Bragging

Just a lil bragging to do from yesterday :-) first off I got a whole TWO DAYS off this weekend.... woohoo!!! (still doesnt make up for working xmas eve or xmas morning but whatever) So yesterday afternoon the hubs and I got to spend a long time playing with annabelle and getting some good therapy time in (since it was afternoon time and not the evening she wasnt tired and could do a lot more). Here is what we saw and heard her doing yesterday.
- grabbed a rattle with her left hand and put it toward her mouth.
- sat up all on her own for a prolonged period of time
- caught herself with her left hand as she started to tip over while sitting up


Puffs on the Nose!!!



- Grabbed her own puffs, mostly raking but twice she used a pincer grasp (may have been coincidentally but she did it twice) and got some right into her own mouth!!!



- NEW SOUNDS!!!!- gaga, kind of a caca and ::::drum roll::::: dada. Still no mama but I of course will take the dada. And she is going Mmmmmm when she eats solids (she's too funny). That was a great relief for me 'cause I had just been thinking over the past week how we had not had many new sounds in a while ::::sigh of relief::::

For our second day there is football to be watched, GO BILLS! xmas cookies to finish and more cuddling! I love full weekends off!

Work

I guess I'm still really dealing with some jealousy issues and dealing with the unknown of the future. I saw a beautiful 12mos old girl today for her well child check, she looks similar to Annabelle, very smiley and walking all over the place. She's also got a TON of words for a one year old and even more signs.... sigh. I love my baby and I am thrilled with everything she has done so far 'cause it's honestly more than I really expected but I know she's going to be slow to walk and talk (although I think she'll get there!) and it's particularly hard for me some days when "normal" is all up in my face... I mean it's my job to look over a kiddo, most of which are thankfully typical, and watch them and pick out the not so "normal". 

A few months ago when I was working in the emergency dept. I seriously considered dropping from my residency (one lil year left to go and $170,000 in school loans and yep I was gonna do it). One reason was all the "normal" I was seeing would bother me and then seeing all the "not so normal" and the kids who were severely delayed would bother me too... I would wonder if that is our future- feeding tubes, wheel chairs, splints, recurrent visits to the hospital; or perhaps something a bit milder? It also bugged me that there was never a shortage of "shunt kids" in with headaches, or vomiting or fevers. With them I would also wonder if all of that would be in our futures (and it's looking like it more and more unfortunately).

It's the unknown that drives me nuts. I know all the possibilities for where we could end up, some more likely than others, and I HATE not knowing. I have an information overload, I know too much. I sometimes wish I had gone into radiology or pathology or something like that where I would not know all the details of the stuff I know....ugh! In the end I obviously didn't drop out, that would be financially irresponsible, and as of today I've got 6 more months before I'm done :-) I know I still need to work on being happy just with what we end up with development-wise, it's just hard to that sometimes.

Jealousy

Someone close to me is being induced today- they are having a baby girl. I am very happy for their new little family but at the same time, so very jealous.  Jealous of the anticipation, jealous of going through labor (yes indeed I am, I never got to experience it and have the Hubs rub my back and all the feelings that go with it), jealous of those last few pushes when you know she's almost there, jealous that my baby wasn't immediately placed on my belly for me to hold and BF right away, jealous that I worry about all the things the future holds (or doesn't hold) for my little girl.

I would not wish anything less than the perfect delivery for anyone and would never want anything like what we're dealing with for anyone, but I'm still jealous. And have a big 'ol knot in the pit of my stomach.



A few days before our scheduled induction, when we were blissfully unaware of what was really going on in that belly of mine.

Therapies for Mommy.... SHOPPING!

The other day, I got kicked out of work early (YaY!), the Hubs wasn't getting out of class til 3p so I decided to go to noon lunch lecture to kill some time. Unfortunately the topic was brain issues and the resulting psychological issues... great, but at least the tacos were pretty good. So we're going through and dude starts talking about strokes and hydrocephalus and how he has some patients that have had upwards of 50 shunt revisions by their 18th birthday, and this lovely lil fact just as we're trying to decided weather or not to shunt Annabelle. I was done and left (and of course, tears were shed).  I stopped by to see Hubs before his class to get a hug and proceeded to the mall....

I wandered and found some cute sweaters and boots (I need/ want/ must have). But alas could not bring myself to buy anything, it is xmas shopping season after all. Soooo I ended up at Carter's, and then toys r us.... Like I said, it's xmas shopping time :-D I probably spent too much money, but it was all on the Hubs and Annabelle, and I felt better, and I got my xmas shopping done for them. Perhaps not the most *IDEAL* form of therapy, but it worked for me for the afternoon. Perhaps next time I'll try something more productive like the gym or laundry, hahah yeah right!
V

Sleepy Time

Annabelle didn't do a very good job of it tonight. She's usually pretty good (thanks goodness!), falling mostly asleep during her nighttime bottle and then going right out when you put her down.

BUT

Try to put her down when she's still wide awake? Start the countdown to meltdown: 5, 4, 3.... Which is what happened tonight. We tried, I sang and patter her tummy. Jimmy sang and patted her tummy. But she kept going. I finally caved and did something I advise my parents not to do unless they wanna start doing it everynight. I warmed her another bottle (we all know damn well she wasn't hungry) and picked her up ::::gasp:::: and rocked her. She drank about one ounce out of that bottle then smiled at me and started singing- DAMNIT! Annabelle- 10, mommy- 0

Needless to say she eventually got drowsy, 20 minues later, and peacefully passed out in the crib. I always knew telling parents that crying it out/ helping to self sooth was easier said than done but man oh man I didn't think it was going to be that hard!

Peacefully sleeping at like 2mos

V

Lots Has Happened

My girl is now 6mos old... and lots has happened.

1. Development- Despite her horrific imaging (if ya saw it you might say, how does she do anything?!?) we're pretty close to being right on track developmentally. Almost sitting up on our own and at this point working on strengthening her torso, she's a bit weak on the left. She's holding her big 'ol head up real well and is using her left had a bit more!!! She's babbling a lot and says- "thhhh", "bababa", "popopo" and "blahlblahlblah" (it's weird but really cute)

2. Hydrocephalus- Speaking of her big 'ol head, its apparently getting bigger. We didn't think it was but she's in that magical grey zone. Her neurosurgeon is still sitting on it but he's pretty sure we're going to need a shunt placed in the next few months :-( bummer.

3. Eyes crossing- Finally saw the eye doctor, he thinks her vision is pretty good in the left and not so much in the right. Soooo, we're patching the good eye and seeing what happens. She'll probably need surgery on the eye muscles to correct all the crossing (even though she's cute when she does it).

4. Therapy- I fired our early intervention OT and we went private and we LOVE her!!! She works great with Annabelle and has some great ideas. I just wish we had more time to do therapies at home. By the time we get back from work and daycare we barely have time to eat solids (oh yeah, we did phenomenally well with that too!), play, get ready for bed and take a bedtime bottle let alone get in tummy time, sit up time, rocking time and ball time (for that torso) and vision stuff- I need more hours in a day :-P

5. Work- Jimmy is working hard on his research and teaching labs, busy busy. I went back to work in July and front loaded my schedule, it was good most day- I kept nice and busy without too much time to think about everything, just doing. Now things are a bit more mellow and I'm thinking a bit more and dealing with those things as they come- it's hard. But then we pick Annabelle up from "school" and everything is good again, I go back into by bubble and I'm happy :-)

That's most of it, like anyone else good days and bad days, we'll see what happens next.
V

Those first few days...

were a bit of a haze- I was recovering from the c-section and drugged up, which made me loopy. The baby had glucose issues and so couldnt be in the room with us the first night and throughout the second day (Although when my legs were still numb and I couldn't get out of bed to see the baby the nurses snuck her into my room for a lil bit!). I was so excited when Annabelle finally got to stay in our room with us, I held her all night long.

It was a roller coaster ride. We went from not knowing if our baby would even live, to seeing her scream her lil head off. Then came the specialists after Annabelle had a head ultrasound-
The neonatologist said it was really bad and we were crushed,
The neurosurgery resident came by and told us most of the hydrocephalus kids do great, we shouldn't have to do any more imaging and we were thrilled
The neonatologist came by and said it was not just hydrocephalus because the ventricles were jagged something else happened and we should have an MRI and we were scared.

Annabelle had the sedated MRI across the bridge at our pediatric hospital. Turns out she had a massive inutero stroke. Most likely scenario is that she had a clot or other "ischemic event" that weakened her blood vessels and caused them to burst and bleed (equivalent to a grade IV intraventricular hemorrhage). The blood caused damage to the brain tissue so that "died off" and was replaced by the fluid. There was also the formation of a small piece of tissue, the result of the bleed, that did not allow the CSF to drain properly- adding to the hydrocephalus.

I was again devastated, I knew too much. Not only the information of what the studies had given us but what it all meant in the long run. I knew that I would never be able to pin someone down to give us a prognosis or what Annabelle's level of functioning would be, but I had also worked with many kids who suffered from hemorrhages and hydrocephalus- many of whom functioned at a very low level. A lot of the people around me never had the experience of working with those kids. A lot of people told me "the brain is wondrous, it can re coop" or "you never know she may end up 'ok'". In my mind, there was no way that was going to happen- I had seen the scans and there was just too much damage. Even though my parents had flown out to be there and my husband was going through the same thing, I felt very alone- I felt like I was the only one who really understood what was going on and what it all meant.

I cried... alot. Almost everyday for the first two months in fact. I was sad and mad and disappointed. Even though I had the most beautiful baby in the world in my arms it was not what I expected or had hoped for- which also made me feel like a terrible person and mom. I was sad for Annabelle, for all the things I did not think she would be able to experience or do or see. I was sad for our family and all the stress and time consuming therapies that I knew were coming. I was worried about my marriage, it's strong but would it survive this in the long run? I was sad for Jim- it was me that brought up having kids in the first place and this wasn't what he bargained for. All of which I think are totally valid thoughts and feelings.

I don't know what changed, and I still do get sad and mad and upset, I still have the occasional breakdown but they are becoming less and less. I suddenly had an over-whelming calm come over me- just a few days ago actually. While this entire situation absolutely sucks and I don't want to deal with it and I wish it had never happened I know we're going to be ok. I've known from the start that no matter what Annabelle is going to be well loved and cared for. Maybe that just finally sunk in. This is not going to be easy, and again it totally sucks, but I am one hell of a lucky mom to have her.

In the Beginning... (Part II)

I barely slept that night. My heart was pounding the whole time and Jim held onto me all night long. We had to talk about something I never imagined I would have to ever think about, let alone right before my baby was born- if she couldn't do it on her own would we want her intubated? or compressions done? or lots of meds pushed? I remember getting mad at the gummybear because she was up all night too giving me lotsa "butt bumps" into my ribs (something I loved), which would make me cry- I didn't know at that time how much time I might even have with her. 6am finally came and the docs did their rounds, we went for our more formal ultrasound and waited for the peri to come back in and tell us what they did and didn't see.

There was a lot of fluid and her cortex was badly damaged. Her cerebellum and brainstem were intact however so her cardiac and respiratory function should not be affected. At 10am we went back to L&D for our c-section. Both of us already exhausted and scared out of our minds. I got settled and Jim came in. The docs got going and at 10:28am on April 30 our gummybear was born- screaming her head off, the diva had something to say. I was so relieved I started crying and laughing at the same time. We got a very brief glimpse of her before they handed her off to the NICU. She was the most beautiful baby in the world- huge (a measly 9lbs 6oz), screaming, full head of hair and still a lil purple (which scared the crap out of jim, but she pinked up immediately). I could hear her screaming through the window that connects to the NICU, she had APGARS of 8 and 9- perfect! She was doing so well that they let Jim go over to see her right away while the OBs finished up with me.

She continued to do so well- aside from a lowish sugar due to her size- she was allowed to come meet me for the first time while I was still in the recovery area which doesnt usually happen. Having had an "in" with the department is helpful too I think! Watching her for the first time it blew my mind that there was anything wrong- her head didnt look that big, she ate great right away, she moved all her extremities around equally, she had great tone. Most importantly she was beautiful and perfect in every way despite the long road we knew was ahead of us. Our Annabelle was finally here!

In the Beginning...(part I)

There was me and Jimmy, madly in love :-) In Dec 2008 we started talking about having kids and ended up doing the non-commital, "we're not trying but we're not not trying." We found out we were pregnant in Aug of 2009 and we were obviously super excited. We did all the normal parent to be stuff- got the room ready, bought outfits and toys and gear, discussed and changed our minds about baby names, had anxiety over our big ultrasound and then relief when everything looked great. We got more nervous as our due date approached, Apr 20 2010, but even more excited!

Our little diva (though at the time we didnt know if she was going to be a boy or a girl) showed us that she was just that. Our due date came and went. I got bigger and more swollen and more cranky... then a week and a half after our due date on Apr 29 we finally went into L&D for our induction.

I remember being really nervous going in and saying out loud on the drive in, "what if everything is not ok?" and then immediately dismissing that as pre-labor jitters and normal nervousness. We got checked in, I changed and the resident and medical student came in with the lil bedside ultrasound to make sure the baby's head was down. It was and I remember the medical making the statement, "wow you can really see all the structures" They left the room and came back with the entire "night team" one of which was one of the Sr residents I recognized. She took a look at the ultrasound as well saying I previously had a low-lying placenta that they wanted to check out, I shoulda known something was up right then and there. She said she wanted to go get one of the perinatologists that was in-house to take a look, again shoulda known something was up.

The perinatologist came in and took a look at the ultrasound as well. Then he says, "well it looks like there is an issue, it seems as though your baby has developed some water on the brain." My immediate first thought, within a split second, was it might not be that bad, A lot of kids like that are just fine. I asked him how bad and sat up to look at the picture myself. It was bad.
I immediately put my hands over my mouth and kept repeating "oh my God, oh my God." The peri looked at me with wide eyes and asked me what I did. I told him I was one of the peds residents. I looked over at Jim, who had a scared look on his face but because no one had said exactly what was going on out loud, he didn't really know what was going on... I still feel absolutely terrible for that.

All of that transpired in a matter of seconds, it was so fast and our world was turned upside down. We talked for a bit and decided not to induce that night because we wanted the full day team in the NICU to be around when the baby was born. So we decided that we would go get some sleep (yeah right!) on the ante-partum unit, have a more detailed ultrasound in the morning and plan for a c-section after that, as the baby's head was on the upper limit of size that they would let me trial labor. So off we went to our room to rest up for the day ahead.