Monday, June 30, 2008

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.


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.

Sunday, June 29, 2008

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.

Saturday, June 28, 2008

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.

Friday, June 27, 2008

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.

Wednesday, June 25, 2008

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.

Tuesday, June 24, 2008

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.

Monday, June 23, 2008

Sometimes, you just need to cry a little

As I tell Max, apparently often enough that he repeats it back to me when he's crying and I ask what's the matter, sometimes, you just need to cry a little. And, sometimes, you need to cry a lot. And, sometimes, when you start, you just can't stop.

I realized within the first day or so of Nora and Ray's NICU stay that the nurse on duty can make or break a visit. They control so much. Everything really. Although I'm the mom, I control nothing. Nora and Ray have had nurses that I have really, really liked and bonded. And, they have had nurses that I haven't particularly cared, mostly because they don't offer or try to make you a part of the babies routine, tell you when diaper changes will be and ask you if you want to do it, stuff like that. However, until today, they have always had different nurses and I haven't had two that way on any given day so it has balanced out.

I was so looking forward to my visit with Nora and Ray today. It was later than I have been going since I had a 2 pm incision check and my cousin agreed to get Max dinner and to bed. Keep in mind that this is my story from the mom's perspective and I'm sure the nurse has her own version of the story, but this is my blog and my story and I get to tell it my way. From the moment I walked in it seemed like my babies were an inconvenience to her. Apparently, she lost weight today because she walked back and forth between the two of them because of alarms going off (that's a direct quote by the way). From the very beginning, she started telling me what I couldn't do, which was pretty much everything and anything. Not only was I not able to hold Nora again today. I was not suppose to touch her or over stimulate her. Then I wasn't supposed to talk to even talk to her. She didn't want me to hold Ray at all and I pushed it so she let me, but only for a few minutes because he had to eat. Never mind that I have held him plenty of times before while he was getting his food (both Nora and Ray are being tube feed via a pump right now). Fine, the nurse is in charge, don't argue, just do what she says. The last straw was when I was being booted from even sitting next to Nora because it was all my fault she hadn't had a good day, and the nurse had to give her the dosage of caffeine late because her heart rate was too high, and something else that I don't remember because I just tuned her out at this point realizing it didn't matter that I had done everything she had asked and hadn't even been there for whatever she was talking about, she had to come and settle her down after I had gotten her all worked up (another direct quote) when I had done nothing but sit there and look at her. Anyway, getting back to the last straw, it was just after all of that when I went to go sit next to Ray that she told me to keep the incubator closed because he was a little cold, which basically means I couldn't even touch him either. Never mind that he was the exact same temperature he has been plenty of times I have been in, that she just had him in a diaper with no blanket, and that my hand and touch does have and could offer body heat. We had words at this point where I basically told her I was very frustrated at this point and would appreciate her telling me what I could do to help my babies instead of what I couldn't every time I turned around. Of course, she didn't get it. Basically, I could do nothing right the entire time and I felt like my entire visit was just pointless because by being there I was practically causing their demise. She actually even got on my for not giving her my fresh breast milk after I had pumped so that she didn't have to thaw out when I have been pumping at least once if not twice every single visit every single day since they were born following the protocol I had been told which is to give it to the receptionist out front if one is there and if not, to give it to the babies nurse.

So, I just sat behind Ray's isollette and just cried, and cried, and cried some more. I stayed until shift change as I had planned (no way was I going to let her run me out of there even if I couldn't do anything but just sit there and look at at Ray) and decided to stick with my plan of pumping before I headed home crying the whole while. I cried on the way home. Once I started, I just couldn't stop. I'm starting to get worked up and cry all over again just reliving it.

I will be talking to the social worker and/or head nurse tomorrow about this. I couldn't have had a decent conversation tonight about it. I was just too upset. Probably, it will do no good, but I am going to follow up on this. I am still the mom and I may only have little to no control, but strongly feel that part of the nurses job is to help the mom be a part of the babies life, not a burden to it. I'm probably going to go so far as to ask that she not be assigned to either of my children again, but especially not both of them at the same time. She'd probably be just as happy with that seeing as how she lost so much weight today because of them and then having to deal with an over emotional mom (which is why she'd rather work night shift as I heard her tell the other nurse on that side of the room). Please oh please, do not let her be working again tomorrow, at least not assigned to either of my two. Feel free to pray that prayer with me, cause I really don't think I could take that nurse again two days in a row. I don't.

Speaking of weight loss, I've lost 9 lbs in the week since my last incision check. Nothing like stress, a schedule too busy to do more than just eat the bare necessity while doing something else, and pumping. I'm sure weight watchers and other weight loss programs would not approve. Personally, I'm fine with it for now as I had and still have weight to loose. Also, my incision is looking great and looks to be solidly healed such as I was given the go ahead to swim (as long as swimming didn't use my abdominal muscles and was more like standing in the water catching Max or floating in a floaty) and take a bath. Max will be thrilled with that. Sadly, no orgasms for another month. Sad because I have actually felt like it a time or two and it would be a really good stress relief. Ah well, I really don't need any internal problems because I didn't allow things to heal properly so I will be following doc's orders on that one. While at the OB's I got the paperwork done to file for state disability and just need to copy it before getting it in the mail tomorrow. And, my OB agreed to sign a letter (that I agreed to write and she accepted the offer) that she would recommend I stay out on disability for longer. I'll make sure I have that done for my next visit in 4 weeks. Hopefully, I'll be able to talk with the social worker tomorrow and ask her if she would do the same. Then, I meet with the counselor on Thursday and will ask her. If that doesn't work, nothing will and I will know that I have done my best. But, I'm hoping it will.

In other good news, Max and I went to his pre-school introduction class together again today. We both had a good time. No tears for me. And, only tears for Max when he got bonked in the head by something. He still didn't want to leave, but no major melt downs. He still wants to come back, but he's added the "with mommy" to the end of that sentence. I have an appointment on Wednesday for Max's IEP meeting so can't go this Wednesday, but still think I'm going to try to do Monday's and have Noemi do Wednesdays and split it up a bit.

I have so puffy eyes, a headache, hunger pains, and am emotionally drained in addition to just plain tired. I'm going to suck it up and do one last pump before turning out the light.

Tomorrow is another day after all. It has to be better, right?

Sunday, June 22, 2008


My cousin came today. My cousin came today. Hi ho the dairy oh. My cousin came today.

The relief was instantaneous. We went straight from the airport to the hospital and got her signed in so she could go by herself. CC (her 11 year old daughter) watched Max in the hall and waiting room and both were able to look through the windows and see us. Then, I took the kids and pumped. We switched and my cousin T took the kids for lunch. She found it as hard to leave as I do and asked how I did it. Of course, the easy answer is no choice Max needed me/needs me too. We've got a loose schedule for this week. Plus agreement that she will take the kids on Saturday while I visit the NICU to my hearts content and we will flip on Sunday giving me one day home to spend with Max for our time with me knowing someone else who loves them will be there to visit the babes.

I got to hold Nora for the first time today. It was so nice. T had her camera and we did get pictures, but she forgot her cord to download and it is a odd size I don't have so they will have to wait. Oh, and the neonatologist on today came by when were were there and for the first time one of them mentioned a tentative go home time frame. Granted, its 5 - 6 weeks out and about the earliest time I had in my head (and coincides with my current return to work date). If that holds true, I'm almost third of the way through the NICU phase of their life. That seem much more manageable than "the end of the summer" or "two months".

T drove on the way home so I could pump and eat (simultaneously) in the car in route (thank goodness for tinted windows and bucket seats :). May not sound like a big deal and wasn't for her as she has been here many, many times and familiar with the freeways/routes, but helped my schedule immensely.

They swam while I napped and then pumped again. She gave Shadow a much over due bath/shower. We all hung out for a bit when we first got home and then before dinner/bedtime, It was nice.

I got Max down, pumped again, and then was free, free, free to go out and run some errands. I haven't had that freedom since my niece lived here for a few months last year (or maybe that was the year before now?). Again, doesn't sound like much, but was huge relief and heady sense of freedom for me. Of course, by then almost all of the stores I needed to get stuff from were closed, but still it was nice to be out after dark. The first time in the new car as I realized I didn't know if the lights came on automatically or which setting turned them on.

It's the end of the day and I'm not completely exhausted. As I told her, none of it is big, but all of it adds up to take the edge off me.

Today was a good day. Still busy for sure, but in a much more fun less stressful way.

Saturday, June 21, 2008

"The Trends"

This is why I keep track. I entered my milk production data to current and trended it. All's basically fine. I am trending up. One less worry.

I can't figure out how to only get the chart and am tired and going to bed now that I have one less worry and got my average of 7 pumps in today. If you click on "the picture" the chart will get bigger/be readable.

Clock Watcher and More Time Off

From the moment I wake up to the moment I go to sleep and even at least once in the middle of the night my life is scheduled. Wake up, pump, get Max breakfast and dressed, get my self dressed, remember to eat. Pack up, get out of the house. Got to go. Got to go. Got someplace to be. Hope traffic isn't too bad cause it just takes away time from either Max or Ray and Nora. So, difficult to get to the NICU. So, difficult to leave. Ten minutes with Ray. Ten minutes with Nora. Fifteen minutes with Ray. Fifteen minutes with Nora. Back and forth back and forth during the allotted time for that day. Take time to pump, eat something, drink water, go to the bathroom. All those things take away from the precious limited time I have to spend near my babies. It's almost like two separate lives with two very different ways to be a mom. It is never enough. It just doesn't feel like it is ever enough. The animals follow me around the house meowing or panting when I'm home. I trip over them as I rush to do what I need to do because there just aren't enough hours. I curse at them in my mind and once or twice out loud when Max wasn't around. They need more of me too. More of me that I just don't have to give right now. One more thing to feel guilty about. My milk supply isn't growing and seems to have dropped off a bit. I haven't added the numbers yet. Is it the stress? Not pumping enough? Don't know when else I'd have the time. Heck, I even pumped in my car today to keep up the schedule. Not drinking enough water? Maybe bigger cones would help, but no time to find the breast center to get something. Just something else to feel pressured and guilty about. It's currently 103 out, dropping from 114 a bit ago. Max wants to get in the pool and swim, but I can't because of my scar (talked my mom into coming for the afternoon so he could get in). Max got a box of cooked noodles for dinner with frozen peas still frozen (likes them like that, but he's getting sick of them since I give them too much since they are the easiest) and a hot dog. He asks for sausage instead cause at least is something different; at least it wasn't another casadella or sandwich. Max is so tired at the end of the day that it is affecting his behavior. His schedule is pretty much non stop these days like mine. I'm finding it hard to deal with. He's only two. I really need to put him down for naps, but just can't. I don't get a break all day and just barely (most of the time) have the patience I need to get him to bed for the early bedtime. I feel like I am just a bad mommy to everyone right now, but don't know how to do it any better. What gives? In my mind, nothing can so I start all over and do it again the next day. I hate my schedule right now. I hate it. I hate being so darn scheduled. Life is hard. But, I love all my kids so much. I want to give them it all. Instead, I'm just giving them my best. I hope it is enough. I hope and pray it is enough.

My cousin comes tomorrow. I'm hoping it will help some. At least a little. If she can give at least a little time to Max, visit the twins a bit while I have a break at home with the older two (Max and her 11 year old daughter), be home more so the animals aren't as freaked. It won't be me, but it will be someone else consistent who is similar to me. I praying I'm not getting my hopes up too high for even a little relief. I know there will be some conflict. Two women can't usually live together for long without some conflict especially when one of them (me) is stressed, tired, and hormonal. But, we know each other well..both our strengths and our weaknesses. And, she will love them all, probably not as much as me, but enough. She's already agreed to get Max dinner and to bed on both Monday and Thursday night since I have 2 pm appointments both days (incision check with OB on Monday, therapist on Thursday) halfway between home and the NICU. Not only will this allow me to not have to rush out the door in the morning and then back home in the afternoon. Since I won't have to rush home so Noemi can leave, I can go to the NICU later after my appointment and stay until shift change. It will also allow me time to go to the second day of Max's preschool with Max. I would have had to choose between a NICU visit that day or school for Max. I would have chosen the NICU visit and sent Max with Noemi. This way I get to do both.


On the FMLA, yes, I can take an additional 4 weeks under FMLA, but FMLA is unpaid leave. With two babies more than 2 months in the NICU; two hospital stays for me two weeks in a row; normal expenses; and expecting to operate in the red at least the first year if not two just because of additional child care expenses.... I can't afford to take time off without pay if I can help it or without cashing out stock, an investment, or my retirement. My company offers 26 weeks of short term disability for my years of service at full pay. They only want to give me 8 of it for the c-section and nothing else. After as many years that I have worked for this company and less than a handful of sick days, over time when needed, they can damn well pay me my full salary at a time when I need it most through a benefit that is just sitting there unused all this time. Fine, I need to go see a therapist and tell them I'm stressed out. It's the truth. I'm not trying to game the system. Heck, maybe it will help, who knows. It's just one more thing to try to fit into a schedule that is already so brutal that I dare any one else to try it and not feel on edge and stressed.

I also still have 4 weeks vacation that I have not yet used in addition to the 4 weeks of unpaid FMLA. The state of California does have some benefits (an amount for 8 weeks, then half that available for an additional 6 weeks), but the amount is a drop in the bucket compared to my normal salary. Call me greedy, but I want the three months home with both babies like I planned before going back to work. After only getting to hold Ray for 30 minutes a day and still not being able to hold Nora, I'm going to need a lot of cuddle time with them. It's still a long way off, but they could come home on oxygen or sleep apnea monitors. The first few months home with normal term babies is hard enough (so I hear). The first few months home with preemie babies who have spent months in the NICU is bound to be harder and I can only hope and pray that there will not be serious health consequence as a result. And, what about the likely scenario of one (probably Ray) coming home sooner than the other. How do I manage that in a schedule that already has no give?

Anyway, I digress, bottom line is not only am I fighting for addition time off. Time longer than what FMLA and my vacation will give me. I fighting for it at full pay. Benefits are there for a reason and to be used when needed. I can see as no better time than now for me to tap into it. Basically, I want it all and I may not get it, but I'm going to fight for it. I don't think I should have to, but if I do. I do.

Thursday, June 19, 2008

Just another day

Just another day with highs and lows and everything in between.

The babes are improving and stabilizing every day. They were both taken off the bili lights today. This means I actually get to see their heads and faces.* I can't tell you how nice that is. Got to hold Ray for a long time again today. I can become addicted to that and try to balance the time and not neglect Nora. I can't wait until I can hold her as well.

I finally talked to my disability claims manager who said no way can authorize more than 8 weeks which puts my go back to work date at August 6th. The babies will either not even be home yet or just home. No way will that work. I said, fine, put me back to work now so I can have time after when they are home. She said, no can do, the time is for your recovery of the c-section, not to take care of the babes. I got (understandably, in my own mind) upset over this. She said, it sounds like your under a lot of stress (you think?) But, basically was saying "take the stress leave angle", which really is the bottom line truth of it. So, I got myself into that system. Need to write an email to my bosses giving them and update, telling them that is my plan and if it doesn't work I'm hoping they can work with me somehow because really, a mom deserves that time with her babies, especially after having to wait so long to have them home. But, I'm not up to writing that right now.

Max was up at 4:30 am this morning, which means I was up at 4:30 am this morning. And, that he was awake when I pumped this morning. Of everything, this seems to bother him the most. Today's behavioral issue was throwing all the bottled water from the cupboard onto the floor, coming to tell me about it, and asking me if I wanted to see it. I told him after I finished. Then, had to get him to clean it up "In our family, we clean up after ourselves when we make a mess; I'd like to do something fun with you, but you need to clean up your mess first; Max, please clean up your mess." and other such tactics were used until he eventually did it. I so didn't feel like the battle, but can't afford to let him get away with that behavior or have it escalate. I left the hospital a bit earlier than I have been to spend a bit of extra time with him. I'm trying to give him as much direct attention as possible (as in my complete focus with no phone, email, computer, mail, etc) when I am with him.

A friend stopped by the hospital a bit and dropped off a nursing shirt and more importantly 2 pumping bra's so I can go hands free (Thanks M! They fit/work perfect, just perfect). I can't tell you how much nicer that is. I can eat and more importantly drink water or make phone calls or browse the internet or check email. The quality of my life improved significantly today as a result of these handy dandy bra's. I can't even tell you. I actually have pumped 5 - 10 minutes longer than my normal 20 minutes because I wanted to finish what I was doing before disassembling and detaching from the pump.

One more pump session that I'm counting the clock for and then it is beddy bye time for me. I'm ready now.

* The nurses cover the isolettes (the plastic boxes the babes are in to control temperature and filter noise making it more of a womb like atmosphere) with blankets with the bili lights off. I got permission to bring in two lovely home made quilts that a friend just gave me to put over them. Way nicer than the generic hospital fare. Thanks again, A, there getting put to good use already.

Wednesday, June 18, 2008

Week 1

Today was a roller coaster of a day, just like it has been a roller coaster of a week. The lows have been low and the highs have been week. Lots of stuff deserve a mention, but I'll have to save most for another day. I'm just too darn tired.

The lowest low: Max started his new preschool today. It is a summer program where the kids go two days a week for 2 hours. I had thought we would miss today because of Max's LAUSD assessment, but it ended early so I headed over to the pre-school. I got there just as they had joined the mom's into circle time for introductions, where I started crying as one of the things they wanted you to mention was other siblings, but all understandable and another mom that I have seen in church came up after to talk and give her support and tell about how one of her twins died in utero after PTL because they didn't believe her for a week. Anyway, I digress. Max LOVED, LOVED, LOVED preschool. I thought he would. So, where's low? When it was time to clean up, he just lost it. I have actually never seen him cry so hard in public, let alone at home. He kept saying he didn't want to go and he wanted to come back and no matter how many times I told he got to come back, it didn't help. He was inconsolable. I just hugged him and hugged him and we both cried. It really broke my heart. He's been such a trooper, but the stress is starting to get to us both.

The highest high: Because we went to the preschool , I got home later than planned and still needed to bump (it had been 4 hours by then) and eat (running low on food) and get out of the house to catch a good friend who was visiting the babes this morning before she had to leave (Didn't happen. Sorry C, thanks so much, can't tell you how much it means for you to take time out of your busy, hectic life right now) and to get there before another friend who wouldn't be able to get in without me. I was so tired and stressed and Max was fighting with me while I was trying to pump by trying to pull off the pump and I didn't want to go and just wanted to nap and was trying to figure out when I was going to get some down time which is like never. I was crying and figuring I'd just spend the time bawling over the incubators. I got a hold of the friend I was supposed to meet and ended up picking her up instead of meeting her. She was like my little angel today (Thanks A! Thanks! Thanks! Thanks!) Just having someone else there made all the difference in the world. But, that's not my highest high. Look below. I got to hold Ray today for the first time. I couldn't believe it when the nurse offered. I was so happy I was there. That no matter how tired I was, that I made the effort. I can keep doing this. It was the boost I needed.

Ray - Week 1 - First Time Being Held By Momma

Nora - Week 1 - Holding her own. Momma can't wait to hold you too!

ps. Please notice the smile instead of the crooked bangs that I cut within hours of being home from the hospital that I haven't had time to fix. :)

Tuesday, June 17, 2008

Milk, Milk, and More Milk

My grandparents used to have a dairy farm. Can't help but feeling like one of their cows these days. All for a good cause. All for a good cause.

6 days in and I have pumped for 855 minutes (14.25 hours) and produced 1,068 cc's of milk 386 of that today. Yes, my production has seriously gone up.

Ray's feeding schedule have been increased to 6 cc's every 3 hours (basically, 8 times/day).
Nora is currently on a 2 cc's every three hours.*

Their total consumption is 24 cc's/day. Yes, I am easily able to produce more than what they need right now, but I need to get and keep a nice solid milk supply and I need to get ahead of the game while I can. There are two of them and their amounts are going to continue to go up and at some point, my supply is going to max out.

One of the breast feeing consultants said I should be pumping every 12 hours and about 10 - 12 times per day going no longer than 4 - 5 hours without pumping (for sleep). Yeah right. Anyone who says that is crazy. I'm getting in, on average 6 or 7 and don't see how I can realisticly increase that unless I don't go visit the babes and I don't sleep and I don't give Max any attention at the start and end of the day. None of that is going to stop so I'm just doing the best I can and sticking with MY plan. So far so good. But, I'm tired and tired of it. Can't tell you how much I dread pumping even though I know it is a necessity at this point. It is one of the few things I can do for these little guys so I'm just plugging away. Having all the stats (which are now entered into a spreadsheet) helps with that.

Last pump session of the day is complete. Now, time for some much needed sleep. Another long, busy day.

* Did I mention that she was started at 2 cc's every 6 hours, then was taken off. I found out this morning that not only was she put back on, but every 3 hours. She seems to be tolerating it well this time.

Monday, June 16, 2008

This morning seems so long ago

Today has felt like such a long day that this morning seem so long ago it almost seems like a different day. Not long in bad as much as in long in back to back with no time to sit and stare into space or even get on the computer (oh, the horrors...based on my current and predicted schedule, my computer time is going to be limited so don't freak if I don't get an update in...this is my therapy and place to process things so I can move past them so if anything major happens, I'll post)
1) First me - Had staples removed today. Incision is healing fine. Go back next week to check and remove the "tape". Physically, I'm healing just fine. Took Tylenol first thing this morning (like 5 am?) and then again just before my OB visit. This morning was still very emotional and I broke down when Noemi came and was asking after me and the babies and I was showing her the pictures. I'd be fine for awhile and then in 2.5 seconds I could be back in tears because of something I thought or something someone said. I didn't get to spend as much time in the NICU as I would have liked because traffic was bad (three lanes closed due to a truck fire) and the OB appointment, but the time I did spend there was pretty much tear free and actually kind of peaceful as I went back and forth to visit with both babies. I had a chance for a short nap after the NICU visit while Max was at swimming lessons and it really made all the difference. No tears and meltdowns all evening. I needed a break from the drama and pretty much avoided any situation that had the potential to upset me. I also had (well, not quite an epiphany) what I'll call an "ah ha" moment in realizing that all new mom's have the tears and mood swings, but most have the luxury of doing so in the privacy of their home only around family and friends . Since I have to be out and about at a time when no new mom should, my emotions are on display to the general public I must encounter.

2) Max is doing fine. He woke up early while I was in the middle of pumping. He handled the first part well, but started to loose it (trying to touching all the buttons, turn off the pump, pull the breast shields and/or tubes off) towards the end. Then we got up, had an early breakfast and walked his babies around the block with Shadow. I was ready to lie down by then and he climbed on the bed and we cuddled while he watched TV and I dozed and it was just what we both needed. Tonight, it was just us for dinner and normal play. He was a tad whinnier/demanding than normal, but really not bad especially considering he is fighting a cold/cough and this is the first night in almost a week that it has just been him and I doing our normal stuff.

3) The babies are doing fine. Nora continues to be a typical 29 weeker with typical 29 week issues. They stopped her feeding because of some browning discharge that the doc (need a short abbreviation to use for a neonatogist) thought may have been some old blood that she swallowed during birth. They no longer hear a heart murmur so hopefully that PDA issue has closed off. If so this should improve her breathing. She's still on oxygen. Basically, she's holding her own and not doing bad, but hasn't really moved ahead yet either. Ray is like the super star 29 weeker and doing really well. The doc said that if he ever had a child that was a 29 weeker, he'd want him to be just like Ray. They have increased his feeding to 5 cc's every 3 hours. The way I calculate it, about 40 cc's a day. I'm able to keep ahead of the milk curve and am getting an average, about 40 cc's with one pump session. I decided I'm going to enter the milk production data into an excel sheet so I can chart it and analyze the data, just because I like to do that kind of thing and it keeps me motivated and competive with myself. Hey, pumping is a drag, but oh so necessary so I need something to spice it up. So, look forward to day over day percent increase in volume, total volume produced, and other such statistics for the nerd in me.

Speaking of milk production, time for the 11 pm pump session I really wanted to get in before some much needed sleep. I wasn't sure I was going to make it.

Sunday, June 15, 2008

I'm home

I'm home and tired and can't sleep and can't even cry myself to sleep. No Ambien for me tonight. With it, I was at least getting 4 hours of sleep in the hospital. Even if I had some, I don't think I'd take it while home with Max because I'm not sure I'd wake up if he needed me to. Probably, I would, but I'd never chance it. I just took some benedryl. Maybe that will help. I kept dozing off while pumping. Yet, as soon as I froze the milk and got back in bed, I just couldn't drift off.

Both my sister and Max are coughing. All I can think and pray is that I don't get it because then I couldn't see the twins. Overall, my home coming was fine. I didn't start crying until I had offically gone to bed for the night. The presents for Max from his sister and brother was a big hit. They got him twin little doll babies with a stroller we can't figure how to get the wheels on, and a doll accessory kit with sippy cups, bottles, a diaper, bibs, a "potty" and things like that. He took them to bed with him.

Here is a picture of Nora and Ray just before I left the hospital. They took off the bili masks so I could snap away. Today was the first time I got to see them open their eyes. Normally, there faces and heads are covered since they are under the bili lights for jaundice.

I think the hardest part of coming home was feeling like to everyone else the twins don't exist because they aren't home with me. My sister who picked me up was freaked out by seeing them, not that she told me this, but she barely looked at them, get close to them or talk at all the entire time we were in the NICU. I tried not to look at the expression on her face. It wasn't quite revolution. The sister that was watching Max didn't ask after them, to see a picture, or really acknowledge them in any way. Out of sight, out of mind. I should have stayed off the computer. My cousin who I was so looking forward to coming basically said she wasn't sure she wanted to come the entire time, did I really need her, and her daughter and friends were complaining she was going to be gone for so long. I responded that I didn't want her to feel like she was a hostage by my situation, that she should make whatever plans she wanted and I would readjust based on that, and that I'd be happy for any support and help she wanted to give. I told her that I was really looking forward to her coming next week, but to let me know ASAP if she wasn't so I could mentally and emotionally adjust.

I'm just feeling raw and tired. I want the twins to be "real" to everyone else too even though they can't see them. I want other to care and ask how they are doing and be interested that Nora was given breast milk today and all the other silly little details of their progress.

I've decided that I'm going to take pictures each Wednesday to track their progress.

I must sleep. Tomorrow is another long day.


Back to the little things....

My milk production is up. I'm getting about 30 cc's from each pump session. I'm feeling really good about this. It's one of the few things I can do, provide my milk for my babies. Having the neonatologist impressed made me feel even better. The topic came up when he told me the medicine seems to have worked; Nora's heart murmur is gone; and, she is going to begin food, but he is only going to give her breast milk. I've been able to stock pile the last day or two and my production is up so we will see if I'm able to keep up with demand. All good news there.

Ray is getting food three times a day now with a schedule of 9 am (which I was there for), 1 pm and 5 pm, basically every four hours. I made a point of checking the schedule, keeping my eating and pumping on a schedule (forgoing a shower) to make sure I was back in the NICU at least 5 minutes before 1 so I could be there for it. And, the nurse had already fed him. Bam! Just like that I was in tears and down. What was to be the highlight of my day, is just something else that needs to get done and off her list. I get that, but was still very disappointed. So, I changed his diaper, said a quick hi to Nora and came to have a good cry in the shower. I think she felt bad and made some comment about how I'll get to do a lot of that in his future. I get that. I realize that she thinks it is no big deal, and for her it really isn't. It's about 20 seconds in her day. Nothing, less than nothing to her. She gets to do so much and I so little for them. I was disappointed and am not going to feel guilty for feeling and showing it. She told me 1, I was there before 1 and it is done and over so I'm letting it go. There are very few things that I get to do that make me feel like a mom right now. That's one of them.

My sister just called. She's on her way and should be here in an hour. I'm going to go spend it in the NICU probably crying. Then, the dreaded pack up and leave.

Oh, this is hard. It is a roller coaster. It is emotional and I'm not going to pretend it isn't no matter how uncomfortable the emotions may be for others to see. I'm allowed to go from happy to sad and back again in 2.5 seconds. I just need to take a deep breath, remind myself that, and allow myself to feel.

The Price of Parenthood

I've been thinking about the price of parenthood lately, both in terms of actual dollar and cents costs as well as emotional. There is someplace web sight or organization or such that calculates the cost of raising a child over the cost of their lifetime factoring in things like shoes, clothes, sports dues, college, etc. I don't remember the exact number but remember it being pretty high like heading up to a million dollars. I wonder what they would do with situations like mine. If you count the actual dollar and cents just to conceive (DE/DS IVF cycle via an agency) and bring baby home costs (with the extended NICU stay), Ray and Nora have already cost a fortune and will just keep adding on over the next few months. We will just leave out the child care costs anticipated for the first year which I had me operating in the red.

Hospital stays in general and NICU stays in particular are expensive. Very expensive. Thank God for a good job with good benefits and good insurance with yearly caps on dollar amounts owed. My insurance isn't as great as it was a few years ago and changes they have made over the last few years are more in their favor than mine, but still the insurance I have is still really good and will make it all manageable for me from a financial perspective. My portion of financial responsibility will be a drop in the bucket compared to the total cost of care. It will pinch and add pressure for sure, but will not put me over the edge.

The birth of one child is emotional enough. I remember getting weepy after Max and just sitting bawling because he had jaundice, needed daily blood draws, and was on bili lights. The early birth of two children with a long NICU stay brings the term emotions to an all new level. The thoughts of going home without them killing me inside and tears of dread and sadness. Yet, the incredible tears of joy when the night nurse let me hold the feeding syringe and let me "feed" Ray last night on the other side of the emotional scale at the same time. As I learned from having Max, being a parent is an emotional roller coaster at the best of times. As I'm learning from the twins already, it is more than exponential leap.

I find myself thinking, I can't wait until xyz....where xyz may be having us all at home or getting a family portrait (or at least attempting to) or yelling at the kids for doing some normal kid stuff that just had to be done. As I keep thinking of the next few months as just something to get through, I realize the entire pregnancy I have been thinking that the few months are just something to be endured, the first year something to be survived. It's something I've been guilty of in the past and need to remind myself not to "wish my life away". I need to ground myself and appreciate the todays today as well. As hard as today and tomorrow and the tomorrows after that may be, they are meant to be lived with all the emotion that goes with living them, not something to endure.

Just as I had to learn to parent Max based on the child he was and is, I realized last night I'm just going to have to redefine my picture (and dream) of early parenting of the twins. Parenting doesn't just mean cuddling our new born to your breast in the early days and bonding. For the twins, it is going to look a whole lot different and just quietly sitting singing and talking to them (no matter how stupid or awkward I feel) or holding their feeding tube or changing their little itty bitty diaper or whatever else that will be to come. I'll adjust and get better and more confident. I'm already much more so today than I as even just a few days ago.

I'm sure I'm rambling at this point and want to get on with eating and pumping and showering and going to go see those babes or mine and already feeling so sleep deprived and tired, but my point in all of this is that despite the monetary and emotional toll or maybe that is because of it, it is all, as the commercial says, "priceless".

On this fathers day where I'm in a family situation of being both mother and father to three children, it all feels a bit surreal at the moment. It also feels like I finally have my family and it is complete. Yes, still in a bit of a disjointed disconnected way since we are not all home together, but complete none the less. And, while I'm not ready to leave without my babies, I'm ready to be home figuring out the new normal.

Saturday, June 14, 2008

Looking ahead...

Looking ahead to tomorrow...yes, only until tomorrow...can't look much past that at this time...I'm going to do the hardest thing I've ever done and I've had to do a lot of hard things in my life. I'm going to have to go home without my babies. If it weren't for Max at home who needs me and hasn't seen me, I don't think I could do it. There would probably be some big news story about the crazy lady who refused to leave the hospital. As it is, it is already breaking my heart. The only worse thing I can imagine is loosing your baby while here and knowing you never would get to bring them home. My heart is hurt enough at just the temporary separation. I don't know how the mom's make it through for which that isn't even an option. Leaving without them is wrong on so many levels. Never being able to leave with them is just incomprehensible.*

So, I guess I need to remind myself that I am woman and I am strong. I will get through this. I'm grateful that as long of the road to home will be for my babes, at least it is a road we get to travel. I'm grateful that I have today and tomorrow here, cause the truth of the matter is I really could have physically gone home today, to pop over all day and night for visits and to drop off milk. Still, it's going to take every fiber of my being tomorrow to pack up, check out, and actually get in that car to go.

No one ever said life was easy. Some days are easier than others. Tomorrow is going to be so hard for me I guess I need to start preparing today.

* And, yet, sadly...IRL I know several women who have had to do this (one twice actually) and while I knew it had to be hard for them, my level of understanding is at a whole new level. I really don't know how they survived, but they have. If they can survive that, I can survive my temporary separation. But, surviving and not having your heart broken and being an emotional mess are not the same thing. It is going to take everything I have to walk away.

The Lil' Things

I woke up and seriously thought of just going back to sleep after using the potty. But, rallied and pumped my best output yet 5 cc from each breast and walked it over to the NICU thinking I'd just go in and spend 5 minutes with each child before trying to get more sleep. The nurse told me Ray was going to get his first breast milk/feeding at 3am. Forget more sleep, of course I stayed. While I was there, I got to change both of their diapers. I almost started bawling in joy. Something so small that I would have just taken for granted. I can't tell you how happy just being for that meant. As I told the nurse, just the picture and extra motivation the next time I set up to pump. Cause lets face it, pumping can be a real drag sometimes. Next feeding is at 9 am. I'll be there. It all made me actually feel like a mom to them instead of just not so innocent bystander.

Friday, June 13, 2008

Day 3

My sense of time and place is a bit off right now where I'm getting confused on the day and each day is basically non-stop except for a few hours of sleep at night. Today, was my "sore" day as things are settling and healing so I took a bit more pain meds than I had been. Once I'm up and going, I'm fine, but slow. The getting up and going and down and stopping that had me wincing a few times. All normal. I expect a bit of more of the same tomorrow, then Sunday to be on the up curve.

I came off the IV line this morning. Granted, I asked the nurse to call the OB's office to get permission and it was granted. It was so much nicer to just be able to walk (granted slowly) where I wanted to go. Met with the OB about lunch and things look fine with me. We agreed I would stay the maximum I could which will be Sunday afternoon/evening even though I could probably go home tomorrow. However, I want to be able to stay as close to my NICU babes as possible for as long as possible so I can continue to bond with them and the NICU staff. The OB on call is the newest OB in the practice and, as is my style, I told her that I planned to blatantly ignore the no driving for however long rule. We went through the risks (which I have done with past docs as well) and easily agreed that I would not drive if I was still taking narcotic based pain meds or in pain such that it would affect my ability to break hard if needed. Both easy things for me to agree to as I would not put my life or that of my children at risk. I didn't come this long and far to be stupid. Anyway, exit plan is in place which makes me happy. She also told me of some rooms here that can be used to stay over night if needed. Probably, I wouldn't use one of them because of the Max situation, but something to keep in mind.

On my first visit to the NICU today, I found out that both babies had moved into Room B. It's an upgrade or sorts (or would that be downgrade?) basically they were doing well enough to be moved to a more calming environment. I still got a bit weepy once or twice, but over all am getting more used to everything and not being afraid I'm going to kill them if their alarms go off when I'm touch them.

Ray is doing really well. I'm too tired to get into the details, but he's being upgraded to a feeding line and they are going to start feeding him tonight. This seems to be the next big milestone. And, if that all goes well, I think I may get to "cuddle care" with him soon.

Nora isn't doing horrible, but she's days away from the feeding line and feeding. The neonatologist heard a heart murmer and she had an u/s by a cardiologist who was still there at my last visit and drew a picture and explained everything to me. Bottom line is that what he saw is very common in babes of her age and treated by medication tonight for treatment and she will be re-evaluated in a few days to see if another dosage is needed. He saw another mild issue that should resolve within the first year if not sooner. Anyway, this heart thing and breathing thing have to be resolved before she can even get to where Ray is.

Anyway, I'm really tired so not sure if this is making sense, but things are getting easier and less scary for me in the rooms. Overall, they are both doing great. Overall, it was a good day for us all. Oh, and Max came to visit me and I hoped that he could at least see his brother and sister through the window. Mostly, because I want him to understand that they are no longer in my tummy. I think he and I could have was visited a bit longer, but alas...the time to go happened all too soon. Must go to sleep soon before I nod off my sentence.

Thursday, June 12, 2008

Introducing the twins.....

Here are my beautiful babes. A tad hard to see the beauty under the tubes and wires, even by their momma....probably especially their momma who just wants to be able to pick them up, speed up time so they are healthy and ready and wisk them home. It's been an emotional day. In part because I didn't get to see them until 10:30 or 11 am today. I just heard that the babes were doing so well that they were going to un-tube them so maybe better pics soon.

Nora Grace

Ray (middle name TBD)

Wednesday, June 11, 2008

Happy Birthday!

Baby A (boy) was born at 6:40 pm on 6/11/08. He weighed in at 2 lbs 11 1/2 oz, 16 inches.

Baby B (girl) was born at 6:42 pm on 6/11/08. She weighed 2lbs 12 oz, 15 1/2 inches.

Names are still TBD/

Both are reportedly doing well with issues as expected for gestational ages and nothing serious so far.

I'm doing fine. I'm so darn hot and sweaty and vomiting up a storm even without having eaten and drunk in over 14 hours. A bit emtional at times. I saw each baby for a second or two as they were taken out of my tummy. I'll be able to see them tomorrow one I can get up and about. The NICU took and brought my a few pictures of both, which is great and thoughtful. And, in looking at them and the need for them and knowing that even when I do see them tomorrow I will only be able to touch and talk to them, but not hold them and cuddle them in.

12 Hour Update

It has been 12 hours since my water broke.

No sign of active labor. A few contractions here and there.

I'm thirsty. I'm hungry. I have a head ache. I'm tired. At least I am no longer boiling hot and the room is starting to cool after a thermostat adjustment.

My sister stopped by and we got all the arraignments set for Max and picking up Shadows meds, and a few things I'd like done like getting Max presents from his new brother and sister.* I think we are good until at least next Thursday with coverage, then my cousin comes on a week from Sunday.

Being monitored so much is a PITA. It's hard to keep both babies on the monitor so I try not to move much, but still they will fall off. And, even though I can't drink a thing....boy, a nice tall glass of ice water sounds so good and refreshing right now....I'm on an IV drip so I have to get up to pee which is a challenge with all these cords, I leak fluid all over everything, and ever since the u/s this morning, I think boy baby's head is on a nerve or something on the left side of my pelvis causing pain when I get up or put pressure on it.

Emotionally, I'm doing mostly fine. I get teary when talking about or to Max. He called a bit to talk to me and tell me that he had Mac N Cheese for lunch, that he was playing with his comona (sp?) train, and he had a big poo poo this morning when he woke up and Aunt Kris was here. You know. Important stuff. Mostly, I really want this show to be on the road and to just deliver these kids already on the one hand, but then know how important every hour and day is at this point for them to stay inside and I feel guilty and know I can and will suck it all up until the doc says its time. Plus, I haven't talked to teh doc and haven't seen teh doc and the nurses know little and I want more information, not that it really matters, but I'd like to read the u/s report. I'd like to know what my labs were last week. I'd like to know if I'm dilated and if so, how much but don't think they will check that since there is really no point since I won't have a vaginal delivery anyway and it will introduce more opportunity for infection. I'm an information kind of gal and just like to know regardless and that's not the way hospitals work.

So, I'll lay here and try to keep my mind off of things and take things minute by minute. I wish I could say I'm enjoying my last bit without the twins in my life, but in truth, I'm not. Probably, I won't be feeling better after they come either with the c-section recovery, the hormones, and ssing my little ones born too darn early and hopefully not fighting for their lives.

I can do no more or no less than just wait, wait, wait. What will happen will happen soon enough.

3 am, 6/11/08

Will today be my babies birthday? For that, we will need to wait and see. My water broke at 3 am. I stared in disbelief wondering what the odds are was wrong for about 5 - 10 minutes. Figured I probably wasn't so called OB, sister, and friend in that order. OB said go to Labor and Delivery STAT. Sister said she'd come now. Friend arrived a few minutes after sister and accompanied me.

I am currently hooked up to every monitor known to man. I was allowed breakfast and am now on a "nothing by mouth" until further notice. An u/s was done, but I have very little information from it other than one baby was 14.97 g and the other 14.50 g. Haven't had time to convert to lbs.

The current plan is to monitor me to see if I go into active labor. I was told I was having contractions about 10 min. apart when in L&D. With all the activity of getting admitted and moved back to the High Risk Unit, we haven't gotten a good strip, but I am starting to feel contractions. Once I go into active labor, they will not try to stop it with Tributlane. I will have a c-section to deliver the tykes.

More to come.

Tuesday, June 10, 2008

Mind Games

Mostly, I have been very zen and calm about this whole possibility of early delivery and pre-term labor.

Partially because I strongly suspect the same thing happened when I was pregnant with Max when I didn't go into active labor until we induced by breaking my water at 37 weeks. * Now, granted, this is a much more high risk pregnancy, with more issue, but I was more active then hiking at least an hour every day with a head in the down and ready pressing on my cervix for quite a while as well. So, I'm thinking and hoping the same thing may happen again. I will fully appreciate the irony if I never go into active labor and we decide to induce again (or schedule a c-section). Part of me wishes we had checked me earlier last time for a baseline. Part of me is glad we didn't so I can hold on to my delusions, if that is what they are.

Partially because, really, there isn't much else to do but take it easy and wait to see how it all plays out. Like most of my life, I will live in such a way that I will have no regrets if I do go into PTL. Even as I know that studies have not shown bed rest to really make a difference and is prescribed as more of a "can't hurt and may help", I will comply as best as possible since the stakes are pretty high at this point.

Having said all that random thoughts do challenge my serenity at times. Such as.....
  • What if I really am having contractions and just don't realize it?
  • When is the last time I felt the babies move? What are the odds that the steroid shot could have actually killed them instead of help them develop faster?
  • Can the babies grow faster than my uterus can expand? Any chance it will just explode like a balloon?
  • Too much amniotic fluid can be a problem, maybe I should go read up on why that is and what causes it because I don't seem to be pee'ng out as much as I'm drinking in right now.
  • Is that mucus on the toilet tissue or just a shadow? Have I lost my mucus plug?
  • I'll not be surprised at all if my next appointment shows that I've started dilating because when I sit to pee it just feels so open and like something, namely a baby, could just slide right out. Thank goodness you have actually gone through labor and know that it doesn't really happen like that, or at least the odds are pretty darn low, probably low enough that you don't need to keep the phone by the toilet to call 911 just in case.
  • But, you don't even know if you have started dilating, you could be/probably just are psyching yourself out. Just wait until Thursday's appointment to see what's up.
Even with taking it all in stride, can't help but worry a tad bit here and there, but mostly just getting on. Now, if I really do start having contractions, I'll probably flip out and all semblance of calm, cool, and collected will be gone. Just enough of a healthy concern to keep me in line and taking it easy.

Can you believe it is already over a week since I was put on bed rest? A week since election day and the start of my hospital stay. It really has gone much faster then I ever thought possible.

* Since it wasn't a high risk pregnancy, the first time my OB checked was at 34 weeks and only on a whim since every pregnant woman she had seen that day was dilated, presumably because of some low pressure system coming through. I was 100% effaced, 4 cm dilated, and Max's head was "right there". I was put on bed rest from weeks 34 - 36. When she let me up, she offered to send me over to the hospital and to induce and have the baby before the weekend. I declined, did a bunch of things, decided to induce a week later for a lot of reasons. I was 5 cm dilated when she broke my water about 2:30 pm on Wednesday, August 17 and Max was delivered at 11:01 pm.

He has a point, there....

Remember, Max isn't bossy. Opinionated, yes.... Directive, certainly.....

Last night, we were eating dinner. Well, I was still eating. Max was finished and as he was getting up from the table, I asked him to go get me a tea from the fridge. He goes to the fridge, gets a water and brings it back to me telling me..."No tea tonight. Only water. It's good for you." What could I do but agree and drink my water?

This morning, which went much better than yesterday by the way, I just went on the computer for a minute or two (I swear) to check email. My little overseer was all over that. He came and closed the computer, put on my reading glasses, got me a book and told me to read a book instead. When I started to read it to him out loud, I was told "no talking". Sigh. Yes, yes, again, he did have a good point and reading a book is setting a better example than being on the computer.

Egads, point or no point, right or not, the kid is not even 3. I think he may be insufferable as he gets older. Good thing I am usually an easy going kind of person most of the time. :)

Monday, June 09, 2008


I have to say, I'm feeling incredibly crabby today. Contrary to popular belief, or my own personal misconceptions, when you are not working and doing bed rest (especially when doing it incredibly well, or maybe that's in spite of doing it well), it is not a nice relaxing time where you can get a book read or a show watched or really anything on your "to do" list actually done.

It doesn't help that since I napped yesterday I couldn't fall asleep last night and then after I did fall asleep, Max woke up 3 times and then was up at 5:30 am for the day. Boy, it was a looooooonnnnnnngggggg 3 hours before Noemi got here at 8:30. We made do amusing ourselves by climbing over pillow mountain, burping on Mommy, playing with the cell phone, and other such fun filled games and activities. Thank God Noemi did come though, if nothing else because the house is back into decent shape.

It also doesn't help that my room is the hottest in the entire house.


This complaint interrupted by a visit from a well meaning neighbor (who talks far too much and long) and by then Max will be home from swimming. So, more later. All basically well. I just need an attitude adjustment.

Sunday, June 08, 2008

Just Hanging

All is going well here. Just hanging out and taking it easy. My mom was here from Friday night until Saturday afternoon to help and a friend from Saturday afternoon until this evening. Max is off on a day adventure with the friend for most of the day. As much as I love him and seeing him, it is much easier to rest and relax when he isn't in the house.

I'd say I'm doing quite well with taking it easy and think those helping would say I could be doing better and am up too much. The thing is, you get zero credit for not doing all the things you think about doing and don't and dinged for doing what anyone else considers too much. It's somewhat of a loosing proposition. I do have bathroom privileges, allowed up at meals, to take a shower stuff like that. And, they want you to stay hydrated. The more you drink, the more you pee. Just the way it goes. I'm not contracting at all and haven't had any contractions at all. The precaution is keeping the weight off the cervix as much as possible, which I am.

As predicted, Max had a tiny melt down on Friday night when he saw me and we both hugged and cried a bit and moved on. He's dealing well with it all and having fun with all the company and helpers, but also not really getting why momma is just sitting around so much (when I am normally rarely sitting or laying down). Yesterday, he came up to me and did something and said he wanted to make me sad. I asked him how come and if I had made him really sad when I was away and in the hospital and he said yes. I told him that made me sad too and that I was going to at least have to go back in the hospital one more time when the babies were born, but was going to do what I could so that was only for a short time by listening to the doctor (and keeping my feet off the ground as much as possible). Then, he played doctor and asked me about the doctors and their names and moved on. I think it is sitting back there worrying him a bit, but he's 2, social, and easily distracted and there has been a lot going on to keep him distracted.

Now, my dog Shadow has not been doing so great. She's been having a major anxiety attack since I got back and following me around and panting and driving me a bit crazy actually. She typically doesn't like to be in the same room with Max these days because he's loud (and does this high pitched noise he calls his soccer team noise that hurts her ears) and energetic. However, she doesn't want to leave my side so is skittish and high strung which just isn't like her. Not sure what's going on with that and will keep my eye on it. She does seem to be settling a bit. Maybe a combination of me being home for a few days and getting out front for a short walk last night and a longer walk this morning helped.

Anyway, don't really have much to say. Not doing much. And, not getting much computer time with so many people in the house. After Max and my friend left this morning, I took a nice nap, ordered groceries on line, and here I am.

I think things will settle in for the week. We will get a new routine and flow going with the changes in my schedule and activity level. My next appointment isn't until later in the week. It's actually not scheduled yet since the computer was done in the office on Friday, but am going to try to get it for Thursday. I'm guessing and hoping things will be nice and quiet until then. In the mean time, with the thought of so much extra free time on my hands, it's hard to get motivated for anything much. I do have a "to do" list to work through starting tomorrow (Monday), but don't is all phone and computer based tasks.