and cultures and x-rays on him. I hope he recovers. I've pondered asking the nurses if they thought he would be adoption or foster eligible because I know a few women who are still trying that would make an excellent mom put figured that would be too presumptuous on so many levels and probably just plain wrong. But, I digress.

Now, the other babe, born of an older couple who almost certainly did fertility treatments always had her own nurse in room E and I got the impression that she was in isolation for another infection. When we moved to room D, she and Ms. N have been sharing a nurse. Her mom confirmed the other day (when I saw her outside the room and had a chance to ask and warn her about bad hygiene family) that her daughter was in isolation for a bacteria infection called VRE or VME or something like that (haven't had a chance to look it up/research it). Now, it kind of pisses me off that they are sharing a nurse. Not so much because of the risk of Ms. N getting infected but because "they" (the hospital establishment) made such a big fricken deal about MRSA babies not sharing nurses for months on end. Now, all of a sudden, it is okay for some odd reason...not that they told me any of this as they try to play it off with statements like "we typically only share nurses with babes in isolation for the same reason". Bull. Now, I haven't been screaming to have N re cultured to get her out of isolation because they are so cautious that she is much safer in my mind in isolation than if she were taken out (as long as certain families don't put her at extra jeprody...thank goodness she isn't sharing a nurse with THAT family). But, anyway....I digress, again.

My twins between the two of them have taken pretty much all the spots on room D between one move or another except for bed 6, which was always baby Jason's spot. Baby Jason and his family have been on my mind a lot ever since that day he was brought in via ambulance a few days after being discharged. I strongly suspected that day and am almost positive at this point that baby Jason didn't ultimately make it. I haven't seen his mom around nor his name on the census list (which I happened to see on day while at the desk waiting on the receptionist for something). I can only imagine the pain and grief that Abby (the mom) endured. Baby J was born in March. She spent months and months and months with him in the NICU only to have him home for a few days to have him die. Like I said, I can only imagine how difficult that would be and hope and pray that I never find out. Ms. N may be occupying special care nursery D bed 6 right now, but it will always be baby J's spot to me. I'd love to know what happened, but can't really ask because HIPPA and privacy dictates that they couldn't tell me anything. And, really, I shouldn't know anything about any of it anyway. If I hadn't happened to be washing up right after J was brought in and overheard a conversation, I would be none the wiser. Or, if I hadn't seen Abby (through the window in room E) standing in the hall crying looking into room A, I would be none the wiser. If I hadn't spent the better part of a month with my two and baby J and his family hanging out in room D and talking to Abby, I would be none the wiser. But, in spite of the privacy and security measures in place, when you spend as much time someplace as I have, you pick up on things, you hear things...sometimes, you wish you hadn't. I keep reminding myself that N isn't baby J. They had different problems, different situations, different history's. Still it makes me a bit more worried about Ms. N not making it (in that irrational, non fact based way), but not as much as it makes me sad for Abby and baby J's family.

In other news, Ms. N is doing fine. Nippling all her meals. No more gavaging for her. She's really solid right now and just hanging out on IV antibiotics for awhile longer. More than one nurse has commented that she is going to be my "drama queen". Ah, I have seen it myself.

Ray was a crying PITA yesterday evening, night, and in the wee hours of the morning. Not much sleep was had. I got about an hour with him in the swing, then finally in desperation did the big no-no (which I would never had the courage to do if he was not on a monitor) and put him on his tummy at 4 am. He slept great for a few hours after that. Of course, Max woke up at 5. Oh, yes, loving life. :) He's been a perfect angel and sleeping next to me right now.

Max has also been a bit of a pill (and not a good one) the last day or two. In his own words, he's tired and crabby. As such, he has had early bed times and gone down without problems or drama and sleeping for almost 12 hours. We did a quick stop by the mall after church today to get him some new shoes for school (at 3, he is a size 11...okay, it was more like 10 or 10 1/2, but I insisted on buying a bit big because he is growing fast my young giant). I stopped in a Target to get a few things and he insisted in carting this hot pink CD player around the store (it was big and heavy) even though I kept telling him that we were not going to buy it, to which he replied that he needed it to listen to his lullaby's because the one he has is broken (so not true, but good try buddy). He also insisted on buying some underwear which he somehow spotted as I was sprinting down the isles. I agreed to this one since he has been quite good on the potty training and hasn't had one accident at gym camp (or anywhere else of that matter). He ended up getting Cars ones instead of the Mickey Mouse and Bob the Builder ones he pondered for far too long (as I was impatiently telling him to make up his mind already...remember...limited sleep last night :) and being drawn to several girls panties, which I thought about letting him get, but just couldn't. Let's just say, in spite of the expense and taking monumental effort to get out the door to the hospital this weekend, it was so nice to just be able to sit there and hold N and not have anything else to do or focus on but that. Ah, good thing I love that kid so much and know that this too shall pass.

Saturday, August 23, 2008

Silver linings

I was sitting holding Ms. N the other day thinking about the "why". Not as in why me, but as the bigger universe why. For example, today, looking back on how and why it took me so long to conceive, I truly feel I am a better person. I learned a lot of life lessons. I'm probably more understanding and compassionate. And, I have way more friends of the life long variety and a strong network that really helped get me through the crisis (for example) of delivering the twins prematurely.

Anyway, as I was sitting there holding my beautiful darling the other day and she was so content in my arms and so happy to be there. I was thinking about how as hard as it is and has been, each child of mine has gotten more individual attention and one on one time from me than would otherwise have been. No way could I or would I just sit and hold N for 3 hours at a time if I were home with the boys and an endless list of things to get done.

As hard as it has been on Max, who has handled things remarkably well, he has actually gotten more time and attention from me than if I was working full time. He has gotten some great quality time with two of his aunts and his favorite cousin. He's done a lot of fun things this summer, including learning how to swim.

Ray doesn't always get much of any of my days, but he gets me evenings and nights and early mornings. Several times I have breast fed lying in bed with him next to me and when finished we have both taken a lovely nap together. That would never have been able to happen if Ms. N were home. He also has gotten more "just mom alone" time than if the situation had been different.

I also know that I have been able to help the quality of life of several of the other NICU moms by sharing about hands free pumping bra's.

I haven't come up with the really big why ah ha why of yet, but I have come up with a few silver lining items and now Max is bothering me and hanging all over me and I got to go.

Wednesday, August 20, 2008

Week 10






Ten weeks in and I feel like a veteran in so many ways. Things are fine around here, just no time for the computer as my pump time has been taking with feeding Little R during the night and Mr. M thinks the computer is "his" and bonds with me while pumping while playing on his computer. He is quite good at getting around actually. Some days/nights are better than others.

Ms. N seems like she is doing fine. All of her tests have come back normal or in range. They are discontinuing another antibiotic and the plan is to leave her on the last one until the 28th. Another blood draw for her tomorrow and another head u/s and lumbar puncture next week. Today's drama with her was her pic/central line clotting up and needing a repair. She has had numerous head IV lines over the last few weeks and one again this morning until they got the central line working again. The nurses are good at many things, but hair cutting/repair after taping down IV lines isn't one of them. My poor girl is sporting a terrible "do" with her bald ole forehead.

Max will look back on this time and wonder about all the naked and half naked pics of himself. I'll just have to set him straight that it was really all his own doing as keeping and getting clothes on him just isn't worth the battle/trouble most days unless we are going out.

Ray is doing fine. Sleeping, eating, pee'ing and sometimes poo'ing, except for that night still in memory where he was up every hour or two torturing me. That wasn't a good night. Because he is home and I can, he was dressed up for picture day.

Monday, August 18, 2008

Seizure?

I was holding Ms. N today when her body started twitching. Her heart rate, respiration, saturation didn't change. She looked calm and serene. She was asleep at the time. I almost didn't say anything, because it didn't seem like a big deal. Kind of like when a child (at least mine) jerk when they relax enough and fall into a deep sleep. It was like a dog (at least mine) do when they are in a deep sleep. But, it was odd so I called the nurse over and he went to go get the doc and they aren't sure what it was, but are calling it a seizure since that is a possible side affect (or would it be symptom) of meningitis and infection in an infant. It lasted about 3 minutes? and the other nurse (or maybe it was the RT) noticed that it was in all 4 limbs and didn't stop if I held her feet together. It was surreal thinking back on it. I was a bit surprised that they did think it was something to be followed (if not concerned about). So, Ms. N had another blood draw, an EEG, and another spinal/lumbar puncture. She had already had another brain u/s first thing this morning. The blood looked fine, the fluid from the spinal was clear and easy to get. The EEG needs to be read by an expert. The head u/s showed swollen ventricles, but no debris. The concern would be that some of the debris is blocking the flow of the fluid, but the doc didn't feel like that was the case at least yet because the LP was so easy to get with good pressure. I didn't realize they were linked and the same fluid. The doc is going to show me a good drawing that illustrates it tomorrow. I'm not sure how I feel about all of this. I think I should be more upset or more worried. It's not as if I don't know the worst case scenarios (or at least I think I do), but I just don't have it in me to get all worked up. She will either have brain damage and/or developmental delays....or, she won't. Only time is going to tell the tale. I continue to have trust and be impressed by the medical care she receives. From the medical perspective, it sounds like they are just going to continue to follow and monitor closely. That may change pending the final results from the LP and EEG. It's not as if I would do anything differently. I will not love her any less regardless and my love for her just continues to grow. I guess I'm just in a zen place where I know that it is all out of my control and all I can really do is love her and be the best mom to her that I can based on her needs, whatever they may be, like I am to my other children, like I was to my dogs. I just feel strongly that everything is going to be fine. I'd be naive to think she will have no long term affects from her ordeal. I'll hope and pray that she doesn't or at least nothing too serious, but the reality is that it all becomes more and more likely. Maybe I'm not understanding things as well as I think I am, but I can really do nothing but to be there for her, love her, and advocate for her if/when needed.

Sunday, August 17, 2008

Happy Birthday to you......

I went out at 5:30 to get a bottle for Ray and found Max sitting on the toilet going potty.

Me: Max, today is your birthday. Happy Birthday!!
Max: Today? (Huge smile) I'm not two anymore.

later, opening presents
Max: This is a great birthday party, momma.

5:30 am
Opening Presents

Noon
Singing the birthday song, again (and again, and again...)

video video

6:15 pm
Sleeping Soundly
The cupcakes and wrapped presents were a huge it. I'm glad I made the extra effort.

Saturday, August 16, 2008

Birthday Eve

A sitter was got. Dinner out was had. Crab legs consumed. Cupcakes baked. Presents wrapped. Pumping is done (for now). Boys sleeping soundly (for now). Daughter reportedly sleeping as well. Sleep for me is much needed while the getting is good. Tomorrow, my sister departs with me wishing for another week of help. But, alas, the summer has flown.

Tomorrow, my first born baby turns 3.

Egads, where does the time go and how did that happen?

As hard as things have been, the price of motherhood is worth it. It is all worth it and more.

I've had three blessed years with my eldest and 9 blessed weeks with the twins. I can't say it has all been good, but it is all worth it.

Tomorrow, my first born baby turns 3.

Thursday, August 14, 2008

It's a good thing

Haven't been a posting fiend because, well, I almost hate to say this, but things are going relatively fine right now and I don't have much to say or get off my chest. So, really, it's all good right now. Ms. N is doing fine. Almost up to full feeds. Still haven't gotten a pic or central line in her after 8 attempts. Not sure what is next for that, but basically she is stable, off all oxygen, loving her paci, and I have been able to hold her off and on depending on where her IV line is and how stable/secure it is. Mr. R had second ped apt. today and he's also doing great. Up 2 more oz from when the home nurse was here and weighed in at 6 lbs 7 oz. Max is doing fine and ready for gym camp next week and preschool to start already. That pic of him the other day was him "smiling" or protesting smiling at his OT graduation/b-day party. City has only been locked in the garage once or twice in recent memory and it happens so often I go to look for him much faster than before. You'd think he'd learn. CC took the pic of him in her hat before she left and it just makes me laugh a bit. My sis is here until Sunday late and has been a bit help with bringing Mr. R home from ped apt so I could go straight to hospital, entertaining Max, making a delish dinner, and watching Mr. R for a few hours tonight after I put Max down so I could sleep. I was so tired I ached. Anyway, just wanted to say that silence is golden and a sign of good times.

Wednesday, August 13, 2008

Tuesday, August 12, 2008

Sleep begets sleep

Under the guise of sleep begets sleep which is something I never really heard or understood until I had children, I've gotten more sleep the last day or two than I can remember and I feel more tired than ever, like I've lost my edge.

Just had a successful breast feeding session with Mr. R who is lying peacefully next to me while I pump. The home nurse came today and he weighed in at 6 lbs 5 oz up from 5 lbs 10 oz last week.

Nora looked and acted really good today. I've been able to hold her again the last day or two. So nice. She is off all oxygen support, almost up to full feedings again via gavage, and probably will restart nippling again soon.

Max and I both missed Aunt TT and CC today, but things went fine. Almost normal like. He went off to "money school" with Mimi while I met with the home nurse then napped before heading to the hospital, but go home in time to swim with him a bit before bed. He's become quite the swimmer this summer thanks to my cousin and he is so proud of his swimming abilities. He's going to get moved up next week to a "real" swim class from the mommy/me one now that he is 3 and basically potty trained.

Figured it out

I think I figured out why the breastfeeding gig with Mr. R isn't working, or at least hasn't been. I think it has to do with the nasal canulas for the oxygen. Tonight, or rather, very early this morning, I woke to a fussy boy a bit earlier than expected and saw that the tape that had been holding the nasal prongs in place had come loose on one side at the prongs were in or about his mouth and he wasn't amused and not calling it a good meal. Because I was tired, lazy, overly full, and would have to move from the bed to put it back on I decided I would attempt to feed him then go deal with it. And, to my surprise, it actually worked for a change. Being the analytic over analyzing kind of gal I am, I had to ponder the situation. The verdict is the nasal prongs. They had them on him in the hospital and I wasn't getting things to work. I asked for a consult and things worked great. I had a second consult and things worked great. I brought him home and things went in the toilet. The difference? They had moved him from the prongs to a nasal catheter (small tube into the nose that is the size they used to gavage food into the babes not yet suckling) for awhile and we switched back to the prongs when he came home. Now, to test my theory a bit to see if it is just a coincidence or there is merit to it.

Monday, August 11, 2008

Parting Gift

My cousin leaves today. Where has the summer gone?

She said she would take Mr. R early to let me get a bit of sleep. She got me up about 12 am (?) because Max had puked all over everything. He has never puked in his life and this is the second time this summer, both after being at the beach/in the sun for quite a bit. I got him bathed while she changed the sheets and I got him back to bed.

As I stumbled back into the living room with Mr. R still asleep planning on taking him, I asked when he was ready to eat and she said soon that she'd do it. I said great just bring him in to me when done/your ready and headed back to sleep.

Just woke up a few minutes ago bursting with the need to pump and went to check on things and yes he is about to eat again. I commented that you never brought him in to me. She said, my parting gift to you. Ah, how sweet it was. Thank you. Thank you dear cousin.

I'll finish pumping. Then, go take over. I'm not sure she planned this on the onset, but it was oh so nice and much needed for me.

I know she has to get home and back to her own life, but I so don't want to see her go. I'm not sure how I would have made it through the summer without her. She just made everything so much nicer and easier. Max and I sure are going to miss her and CC.

Sunday, August 10, 2008

Tid bits

It's been a long day with just a tad, and I mean tad, of sleep so just a few tids bits.

Ms. N seemed like she was doing fine and was much calmer today. She slept most of the time with just periods of stirring and "attitude", but nothing like yesterday. Mostly, I was just her paci holder.

Max slays me even as he can annoy me sometimes. I'll spare you the details (and can't remember most of them anyway as it is a blir), but only slept between 11:00 pm and 11:45 pm; 4 - 5 am; and 6 - 7 am. Max woke up at 5, then Mr. R woke, then I woke my cousin to see if she would deal with the kids so I could at least get another hour or two then locked my bedroom door and crashed. Max told his aunt (my cousin) he wanted to go see the sun rise so she would unlock the back door and let him out and then he came over to my room through the slider from the back yard. I'm going to have to watch that kid. Wants to watch the sun rise? Where does he get this stuff from?

Presumably Mr. R is fine. Reportedly, his is great. Haven't seen him really all day (but, he sure did have most of my night). As only a mom of a newborn can care, he finally had a few poo's after not for a few days. All seems to be well in his world and I think the weekend nanny is going to work fine. Also, she has been a night nurse to twins. If I have too many more nights like last, I'll be using her service for a bit. I can run on much less sleep than most, but even that was too little for me.

Speaking of sleep, my cousin is going to be on duty for a bit so I can crash out. So, over and out.

Saturday, August 09, 2008

Pissed Off

Ms. N was pissed off at the world today during most of my visit. She was fighting the tube and generally an unhappy camper. So hard to be there when you can't hold her or do much of anything to help her except annoy the nurse about how she's not happy about having her hands restricted and can't we free her up a bit while I'm there to watch and make sure she won't do damage like pull out the tube or the IV in her head and stuff like that such that the nurse goes and asks the doc if she could be intubated. The answer was yes, ASAP and it was done while my mom and I were there. She was still pissed, but now you could actually hear her raspy cries. She finally settled for a bit as I had to leave and slept most of the afternoon I'm told. Night nurse said she's been having a few quick fits on and off and you can tell her vocal cords are sore and swollen from the tube. As hard as it is to see her get so worked up and while I know nothing about neurological damage, her movements seemed pretty planned and coordinated to me and that she knows what she wants and is making it perfectly clear that she isn't happy with the current level of service. I guess she is in that grumpy healing enough to feel crappy phase.

Mr. R is doing fine. He hasn't gotten much of my days lately as Ms. N and Big M have been edging in, but we did get to spend the afternoon together just the two of us while everyone else went to a friends house to swim and for dinner.

I've been interviewing weekend nanny's and decided upon one today. She's a friend of Noemi's. They met in the park by my house when Max was a baby. Max knows her well and plays nicely with her middle daughter who is 10. She has worked for twins at least three times that I can remember off the top of my head without going back and looking at her letters of recommendation. And, she and Noemi recently went to a class on CPR and First Aid and got certified (which I didn't even know until Friday). I'm paying $5/hour more than I wanted, but her asking was in line with what everyone else is asking and it became clear I wouldn't get anyone period for what I wanted to pay. She drives, speaks English, and I really got a good feel about her. I'm testing her out tomorrow and giving myself a break and going to a friends birthday party with Max and everyone else except Mr. R. I'm looking forward to it even if it is spending money for a sitter that could be well used elsewhere.

Meningitis

Nora has been officially diagnosed with meningitis.

Here are what I consider the salient points.

Meningitis is an inflammation of the meninges, the membranes that cover the brain and spinal cord. It is usually caused by bacteria or viruses, but it can also be caused by certain medications or illnesses.

Bacterial meningitis is rare, but is usually serious and can be life-threatening if it's not treated right away.

Many different types of bacteria can cause bacterial meningitis. In newborns, the most common causes are Group B streptococcus, Escherichia coli, and Listeria monocytogenes.

Some patients who have had meningitis may require longer follow-up. One of the most common problems resulting from bacterial meningitis is impaired hearing, and kids who've had bacterial meningitis should have a hearing test following their recovery.

The complications of bacterial meningitis can be severe and include neurological problems such as hearing loss, visual impairment, seizures, and learning disabilities. The heart, kidneys, and adrenal glands also may be affected. Although some kids develop long-lasting neurological problems, most who receive prompt diagnosis and treatment recover fully.
Ms. N's second infection is Group Strep B again. An EKG showed a casing (or casting?) from a prior pic line and the thought now is that the bacteria hung out on that from the first round and started growing again after the antibiotics were stopped and out of her system the last time. And, when it came back, it came back strong. She is on three different big hitter IV antibiotics and treatment is expected to be at least 4 - 6 weeks.

In spite of the MRI and several attempts at putting in another pic line (none of which were successful), N looked like she was doing well last night with good stats and blood gas levels so maybe she will come off the respirator today. Since they can't get a pic line in and her small veins are just shot from all the big hitter antibiotics, I think she is going to need to have a central line put in surgically so they may wait until after that to take her off.

Today is another day. My morning breastfeeding attempt with Mr. R wasn't a complete disaster for a change since we got home and he actually latched and suckled for a bit and got into a good rythme which his older brother ruined by needing help on the computer and then insisting that R shouldn't get Momma's Milk it was his and it was okay if R just pretended to drink it. At which point, I sent him off to see if CC and Aunt T were awake. Yes, a tad evil of me, but my cousin did say it was okay since here days here are numbered and it would help get her back on east coast time.

Thursday, August 07, 2008

Not so good news

Some days are just tougher than others. Today was one of those days even if you don't include my fine parenting moment this morning with Max where I told him he needed to stop talking to me and when he didn't I groaned in frustration and put my hand over his mouth. To which he just busted up laughing and said, "momma, you are so funny". How could I not give him a big hug and kiss and snap out of it a bit? Between him up twice and up with Ray and needing to pump, I didn't get a lot of sleep...that's my only defense.

In Precious N news, they were unsuccessful once again in establishing a pick line; the spinal tap (lumbar puncture) showed signs of infection; the head ultrasound showed "debris" in the ventricals; and the immunological doc is recommending "at least" a month of treatment. I know the news isn't good. I'm not sure how bad it is, but know it isn't good and that anytime the brain is involved there is potential for developmental delays and developmental issues. Today is the first time I have heard or we have come across some potential future life issue situation. I can't even tell you the range of emotions hearing how invasive this infection has become in some very important regions of the body.

On the plus side, my short term disability claim extension was approved through the end of the month. The claims manager was a bit bitchy about the whole thing and said they wouldn't be able to keep approving it until the babies were stable and a bunch of other things that I just let roll off me cause today wasn't the day to deal with that. Too many other emotions and things to deal on top of very little sleep.

I'd love it the praying folk would continue to keep Ms. N on their prayer list as well as baby Jason and his family. Baby Jason was the other baby on our side in room D where we hung out for a few weeks. I hadn't seen his mom other than once in passing since we moved out of D. When I was washing up, he was brought in through ER. I guess he was discharged 2 days ago and "crashed" in the ambulance. The faces around were pretty grim so I'm not sure if he made it or not. I'm hoping and praying yes. His mom has been through the wringer with him as well and was already feeling down and weepy for her and the whole situation before I even got the quick update on my precious N today.

Anyway, N is going to be put completely under for an MRI tomorrow morning to get more information and they are going to do a complete immunity work up.

Today was a tough day and I'm feeling sad and discouraged and scared for N. And, keep reminding myself that we don't really know anything yet and I already love her so no matter what the future holds.

Wednesday, August 06, 2008

Week 8

Precious N

Still in the hospital, on the vent. Maybe will be moved to high flow by tomorrow. Have more to day about Ms. N, but too tired to get into details tonight.

Mom and the Boys

Little R's First Bath
Okay, I shouldn't post this probably, but it just does make me laugh so. He only cried for a minute. :) Really. And, mean momma, tired and in a rush just dumping water on him.

See how content he looks . Yes, this is still in the bath.

Snuggled up after the bath. Of course, the first thing I see are all the wrinkles. I thought kids were supposed to keep you young?
All cuddled into the co-sleeper. Hopefully, a nice bath and lots of momma's milk (sadly, from the bottle instead of direct source) and we will get a bit more sleep tonight.

Tuesday, August 05, 2008

Almost 8 weeks

Tomorrow will be the 8 week mark since the twins were born. Maybe the biggest feet is having not eaten in the hospital cafeteria one time? I almost always pack a bag along with my pump supplies and eat while pumping and driving. It's not really the expense or the food itself. It's the time. Always the time and how I can do as much in any alloted time as possible. If I'm at the hospital, I want to be seeing my babies/baby. Period.

Nora was looking better and more alert and pissed off today. The doc didn't take her off the vent and instead she got a new "mustache" to keep the breathing tube in place. Boy was she pissed off about that. I won't be surprised if she dislodges it within the next 24 hours. She tried several times while I was there. That's the good news. The bad news is that I had to deal with her looks. Very expressive my daughters eyes (or maybe I'm just projecting, possibly). And, I'd watch her fight the vent and get all worked up and act like she was gagging or chocking on it all while she had an accusatory look about how awful this was and why I didn't just do something. Oh, so very hard. Had me teary eyed several times, especially after the new mustache. However, it's all worth it. All of it. She knows me and she knows I'm there and calms down and loves my touch. It's not just me that thinks this. The doc today commented on it as she kept trying to turn her head and look at me when the doc examined her today and I was behind her so she couldn't see me (have her "positioned" so she can't move her head herself, which doesn't thrill her either). The OT (occupational therapist) has commented on it several times. The nurses comment on it. Knowing that it does make a difference...to her, to me...no matter how hard it is to work out and to go some days, it is all worth it. We are both ready for her to be off the vent so I can hold her again. Maybe tomorrow.

Ray had his first pediatrician appointment today. It went fine. We only got there about 15 - 20 minutes late. Our normal ped is out on vacation so we saw another, which is fine as they are all good. I like the practice. He gained weight. Things with Ray are going well. I wish the breast feeding was going, but mostly it isn't. Hard to find the time to be patient. He isn't latching well and cries when I get him "in position" so I haven't been pressing it.

I'd give an update on Max, but I haven't really seen him much today. I should go swim with him instead of be on the computer, but I haven't really seen Ray today either as I went to the hospital directly after. Nora got the bulk of my day today. It was her day. We both needed it.

One of the things that struck me today as I approach the 8 week mark is how much a part of the NICU routine I have become. I know all the docs and they know me. I know pretty much all of the nurses and they know me and the babes and our story. Even the more regular respiratory therapists are asking how Ray is doing and feeling bad (not quite looks of pity, but maybe understanding of how hard it is to have Nora take another detour delaying her homecoming) Lots of questions. So glad they really care. Hard not to cry.

On the countdown until my cousin leaves. I try not to think about that. My sister, the one from NJ, is coming on Wed next week until Sunday. And, Max is saying it is "his turn" so I got to go.

Monday, August 04, 2008

Holding Steady

Today was a crazy day. I'll spare all the minutia detail, but I didn't get out the door to go to the hospital until 11 am having not yet eaten for the day that started somewhere in the 3 am hour with a turkey sandwich in hand that my cousin made for me. I need to be at the peds office for Ray's first appointment at 9 am and with morning traffic need to plan on about 40 - 60 minutes to get there. Egads, don't know how I'm going to manage that. Got the portable a/c hooked up a bit ago and it is making a big difference. Of course, I spent hours on something that should have taken about 30 minutes tops and had to call in my electrician neighbor for help. I was much relieved to hear it wasn't just me, the instruction made no sense, and he got me hooked up in no time flat.

Ms. N basically slept the entire time I was visiting and was letting the ventilator do her breathing for her. Made me sad and I kept reassuring myself that she hasn't just given up, but she is trying to recover and saving her energy to do so until the meds can beat the infection back enough that she can perk up. This infection is Group Strep B again. It is not yet known whether it was the same strain as before or not. They want to put in another pic line and I signed a consent, but had several questions about pro's and con's.

The home nurse stopped by to see R today. Of course, I didn't know she was going to and wasn't home at the time. I would have had I checked messages from Sunday, but who has time for all of that. He weighted in at 5 lbs 10 oz and is officially doing well.

I wanted to choke M at one point today, but hugged him instead. Three cheers from my cousin who kept him out of my room for an hour or so this morning so I could get a bit of much needed sleep. And, three more for her basically taking care of R all evening so I could get the a/c situation resolved. Just now getting a chance to pump several hours after I should have.

I'm running high on adrenaline at the moment and not sure how I'm going to wind down enough to snooze when I really need.

Sunday, August 03, 2008

Round 3

My precious, precious N. She has been getting progressively worse again. Septic I think is the word the docs use. She's back on a respirator and antibiotics. I torn between wanting to rush to her side to vigil under the premise she is the sickest of my lot and needs me the most and not going to the hospital today at all to give my time and energy to Max and Ray who will be more aware and appreciate it. For those keeping track at home, this is repeat and rinse times three...round 3, if you will. The multiple calls from the docs didn't alarm me or surprise me as much this time. My heart just knew last night when I saw her where we were headed. I was hoping and praying I was wrong. I so wanted to be wrong. I'm not surprised I wasn't. I've made it clear to both docs (the one on last night and the one on today) that I don't think it is coincidental that she is off antibiotics for about a week before coming down with another infection again. Neither did they. Priority 1 is stabilization. The good news is that she does respond well to the intervention. Then, a autoimmune specialist and work up is in her future. While I still remain hopeful and think this is just something else to overcome before coming home and a happy fulfilling life, I can't help but worry for my darling daughter whose just had such a difficult go of it so far. It's going to be hard not to treat her like a delicate flower as she grows. I just have to believe she is going to pull through this round like she has the other two and that I'll have to worry about favoritism and pampering. Still, I can't help but worry about precious N. Dr. K is great (doc on last night) and was very reasuring that she will ultimately be fine and that I shouldn't worry and if it becomes time to worry, we will worry together, but I'm the mom. It's my job to worry and protect and while I don't really feel like I have failed N on the protecting part, there is only so much I can do to help. Oh, God this is so hard sometimes. Keep giving me the strength to deal with this with grace. And, watch and protect my little girl. I can't believe that she was given to me to be taken away before we have had a chance to live together.

Saturday, August 02, 2008

Life - Edited

Little R is adjusting to home quite well. Thank goodness he sleeps so much or I'd really be in trouble. I need to buy a room a/c. I have him in a co-sleeper in my room, which is the hottest room in the house. It is just too hot in here. He's maintaining his body temp fine, but still I'd feel better being able to swaddle him and bundle him a bit more.

Big M's Party went really well. It was a great group of people. Not too big. Not too small. M was so proud to show off his brother. I'm going to really need to watch him for a bit because he wants to hold, hug, and kiss his brother but doesn't quite get how small he is and that he could inadvertently hurt him.

My precious N. I hope I am wrong, but I think she is sick again. I went to the hospital after the party and she just seemed off. Her heart rate was high, too many brady's, she didn't want to be touched, her body temp was a tad elevated. I told the nurse who told the doc who came by to look at her and ordered a bunch of tests. I'd really love to be wrong on this.

ETA: Per precious N's night nurse, she roused for both the 9 pm and midnight feedings (she didn't for either the 3 pm or 6 pm when I was there) and nippled well at 9 pm. Her labs looked fine, but the doc re-ordered for the morning. They put her back on nasal prongs/oxygen support (which they were doing when I left, but forgot to mention before) and she seems to have calmed and her heart rate is more normal. I'm hoping that's just what the issue was (or my mere presence was stressing her out -- NOT :). And, my cousin continued to watch Little R when I got home so I pumped and slept for a few hours. Very nice and I needed it. Plus, since she was up, CC (who doesn't like to fall asleep by herself) climbed in bed with Big M and when I went to check on him, he had his hand on her shoulder (so darn cute) and it looks like he probably woke, saw her there and went back to sleep. All seems to be well with my 3 at the moment so it's back to bed for me again until Little R's next feeding.

Friday, August 01, 2008

One down, One to go

From Hospital to Home........

It only took 7 weeks, 2 days, and 22 hour and 15 minutes (or there abouts), but who's counting....

HOSPITAL

Nora came first today. Notice no oxygen.
Holding Ray, while working through the discharge list.

HOME

I have never heard Max squeal with joy before he heard Ray was home and saw him in the car. First things first, he just knew he wanted to hold him. He's never washed his hands so quickly and sat down at the ready.