Guess what?

Little R is supposed to come home tomorrow. I'm really excited about it, but trying not to get my hopes up too high, just in case. The prescriptions for him were dropped off at the pharmacy tonight and still need to be picked up. I'm waiting, waiting, waiting, for the home health company to drop off the oxygen and apnea monitor. It is now 8:10 pm and they were supposed to be here between 6 - 8 pm. Ugh. I just want it here so I can go to bed because tomorrow is going to be a whirl win day and tomorrow night, I'm going to have a live baby home to wake me up. And, Saturday we have Big M's birthday party. Seeing Nora the next few days will be bit tricky, but I think I have coverage for the other kids at this point. My cousin is feeling a tad nervous over the home coming, but me .... just pure tired joy. Gosh, I just hope this happens. I'm going to be really bummed out if not for some reason.

Pass or Fail?

Ray had his second car seat test tonight. He had three self resolved alarms. Not sure what that means and if he will be staying or going. While I want to bring him home, I also want him to live to tell the tale. I didn't go through the last 7 weeks for that. I'm in it for the long haul and want a good outcome here. We will see, we will see.

Nora's night nurse reports she did great with her second nippling and is going to ask the doc to increase the order to let her nipple any time she is awake she did so well. Apparently, she had lots of awake time...pretty much the entire time between her 9 pm and midnight feedings. As I told the nurse, good to know it is possible and I have heard rumor to the affect it does happen, but usually when I am there she snuggles into my arm and falls asleep. The nurse said she did hold her for about 30 minutes until she snoozed off. Me thinks my Nora is on the mend and in her home stretch.

As of tonight, Nora is weighing in at 5.4 lbs. I forgot to ask about Ray for tonight, but he was about 5.1 yesterday.

Week 7

Big M, on his motor cycle, with his 'helmet' on, eating a frozen waffle that was still frozen I might add.

Little R, who was swerming and worming when awake, that I had to come back when he was asleep to get a few decent pictures.Fair haired N, snoozing away. She did wake up a bit, but didn't appreciate the flash and ceiling lights necessary to get a good shot. Sigh.

Just dealing with it

Not much going. Just dealing with whatever life has to offer right now. Didn't get much computer time last night when pumping cause 1) I was just so gosh darn tired and 2) I was dealing with a clogged milk duct issue and needed my hands to help work it through. It is much better today.

Dealt with a clogged toilet because of all things a bar of soap fell in it over the weekend and it hasn't been usable. No way can I have the only working toilet be the one in my room.

Following up and was finally able to connect with my short term disability claims manager and hope I will get a verdict one way or another about an extension on my leave. I've already told my boss not to expect me back, he talked to HR, and with CA laws I have until mid to late Oct. with job protection, but not full pay.

I think I may get a return of my period in the next few days. Boy would that suck. I don't even have the babes home yet.

I was delusional the other day when I said Little R was a few grams shy of 5 lbs. He is really only about 4 lbs 14 oz. Nora weighed in today at 5 lbs 1 oz.

Had breast feeding consult today and of course, he wasn't doing his screaming, I can't get food fast enough routine, and it went well. She did show me a better hold and I realized I was letting him get away with a latch that could be slightly bigger. Nora's just cruising and sleeping most of the time. Both kids had second eye exams today and did fine with another follow up in 2 weeks.

Apparently, Ray did pass that 24 hour test in that he doesn't have apnea. However, he will be coming home on oxygen and an apnea monitor. Maybe as early as Thursday or Friday. Depends on how his blood gas levels look and if he passes the car safety test. I'd get into the whole blood gas thing except I only understood the concept of the issue at a high level and don't have the right words to describe the situation other than to say he started new meds that do seem to be helping his saturation rate (although he still had a number of brady's today).

We had a big earthquake today. I was at the hospital holding Little R. It was a good shake, but basically fine.

I just love when I'm at the hospital holding one of the twins and they flutter their eyes and realize that I'm there and holding them and get a big smile. My heart melts and it makes it all worth it.

Max was overtired and a PITA trying to go down for bed. I swear if I heard, 'Momma' associated with something else like I need to tell you something, I'm not tired, I don't want to go to sleep, I have to go potty, I want milk, I don't want water, come hold me momma, momma, momma, momma. I thought I might scream. I can't say I handled it with the epitome of patience, but I didn't loose it either. Good thing I love him so and I know he is under his own kind of pressure and stress right now and overall handling it remarkably well. When cuddling him before bed, I asked him what he thought of the earthquake and if he thought it was fun, exciting, or scary. He said scary and told me it was loud (and made noises like it made to him) and then told me about how it was shaky or topsy turvey or some such words and we talked about earthquakes a bit and how it was like a crack in the dirt.

There has been lots of pretend play on many things including daddy, going to Michigan on his motorcycle to see his 5 children, and other such things. I have the cuttest picture of him from earlier today riding his motorcycle with his helmet. I'll have to offload it and post, but not tonight. Too tired. In spite of being tired and getting very little sleep, I'm still having fun with it and love being a mom. Little things like the babies smiles or an off handed comment or laugh from Max make it all worth it. I was going potty the other day with the door open (because really, who has privacy when using the toilet these days, it is so over rated) and Max walked by and really loud I yelled out "BOO". He thought that was hilarous and kept walking back and forth so I would do it again, then he would come in and say with the cutest voice "you so funny momma, you funny". How can you not love that?

Still miss Shadow and trying to adjust with life without her. Like so many things, it is the little things that I miss the most. I got the nicest card from our vet today that had me in tears. I still have a few friends and neighbors who do not yet know.

Tomorrow is 7 weeks since the twins were born.

36 2/7

According to the nurse tonight, the twins are 36w2d today...or they would have been were I still pregnant. Somehow that snuck up on me and made me a little sad. It's not that they are doing bad, but I just thought they would be doing better right now...like in good enough to go home any day now. And, maybe Little R. Hard to say. Apparently, he failed his car seat study test with too many desaturations and he was on (or maybe that is back on) an oxygen catheter when I went back tonight. In fact, they are both on a bit of respiratory help, again. They have both been on and off and on and off again various oxygen and respiratory help. That doesn't concern or bother me, much, at this point. What has me confused is that to my eye, it doesn't seem to make one whit of difference. They saturate and brady, as near as I can tell, as often regardless, but probably I'm missing something. I'd ask a doc, but I haven't seen a doc bedside in awhile. Or, rather, I haven't seen a doc after they have examined the baby and reviewed the chart and are bringing it back with change of orders. This is a pain on several levels, the least of which is the night nurses are typically not very good about giving "good" information or telling me about any change in orders. It's like pulling teeth and often just so much easier to wait until the next day to get it from the day nurse. For example, when I went in to see Little R and asked how the test when she said she had just fed him and he had failed the test. Okay, but how much did he eat and dsat during the meal? How did he fail the test? Further questioning reviled dsats, but not how low and after further questioning it seemed like he came back up on his own, didn't need blow by's, but was put on nasal canulas and then changed to the nasal catheter. Like I said, I'll wait until tomorrow and see if I can get more information since it will be a weekday and daytime. Really, the reason I went back wasn't for Little R at all and I only spend a few minutes in with him. Poor Ms. N has been getting gypped on the time lately since Little R's feeding schedule was changed /pushed back again so that if I feed him, I barely have any time with Ms. N before shift change. It would be so much nicer if I could just go back and forth between them, but that just isn't going to happen so that's that. Off to finish up pumping and try to catch some zzzz's before Mr. M wakes me up.

Requests

When I asked Ray's nurse today if there had been any changes in orders from yesterday since I didn't really get to talk to the night nurse last night and the doc hadn't been by before I had to leave, she said let's review them together. Good thing we did as one of them was to bring in Ray's car seat for the car seat test. Of course, I still don't have the results back from the 24 hour test (they actually call them "studies" for some odd reason), but one of the nurses said he had clearly failed (I hadn't realized it was a pass/fail type thing for the 24 hour one). Getting mixed messages about how and when he will be ready to go home. However, car seat is wiped down and ready to take with me tomorrow. Ray is 3 g shy of 5 lbs. He is eating via nipple 50 - 70 ml every 4 hours.

Nora's nurse asked for a bouncy to be brought in. She is 2 g shy of 5 lbs. She and I are both loving skin to skin cuddle care. And, she was more awake and alert today (presumably why they asked for the bouncy). She is being increased from 40 to 43 ml via gavage every 3 hours. She is not taking any meals via nipple. They were trying for once a day, but it was pointless really. The OT lady and I talked the other day and both agreed it was just too much for her so OT lady talked to doc. End result is that we are giving her the weekend as a break, then OT lady will stop by at Nora's eating time to see if she is awake and if so give it a go and see how she does.

Needless to say, with the request for a bouncy and car seat, I had to venture into my garage. It was a scary, hot ordeal. But, I found 3 infant car seats, 5 infant car seat bases, 2 bouncy chairs, the cover to the co-sleeper, and a few other things that I will need as soon as the babies come home or shortly after. It almost makes the whole thing seem real (like I may actually have babies in my house soon and not spend every day for the rest of my life going to, from or at the hospital) and makes me wonder what else, exactly, is in my garage that may be useful now rather than later. I think I need to make some time to sort, organize, and rearrange things (even more than I attempted to do tonight) so that I know what is there and where to find it.

Ray's nurse put in a request for a lactation consult for me for next week. I've been breastfeeding him for one meal (with him eating every 4 hours, the rule that doesn't let me go back and forth between the babes with Nora in isolation, and needing to also be home for Max I am usually only able to be at the hospital for one feeding) and it has gone great sometimes and been a disaster others. But, I think I know what the problem is thanks to an off hand comment from one of the docs the other day asking if I let down too fast and he choked on the milk. I knew he hadn't choked, he typically saturates much better and hasn't had any brady's while breastfeeding, but I didn't know how to respond other than I didn't know what my let down was and then started to pay attention. What I realized is that it is the opposite, my let down is typically very slow. When I pump, often milk doesn't come out until after the 2 minute let down phase is over. Even after breastfeeding Ray, it is often a full minute before it starts to come out. The times that it has worked well, I think it has been a very long time since I last pumped and I was very overdue/full and the milk came down faster. The times it hasn't worked well, Ray is hungry, the milk isn't right there and today he was flat out pissed off over it (as opposed to just disgruntled a few days ago). He is so used to the milk coming out fast and ready with those bottle nipples. The nurse today took a small syringe with my milk and put it in his mouth by my nipple so he got enough milk to keep sucking until my milk came down and from there it was good to go. Milk production is still good. Even after feeing Ray today I pumped about 150 ml out.

As to the comment requesting to talk about how I've dealt with the daddy question, we haven't really gotten deep into it. There is a picture of me, him 1 day old in the hospital, with my OB that delivered him, and my OB's husband who was my fertility doc and we have talked about how Dr. N helped momma get pregnant with him and how Dr. P delivered him. One day we were at a friends house and Max started calling S daddy like his friends did and one of the friends said, he's not YOUR daddy, he's mine. My friend and I were in the other room when this happened and we just kind of looked at each other and let it go for them to work out. Shortly after that, Max started saying I was his mommy and his daddy and I agreed. I have on occasion, but realized today not in awhile go through who is in our family and talk about how all families are different. For example, we have a momma, Max, Ray and Nora in our family. There is Aunt T, Uncle J, and CC in CC's family, etc. So, I did that today and then asked him why he was asking about a daddy and he said because he wanted to see him. I said, oh, well, we don't have a daddy in our family. And, then went with what I has worked well for others that have gone before on this and explained that momma didn't get married, but a nice man donated a seed to help momma get pregnant with him, but because momma wasn't married, we didn't have a daddy in our family. To which he replied that it was his turn on the computer and he wanted to play a game. And, that was that for now. I'm sure he's just thinking about all of that and it will come up again, but I made a mental note to talk about it more often and more openly with him and to point out more often about different kinds of families.

Empty

The house seems so empty and bare without Shadow here to share it. There was no dog here this morning to make sure got walked. No medicine to dispense out. No dog to eat the left overs so they didn't go to waste. Plus, the rugs and runners that have been down on the floor for years to help Shadow walk since she would slip on the tile have mostly have been picked up. One of her dog beds as old as she was almost got trashed. It's just so sad and empty.

Conversations

In my grief yesterday, I was still able to look at my blessing and find some small humor. Conversations from yesterday....

Me: Max, are you going to eat those peaches?
Max: No, maybe later. You can put them in the fridge for me.

Me: Good night Max. I love you.
Max: What are you going to do?
Me: I need to go pump.
Max: Good, go pump momma, go pump.
Me: (thinking, hmmm, why is he so happy about that, oh, he will wait until I get started then get out of bed knowing I'll have a hard time getting him back down (as has happened a few times lately) and man can this kid think ahead). No, first I'm going to fold these clothes and do a few other things until I'm sure your asleep so you don't get up while I'm pumping.
Max: (silence, he was asleep 5 - 10 minutes later)

Today is another day. And, I'm pumping and Max is asking where his daddy is. I guess I need to go and discuss this.

RIP Shadow, RIP

Shadow died today. I'm sad and I miss her. She was 17, most of it with me, and had a good life. It was just her time, but it is still so hard. She had a large mass, probably cancer that had metastasized, in her stomach, liver, or spleen. By this morning, she couldn't walk or keep water down and defecated on the patio overnight trying to get to the grass. I wasn't even with her at the end. Logistically and emotionally, I just couldn't do it. Okay, I could have if I really had to, but my cousin really has been my angel this summer and made it easier for me (and much harder for her). I said my goodbyes, hoping I was wrong again this time and that she would rebound again. She was such a great dog. Irreplaceable really. My cousin, who did the dirty work for me, wondered at the timing as my Lucky died within 6 months of bringing Max home and now Shadow 6 weeks after the twins were born. My house is no dog free and I don't like it, not at all. While I may long and yearn for another, the right dog will find our family down the road when the timing is right.

Up until the end, Shadow still got out for walks twice a day most day. It wasn't always me doing it, but I always made sure she was not just shoved in a corner. It was so hard on her when I was in the hospital. Now I have better insight as to why. I think she knew then that her time was limited where as I have been so pre-occupied and tired I didn't really pick up the signs until the last day or two. I could have regrets about how I should have given her more time or attention, but really I'm only one person and stretched to the limit right now. Some days more so than others. Today is one of those days.



Shadow, I hope you knew how much I loved you. Enough to let you go when the time was right. May you be reunited with our Lucky and your Brandy at the rainbow bridge.

One of each?

I have a post in me about how I was germ phobic before I had a babe in isolation for MRSA and how one of the reasons I hate traveling and staying in hotels that always seem to have at least one stray pubic hair left in the bathroom and you never really know if they wash the blankets and bed spreads along with the sheets and I can't even think about the carpets...ick, ick, ick...I'd rather just stay home thanks. Don't even get me started about the bacteria that can grow in sippy cups that are sealed with the lid after being washed. It drives me crazy and I am often reminding Noemi and asking others not to do that. Anyway, cuddle care with Nora is worth it, but I'm not sure if I am paranoid or properly cautious. Yesterdays clothes went straight into the clothes basket. However, today when I did laundry I realized that the bacteria could have gotten on the basket so today then went into a plastic bag with Nora's dirties until they can be laundered. And, yes, the basket did get sanitized, as well as around the top of the washer, and Max's hands and arms as he was "helping me" with laundry. Ack! I could drive myself crazy with this, I really could. But, again, all worth it and I think much needed for Princess N. I got a bit teary eyed today while holding her. It is so beautiful and primitive in a way (if you can forget for one minute that you are in a NICU half dressed and only partially shielded by a privacy curtain).

And, yes, Nora's hair seems to have a tad of red in it. It is starting to look like I may end up with blond Max, brown/dark haired Ray, and a red headed Nora? I guess time will tell the tale like most things. I'd love so much for both my babies to be home, but I know in my heart of hearts they are not ready. They said probably next week for Ray, but I'll be a bit surprised truth be told. Again, we will see and time will tell. I'm weary. The past 6 weeks is catching up. On one hand, it is good because things have stabilized a bit that I'm not running so much on stress and adrenalin. I'll take that over some set back or problem taking us off the current path.

Shadow is sick and I'm not sure she is going to make it this time.

Week 6

Precious N

Sleeping R

Been up since 3 am to pump, then Max woke up so just a few quick highlights.

Had 6 week post partum today. Dr. P was back. Had nice chat. Down 40 lbs in 6 weeks.

Got a lot of time at the hospital today. Was able to see and talk to doc about both kids. Ray probably coming home next week. Running a 24 hour monitoring test tomorrow and will come up with plan to get him home. Have breast fed Ray 3 days in a row. Day's 1 and 3 went well. Day 2 was a disaster, but I think I know why, but too tired to get into details. Got to cuddle care Nora skin to skin today with orders that I'm allowed to do so with precautions. It was great for us both. Nora had appt. with OT about feeding today. She didn't wake up so eval wasn't done, but while OT was holding her, I started talking to her and she turned right to where I was sitting openned her eyes and smiled. It was so beautiful to know that she recognized me and my voice that I almost cried.

Came home today with Shadow sick with puke everywhere. Came home yesterday after a busy non stop day to Max puking all over me, him, the kitchen rug/floor. Think Shadow has vertigo again and she is doing better since I forced an anti nausea pill down her throat. Think Max had mild heat stroke/was in the sun too much yesterday. He was fine after he puked and all day today.

Shameless

Really, I can be quite shameless at times. Take today for instance. The doc that had Ray walked in room D looking for another patient. I called out to him, made big gestures to call him over, and asked if he was looking for Ray and I to tell me that it was fine for me to start breastfeeding him starting with his next meal. To which he replied, that no, he was looking for a baby getting ready to go home, but that he thought that would be fine. I called out to Ray's nurse (who was laughing at me), "you heard that, right?" to which she agreed. So, I did breastfeed Ray and it went great. He had none of the problems he has with the bottle. By my guess he drank about 35 - 40 ml as I pumped after and got 49 ml from the breast I fed him from and 85 ml from the other. He's been drinking about 40 of the 45 offered to him, but starts dsating big time and having slow heart rates towards the end when being pushed the last little bit. While he can't regulate himself well with the nipples they use, he had no problem from the breast. He would still dsat into the mid 80's, but come right back up with no big dips at all. He still would suck, suck, suck, breathe, breathe, breath instead of the suck, swallow, breathe.

Room E was much more pleasant with today's nurse who didn't even hold it against me that she had Nora the first day there were born in room A and I didn't remember her. She said, yeah, they never do, I don't take it personal. When I asked her if she liked working in this room, she said, no way, I'm much too social for that. And, she said the first thing she asked was how the other baby is doing and if he could go back soon. Sadly, he had a bad night last night, but she felt if he was stable, he may be transfered back in a few days. One can only hope. I was telling her the three ways I came up with for getting the babes back together again (other than them both getting sent home) and she agreed. One, is the other kid getting transfered out. Two, is getting Nora declassified from MRSA colonization and since the nurse today said they aren't going to test her until she is off vanco (the antibiotic she is still on) and she has 11 more days on that ...it isn't going to be soon. Three is to get another ECMO patient who would have his/her own nurse since they wouldn't be able to share with the MRSA kids and then convince a charge nurse they should move Ray in to share. LOL. Hey, something to pass the time, but oh so bad to wish a babe had to be in that room.

Anyway, today was a relatively good day. Went to preschool with Max which was my last time with him for this summer program. Talked to my boss for a bit on the way into the NICU and got to try to feed both of my babes. Granted, breastfeeding Ray was much more fulfilling for me than attempting to get Nora, who basically has no interest at the present moment in "nippling". However, once I put the bottle away, Nora was nice and awake and gave me lovely smiles and we had a lot of eye communication and I whispered sweet nothings to her and kept my lecturing to a minimum. I'm going to bed happy tonight.

Fine, Fine, Fine

I'm fine. Ray is fine. Nora is fine. Max is fine.

I saw Max's ped, and soon to be Ray and Nora's ped this morning on the way into the hospital. He's such a nice guy and I really like him. Told him about the babes and that he would be seeing more of us very soon. He was thrilled, loved the names, and agreed that Nora sounds "typical" where as Ray has been a super star NICU baby.

I remembered to both brush my teeth and put on earings today before leaving the house.

I'm not really fond of Room E, Nora's new room. It is small. There is only one other baby and one nurse. It's too quiet and too hot. And, it looks like she is probably in that room until she goes home. Drat! Drat! And, double drat! Her nurse today is one we have had before. She's not one that I have really clicked with, but not one that annoys me either. I asked her if the other baby was going to get transfered back to the hospital from which he came and she got a bit snippy with me saying she couldn't discuss other babies with me. This is true technically, but really quiet laughable since there is so much open talk bedside among nurses, docs to nurses, docs to parents, etc. that really everybody knows everybody elses business to a certain extent. I thought it wise not to mention this and said I wasn't really interested or asking about the other baby per se, but trying to find out the odds of another transfer to another room and asked her hypothetically speaking or typically, if a baby is transferred in do they get transfered back. I guess not usually because transport is expensive and babies that young are expected to develop other problems most other hospitals aren't able to handle. :( I also started asking about re culturing Nora for MRSA to see if she is still colonized since a negative on that is the only other way we will get a move out. She said they wouldn't retest if Nora was on antibotics. I'm not sure if she didn't understand that the antibotics Nora is on is for something different or if antibotics in general make a difference. Since I haven't been able to stay late, I've missed doc rounds recently. I'm hoping I catch them tomorrow, but with the two babies being split once again it makes it harder because they could come see Nora when I'm in with Ray and vice versa.

There have been some security breaches in regards to the blog lately, innocent stuff, but most of my IRL family and friends know nothing about this blog and I'd like to keep it that way. I have not told them, nor do I intend to for awhile, if ever some big ticket items that I have and do discuss here and don't want any more of them to get nosy and start looking around. As such, I'm probably going to start referring to the kids by pseudonyms and then go back and edit any post and/or comment that comes up with a search with their names on it. Just wanted to give a warning that the names may change online, but the characters themselves remain the same.

I have the house to myself (other than the sleeping Max, the cat, and the dog of course :) tonight for the first time in awhile and it is very nice I have to say. I was able to indulge in watching several episodes of the new season of ice road truckers while finishing off the shrimp cocktail from the shower that never got put out, and writing thank you's in addition to washing the fabric on Max's car seat, doing a load of towels, and loading the dishwasher. Why yes, I do lead such a riviting and fascinating life as you can tell. Off to label and freeze some momma's milk and clean my pump supplies before turning in (hopefully) a bit early tonight.

AM :( PM :)

The day started out rocky with me up at 4 something, Max up at 5 something, and keeping on schedule to get out the door so I could be at the hospital by 8 am when visiting hours open after shift change. The plan was to spend from 8 - 10 with Ray and give him his 9 am bottle and Nora from 10 - 12 giving her a bottle at 11:30. Then, to make a mad dash home and pump before too many people showed up for the baby shower which was this afternoon. I verified that I could walk into room E to talk to Nora's nurse without screwing up my visit to Ray. She told me I would not be able to feed Nora at 11:30 because the other baby was having surgery in that room at the time and I couldn't be in there. To which I burst into tears and told her that she just told me that I couldn't see my baby that day because that was the only time I could today. I'm starting to cry over it all over again just thinking about it. So, I only got about 30 minutes with Nora today until I was booted out. I thought about going tonight from about 8 pm - midnight, but I'm wiped out and just too tired. As tired as I am, I'd probably just go and cry the whole visit all over again making myself even more tired. However, I was able to piece together a bit more coverage for Max tomorrow so I will be able to be at the hospital about double the time I thought I would. I can't wait until these babies are home with me. I really can't.

The baby shower was fab today and I just have the best friends ever. I thought I was going to have to fake it until I make it or as I told the NICU nurses that I had only x hours to get a smile on my face, alas, there was no need. I was able to tell each and every person about my horrible morning with tears in my eyes and then move on to have a great time. I got so many things that I really need in spite of my crazy registry done one night when I was very tired where I couldn't make up my mind about a few things and only having a vague idea of a few things I needed and put who knows what out there. Since I never got back to look at it or edit it, who knows what I actually registered. But, I got a bunch of cool useful things that I really did need. For some odd reason, my camera stopped working during the shower and pics were taken on other cameras that I don't have a cable size to off load from so I only had a few. Here is one with me and the cake.

Highs and Lows

It's a given that with babes this young in the NICU that there are going to be highs and lows. Some days better than others. Some days there are so many of each that your head is swimming and you are happy and sad at the same time or from one minute or hour to the next.

The babies were baptized today. I almost cried (and so did my cousin) from the power (not quite the right word) of the quick impromptu service with no frills, no dress up, just bare bones quick and dirty service. After the scare with Nora last week, I decided I didn't really want to wait. Plus, with both my cousin and her husband here who are now the God parents to all of my children it made sense. When I left the house this morning, I didn't know today would be the day and just wanted to get it scheduled. It was hectic getting it organized while at the hospital when I'm not supposed to use the cell while in the room with the babies. But, it got done and I'm glad. One less thing to worry about. CC and Max looked in from a window. The window was from a special room and Max thought a doctor was coming for him and cried most of the time. Oh well. They had already left the house and were on the freeway before I remembered to call and remind them to grab the camera. Luckily from some odd (maybe divine?) reason I put in the bag this morning a disposable camera that a friend brought to the birth (or bought in the gift store while at the hospital) thinking I would leave it there to take random shots. So, we have pictures, but only a few and they will need to be developed. Due to logisits, we don't have pics of the ceromony. Just a few after with the priest.

My breast milk was given the free and clear for consumption again. I'm so happy about that on so many levels. I can't even tell you how much I have frozen that I would have dumped if I had to, but it would have pained me. Plus, it feels like there is so little I can do for these babies of mine right now other than providing them my milk and I'm so glad that it didn't harm either of them in any way.

Nora is once again oxygen free. She's doing great, but still tired and trying to recover from her recent illness. We are only going to nipple her once a day (hopefully when I am there) to see how she does until she regains her strength. She is very stable (few destats, no apnea or brady's to speak), just tuckered.

Ray had fewer brady's today, but lots of self resolved dsats. He's holding his own on the full bottle feeding, but also very tired and tuckered out.

The hospital got another baby with MRSA (transfered from another hospital) that needs to be in the ECMO room so Nora was moved to there (right before the baptism) so that a shared nurse could be used. We have now been in every single NICU nursery in the hospital. Not only does this mean Ray and Nora are in separate rooms, but that once again I can't go back and forth between them. I almost cried when I heard this. The nurse was insisting I would be able to go back and forth, but I knew better and I was right. I understand the logic and rational behind it all, just don't personally like it much. I'm just hoping Ray is home soon so it becomes a non-issue. It's almost like a double whammy right now because I'm going to have limited time at the hospital for the next 5 days (baby shower tomorrow and cousin and husband to Vegas for a long weekend to celebrate 20 years together).

I'm sure there is more, but I'm tired and those are the biggies off the top of my head which felt like it was spinning most of the day.

Over reacting or vigiliant?

Everyone except me seemed unfazed by this little skin issue. I showed the nurse, who said great, she'd get the doc if I wanted her too, but he would probably be back through since he still had the chart and that I wasn't running a fever and followed hospital procedures and Nora was on nipple feeding and it was time to eat and did I want to feed her. Ah, yeah...

The NICU doc said, hmm, interesting when I showed it to him, that it wouldn't hurt to keep my appointment, and keep it covered and that Ray was getting ready to go home soon. When I asked what soon meant, he said maybe tomorrow, let him look at the chart. The nanny is going on vacation for 10 days as of today and my cousin is going to Vegas for 4 days as of Sunday, I'll just have to laugh at the timing if that's what happens is what I was thinking along with I better go find those car seats in the garage and get some diapers. After looking at the chart, he said not tomorrow, a bit longer. Still a few more apnea's than he wanted to see, but they correspond with when they took him off caffeine and are border line not really requiring treatment. He also ordered a blood test just to rule out infection just in case since Nora's had her share.

I went to my internist who took a look at it. He asked if it had oozed at all, to which I replied no. He asked how long it had been there and I said since this morning. He said not much to culture, but he did it anyway and prescribed an antibacterial cream better than Neosporin, which turned out to be available over the counter. He said, keep it covered. I'm supposed to call on Tuesday to get the results if he doesn't call me before then.

Seeing the therapist about how stressful this all is more of just one more thing to do in a given week. I can't say that I've gotten much out of it other than someone to agree with me that this is all stressful. It will be worth it if I get my work leave extended due to stress, but the disability claims manager is starting to piss me off because she isn't retuning phone calls. Probably, the biggest take away, truth be told, of going is validation that I am handling this all well and have good coping techniques.

The biggest bummer of the day is that I only was able to see the babes for a short time when today is normally my long day. Time will tell whether I over reacted or not, but really...at this point, I'd rather be safe than sorry. I even took some time to go to the CDC web page and bring it up in Spanish for Noemi who is leaving for Guatemala tonight, just in case she developed some weird skin thing. I've seen what an infection can do to one so young with Nora and it was scary, I don't want a repeat and I don't want anyone else to have to go through it. I can live with an over reaction. I'd have a harder time living with either Ray or someone else getting sick.

I'd say I'm tired now, but I started the day tired so I guess I can only say that I'm more tired. I wonder what tomorrow will bring. Tired or not, I'm feeling more up for it tonight that I was this morning.

oh, and ps. The latest culture on my breast milk is still pending.

The next damn thing....

I woke up this morning (about 4 am) thinking about how the burn on my arm was really hurting me, except I didn't burn my arm. My quick investigation shows a skin infection an inch or two under my elbow on the forearm. Doesn't take a rocket scientist to presume it is MRSA. I quickly washed it with soap and water, alcohol gel, and an alcohol swab, and put a bandage on it. I've washed or am washing all my bedding and Max's bedding in hot water. I talked to Nora's nurse and she's going to leave a message for the medical director to call me on my cell. I now have an appointment with my primary doc/internist, but not until 3 which logistically really screws up my day. I have an appointment with that therapist at 10 to talk about how stressful this all is since I'm still pursuing trying to go out on stress leave after my official maternity leave is up in a few weeks although the disability claims manager isn't returning my calls or the therapist calls which is just one more stress. I'm tired and worried and stressed now that MRSA is in the home and I'm the one who brought it here (allegedly). I vow not to start crying, because really it's pointless and I'm not sure I will stop. Damn! Damn! Damn! I'd really like one day without all this or at least a reduction in the complications. If this is the new normal, I'm not impressed. Nothing to do but solder on, but I'm not liking it much.

Week 5

Ms. Nora sleeping soundly in her new big girl crib. I've kicked myself a few times for only bringing a camera once a week. I missed getting a shot of her from last Saturday off oxygen and only with a small feeding tube in her nose. Still, I think her youthful beauty and peace shines through. :)Some one on one cuddle time with mommy who is back to wearing a mask since she's on 3 litres of pressure (but 21%, room air oxygen). Notice her big, big girl crib in the background. She's moving up in the world. No little bassinet for her.
Ray, taken by surprise when his dear sweet mommy plucked his lunch right out of his mouth for a photo op causing him to spit out his meal in surprise.
Ray after a quick wipe with the burp cloth already trying to figure out what this camera business is about, just like his big brother who was always so fascinated with the camera itself that it was almost impossible to get him to smile.
Mommy holding Ray after his meal. They have him nippling each and every meal eight times a day right now which has him tuckered out. According to the nurses, they are pushing him to feed and grow so he can be sent home. Notice his tiny little bassinet in the background. Poor Ray has to share a nurse and gets very little space while his sister gets her personal nurse and a mansion by comparison.
Nora's nurse pulled up the lab results which seemed to indicated that my latest milk culture was negative for group B strep and it was final, but the docs hadn't seen the babes yet by the time I had to leave. And, I didn't get a chance to catch them before putting Max to bed and we are in the middle of no call or visit shift change at the hospital so I don't know if there were any changes in orders yet and if the docs agree the my milk is free and clear to be used. I sure hope so. Pumping is bad enough as it is. Hard to get too motivated not knowing if it all is going to need to be tossed and time spent completely wasted (other than to keep supply up).

Ray's nurse seemed to think 2 weeks go home for Ray was probably realistic. She said maybe sooner. I'm hoping he stays healthy and strong and continues to lead the charmed life so that can happen. It will make my life more complicated from a logistical stand point. Not only because of having one in the hospital and one at home, but also the added first peds appointments that come with a babe going home since my peds office is no where near my home and halfway between home and the hospital.

Another day another disappointment

Nora continues to improve. If she continues to maintain her body temperature (which has been turned off since about mid day) she will move back into a bassinet from the warmer. She was alert and awake several times while I was there and I got to hold her again until the eye doc came and it was her turn. Both Ray and Nora came back negative for ROP (retinopathy of prematurity) which is good, very good. The drama and disappointment comes from the fact that Nora's infection was diagnosed and is group strep B. I tested negative for those at delivery in both a blood and urine culture, but I tested positive for this prior to my CVS. They are testing my breast milk for it now and until then, both Ray and Nora are on formula. Ray for the first time. That makes me sad. And, of course, rounds were done early today and the order to d/c (discontinue, yep, picking up the lingo) breast milk came 15 minutes prior to my first time to breast feed. While sad, I didn't even cry. I'm just getting used to one thing after another and I'm sure that isn't a good thing. Best case scenario, the results are in a few days from now and my breast milk is cleared for use. I'm not quite sure what worst case scenario is at this point, but I think if it comes back positive I'll have to be treated for the infection, dump all the milk I have stored, wait until it has been cleared, and go from there starting over. One guess for the outcome I'm hoping. I just don't understand how it could be positive and Ray not be affected by it as well, but what do I know. Ray has been charmed so far with very few issues from prematurity and Nora continues to bear the brunt of it. The doc switched Nora's antibiotics to penicillin and another 'illin one. I joked with the nurse to be on the look out for a penicillin allergy because with her luck, she'll have one just to add another complication to the mix.

Tracking back a few days, one of the nurses told me that on Sunday morning when Nora got really sick fast from the infection and pneumonia that Ray was very distressed until they got her stabilized. I've often heard of unique twin connections like that and while I was glad I wasn't actually there to see Nora's quick fall I do find it interesting that at lease one person noted it enough to mention it. I actually have seen some of that myself when I've been in a position to see both of them and their monitors at the same time.

Both babies were around 4 lbs 1 oz today.

While disappointed about the breast feeding thing, I'm seeing it as a delay. I'm just happy that both are doing so well at this point. Would rather be safe than sorry...need no more drama or infections or anything of the like. I'll be so happy if it comes back as negative and will deal with it, just like I have everything else, if it doesn't.

On the mend

Nora looked so much better when I visited this afternoon. I even got to hold her for a few minutes while her nurse cleaned out and changed her bedding. She's off the respirator (bypassing the CPAP) and on high flow cannula for oxygen. She was alert and awake a few times including when I was holding her. Much, much better. Her x-rays of her stomach and lungs were good. There is an infection growing from the cultures taken, but they won't know what it is for a few days. However, she is responding to the antibiotics and looking and acting so much better. Sadly and probably not too surprisingly, the road to recovery is slower than the fall to illness. My word, did that girl of mine give me a scare last night. I will never ever forget how blue she was and them trying to bring her back up until they asked me to leave the room.

Ray continues to do well. He is off oxygen and caffene for a few days now. He's "nippling" and taking his entire bottle two out of every three feeds. I get to try to breastfeed him tomorrow.

Max is hanging in there and taking it all in stride. He'll ask me what's the matter when he sees me crying, but fine with my explanation that Nora is sick and that I'm worried about her and that sometimes you just need to cry a little.

I'm tired. Didn't get home from the hospital until 4 am, then had to pump and was up at 6 or 6:30. I have more I could say, but too tired to put it into words. Thanks everyone for the kind thoughts and prayers. It looks like we are weathering this latest crisis. I hope there are not many more of them. I find them harder to deal with not easier.

There and back

To the hospital, and hell. If I ever see another human being, let alone one of my children as blue as Nora was at one point when I was there, it will be far, far, far to soon. I've never prayed as hard as I prayed tonight as 6 people (two respiratory therapists, the three nurses in room D, and the charge nurse) try to bring my baby back up and keep her alive. Apparently, she pulled the respirator tube out. Scary stuff that. I can't even describe how scary that was. Basically, I got no knew information from going from a medical stand point, but I did get to see my precious babies. I'm sure that both of them knew I was there. Ray nestled in for a nice rest the first time I held him. Then, fluttered his eyes at me and gave me a big smile when I was giving him his bottle and he saw that it was me. Nora also fluttered her eyes at me, but more a pleading look letting me know how miserable and sick she was and how she does not want that tube down her and into her lungs no matter how much she needs it. Not being able to "fix it" for her was so darn hard. The docs I talked to today both assured me that she will be fine. The nurses tonight were not so sure if I read things correctly. I'll be hoping and praying that the docs are right and she does rebound from this. There is no doubt in my mind at this moment that she needs the assistance breathing to live and she could not be doing it on her own. After her little melt down, they did an chest x-ray and both the RT and charge nurse said that it looked fine/perfect. There is so much of this I just don't understand from a medical and spiritual perspective. For the praying among you, please pray for my little girl. She can use all the medical and prayer help she can get right now. She's really sick. Much sicker than last time and I thought she was pretty sick then. Please God, please....let my little girl rebound from this no worse for the experience.

The great escape day

This mornings setback with Nora has left me really down. Defeated, down, lethargic, depressed are all words that come to mind. Sad, yes, sad is in there too. It just all seems too much sometimes. I can't say I did much of anything but try to escape in a bit of TV and a novel. I talked to another doc today who didn't think it was pneumonia but some sort of blood infection. All sort of cultures were sent off, but it will take at least 24 - 48 hours to get results back. She felt it was bacterial, not viral. And, I really don't think I have a cold anyway at this point. Run down, deflated, bone tired...yes...but more likely situational rather than medical. Stuffy nose and cough...tears and a drippy nose will do that, at least for me. I thought about going to the hospital, but just couldn't muster the energy. I could barely muster it to pump. Have I mentioned how much I hate pumping? I'm so tired of it most of the time it's all I can do to force myself to do it. The only saving grace is that my yield is usually good so it's worth the effort. Tomorrow will be time enough to face reality, but I just couldn't do it today. I couldn't go to the hospital and face Nora sick. I just knew I would just sit there and cry and cry and worry and worry. Almost always during this whole time, I've had a deep belief that it will all work out in the end and that I'll take two healthy babies home sometime in August. Today, doubt crept in. What if I'm wrong? What if all is not ultimately okay? After all, I was so sure that I would at least make it to 34 weeks before delivering and we all know how that worked out. What if my precious baby girl doesn't make it? Instead of facing my current reality and my fears, I took most of the day just to escape into fiction and do almost nothing at all. I couldn't even call to get an update because I knew I couldn't take any bad news. However, I did just muster the energy to call and while Nora's nurse is at break, Ray's nurse said Nora looked a lot better tonight than in the morning. She said Ray is looking good and doing fine and being a stinker by not taking his bottle in spite of being wide awake and alert as can be. He gained weight and is the 4 lb range now and they increased his nippling to every 2 out of 3. Now that I've called maybe I'm getting out of my little funk cause I'm itching to hold Ray and wishing I was there to give him his bottle. Maybe I'll go in the middle of the night if I can't sleep. I hate this. I hate every part of my babies being so vulnerable and young and in the hospital, except for the part that I know they are getting the best of the best care around and they need it and the care they are getting. Most days I can steel up and get my defenses up high enough that I can just keep on getting on. There have been a few days where I have thought the stress might break me. Today, I had to check out of it all so that it didn't. Tomorrow is another day. I hope a better day. Either way, it is mine to face. I keep praying that God gives me the strength I need to be the type of person and mom I want to be. Not the person I was today who checks out, because they just can't take it.

Just like that - Updated

Just like that, Nora's back on high flow oxygen, in an incubator, and on antibiotics for pneumonia. The one thing I can say for the hospital and NICU that the babes are in is that it is top notch. I've been very impressed with the quality of care. I had called at 3:30 am and all was well. I got a call at 6 am from the doctor giving me the above news. Nora had a major dsat so her nurse woke up the doc at 5:30 am who called for tests who got all this done and diagnosed by 6 am when she called me. The doc said Nora will be fine, not to worry (ha ha), and that it can be a complication of MRSA. I, of course, AM worried and that not only is it viral, that I gave it to her since I had a tickle in my throat and coughed that one time at the end of holding her last night and I woke up with a bit of a stuffy nose and cough myself this morning when the doc called. This means I probably shouldn't and won't go to the hospital to see them today/for a few days which will be oh so hard. Damn. Damn. Damn. Things were going so well and now another set back. I really hope it isn't viral and she is fine.

Updated: It's not even an hour later (7 am) and another call from the doc who says they tubed Nora (put her on a respirator) because she wasn't breathing on her own. I told the doc after I had hung up with her that I'm worried it is viral because after I hung up from her I realized I have a stuffy nose. She said she didn't know, but that something was going on and she would be fine...that she's worried about NEC (which has to do with eating and the abdomen) and that even though she (the doc) took Nora off food for the day, she needs the oxygen and blood flow to the intestines so it doesn't cause problems. Oh, my poor girl. Just another thing and I hope she really is going to be okay. Please God, please.

Recharging

Today, I got to hold and feed both of my babies. It's funny how different they are already. Ray, when taking the bottle goes to town, has such a strong suck that he gets the milk waving in the bottle, gets ahead of himself in his gusto and enthusiasm and then he starts to brady (slow heart rate) and dstat (too little oxygen in blood) and is only taking part of his meal via the bottle and part via gavage (tube through nose into stomach via pump) since he went to 4 bottles per day. I can control him getting too much a little bit by reducing the amount of milk in the nipple or removing it, but only to a certain extent. Since they started Ray on bottle with every other feeding, he gets tired and can't finish it all and he lost a bit of weight last night so we are holding steady on him a bit. Nora, when taking the bottle is much slower and paces herself and is a bit more tentative. She takes a bit (today with me it was about 10 ml) and then just stops making it clear she is finished thank you very much. Not as dramatically as Ray's brady's and dstats, but by just stopping, all finished, done, no more. She's "nippling" twice a day right now. In both cases, the babes did a bit better and was able to take a bit more from the bottle with me than with the nurses (or so I was told). Possibly the soft soothing praise as I coach them through it telling them how great they are doing and how smart they are for taking deep breaths and remembering to breath and to take their time, no rush. Ah, we are getting there.

Nora is still off oxygen and doing fine. She had a bit of trouble overnight maintaining her body temperature once moved to the bassinet, but they day nurse warmed her up with some warm blankets and put her in long sleeves and she did great all day. With the oxygen, the move from the incubator, and the nippling, she has had a big few days and is doing great. It was so nice to see her face free of tape and tubes (with the exception of the small gavage tube through her nose now). She sure is a beauty if I do say so myself (and I do). She gained again last night and is 1/2 oz shy of 4 lbs. She's just doing remarkable.

Ray is holding his own. He lost a bit of weight last night. He's still on oxygen, but it was reduced again. Overall, he is doing well. He was so far ahead of Nora, but she is catching up fast. He's like the hare and she's like the turtle in many ways. I wonder how that will play out as they grow.

Max is doing well and having a great time in Arizona.

Me, I'm using the time to recharge a bit. I got to bed at a decent time last night. Woke up a bit later than normal to pump (and pumped 400 ml's which is my highest single yield ever to date), and then went back to sleep for another hour or so until the phone woke me up. I needed it the extra few hours of sleep. I felt so much less tired and drained today than I have. I'm also feeling proud because I took the morning (and it took all morning and then some) and got through the stack of papers on the counter, the stack of papers in my bed room, and the stack of papers in my office. I filed, and recycled, and paid bills. I made a few phone calls one of which was to make Max's 3 year ped appointment. I guess I should have done it a few months ago because I got the first appointment available which is in early October. Oh well. I hope that's okay with his school. I'll have to double check next week. I'm feeling pretty caught up and rested at the moment. I thought about trying to set up evening plans with friends and then decided to not and see how things went. I'm glad I didn't because I'm actually enjoying a bit of time to myself. It has been far too long.

Upgraded

If all goes as planned, Nora will be upgraded to her own bassinet tonight. She was taken off oxygen entirely today. And, she "nippled" for the first time today. She still remains in "isolation" so I had to gown and glove, but got to do without the mask since she is off oxygen. She weighed in at 1760 g this morning (which is about 3 lbs 14 oz I think) and has had almost zero residual the last few days. Starting from the day I first was able to hold her in fact. Go Nora Go!

Ray was moved back around the corner. Oh so nice for us all. I was able to hold Nora and see Ray, who once again slept the entire time I held him and was awake and moving and grooving and doing his best to rip out his oxygen for a good hour while I held Nora. His oxygen was also reduce today, but not removed. Nora's nurse shared with Ray's nurse the strategy of not retaping and letting the doc see how well they do when they get it completely out. :) The prediction is that Ray will be off by the end of the weekend. We will see. Ray is still slightly less weight than Nora at 1750 g. He is doing so well with the bottle that he is taking one at every other feed right now. The nurse said today, before the orders were changed, that they will usually start to introduce breast feeding once that happens and that she would let it be known that I was interested. Oh yeah, I'm interested all right.

Max is off to Arizona and arrived safe and sound and went to bed with no problems. I only got a bit teary eyed and cried a tad once I was inside and out of eye sight. The house is too clean and too quiet tonight. Good thing I am too tired to be too sad.

All and all, it was a pretty good day. I feel like maybe we have turned the corner with our NICU stay and unless there are any set backs, we are on a clear and solid path to home. Yes, still at least weeks down the road, but I can see the light at the end of the tunnel. It's not blinding me with its brightness, but it is clearly visible to the naked eye.

Week 4 = 1 Month = 28 days

Nora in her incubator.

Nora finally being held by her gowned, gloved, and masked momma.

Nora sleeping soundly in her mom's arms.

Ray stretching after "lunch" in his bassanet.

Momma giving Ray his bottle.

Hmmm, hmmm. Good stuff. Ray continues to do well "nippling".

Sleep, baby, sleep

I got to the hospital and both babies were sleeping. I went and held Ray for a long time and he just looked so happy and content. I held him up until his noon nipple feeding which he took again today like a champ. We were a bit messier today, but it was my fault because I filled the nipple too full a few times. Then, I needed to go pump, but he was wide, wide awake so it was hard to leave. When I came back, he was again sleeping soundly.

Nora had been awake awhile. When I looked over when leaving to pump, she was wide awake. And, she was wide awake when I got back. Once she got into my arms, she nestled in and slept...well, like a baby. Again, it was so nice. It will be nicer when I'm not gowned, gloved, and masked and so darn hot I can hardly stand it, but hey, I'll do what I have to do for now.

My visit was only marred by the fact that they moved Ray on the other side of the room around the corner last night. I tried not to let it ruin my day/visit with my babies, but it was hard because I was irked at best and angry at worst. It would be one thing if there was any good logic behind it, but there really wasn't. I was told it was because they were worried about cross contamination between the two which is quite insulting really. There are two other babies closer to Nora than Ray was in an open crib and bassinet, respectively. So, I guess they just don't trust me to not go back and forth or that I'm too stupid to follow the rules? As much as I keep trying to talk myself out of being pissed off, I'm finding it difficult. In the whole scheme of things it isn't that big of a deal, but it is just so much nicer to have them both within eye sight at the same time so when I'm holding one, I can see the other...especially since I either seem to time it so they are awake when I am holding the other or my arms are just so comfy they can't help but fall asleep as soon as I hold them. It's also nice to be closer so they can feel my presence and hear my voice when I am with the other one. Nora's nurse the last two days is a really nice guy and the one that was on the same side when I had that awful nurse a few weeks ago that validated that the other nurse was out of line. I could tell he felt really bad about them moving Ray and that he didn't agree. He said he may say something to the night nurses tonight if it isn't the same ones as yesterday to see if they can move Ray back. I'm not holding my breath, but I will be looking for the right opportunity to say something about how much more family friendly the other arrangement was. I can't wait until I have both my babies home and I have much more control and all the rules will be my own. On top of everything else, it is hard for me to relinquish so much control of my young babies to someone else. It's one thing when the decisions are rational and understandable, it is much more difficult when they seem to be made out of ignorance or worse lack of trust and that is really the only two scenarios I can come up with as to why Ray was moved. Okay, vent over. I really need to let this go, let it go, let it go, let it go.

Max is good. I left the hospital a bit early to have time with him this afternoon since we have plans tomorrow for swimming and dinner with a friend and my cousin is taking him to Arizona Thursday morning for a long weekend. I so didn't want him to go, but I asked him and he wants to go and he will have fun and it will give me several days of more time at the hospital and split one less way. I sure will miss him though. Some how the trip across state lines seems so much different than me being in the hospital even though the amount of time will be the same. Oh, he is growing up so fast and the twins don't seem to be growing fast enough. I just want them all home with me...then, I'll complain about how tired I am or will have zero time to blog because it will be insane...that's fine. I want that now, but the journey is not yet done. I have to get through at least another month of them both in the hospital, then having one home and the other not before I can get to where I want to be with all three sleeping under my roof with me in charge.

The best drug ever...

I got to hold both of my babies today for over an hour each. Oh, so nice. Granted, I was gowned, gloved, and masked holding typhoid Nora and roasting hot, but it was worth every one of those 75 minutes. I would have told them I would stand on my head and twirled if I thought it would have helped, but let's face it.... I would for sure have injured myself attempting such a feat and likely taken someone else out with me. Good thing it didn't come to that.

I was there when the doc did rounds and, why yes, I did have questions for him. I started to say, "I have a few questions. And, if ever the day comes when I don't..." and he finished "then I'll be worried about you and wondering what's wrong". I'm sure that's a good thing. :) Anyway, he wrote orders to begin one nipple feed (bottle) with Ray per day to see how he does and if Ray maintains his body temperature over night he will be moved out of the isolette and into a regular bassinet. He had a little outfit on for the first time today. Maybe I should look to see what I have for him and take something in for picture Wednesday.

It just so happened that Ray was about to get fed in a few minutes from when the doc wrote the orders and I asked the nurse if we could do the nipple feed then and if I could do it. YES! YES! and YES! Ray did great with it. The doc was still in the room and very impressed with how well Ray did. He drank it all (30 ml) within 15 - 20 minutes, he burped well, didn't spit up at all, didn't gag or have trouble sucking, swallowing, or breathing at the same time (which is a requirement to go home), had zero residual (they check the contents of the stomach by sucking out what ever is in there with the feeding tube to make sure food is getting digested), and it just went great. Since this tires out a babe so young, I'm sure we will only do one per day for awhile, but it is a start...another step in the right direction. Of course, I asked Ray's nurse to put a note in his chart to wait until I was there tomorrow for his one nipple feed so I could do it again and I will ask the night nurse to make sure that tomorrow's day nurse knows that in hopes that when I do get there it hasn't already been done. Let's see, he's on a 12, 3, 6, 9 schedule so as long as the nurse doesn't do it at 9 am I should be good for the nooner.

Yes, it is the little things that can make or break my day in this roller coaster NICU ride. Today was a good day. May I have more and more of them to come.

Not me....

The rest of the MRSA results are in. Both my left and right nostrals were negative. My breast milk was negative. Both Ray's cultures (nasal and rectal) were negative as was his blood. Both of Nora's cultures (nasal and rectal) were positive. I'll talk to the disease control lady tomorrow. I must begin cuddle care with that girl of mine...pronto. Now, just need to get those in charge to agree and find out what precautions I need to take.

Nora is getting more and more active. She was awake for quite awhile today and while I was there. So nice. Even when awake/alert, she isn't really tracking yet with her vision. I wonder if that is a problem or she just isn't there yet developmentally. I'll ask tomorrow when I see the doc.

Ray's been having a few more A's and B's (apnea's and slow heart rate/brady's) and the did a few tests on him that all came back negative. They are giving him a bit more oxygen support and up'd both of their caffeine support since they have put on weight. When I was holding him today, he was rooting and searching around for the nipple so I guided him to it for a few minutes. I had just finished pumping so knew he wouldn't get any milk (too early for that yet as he doesn't have the skill yet to suck, swallow, and breath) but he did get a fairly good latch going on and a few strong sucks and his stats (saturation, heart rate, and respiratory rate) were perfect during this time. Since this is very tiring to a lad so young, I only let him do it for a few minutes. Soon, I think soon he will be big enough to start getting food other than through a feeding tube. I also want to ask about the philosophy of adding in nippling (breast or bottle first), the timing (off oxygen support?, a certain weight?), that type of thing.

Max is already in bed and asleep. He was asleep before I even left his room. Tired boy. He was perfect all day until I got home and then he started melting fast. I figured he would and made sure I was home in time to get him down for an early bedtime. He didn't get to bed until late last night after the nap, was up in the middle of the night, and woke up at his normal time.

I don't want to jinx myself or anything, but all seems mostly okay with all three children at the moment. I hope we continue on that path because I can use a bit of a break from the drama and all.

Just waiting....

Things have been mostly routine the last few days...if you can have a routine day with two babes in the NICU. Just checked in with the night nurses. Nora's doing good at 30% oxygen and been sleeping well all night with only one apnea and several dsats. I guess they switched Ray over to a high flow nasal prongs to try to help with this apnea and brady's. I didn't think he was having that many and was told it was all "normal" for his age, but...I guess not. He's on 21% which is regular air oxygen level. I'll try to catch a doc or respiratory therapist tomorrow to ask. I've been waiting, waiting, waiting for the MRSA test results...or at least the rest of them. When I was in yesterday, Nora's nasal swabs came back as positive for MRSA and my left nostril came back as negative. All the rest are still "pending". I asked if the rest had come in when I called a few minutes ago and they hadn't. Another thing to follow up on when I'm in tomorrow. I was very happy to hear that at least one of my tests is negative and still hoping that "it wasn't me".

Max is mostly good. My cousin called me at the hospital yesterday to tell me that Max said he was sick and needed medicine and to go to the doctor and got just a tad defensive when I told her it sounded like he was just repeating the symptoms she has been talking about for herself the last few days and that he talks a lot about going to the doctor (since doctors and hospitals are such a part of our lives right now). The only symptom he hasn't "heard" from others was his eyes hurting and he's been doing a lot of swimming with his eyes open. I headed home early and had her put him for a nap and then took a nap myself when I came home to find him sleeping...good thing too cause I needed that patience as the night got later and later and he still wasn't sleeping. He was just up a bit ago with growing pains and I'm pumping before trying to get a tad more sleep.

Just life in the new normal right now.


Oh, and a quick update on a few things asked in comments...Nora's been on antibiotics for about a week now (would have to go look to see exactly), but she has been feeling better (or at least looking like she has been feeling better) since about 2 days after she started the antibiotics. She's in isolation with her own nurse not because she needs it so much as it is standard protocol to prevent the MRSA from spreading in the hospital or to the other babies. And, can't remember who asked, but I want with Alister for Ray's middle name. It means "defender of man" just like Alexander which is Max's middle name.

Happy 4th!

Max climbed in my bed early this morning and the first thing he asked was "How's Nora?" So sweet this little boy of mine. Sometimes he seems like such an old soul. The other day, he made a big flag for himself and two smaller flags for Nora and Ray that I took to the hospital yesterday. The second thing he asked was how Nora liked her flag. I told him she loved it and Max got the biggest smile on his face.

The charge nurse today is one of my new favorite people. As I was walking in to the hospital this morning, they were wheeling Ray out of room B into room D right next to his sister. So nice. Now, they can both hear my voice when I talk. When I was holding Ray, I could keep tabs on Nora. When I was sitting with Nora, Ray woke up and was so alert and just moving around and doing isolette arobics. I couldn't go to him and hold him or touch him because of the isolation rules, but at least I could watch him and talk to him which made me happy. Nora was looking and acting good today. She has adjusted to the nose prongs from the SiPap and is still on a fair amount of oxygen, but breathing on her own without assistance. She did wake up and was alert for a little bit while I was with her. I so want to get my hands on her and hold and cuddle her more. MRSA or not, I think that will be coming soon.

Several days to early for the results from Ray and my MRSA tests yet, but am really hoping that I come back negative. I'm going to feel so bad and guilty if I was the one who passed this on to Nora. In many ways, I'd find it odd if it was me or the breast milk since Ray hasn't gotten it as well and I've held him more and he has been on breast milk the whole time and Nora wasn't even on it at all at the time she got the infection. But, her immune system is more compromised than Ray's. We will see.

Time to wrap up the pumping and go spend time with Max and family who are here when I really feel like a nap. Hey, sometimes you just need to fake it until you make it.

My cousin is going to take her daughter to fire works tonight (or at least that was the last plan I heard), but I'm going to put Max down as normal, pump, then go to bed myself. Things have been so busy and on the go for us both I think we just need some rest and a good night sleep.

Night Nurse Updates

It's 3:50 am and all seems well on the baby NICU front (other than the fact that they are there and Nora's has an infection that has her in isolation). Both are now up to 30 ml of breast milk every 3 hours. Nora's getting it over 2 hours. Ray is now getting it over an hour (from 90 minutes) and seems to be tolerating the change well. Nora is still having some slow breathing and apnea, but the nurse said she is adjusting to the nasal prongs; she only had one episode where her heart rate slowed as well (brady); and she is a bit more tired because she is having to work harder to breathe since she isn't getting some assistance from the machine, but all in all she is adjusting well and doing well. Ray is having a few episodes of A's and B's, but all self resolved and it is considered normal for his developmental age at this point.

Testing and More Testing

Nora's cultures came back as a staph infection and we should find out over the weekend if it is MRSA or just normal staph. We also tested me, my breast milk, and Ray this afternoon as well. I asked the doc a bunch of questions and even more of the disease control lady, but I'm too tired to get into all the details tonight on it all.

Ray continues to do well. I held him twice and pumped twice before heading in to see Nora for a few hours. It was great to see her and touch her and change her diaper, but also a tad unfulfilling and slightly disconcerting. She started having some slow breathing and apnea, although her heart rate is really great and she hasn't had any brady's (slow heart rate). The doc decided to take her off the si-pap (the assisted breathing she was receiving) to oxygen prongs to see if she was fighting it, but she kept slowing down still with bouts of apnea so we will see how long this lasts. I so wanted her off that machine because it means that it will be easier for me to hold her soon (as a respiratory therapist will not have to be present to baby sit), but not at the expense of her forgetting or stop breathing. It's not as if she is going to die from this. Heck, since she is in isolation, she has her own personal nurse to monitor her 24 x 7. Still. And, she seemed a bit lethargic to me. But, I could have just caught her when she was tired and trying to sleep and we kept messing with her because of her slow breathing/apnea thing since I have limited time with her and didn't see her in a wake cycle. Or,maybe slow breathing just makes you tired. I don't know. I think I'm going to call the night nurse to see how she's doing so far in this shift and then will call again in the early morning.

Getting back to the MRSA thing for a minute, I did confirm with the doc that while MRSA can be fatal, it is not something they are concerned with Nora. She received treatment early and is being closely monitored. The isolation is to prevent it from getting spread to other babies. They are already very busy with more babies than normal. They can't afford for it to spread. I totally get this. I just needed to understand more about it and what the rules are. The infections desease control lady was very helpful. We are going to talk again on Monday when she's back in the office, although the results should come back sometime this weekend.

Week 3

It has been 3 weeks now, 21 days since my babes have been born. I know you are not supposed to wish your life away, but I'd be lying if I said I wasn't wishing for the next few weeks/month to just be gone. I'd like to fast forward until I have both of my babies home with me with them healthy, and strong, and where I can cuddle and kiss them as much as I want, when I want. In those 21 days I have held Nora only 3 times for a total of about 100 minutes. And, probably I will not be able to hold her much if at all this next week either. It really just breaks my heart and makes me cry. Mostly, I can just go on auto pilot and not think about things too much and just visit and do what I have to do. Then, things like today happen that just rock me off my foundation a bit.

Typhoid Nora, awake for the camera. Anyone else think she is pleading for me to get her out of there, just make it all better, or at least just hold her and give her hugs and kisses? Ray, stretching in for a nap after some mommy cuddle time.

Isolation

I'm just wondering if I can catch a funking break here? Really, I'm ready for it any time, the break that is. I think Nora can use a break too. If there is a God, we will catch a break soon. If only it worked that way and was so easy. Some times, like today...I really feel like I can break. That I will reach my breaking point.

Nora is in isolation for a MRSA infection. They got the results back from that infection on her pic line...it is MRSA. They are doing a blood draw and swabbing her nose and anus and if any of them come back as positive, she will remain in isolation for the duration for the rest of her NICU stay. If not, we move on and things will get a bit easier.

The situation is compounded by the fact that I have two children...one in isolation and one not. I'll spare you the details of today of the rules around that since they have called in the communicable disease experts and everyone I talked to today, the "rules" were different. Hopefully, they will be more clear tomorrow. Regardless, I can only be around Nora if I am gowned and gloved and for all intense and purposes, holding here is put on hold again today for a minimum of the amount of time for the results to come back.

Today was a hard day, but short because I was not allowed back in Ray's room after being in Nora's room (after I had been told I could as long as I hadn't held her and was gowned and gloved). Probably, all this will become routine as well, but today...it just plain sucked.

Heart attack

I've recovered from the heart attack I had this morning. When I called to see how Ray's night had been, I was told he had been moved back into Room A. He had been in Room C since Sunday morning. I wasn't thinking too clearly after hearing that so didn't ask good questions and it wasn't until later I realized that what I did hear didn't make sense. By the time I got to the hospital, he was back in Room B (but not on the same side of the room as Nora) and his nurse was on break. Even when she came back, it didn't really make sense. Finally, the doc walked into the room and I got the real scoop. Ray got cold and started having A's and B's (Apnea - a pause in breathing and Bradycardia - a slow heart rate). I guess they over compensated and heated his incubator too much which elevated his body tempature. The nurse was concerned he might be getting the infection that Nora had so he was moved to Room A for a blood draw and monitoring. The labs came back fine. He was moved back to Room B just for a bit more monitoring to be sure. He looked and acted fine to me all day and I got to hold him twice. Personally, I think the night nurse over reacted a bit although I'd rather have that safe than sorry/ultra conservative than not.

Nora's on the mend. I got to hold her for almost an hour today. The RT (respiratory therapist) was doing his charting after rounds and let me hold her until he was done. And, he was off to my side and not staring at us the whole time trying to mask inpatients and Nora's nurse went on break after a bit so it was just Nora and I carved out in a little bit of space behind a curtain in Room B and oh, was it so nice. Nora did so well tolerating the breast milk (even better than the formula) that she is up to 24 ml every other session which makes me happy on so many levels. She was a bit anemic so she is getting a blood transfusion today. I have mixed feeling about that. I signed the release back on day 1 and am glad she is getting what she needs, but it is just one more treatment or "extra" that could cause a complication down the road (no matter how unlikely).

What a wild, roller coaster of a ride this NICU experience is. Tomorrow it will be 3 weeks. Not that I'm counting or anything. All three of us are much more stable and settled in at this point.