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.

Mission accomplished...

I got to hold Nora today skin to skin Kangaroo Care for at least 30 minutes and Nora did great, great, great the entire time with no major alarms and only two quick minor dstats which she came back up on her own quickly. And, they reintroduced breast milk which Nora tolerated well.

Yeah!!

Granted, a very busy respiratory therapist who wasn't supposed to be working today and was covering all of rooms B, C, and D had to be there for the hold and she did her best, but didn't quite succeed in masking her difficulty sitting there when she probably had 5 million other things she needed to do. That's okay though. I didn't let it deter from my experience and I made sure to thank her several times and let her know how much I appreciated finally getting to really hold my baby. I got to hold Nora today. Yeah, yeah, yeah, yeah, yeah. I held Nora today. We both loved it. I swear she smiled at me as she nestled in and fell into a nice sleep. At least that's my story and I'm sticking with it. I also promised her that I wouldn't allow her brothers to call her "snora nora" when she grew up along with telling her how great she is doing, and how much I loved her, and other sweet nothings.

And, the doctor agreed to add back in breast milk every 4th feeding, so basically twice a day. She had the first one for dinner tonight and I just called and the night nurse said she tolerated it well. Probably doesn't make any difference for this infection thing, but it makes me a feel a lot better that she'll be getting at least some of my antibodies to help her compromised immune system. Plus, I have a stock pile of frozen milk both at the hospital and in the freezer at home and am running out of space. Nora's up to 24 cc's every 3 hours fed via pump over 2 hours. She weighed about 3 lbs 5 oz today.

It was terrific that I happened to be there when the doc examined her so was able to get the okay on both the holding and the breast milk. Also, the pic line (sp?) is getting removed tonight and they will add an IV line (the nurse called it something different, but can't remember the exact name) to just feed her antibiotics. She doesn't need the extra fluid and nutrients from the other line since she's getting enough from the formula (and now breast milk :). Nora's heart rate is still a bit high, but in the low to mid 170's instead of the mid to high 180's with even some drops into the 160 range. She's looking better. Still not 100%, but looks to me anyway that she's on the mend.

Ray continues to do well. No major alarms, but a fair amount of dstats when he is eating (whether I am holding him or not at the time). I held him for most of a feeding session today, but put him down to go spend time and hold his sis towards the end. He was very alert when I first started holding him and kept looking at me like he couldn't believe his eyes. He looked like he was rooting a bit and opened his mouth nice and wide so was on the nipple for a bit. His nurse came to check on him after one dstat that lasted a bit longer than the other and saw this (and blamed his dstats on this even though I knew/know it was not related) and told me when he dstat'd to take it out so he could breath. So, next dstat, I did and he started to fuss and I told him not to blame me I was only following instructions and the nurse laughed. Actually, I was going to take him off anyway and just have him use the boob cushion as a pillow cause I don't want to wear him out and he's not really ready to actually breast feed. I just want to get him familiar with the lay of the land and have him comfortable with it all for when he is ready in a few weeks. A few hours later when he was well into his next feed after having been out of the room with Nora and then to pump, I subtly pointed out to her that the dstat's related to him eating and that they get more frequent towards the end. She went back to look and ... by George...I was right. To bad they change nurses so often as I had just had the weekend nurse on the same page with me on that and had to do it all over. I really wouldn't care much except that most nurses tend to think that Ray is getting stressed because I'm holding him while he eats and would rather I not and I would rather I do so I can get my subtle early nipple training in. Ray is up to 28 cc's of breast milk a day every 3 hours via pump over 1.5 hours.

BTW, dstat stand for desaturation. The babies where a sensor on their foot that picks up the oxygen level in the blood, when the monitor thinks the oxygen level is falling the "dstat" alarm goes off. But, if Ray stretches or squirms, it goes off. I'm not really sure why Ray tends to dstat when eating, especially towards the end when his stomach is full, but it is a pattern. I think I'll ask on that tomorrow.

All in all, today was a good day. I went with Max to pre-school which he continues to love and feel like I was able to spend some good quality time with both babes. And, I got the changes I wanted for Nora with the okay to hold her and re introduce momma's milk. But, boy, am I tired. Max was up again twice last night. Neither for long, but just enough. And, the last one at 4 am which had me up to pump, call and check on the babes and other such activities, but at least Max went easily back to sleep. The day, like most, are long...but all worth it and overall good.

My own eyes

No way could I stay away from my babies today. I didn't go for long and did spend most of the day with Max, but did spend about 2 hours at the hospital. It goes fast, the time I spend there. Pumping is a necessary evil that has to happen at least once each visit, more often twice. I held Ray for about 30 minutes and spent the rest of the time with Nora and talking with the doc on today. I'm glad that I went and saw Nora with my own eyes today. She looked better and more rested. Her heart rate was more in the 70's instead of the 80's. They are still treating her as if she has an infection. Her labs continue to come back normal, but infection was found in her pic (IV line). They sent it off for evaluation to make sure that the antibiotic she is on will kill it off if she does have it. They will continue to test and monitor her. A nice treat is that the nurse I like the most was on today and is working the next 5 days. Here is to hoping she has my babe for all or most of those days.

Max was up several times last night. Not sick as much as rolling out of bed (which is a mattress on the floor) and a bad dream. This means I was up a lot last night. I'm pumping now and haven't decided if I'm going to try for one more tonight before bed or go to bed early knowing that I will wake up in the middle of the night and have to pump them.

Anyway, it was still a family day. I think the concept of a day not going to the hospital is a good one, but I'm not sure I can just not do it...just not go. Phone reports from the nurses are fine, but I need to see them with my own eyes just to make sure all is well. They are part of the family too. It actually worked out well. My cousin went early and I took the kids to church, lunch, and swim. Then, we packed up and went to the hospital. Max got to see the babes through the window and then hang out with me while I pumped. CC got to go see both babes with her mom while I pumped. Then, my cousin brought them home via a trip to the gift shop, the water fountains, the park, and got Max dinner and ready for bed. I stayed for my short visit then rushed home to tuck him in and give him kisses. I'll get to spend more time there tomorrow with Nora and Ray. We will see how Nora is doing, how she is responding to the antibiotics, etc.. But, all being equal, I'm going to ask if I can hold her for a bit and see how she does. I ask the doc today about starting to mix breast milk in and when does that start to happen. I'm going to follow up again on that tomorrow. I'm not going to be pushy, I just want to understand what the plan is and let them know that all things being equal I'd like that to be sooner than later if she can tolerate that.

Sick? (Edited)

Nora's struggling a bit. She looked tired and stressed today and her heart rate has been higher than they want it to be since last night. She wasn't really sleeping good today, at least not any time I was in with her. They took out the nose prongs on her oxygen and put a little mask over her nose in case her nose was sore that was causing it. They redid her IV line to make sure it was positioned correctly to see if that could be irritating her and causing the distress. They really don't know why she's off, but she is. The doc said she thinks maybe she is getting a virus or an infection even though Nora doesn't and hasn't had a temperature, her CBC (complete blood count) has been normal, and her lung x-ray looked fine. The doc is going to start her on antibiotics as a precaution and is repeating her CBC again. If that doesn't seem to work, they are going to give her a blood transfusion because her hematocrit numbers were a little low. I'll call in the middle of the night to see how she is doing. Probably, I am going to the hospital tomorrow afternoon to be with her a bit and see for myself how she is doing. First, I'm going to take Max to church and pray a bit. I'm worried about her. Sickness and infections in babes as young as she are not good, not good at all. Some can be fatal. That's why they are starting the antibiotics and testing her CBC as often. Fine with me. Please, please, please God, let her be okay.

Ray's doing great. I got to hold him twice today once for a really long time and for a complete feeding (which is 90 minutes) and then again for about another 30 minutes while I was waiting on the doc to check on Nora. Then, it was a rush home to have a quick dinner with Max who didn't eat, said he was cold when the house is at least 80 degrees, and said he had a tummy ache. Is Max getting something too? Or, was it just too much fun in the sun today and eating too much junk food with his Aunt today? Time will tell.

And, with the possible illness comes worry, worry, more worry. Did I wash my hands that last time I went from Nora's room to Ray's room? I'm obsessive about it, but can't actually remember. I saw that nurse from hell touch Nora on Monday several times without applying the antibacterial alcohol. Did she pass something on? Let it go. Even if so, nothing to be done now, and she is already gone for good so let it go. Did I bring something in from Max or home somehow? If so, it is more likely I would have passed it to Ray, not Nora since I've barely touched her all week. And, I'm pretty obsessive about washing my hands and applying the antibacterial alcohol and everyone in the house is under sticked orders to not touch any of my breast pump supplies that I sterilize after each use, not that it matters since Nora is on a low lactose formula, not breast milk. I'd actually feel better if she was on my milk since she is hit or miss on digesting the formula just as she was the breast milk. Maybe I'm going to ask if we can mix some of that in tomorrow depending on how things go tonight and tomorrow.

I'm tired and worried and sad. Please God, let my baby girl be okay. Please, please, please with sugar and honey and a cherry on top. She's so little and so vunerable. Please let this be nothing or just something minor...another little bump on the road to recovery and home. Pretty, pretty, pretty please?

Edited: As of 12:0 am, Nora's on antibiotics and being treated as if she has an infection even though her latest CBC was again normal. I guess Dr. K is going to hold off right now on the blood transfusion and see how Nora reacts to the antibiotics. Her heart rate is still a bit high, but the night nurse says she's on her tummy (her favorite position) and sleeping well/peacefully. Apparently, the day nurse had told her Nora had slept all day. I said, well, she had her eyes closed, but she wasn't really peaceful or in a deep sleep and I had mentioned to the day nurse about putting her tummy down because it did seem to calm her and was told that would happen after her feeding when I left and didn't happen. I'm up pumping because Max woke up crying for unknown reasons. He did feel a bit warm, but I didn't take his temp or give him Tylenol because he has seemed to go back to sleep after cuddling with me for a few and a diaper change and more milk. As I told the night nurse, I'll probably call back at the end of shift just to see how Nora is doing (and will check on Ray then as well).

The great divide

The wonderful news is that Ray continues to thrive and do well and he is "graduating" to room C this morning. Way to go Ray! One step closer to coming home with momma and being an active member of our home life.

The not so great news is that Nora continues to struggle a bit. Per the night nurse, she had a few "bumps" last night. They did another full work up and lung x-ray ... presumably to check...again...for infection because her heart rate is up higher than they would like. Blood work came back negative. X-ray results are back and I should be able to get the update from the doc on today when I'm in. It just makes me cry because I wish there was more I could do for her.

And, life gets more complicated again because now I'm down to dividing my time 3 ways in 3 different locations instead of two. Ray and Nora were close enough in room B that even when I was "with" Ray, I felt she could feel my presence and hear my voice. It's just so hard to be so happy for Ray (and me in regards to Ray and how he's progressing) and not to worry that Nora just seems to be going backward or at least stalled. While your not supposed to compare...yeah right...almost no way to not. I haven't allowed myself to be worried about the future for either of the twins in terms of long term health issues or developmental delays because really their is no crystal ball, neither had any brain bleeds at all, and time is going to tell the tale so no point worrying now about some vague unknown that may or may not happen. After today's result, I feel myself starting to go there with Nora a bit. I'm telling myself not to get all worked up and this is just another new normal to get through for a bit. Ray has been the super star 29w NICU baby. Nora is the normal and average 29w NICU baby. So, I have been told (basically) and been telling myself, but you can bet I'm going to be asking for that reassurance again today about Nora. And, asking for reassurance on what is the best way to help her.

Oh, this is so hard sometimes. I feel like I had just gotten into a routine and was feeling good about things and now I'm not feeling so good. I'm so glad I got the early warning with my call to the night nurse so I have a bit of time for mental preparation rather than just showing up and find out like I did with the move from room A to room B (though that was different because it was a good/good/good thing and they both moved).

I don't know that I can keep myself away on Sunday. With this change, everything feels more uncertain again and not stable enough for me to allow myself a break. I'm taking a deep breath and telling myself to juts play it by ear and see how today goes when I can see them both. Talk to the staff directly and watch for the non-verbal clues that you pick up by just being there.

It's not as if I didn't know this was coming at some point, but I wasn't expecting it so soon.

Kangaroo Momma

I got to Kangaroo cuddle Ray again today. For a long time. Maybe an hour and a half? We both loved it. The nurse (one of the ones I really like) said he is stable enough that I can get him out and cuddle him on my own without waiting for a nurse. And, she said I could put him on the breast and let him suckle if he wanted. Once in the beginning when he opened his mouth and once towards the end when it was getting close to afternoon snack time and he started to let out a cry, I plopped the nipple in. He got this intrigued look on his face both times suckled a few times and then just hung out on the boob for a bit. It was nice. Very nice. I just love, love, love holding him, being able to hold him.

It makes me a tad worried that I will bond a bit more with him, especially if Nora doesn't get switched back to breast milk and/or I'm not able to breast feed her. It makes me a little guilty because I've been spending more time with Ray than Nora on my visits because they are more rewarding to me. Only a little guilty, not a lot because Nora still isn't digesting her food as well and consistently as they would like and they have up'd her oxygen support a bit because of increased apnea when she was being fed and they really want her sleeping and resting as much as possible right now. So, I'm actually giving her what she probably needs most (and the nurse indicated as much) by leaving her alone more, but my guilt comes from enjoying holding her brother so much when I can't hold her. Don't get me wrong. I'm itching and want to hold her so badly I ache with it sometimes, but now is not the time for her. I'm hoping its soon, but think it may still be a week or two out if for no other reason than logistics. The oxygen support tube is on the right of her incubator and the opening is on the left with all the other wires and it isn't long enough for me to sit and hold her. Hopefully soon, her digestion issues will resolve and when I think the timing is right, if they haven't changed her mode of oxygen, I may ask to have it moved to the other side. She's going to start a new med to aid in digestion that sometimes can cause irritability so we will see how all that goes and how she takes to it.

I'm looking forward to tomorrow where I have no other commitments or plans other than to spend most of the day shift at the hospital with Nora and Ray while my cousin take Max and CC to the beach and to my mom's for the day (while the house gets cleaned...yeah!). I'm having mixed feelings about Sunday which is the first day that I plan to not go to the NICU. I know I need a break; Max needs a full day with his momma; And, Sunday has always been our hang out day of rest. But, I'm already missing them...yes, in advance and even knowing I will have a good long extra amount of time with them tomorrow.

Week 2

Max yesterday as Mommy with the shirt, socks and shoes to prove it.

Week 2 Nora

Week 2 Ray

Week 2 Kangaroo Care with Ray first time

I finally got around to emailing my bosses and our admin. and update. Here it is only slightly modified to remove any direct identifiable references.

Hi - Just thought I would send a quick email to let you know how things are going here. It has been an emotional roller coaster of a ride with a fair amount of stress added in, but the babes are starting to stabilize and my cousin came on Sunday which is helping from a logistics standpoint tremendously.

Ray, who was the instigator of the early delivery and whose water broke, has consistently done better in most areas and is more like the super star of 29 week preemies. He lost his IV line yesterday and is what the doctor called "a preemie growing to go home" and what the nurses call a "feeder and grower". He is still weighing slightly less than his sister and was at 2 lbs 14 oz today even though he has been eating more for longer. He currently gets 23 ml of breast milk every 3 hours. I've been able to hold him most days this last week for about 30 minutes. I was able to Kangaroo Cuddle him for a few minutes today, but he liked it so much and got so comfy and relaxed that he kept forgetting to breath so that didn't last long.

Nora is more like a normal 29 weeker who has been less stable and has struggled a bit more. Nothing too serious as far as I know, but just "more". For example, she had an artery in her heart that didn't close after birth and needed medication for that did close it; she wasn't digesting the breast milk consistently and was moved to a low lactose preemie formula for a week or two until her digestive track is more mature; she needs a bit more oxygen support; things like that. Nora was weighing 3 lbs 1 oz today. Both have been off the bili lights for jaundice about a week now which is nice because you can actually see their faces. I've only been able to hold Nora once for about 10 minutes a few days ago, not nearly long enough.

It sure is a counter intuitive way to parent because what you want to do isn't usually the best thing for them. Their main doctor hasn't mentioned a potential go home date, but another doc said that he thought they were doing well and would likely go home in 5 - 6 weeks which is about the earliest go home date I had in my mind. We will see how things progress. I would bet that Ray will be home before Nora which will add a whole other layer of complexity to the situation.

I talked to my disability claims manager about the leave situation last week and she approved my leave through August 5 with an August 6th return to work date. There is just no way I can return then if the babies are just home from the hospital. I asked and they denied my request to go back to work now and save the remaining 6 weeks until the babies are home. With my cousin here over the summer, that would be the more ideal situation, but they wouldn't budge on that. My cousin will not be able to stay past early August because she needs to get her oldest off to college, get her youngest started and adjusted to middle school, and get back to her own life. I explained the situation again and the claims manager on my case suggested pursuing a stress leave following the maternity leave, which apparently isn't really a maternity leave and doesn't account for child bonding, only recuperation from the c-section. So, I'm going to pursue the stress leave. If that doesn't get approved, I'm hoping something can be worked out because there is just no way I can bring these guys home and be back working full time especially if they come home on oxygen or apnea monitors when they are still going to need to eat every few hours. Personally, I think it is pretty crappy that I have to worry about this when I know full well that I am eligible for 26 weeks at full pay and they only want to approve 8 of it. It has only added to the stress level especially when I have barely even taken a sick day since I started with the company. If I have to, I'll look into taking the remaining FMLA time without pay, which would only give me another month off which isn't really enough then use my vacation time. I won't be happy about that and can't really afford to take the time off without pay after two hospital stays in two weeks for myself and 2 babies in the NICU for 2 months, but really feel like I'm being put between a rock and a hard place on this one at an already difficult time.

Anyway, this got longer than I planned. I've been meaning to check in since last week, but the schedule is pretty brutal and I barely have a spare minute so only the most basic of things are typically getting done, although it is a bit better now with my cousin and her 11 year old daughter here now. I'm including a few pictures from today. I'm taking pictures each week they are in the NICU to show progress and help me count down the time until they are home which still seems so far off. Plus, a picture of Max from yesterday wearing his mommy's shirt, socks, and shoes. Hope things are going well on the work front. While I'm not worried about the day to day work stuff at all, I do think of it more than one would think.

And, that's today. Two weeks down, countless more to go. I talked to a new mom (and her mom) of twins today with one still in room A, the more critical room, and the other next to Nora in room B who were born at 32 weeks after a month of hospital bed rest who are all wired up and on bili lights and probably feeling as overwhelmed as I was and as sad as I was about going home without her babes. The mom's mom came over and thanked me and said talking to me who has so recently BTDT helped. If so, I'm glad. The whole situation just sucks and so much more in the beginning.

A better day

Today was another day. A better day. I saw my favorite NICU nurse as I walked through the doors this morning. I calmly asked her who I would talk to if I had an issue with a nurse from yesterday, but did get a bit teary eyed as I ask. She immediately, without question, got me in the office to see the director of the department. The director listened to me and took immediate action. Not only will that nurse not be in charge of my children any more, she will no longer be working at that hospital. She was a contract nurse who apparently didn't even show up today. The nurse who had the babies next to mine both yesterday and today came up first thing today to apologize that had happened and he had reported it to the charge nurse who was already aware of the situation. He said that the nurse yesterday was completely out of line, that he had heard some of the things she had said to me, and that he felt I had handled the situation more than appropriately and much better than he would if he were the father and they were his babies. In fact he suggested and I had already thought the same thing, that the reason the babes had such a difficult day yesterday was because they picked up on the nurses stress and anxiety. The nurse today was polar opposite. Both babies were calm, very few alarms (dstats, bradleys, and decelerations) maybe almost none today. I got to change diapers and take temps and turn babies and hold Ray a bit. I didn't even ask to hold Nora today. Not only was yesterday a hard day for her, they changed the way that she is receiving oxygen flow this morning while I was there. I wanted to make sure that she was nice and stable for a bit and she was all day. The doc ran labs to make sure it wasn't an infection and they all came back looking good. He also did a brain scan to make sure there wasn't any small bleeds, but hadn't read the report yet when we last talked. However, my guess it was a combination of needing stronger pressure on the oxygen and a mean stressed out nurse that she didn't like either. Ray had is up to 23 cc's/ml's every 3 hours and the doc gave the order to remove his IV line as he told me that Ray is now what hey call a "preemie growing to go home". I like the sound of that. He reassured me that Nora would get there too soon enough.

A friend came to visit them for the first time and we did a quick lunch. My cousin came for a bit in the morning to visit as well. I stayed a bit longer than planned, but did get home to swim with Max for a bit in the pool before dinner and bed like I had promised. Max is loving the whole pool thing this summer and loving having CC and Aunt T here. But, was happy to have his mommy there for a bit too now that my OB gave the green light. He's been in the pool so much the last few days he got his first "bloody toes" that tends to come with the first week or two of every summer. Noemi was a bit concerned about him as she told me. I couldn't help but smile remembering all of my bloody toes (get them from pushing off the bottom of the pool so much at the first of every season until the toes toughen up a bit), but we will get him some swim shoes. Ah, the joys of summer as a kid.

Max was out within 5 minutes tonight at bed time after protesting he wasn't tired and didn't want to go to sleep. He was so worn out, but in a good happy way. He went to bed in a pair of my socks and a shirt of mine that he likes to wear. My sweet sweet boy. He sure is at a fun age right now. We had a whole conversation about monsters and how they weren't and couldn't get him. They live in the rabbit hole you know. :) I explained that not only were they just pretend that the couldn't get in the house because momma locked it up at night. "But, why momma? Why?" was used a lot in the conversation. The old stand by of "safety first" was the conversation stopper.

Now, if only all days could be like today...yeah right. I can't wait to bring my babies home.