/ The RE's Muse: February 2007

The RE's Muse

After 4 years of infertility, 2 surgeries, 1 miscarriage, and 19 months of high risk pregnancies, hubby and I now have two little women in our lives--one a toddler, the other not far behind. Buckle your seatbelts, it's gonna be a wild ride.

Tuesday, February 27, 2007


The tide goes high, the tide goes low. For me these days, there are a lot more 'low tide' moments than there are high tide. And the saltwater flows, oh yes, it does, usually several times a day.

I'm definitely traveling a slippery slope here. One that I'm giving my all to, trying my best to scale it, and I think I can say with all confidence that it's not working.

I'm dealing with some major thoughts and anxieties here. I heard you all on how it'll take time to heal, to find a "new" me, to come to terms with what I've been through recently. Thank you, each of you, for sharing your thoughts and experiences with me. It is reassuring to know that I'm not alone and that my thoughts and feelings are somewhat typical given what I've been through. And though I'm not alone, I'm starting to realize that I can't 'go it' alone this time.

My postpartum OB appointment is next week. I think I'm going to have to let it all out. I just know that when he asks me how I'm doing, I'm going to crack and lose it. It's not going to be pretty and you know what? I'm embarrassed to tell him the truth (also, my OB has called me every 5-7 days or so for the past few weeks to see how both I and Daniela are doing and I've always told him that I'm doing "pretty good"). To now turn around and tell him that I'm not processing all of this very well seems to me like admitting failure.

But the truth is, I'm not doing so well emotionally. I've been trying to take things one day at a time, but it's hard when you've got future days to think of--namely, we won't know until Daniela is at least 3 or more months old if she's progressing normally developmentally.

I keep mulling everything over in my head, wondering where things went so wrong, knowing it's likely we may never know where things went wrong (though--and this is the first time I've brought this up here--there is the possibility, and one that can never be proven medically, that a local injection made by the OB into my perineum as Daniela was close to crowning may have nicked her head, gone through a soft spot, and caused the bleed). And know this, if that was indeed what happened (though like I said, it can't be proven), it was an accident, and accidents happen. I place no blame on anyone (other than myself it seems, good lapsed Cath0lic that I am).

Yet, all of my musing and mulling keeps drawing me back to the same question: why me? why us? why after everything else, why this?

Why, why, why...like a petulant child (and believe me, we've got one of those here already, in the form of Miss J who seems to have hit the terrible twos a little ahead of schedule, courtesy, I'm sure, of everything that's going on lately).

Yes, I'm babbling now, aren't I? Back to my point...I'm floundering, trying to make my way. It's just that I think I need a little more help in the form of pharmaceuticals perhaps. We shall see. The hard part is coming...admitting to the OB that I need help. Perhaps the sooner I get help, the sooner I can begin to heal, and to move on, embrace the new chapter of me that's here and that's to come.

I can do this. I will do this.

Friday, February 23, 2007

Trying to find me

We can be honest here. And being honest here means that I have to tell you that I'm having a bit of a rough time. Physically, I'm feeling almost 100%. Mentally and emotionally, not so much.

No, it's not the new baby, nor is it balancing home life with a newborn and a toddler (though, by gosh, no brainer, it's not easy). It's just...I'm not sure who I am these days.

That probably sounds weird but think about it, I've spent the last 6 years embroiled in the quest to grow our family (aka TTC). Now that we've got two lovely girls in our lives, I'm just not sure where I go from here. It's hard to get rid of the TTC mindset--after all, it's been a huge part of who I am for so long now--and find/embrace a new mindset, that as mom, and to two at that. It's like a chapter of my life, the reproductive years, is now over and I'm not sure what to make of that, how to process it.

Add to that the fact that my experience with the NICU and those first 12 days was so completely overwhelming and something I never in a million years expected to happen, and I'm really struggling. I feel like I was robbed of the 'typical' postpartum/birth/early days experience and really, how do I change that or accept it?

I can't even look at the pictures from Daniela's first hours after birth, it hurts too much. I see them and I wonder if she was in pain and I feel like a failure for not knowing that something was wrong underneath her 'surface.' They remind me how helpless I felt and how helpless I was. I can barely look at the photos from the NICU, at least not from her first few days there on the vent and whatnot.

I'm not ungrateful for what I've got, not in the least. I know how incredibly lucky A and I are to have what we do, to be where we are, and that things could have been much much worse (really, I can't even contemplate that thought) but still I struggle to accept what has happened to us this time...why it had to happen to us and what it means for me.

Who am I and where do I go from here?

Monday, February 19, 2007

Proof that the universe has a sense of humor

Howdy, how've you been, long time, pull up a chair, sit a spell.

We're about to "GO THERE." Oh, yes, the TMI, the sordid details, the good, the bad, the gross. Ready? If so, join me, won't you? Consider yourselves warned....duly duly warned. We're about to enter uncharted territory on this here blawg.

This past Wednesday, my postpartum bleeding had turned to mere spotting of the darker red variety. Ah, looks like things were slowly returning to 'normal.' I figured a few more weeks of that and then we'd be done.

Fast forward to 8 p.m. this past Friday evening, I'm laying on my stomach (a position I haven't been in for more than 10 months now) in J's room, reading her a book, when all of the sudden I feel like I'm peeing my pants. That's the only way I can describe it, warm, pee-like, odd. So I up and jump to the bathroom adjacent to her room, where I drop my pants and am greeted by the brightest red gushing blood I've ever seen come from my body. After sitting there a few minutes, it relents, I get up, check the bowl and see a lovely piece of what I can only identify as tissue, about 2 x 3 inches. Okay, no biggie. It happens postpartum, flush, leave, think no more of it.

Fast foward to 5:15 a.m. later that night, and I'm woken up out of a sound sleep (well, as sound as it can be when the co-sleeper is on your side of the bed) by that feeling that I'm peeing myself again. My senses are on high alert and I all but sprint over the co-sleeper and into our bathroom. This time, I can feel that it's much worse. I barely make it to our toilet and as I'm in the process of dropping my pants, something I can only describe as feeling huge falls out of me and into the bowl, and in the process it sprays blood droplets on the walls, the bowl ring, and drips a few puddles onto the floor. In the initial spring to the bathroom, I bled through my pad and onto my clothes.

I sit there on the toilet helpless, wondering what the hell it was. I start wiping myself (which proves to be a dumb move 'cause then I can't see whatever it is that came out of me that is now under a mound of TP). I call for A, rousing him from sleep and he comes in. For a brief instant, he lets down his guard and I can see the fear in his eyes when he sees all the blood, but then it's gone. He gets his composure back in check and starts cleaning me and the bathroom up.

I get up but am instantly woozy by the sight of all this blood. Surely, this can't be normal, right? I go sit on the edge of our bed but feel like I'm about to either throw up or pass out or both. I go back to the bathroom and get on my knees near the toilet 'cause I'm about to hurl (now wouldn't that have been someting--throwing up in my own blood-filled bowl? I can't even imagine). After a few sips of cold water quickly brought to me by A, I feel a little better. I get back into bed and promptly call my OB's practice. I get a doctor on call who I haven't seen in two years.

He tells me that he'll call in some mis0ps0st0l because there must be some leftover tissue that my body is trying to get rid of. Hmmm...okay, I've heard and read alot from the lovely ladies in the Barren Bitches Brigade. I know this is not a drug to take lightly, I know it can have some side effects, I know it can cause pain, cramping--some of described it as akin to labor. Yes, I am not comfortable taking this drug without knowing for certain whether or not there is some residual tissue left in me. Call me a baby, a chicken, whatever. I'm terrified of all this blood and of a drug that could leave me in worse shape for a few days or worse, a few weeks.

Mind you, after each of these sudden bright red gushing episodes, my bleeding immediately tapers back off to the light spotting so I'm very confused but thinking that clearly something is wrong 'up in there.' Did a stitch rip open? Did I tear something? WTH could it be?

Fast forward to Saturday evening around 11 p.m. I get up to throw away a banana peel and whammo--same peeing my pants feeling. I run for the guest bathroom and A follows on my heels. I'm in there for a good 10 minutes or so, passing lots of tissue, dripping blood, etc. It's not pretty.

When I'm done, I realize I'm down to my last pad (yes, I know, what was I thinking? in all honesty, I simply forgot to get more earlier that day). So I send A out to the local Walgreen's to pick some up. I call my SIL quickly to give her the scoop on these gushing bleeds and she promptly tells me that she wouldn't take the med without a workup to know what we're dealing with--she tells me to get thee to an ER, stat. Alas, I can't go until A returns from the store because at least one person who knows infant CPR must be with Daniela at all times and my MIL, who's here for the weekend, does not know it.

Now, here's where it gets even more interesting. Not 10 minutes after A has left, I hear the unrelenting jingle-jangle of dog #2's collar as he scratches, shakes, does something in the other room. But then I realize the jingle-jangle is not stopping and I call him to me. He comes and it is clear that something is very wrong with him. He's constantly shaking his head from side-to-side, his rear leg is shaking uncontrollably and patches of hair here and there on his body are doing this crazy stand-up thing. He's been inside all evening, laying on his bed, so it's not like he got into something outside in the yard.

A few minutes go by and he's getting worse. I make a call to the emergency animal clinic and they want him brought in. Again, I'm trapped at home waiting for A before I can go to the ER for me and now before dog #2 can go the animal ER. Scratch that, I'm now trapped waiting for A to get home, then for him to go to the animal ER and get back home, before I can go to the ER.

And that's how I find myself walking into the ER (of the same hospital where I delivered Daniela) at around 1:30 a.m. that night. It's empty so I don't wait long to be called back. And yes, I went alone because A and his bad ass infant CPR self had to stay with Daniela (he and I took a quick course on it before she could be discharged from the NICU).

Six hours later, after much poking (bloodwork, IV) and prodding (transvag u/s and a lovely internal), my uterus is declared "free of remaining products of conception" and I'm given the all-clear to go home. My blood levels are all okay so I'm not losing too much blood. The guess is that there must have been something (PLACENTA--the gift that keeps on giving?) in my uterus and my body eventually cleared it out on its own, sometime before I went to the ER.

I hate to say it, but I actually got home after dog #2 did. Like me, they never did find out what was wrong with him. The ER vet thinks there is a possibility it might be (oh boy--wait for it) a type of cancer that releases histamines which is what caused all of his itching, scratching, twitching and the crazy stand-up hair thing (which was caused by hives). He has an appointment to see our regular vet later this week and have some lumps biopsied.

As for me, I haven't had any more crazy gushing bleeds since Saturday night's (knock on wood) and I'm scheduled to see my OB for a regular postpartum check up in 3 weeks. As a side note, I did call my OB (he gave me his cell phone # after the whole delivery/NICU thing) yesterday and tell him what had happened with me. He said not to take the mis0pr0st0l unless I had another bleeding episode. I gladly went with his advice and the med sits at the pharmacy still, waiting for a pick up that I hope will not happen.

You know, if it weren't for the already-crazy post-pregnancy hormones coursing through my body, I'd be laughing until I was crying...or is it the other way around? Crying until I'm laughing?

'Cause really, enough is enough with this 'when it rains, it pours,' shit.

Friday, February 16, 2007

How she got here (a long--very long--tale)

Okay, so I figured for posterity's sake, I should write down my birth story. Daniela may one day want to know what her entrance into the world was like. It's going to be hard for me to put it all down but I'll do my best (most likely with periodic pauses to wipe up my tears).

Late in the afternoon on January 31st, my MIL joined us as she would be watching J when we went into the hospital later that night. The four of us had a lovely dinner at a local outdoor restaurant that J adores. I kept thinking to myself how weird it was that this was the last time I'd be eating there as a family of three. It felt very surreal.

Fast forward an hour-and-a-half later and A and I are parking the car in front of the hospital, then lugging our stuff inside and up to L&D. This was around 8 p.m.

My room was ready (the last one available of the 12 there) so we started getting settled in. At around 9 p.m., my night nurse came in and did an internal. Wowee--it hurt like the dickens. Of course, my cervix was back as high as it had been earlier in the day when the OB checked me and I was still around 1 cm and 50%. The phlebotomist then came in a took some blood for labwork, and got my IV started. I was also put on the monitor belt to keep track of Daniela's heartrate and my contraction rate.

At around 9:30, the nurse came in an placed the Cervidil. Of course, this meant that I had to lie in bed without getting up for two hours. Tell that to my bladder. By the time 11 rolled around, my bladder was angry :-) but grateful it was finally allowed to get emptied! The cervidil did start some minor erratic contractions but they eventually stopped.

My sleep was fitful but I did manage to get some. Bright and early at 7 a.m. the next day, the new day nurse came in to say hello and get my pitocin started. The contractions got started shortly thereafter but they were bearable. I had told her about my previous L&D experience (particularly about how the epidural had worn off because the nurse waited too long to call the anesthesiologist back) and she was great about making sure the same thing didn't happen to me again.

My contractions got stronger pretty quickly and I was doing my best deep breathing to ride them out. When the nurse came back in around 9, she asked if I was ready for the epidural and I agreed that it was about time. If I recall correctly, I was around 3 cm when the epi was placed. Immediate relief.

The relief was so great that I was able to sleep off and on for about the next two or three hours. Then I was starting to feel the contractions a bit more (especially on the left side of my uterus) so the nurse called the anesthesiologist back to top me off. Bliss, more relief...and more sleep.

Shortly thereafter, my OB came by and broke my water. Now we're cooking with gas.

Fast forward a couple of hours and my contractions are strong, and the left side of my uterus is in agony. Apparently, I have a block that didn't take the epidural so I can feel everything there. It's as if the pain is concentrated in this one area and it is intense. I do my best to breathe through it, repeating in my head, "if I can get through this, I can get through any thing." Maybe it helps, maybe it doesn't. Ironic thing is that I don't realize how much this statement will later come to mean.

Throughout all of this, Daniela's heartrate on the monitor is fantastic. She is tolerating my contractions well and all looks great.

At around 3 p.m., my nurse does an internal and declares me 10 cm and 100%. She calls my OB and lets him know. In the meantime, I start pushing when I feel the urge.

Two hours later, with each push, Daniela's head comes to the very edge of my vaginal opening and then immediately retracts back in once I'm done pushing. I'm giving it everything I've got but this continues for almost 2 hours.

My OB tells me that she's close enough that he can help get her out if I want (trying the vacuum extractor) but I decline and soldier on. The nurse points out some minor bleeding I'm having and a few minutes later, the OB declares that "whatever was tearing is done." He gives me a local injection into my perineal area a few minutes later.

I've now been pushing for a little over 2 hours. Daniela's heartrate has continued to look great on the monitor and she's doing well. I'm tired, I'm sweaty, and I'm determined. I push with everything I have. And what do you know? It works, and I feel her head emerge and then her body quickly follow. The OB declares that he's going to cut the cord so he can give her to the nurses quickly. This catches my attention.

A tells me that she's beautiful and that the baby nurse has her and is getting her cleaned up.

As I lay there, first passing the placenta and then as the OB stitches my tear up, I am focused on the fact that Daniela has not cried. I do not hear that blessed sound. I'm tense, the OB asks me what's wrong. I ask why she's not crying. There's no answer given...but I realize that there are now five people over there working on Daniela, urging her to "come on baby." I am beginning to lose it. A goes over and takes some pictures of her on the warmer and brings them back over to show me. She's divine.

Soon she begins to make noise but it's not a hearty healthy cry. It's a weak mewling sound, erratic, and not very strong at all but I figure it's a cry so that must be good, right? The nurses call out her measurements (7 lbs, 19 1/2 inches long) and she's brought over to me so I can hold her briefly. The nurses then take her to the nursery to get her footprints done, eye ointment put in, etc. A goes to see her shortly thereafter and brings me some pictures.

I'm itching to see her again but I'm so numb from the super-duper dose of epidural that I can't walk so I opt to wait until they bring Daniela in to me. They do this around 9:30 that night and A and I get to hold and feed her. She's irritable and somewhat inconsolable.

In a key piece of FORESHADOWING (unbeknownst at the time to me), the night baby nurse offers to let us keep Daniela in the nursery that night in case we want to get some rest. Now, the interesting thing about where I delivered is this--they do NOT allow babies to stay in the nursery. They are a facility that has the babies room in with the mother. The nursery is basically for handling the essentials--weighing, measuring, footprinting, etc.

A and I chat briefly and he's adamant that it would be nice to get an uninterrupted night of sleep. I could go either way and would prefer her to stay in our room. I've waited this long to see and meet her, I really want to spend time with her. But A pushes for us getting our rest and we tell the baby nurse that we'd like to take her up on her offer to keep the baby in the nursery with her. She is kept on the infant warmer in just her diaper overnight. A brings me more pictures after another visit to see her a little later.

A and I each manage to get some sleep. I'm interrupted periodically for BP and temperature checks and to change my ice pack every few hours. But I do sleep and wonder how Daniela is in between.

At around 5:30 a.m., a stranger in blue scrubs comes into my room. She introduces herself as a neonatologist and tells me that the hospital called her in around 4 a.m. She begins to tell me that the baby nurse witnessed Daniela have a seizure around 4 a.m. and she was called in to consult. After her arrival, the doctor herself witnessed another seizure...she's speaking Greek. It's not computing in my brain.

And then I hear more words: transport to NICU, unknown what's causing them, very sick.... and the world stops spinning around me in that instant.

Thursday, February 15, 2007

Happy love day

Yes, I realize I'm a day late but really...I've been kinda busy recently.

And look who's more and more awake with each day that passes....

I've been contemplating sharing Daniela's birth story here but, in all honesty, it really was rather uneventful...until the fateful delivery portion, that is. I'll mull it over and see which way the wind blows, unless--of course--y'all are just dyin' to know all the gory details :-)

Tuesday, February 13, 2007

There's no place like home

By g-d, was it nice to sleep in my own bed last night with Daniela's co-sleeper mere inches away. Suprisingly, I slept well and didn't at all mind the 2 a.m. feeding.

The monitor has been quiet with the exception of a few "loose connection" alarms but they're a one beep alert and not some screaming banshee of a beep system. I almost feel like we're back to the 'normal' newborn phase again and that the NICU was a bad dream. Alas, I know that it wasn't and that we've still got a slew of doctor visits ahead of us in the next two months but that's a very small price to pay for the delicious little girl who finally came home with us yesterday.

Despite the fact that I slept well last night, I didn't sleep long so I'm trying to sleep when she sleeps but--just as it was difficult to do when we brought Juliana home--it's even more difficult to do now with a toddler running around.

Speaking of that toddler :-), she's really stepped up the big sister plate. When I pulled up yesterday, A brought Juliana out to the car and showed her Daniela. Her eyes got so big, they honestly did look like saucers. Then when we brought Daniela inside in her car seat, Juliana wanted to touch her feet and her toes, and kiss her face (and yes, we let her do all of those things so she knows that she's a part of her life too and that Daniela is not "off limits" to her).

Today she's helped me feed her by holding the bottle, and also patted her back along with me when it was time for a post-feeding burp.

To say that I cried big sloppy tears of happiness and everything else when Juliana took her first look at Daniela would be an understatement. It was just so wonderful to have that day finally arrive, and to see the four of us standing there. Times like those, I wish someone was there to take our picture but it likely would have ruined the moment.

Another image burned into memory of a day I never expected to have.

Monday, February 12, 2007

Guess who's coming to dinner?

Yep, today she comes home, just in time for dinner.

We have training on the apnea monitor at 3:30 today at the hospital followed by discharge summary. If all goes according to plan, Daniela should be home in time for dinner tonight.

How I've waited for this day and it's finally here. Now it's time to begin the new process of acclimating her big sister and us to life as a foursome. I'd be lying if I said I wasn't scared of what tonight may hold. You get used to having monitors and machines around to give you a sense of security when your child is in the NICU.

Tonight, we're on our own. Gulp.

Will post more when she's here :-)

Saturday, February 10, 2007

NICU day 9

Hmmm...perhaps the word "abnormal" should not be cast about so easily by the nurse is all I'm saying.

I met with the neurologist last night and she advised that yesterday's EEG showed nothing abnormal. The only thing she witnessed was some 'depressed' activity in the region of the event Daniela had which was to be expected given that she likely still has some brain swelling. When I asked what she envisioned Daniela's prognosis for recovery to be, she replied "great" which went a long way in reassuring me. Apparently, I was all worked up into a tizzy mentally when there wasn't anything to be worried about. It made for a long afternoon from that phone call discussion with the nurse until when I actually spoke with the neuro.

On the slightly negative side, Daniela did have two bradycardic episodes yesterday where her heartrate dropped significantly (I wasn't there for the first one but I was alone with her last night when the second one occurred--I nudged her gently and her heartrate rebounded nicely--thankfully). The nurse was not sure why these incidents took place but there is the possibility that it was simply a 'blip' on the machine and nothing major. Regardless, the nurse recommended that Daniela be sent home with the apnea monitor for sure and the doc agreed.

Today A and I attended a mandatory infant CPR class (we last took one just before we had Juliana) and A then left to go tend to some stuff he had going on. That meant I got about 4 or 5 hours of straight Daniela time. We snuggled, we fed, we changed diapers--heck, I even got puked on after a meal and then crapped on when she had a blowout through her diaper, the onesie, and two swaddled blankets. Impressive.

Daniela is currently off almost every machine with the exception of the respiratory and heartrate leads. She is in a crib and is feeding on an "on demand" schedule. She's been awake more and more, wakes up about every 2 1/2 to 3 hours for her feeding, and generally is pretty easy-going. She even had her first non-family member visitor today :-)

The plan currently is for us to bring her home Monday (knock wood), probably late in the day. She will be on phenobarbitol for a few months at least as the plan is to slowly wean her from it by letting her outgrow the dose (essentially, the bigger she grows, the less effective the current dose will be until it's basically like receiving nothing medicine-wise). She'll be followed by the neurologist regularly starting at about 2 weeks post-discharge.

As you can see, it's been a night and day of continued reassuring news. More steps forward...hopefully with no more steps backward.

And now I'm off, headed back to the NICU for a late-night rendezvous.

Friday, February 09, 2007

And there's your two steps backwards

EEG today found no seizure activity but there was abnormal brain activity. I don't know what that means, we're hoping to speak with the neurologist this evening to find out more. The terror is back, as are the tears. Trying to hold it together but lots of horrible thoughts are filling my head; I imagine I don't need to go into detail. I'm sure you get the picture. Of course, there is the possibility that the abnormal activity is from the brain swelling but we'll see.

The earliest she may go home is Monday. We've got to attend CPR training tomorrow (though we did it two years ago, a refresher is always nice) and we do know that Daniela will be sent home with an apnea montior--which isn't available until Monday as the unit that doles out home health goods is closed over the weekend (WTH?).

More news as it's fit to print.

NICU day 8, or the light at the end of the tunnel?

We just got back from the hospital and the news is wonderful!

Today, Daniela's IV was removed completely. Her phenobarb level has dropped to 34 and all of her vitals continue to be excellent. She has been moved from an isolette to a crib and is wearing actual clothes :-) instead of a diaper and lots of wires!

When we left earlier, they were just getting started on her EEG. If that comes back okay, as they expect it to, we were told that Daniela will be discharged either tomorrow or Sunday. Yippee!

She does have some muscle tightness on her left side (arm) so we've been referred to physical therapy. In addition, she will leave the hospital on a weaning dose of phenobarbitol. I'll have to give it to her twice a day until she either A) outgrows the dose or B) they drop the amt over time until it is all out of her system. Like steroids, you cannot just stop phenobarbitol cold turkey. The level needs to be reduced over time until it is completely down and ultimately out of the system. Daniela's levels will be followed up by the neurologist at her office in a few months' time.

She'll have her normal newborn hearing screen tomorrow and then we just need to bring in the carseat to make sure she gets the all clear to ride home in it.

Last night, I journeyed up to the hospital by myself (first time) while A stayed home to get some rest. I did the 8 and 11 p.m. feedings and got lots of snuggling in...it was beyond wonderful...

So perhaps we'll be experiencing lots more 'beyond wonderful' in the coming two days. It seems like Daniela has been in the NICU for so long now but I realize it's just a little over a week. Lots of mothers and fathers have children in the NICU for much longer and my heart is with them. It's a lot to go through, to comprehend, to digest, and so so very hard. I don't wish anything even remotely like it on my worst enemy (not that I have any of those but you get my point, I'm sure).

Yea for more good news...like milk, it does a body good--or actually, I should correct that and say "it does a mind good."

Thursday, February 08, 2007

NICU day 7

The past 24 hours have been filled with good news for Daniela.

Last night, they began normal feedings and I'm happy to report that she took to the bottle like a fish to water. She's done so well with it that they increased her amount from 10 ml per feeding to 30. They've also begun to wean her off the IV; the volume she's receiving today has been reduced to a third of what she was originally getting. She also has been moved from a warmer to an isolette and she may be moved to a crib tonight or tomorrow.

A and I had the pleasure of feeding her today at both 11 a.m. and 2 p.m. It was divine. To get to hold her, cuddle, burp her (that's my girl!), change her diaper, etc....lovely. She even opened her eyes and we spent a few minutes checking each other out. After all, she's been so out of it, she hasn't seen me in a week so she's probably wondering who the hell the lady with the dark hair is who's all up in her face. We're heading back tonight for the 8 p.m. feeding and some more quality snuggle time. I can't get enough of it, and to see her face without that vent tube in her mouth...it doesn't get much better than that (until, of course, the day I'm looking at her pretty face in the comfort of our own home).

Today, the pediatric hematologist stopped by to tell us that so far the hematology labs that have come back have all been normal. He's so confident that the remaining tests (those that won't be back until next week) will be normal as well, that he noted her chart as such and will call us only if it turns out that something comes back abnormal. Alas, he doesn't expect it to but if it does, he assured us that it would be nothing huge and it would mean only that she'd need to get the lab(s) repeated at 6 months to recheck them.

There was more talk today while we were at the hospital that Daniela may get to come home this weekend. However, I know to take that with a grain of salt and just play it day-by-day.

Tomorrow they'll run another EEG to check for seizure activity and do another phenobarb level to make sure it's decreasing nicely. Thankfully, they were able to get enough blood from her without depleting her supply so no transfusion--yea!!

I know a lot of times, good news in the NICU consists of one step forward, two steps back but we've been the lucky recipients of several good steps forward yesterday and today without the resultant step back. How I hope this continues :-)

Thank you, thank you, thank you for the continued love.

Wednesday, February 07, 2007

NICU day 6...looking up

I can barely contain my happiness today--Daniela was taken off of the ventilator at 9 a.m. this morning!

Since yesterday, as she'd been coming out from the phenobarb haze more and more, she'd been showing signs of fighting the tube...so this morning the doc and respiratory therapist made the decision to take it out. Daniela has been seizure-free for more than 24 hours now and has had no additional apnea episodes so she is tube-free. According to today's nurse, she woke up for a bit before A and I got there for our morning visit. She had her eyes open, was looking around--must have thought 'where the hell am I?' and promptly went back to sleep. It was so nice to see her face without anything on it!

She also had a consult with the pediatric opthalmologist today who declared her eyes to be just fine (thankfully, I had been so worried about that) so more good news.

While we were there, the neonatologist came by to give us the results of the MRA. Basically, they were good. The MRA showed no evidence suggesting a stroke (the original MRI showed the brain injury and the call was made that it was a stroke) but that may not be the case based on the more in-depth MRA findings. The only potential wrench I see in this is that the MRA done yesterday they did without contrast dye since Daniela was on the vent. Now that she's off it (knock wood she stays off), it's my thought that they may want to repeat it in the coming days, this time with contrast to see if perhaps that finds something more conclusive. But who knows? The other thing is that the brain injury could have healed itself by now and that is why it did not show up on the MRA.

So that's the big news from my part of the country. Oh, and my crying has tapered off a bit too in this past day. I think I've only had two or three episodes tops, as opposed to my usual twelve or thirteen. I know, I know...good days and bad. But today is shaping up to be one of the good ones.

I can't wait to get back there for tonight's visit.

Tuesday, February 06, 2007

NICU day 5

Daniela had her MRA earlier this morning (yeah, finally). Now we're simply waiting for the radiologist to read it and give the neuro the results...who in turn will tell us the findings. I love the trickle down process.

I'm so so happy to say that Daniela has not had any seizure activity that any of the nurses have noted for the past almost 24 hours now. In addition, she's slowly regulating her phenobarbitol levels, meaning she's sort of trying to come out from her haze as her body begins to self-regulate the level from the high 'loading' dose they started her on. Last night's nurse told us that she was trying to open her eyes and today's nurse told us that she's starting to pull at the vent tube...meaning she wants that thing out of there. Can't say I blame her.

The good nurses are the ones who let me change her and take her temperature. We've had a few of those so far, including today's. The great nurses (so far, only one) are the ones who let me hold her. I haven't gotten to do that since Saturday...torture. The mean nurses are the ones who won't let me touch her, change her, or do anything except sit and stare at her (so far, only one). I hate that my time with her is 'managed' by them but I understand why it's done.

The hematology tests start tonight and will continue on into tomorrow and possibly Thursday. There are 16 tests to be run altogether and it's very likely she'll ultimately need a transfusion since her tiny little body can't regenerate blood as quickly as an adult could. We'll see what happens. Those results will rule out any clotting or bleeding disorders as the reason for the stroke.

Like I said, though, we ultimately may never know what caused it.

Today the infection and viral cultures came back completely negative at 72 hours so the antibiotics and antiviral med have been discontinued.

The last good thing to happen today was that A and I met with the discharge planner. She stopped by to meet with us and go over a few key issues for discharge. Obviously, there is some time still to go before they even begin to think discharge, but she ran us through some basic questions and information on what we'll expect as far as consults before we're discharged (basic newborn hearing screen, developmental therapist, pediatric opthalmologist). We're thinking it'll be a week or two before they send her home...how I hope we're wrong.

So today was a good day. It was a rough morning but it got better once we went to visit Daniela. This is not exactly how I expected to spend my maternity leave. I float around the house like a ghost, pale, drawn, anxiety etched on my face, I'm sure. One wrong look at me and I break down crying. I'm trying to stop, I really am, but sometimes I just can't help it. The nights are the hardest...especially at bedtime. That's when doubts and such come creeping in, beckoning me with their negativity, scaring me with their ferocity.

Monday, February 05, 2007

NICU day 4

I love the circled wagons gals, thank you so so much. G-d, does it help.

Things seem to move in slow motion in the NICU. Daniela had another EEG this morning and we're waiting for the results to be read. However, we had a nice nurse on duty this morning and she was kind enough to whisper to me (one of those "you didn't hear it from me"s) that the tech told her (on the sly as well) there was no seizure activity noted during the EEG. Hurrah! What lovely news. That makes it almost 18 hours or so with no seizure activity noted (knock wood). Perhaps that means that it's starting to taper off as the doctors anticipated and that her brain edema is decreasing also as anticipated.

The MRA is about to be done shortly. I just called to give them permission to do the test (it seems they forgot to get it from me when we were there earlier) so hopefully it'll be done in a little while.

Everything else is pretty much status quo. She remains on the vent but entirely on room air. She's taking a good deal of breaths on her own despite the vent. She's still loaded up on phenobarbitol and heavily sedated. Grandma came with us this morning and finally got to see her newest granddaughter. Grandmas are good about not seeing the tubes and machinery, you know?

As for how I'm doing, I'm trying to hang on, I really am but I often find myself whirling and swirling in a sea of doubt. Did this happen because of something I did? Something I didn't do? Could it have been prevented? All that time she was quiet and didn't move alot in utero, had she already had the stroke and that's why she was oftentimes so sedate in there?

I'm trying to put on my "happy" everything's okay face in front of Juliana...whose favorite thing to do nowadays to ask mama to sit on the floor with her and play. It's one of our daily routines. Alas, the floor is so incredibly uncomfortable on my battered girl bits that it's been all but impossible but I'm trying. She's been home with her grandmother here for the past 4 days. We took her to daycare this morning to get back to her normal routine and she was devastated. A said it was the first time he came close to losing it, walking out of there to the vision of her burying her head in her teacher's neck, crying in a soft manner. When he came home and told me that, forget it. I was a goner, yet again.

So much swirling and whirling. Crying. Trying to hold it together, wondering if I'm riding the slippery slope of PPD downward or if it's just the hormonal post-delivery crash. I'm not sure which it is.

I remember when my biggest concern during this pregnancy was whether or not I could love a second child as much I love Juliana. Many of you reassured me that I would. And you know what? You were so right, so incredibly on the mark. I realized when she came out that I loved her from the second I found out we were pregnant. Absolutely amazing that love.

Last night as we drove home from the hospital, A said to me "When I see the look in your eyes when you look at her and how you dote on her, I fall in love with you all over again." By g-d, I don't know what I ever did to get this incredible man in my life, but wow, did I win one in the husband lottery.

Sunday, February 04, 2007

How can I thank you?

How do I personally thank each of you wonderful women when we've never had the pleasure of meeting in person? How can I accurately convey just how much your words mean to me during this extremely difficult time?

I don't know but I'll give it my best.

When A and I first started trying to grow our family back in 2001, we thought it would be a cut and dried issue. Have sex, get pregnant, simple as that. But for us, as for many of you, it was not. It was a long road, an arduous road, one that you think you're not prepared for, and you're not. But you head down it anyway, doing what you can to get through it, to hopefully expand your family.

Along the way you realize just how alone you are in your journey. How no one else you know IRL (for many of us, that is) is going through the struggle you are. But then you stumble onto the world of blogs, and you come across women who are in a similar situation to your own (I found this world through GetUpGrrl--who is sorely missed). You read the words of these incredible women, these strong women, and you realize that you have something...even if it's just the tenuous grasp of hope...in common.

That's how I felt about discovering the world of blogs, particularly infertility blogs, back in 2004. I continue to come across new-to-me blogs to this day that I can't get enough of. Finally, other people who "get it." Each and every time, I become so hopeful for them, so entwined in their stories, and heck, I even made some special connections along the way. And it seems that some of you feel the same way about me (for this I also thank you).

To have your support now, in this darkest of times for me, is beyond anything I could have ever imagined. Please know how much your words are helping me keep my chin up, how they inspire me to keep whispering to Daniela how important it is to keep fighting.

I don't think I've truly conveyed how much your love means to me but please please please know that it does. My girl and I are beyond grateful (as are my other girl and A too). We've had no changes in Daniela's condition today, she's still heavily sedated but doing well. We'll know more in the coming days. Here I was hoping time would fly in the days before I was due to be induced--well, now I'm willing them to fly even faster--anything to get us some answers, some idea of what to expect, as we await test results and more.

I take comfort in your words, your thoughts, your love, your support. They remind me, yet again, that I'm stronger than I think.

NICU day 3

Not much change to report. Daniela is still--as the nurses say--"snowed under" by the phenobarbitol. Keeping her on a high level keeps her sedate and lessens the severity of the seizures. We've been told to expect the number of seizures to increase now and for the next day or two before they begin to taper off.

The seizures occur because there is swelling (edema) of her brain from the stroke. As the swelling decreases, the seizures should too. They're running some coagulatory studies today (which involve taking a lot of blood, so much so that she may be depleted entirely and require a transfusion for which neither A or I can be donors) to see if a bleeding or clotting disorder may be the reason for the stroke. It's not entirely likely as there is no history of any such disorder in either mine or A's family but no stone unturned, you know?

She's still on the ventilator but breathing room air through it. She has a tendency at times to "ride the vent" or let it breathe for her. They tell us this is because of the phenobarb level being so high and also the fact that she goes apnic when she seizes so the vent then does the breathing for her. But she is breathing on her own a good portion of time despite the vent so that's good.

They're going to run an MRA (a more 'intense' version of the MRI that looks specifically at the arterial and venous structure of the brain--that's my understanding of it) tomorrow and that may indicate whether the stroke (or strokes--there is a possibility she had 2 close together) were hemorrhagic (bleeds) or hypoxic (lack of oxygen) in origin.

The neonatologist and the neurologist are both optimistic that Daniela can make a full recovery from the stroke(s). As they say, her prognosis is good. I hold onto that, a ray of bright in an otherwise dark situation.

While this news lightens my heart, it's so hard not being able to hold her as often as I would like to. Holding her can cause too much stimulation which, in turn, brings on seizures. I got to hold her for a little over an hour yesterday courtesy of our favorite NICU nurse. We adore her. Her counterpart after shift change, not so much. When we went back last night, looking forward to giving Daniela a bath as our favorite nurse had said we could do earlier in the day, mean counterpart nurse never even gave us the option, nor was I allowed to hold her. It about broke my heart. I started to cry and this got her to asking me "what's wrong Mama?"

What's wrong? WTF do you think is wrong? There's a long list of what's wrong--the shortened version: A) My daughter is in here, connected to so many damn wires and whatnot that I can't just touch her like I want and need to. B) This not how this was supposed to be. In a "perfect" world, she would have transitioned well after delivery, not had a stroke, and been able to come home with me, to meet her big sister and the rest of her family. C) Do you know how much I need to hold her, to love her, to let her know that I'm there (A has had a cold the past two weeks so he's opted not to hold her while she's in the NICU for fear of passing it along to her)? Do you know how hard it is for me when you tell me I can't touch her, that she needs to be left alone?

She said she preferred not to let me hold her because of the tenuous IV in her foot (they moved it from her hand yesterday to her foot). Funny thing is, when I held her for so long in the afternoon with nice nurse, the IV was in her foot--nice nurse was the one who inserted it there and she had no problem with me holding her despite the foot IV. It's not like I'm sitting there jiggling my girl around. No, it's more like I sit and hold her, talking softly to her, lightly caressing her hands with their long fingers or just holding one, softly stroking the headful of dark beautiful hair (so MUCH hair!), staring at her in wonder. Urging her to fight, to get better. To hurry up so she can come home with us.

I just want her to know that I'm there, that I'm her mother, that I would never leave her but that I'm not allowed to be there all the time due to hours and regulations. I'm worried that we didn't get to bond for very long after her birth. Will she know who I am? Will she know how much she is loved?

Several of our close friends want to come see her at the hospital. I'm not sure if I'm ready for that. I mean, I want them to see HER, not the machines and wires and things all connected to her. I want them to see how beautiful she is, how she resembles Juliana when she makes certain expressions or yawns, I want them to see her for her, not the her who is there on that bed, sick and letting machines function for her. Is that wrong of me? Selfish of me?

I feel like this is killing me, a little bit at a time, inside. Why me? Why us? (or for that matter, why ANY of us who've dealt with IF?) Haven't we been through enough on this journey?

I would gladly trade places with Daniela in an instant, if it just meant that she was healthy and home and that this entire thing was just a nightmare, one that I wake up from and it's over.

Sadly, that is not my reality right now but oh, how I wish it were.

Saturday, February 03, 2007

NICU day 2

We learned this morning that the MRI shows Daniela suffered a small stroke--either before, during or immediately after delivery and they're not exactly sure why. It's the reason she's now experiencing the seizures, which are still ongoing even though she's receiving a fairly high dose of phenobarbitol.

We spent about an hour and a half there last night around 1 a.m. or so and will go back this afternoon and again tonight. I'd stay there all day and night if I could. Leaving there without her is the hardest part for me; I just keep thinking that she's all alone with no one there to love her...but A assures me that those nurses love those babies or else they wouldn't be in the line of work that they are. True I imagine but just not the same, I'm sorry.

The neurologist did say that she expects her to make a full recovery from the stroke (though she said this followed by "G-d willing"). I spoke with our pediatrician this morning to give her the update as she hadn't spoken with the neurologist yet. She was wonderful and went out of her way to tell me about another patient in the practice who had suffered a similar stroke at birth or shortly thereafter and the only after effect he now has is a weaker right arm. Oh, how I hope that's the worst of our long-term effects.

They're now awaiting all of the culture results to see if either a bacterial or viral infection was the cause of the stroke. Monday will be 72 hours, which is the full course of time for the cultures to grow, so if they're negative then, infection is not the cause. They came back negative at 24 hours so far so we'll see. There is some possibility that the nuchal cord caused the stroke, or perhaps they may never exactly know why at all. It all comes down to putting the puzzle pieces together. They will repeat the MRI on Monday to see how her brain looks.

She's on the ventilator now so she's officially a level III patient (highest level of care). She stops breathing when she seizes which is the reason for the ventilator.

I am trying to be strong, I really am, but it's just so hard. I'm already an emotional person--regardless of pregnancy hormones but now that I imagine those are starting to crash, it's only getting worse. Last night--her first in the NICU while we were at home without her--was the worst, I was afraid to go to sleep. I'm afraid I'll miss something though I know I won't. The NICU will call if anything changes or any emergencies crop up. We've been told that this is not life-threatening so that was somewhat reassuring though my mind is all over the place and I can't help it when that "what if" thought comes up. I shove it off as quickly as possible but it's there, lurking in the shadows, waiting to grab me at my darkest moments.

I don't know how I can get through this. I continue to put one foot in front of the other and I know that I can and I will get through this but it's just so so emotionally draining. I can't stop crying. A is being so incredibly supportive. I apologized to him for the fact that I can't be strong right now, that he has to be the 'rock' of our relationship--even though I know he's hurting too and she's his daughter too and he's just as scared, and every other emotion you can think of, as I am.

Thank you, all of you, for your kind words and everything else. They help so much...more than you can imagine. I certainly need all the help I can get, now more than ever.

I just keep chanting in my head, please please please let her be okay. I've never wanted anymore else more than I want this....she just has to be okay. Please, just let her be okay.

NICU day 1

So, my euphoria over Daniela's entrance into this world was quickly tempered by the fact that she did not cry. While I laid there getting stitched up, she would mewl a little but no solid cry. Four nurses worked on her and after a few minutes she was taken to the nursery for them to continue stimulating her. She stayed in there for a few hours and was brought back to us around 10 p.m. We fed her, loved on her, etc., for about an hour or so and sent her back to the nursery (the nurse gave us the option since normally babies room in with mom at our hospital).

We're grateful that we sent her back to the nursery. Around 4 a.m. that night, the nurse in the nursery saw Daniela have a seizure. They ran a battery of blood work and tests from right after she was born until the early morning hours and all came back fine. I later learned that she was born with her umbilical cord wrapped around her neck three times (though all of her heartrates during labor and delivery were completely normal so there is no indication she had her oxygen cut off during labor) and her apgars were not so hot (4, 7, and then 8 at 10 minutes).

After a second seizure early this morning, the hospital called for a neonatal consult and the doctor came down from the big hospital to assess her. The call was made this morning to transfer Daniela to the big Level III NICU hospital.

The transport team came for her around 11:30 this morning. My OB was kind enough to discharge me then, a mere 18 hours after giving birth. He realized that he could make me stay in the hospital and have me stressed out and worried about what was going on with her across town or he could discharge me with the promise that I'd take it as easy and possible but still be able to be see her at the other hospital.

On the plus side of Daniela's health, so far all of her tests (blood-work and ultrasound-wise) have come back completely normal. She's got good color, good tone, etc., however, she's had several more seizures today, even with phenobarbitol (sp?) on board in her IV. The nurses have told us though that the seizures are not the problem since she's medicated and being monitored; it's finding out what's causing them that is the issue. It could be a transient issue that resolves itself and never really has a definitive answer as to why they occurred in the first place or it could be a seizure disorder, it could be a brain bleed/trauma (she was pressing on my pelvic bones for over 2 hours during L&D and came out bruised and battered as a result), or something else entirely.

She had a CT scan and an MRI this evening. Both to check definitively for a bleed in her brain. There is also some loose talk that she may have had a stroke at birth though a pediatrician friend of the family says that if there's any "good" time in your life to have a stroke, during the neonate phase is best as studies have shown newborns/infants are able to regenerate any damaged areas and long-term studies have shown these kids have no lasting effects after age two (in a local study of 16 children).

The specialist will read the CT scan and MRI in the morning during rounds so we should hopefully know more tomorrow morning. There is concern about a possible bleed in her brain though one was not seen on u/s. Apparently, the CT scan and MRI will definitively tell though if there has been any bleeding.

She's breathing on her own, 100% room O2, except for tonight when they had to sedate her for the MRI. Sedation meant intubation but they say that once she comes out of it, they'll likely take her tube out. She's got an NG tube in for feeding but so far she's just getting sugar through the tube.

We've been to seen her a couple of times today. It kills me a little bit inside to have to leave and leave her there, under the lights and surrounded by noise, knowing there is no one there to love her like I do.

I just want an answer, I want to know if she'll get better soon, if there will be any long term repercussions, when she gets to come home. That's all I really want, my girl home with us and healthy. I know it's for the best that she stay there now and get the best care possible in the county. But it just hurts so much. I just want my girl here.

Thursday, February 01, 2007

And then 3 became 4

She's here!

Daniela Marie, 7 lbs., 19 1/2" born at 5:36 this evening after 2 solid hours of pushing (but yea! no forceps) and 8 hours of labor before that. Mom is sore (yes, another "sunny side up" delivery and a second degree tear!) and tired but so in love.

More news once we're home from the hospital in a few days, and--of course--some pictures.

Thank you for all your well wishes--much love to each of you :-)

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