Friday, January 30, 2009
Lately N has been getting even cuter. She loves baby "Syah" and jumps up every time he makes a sound. "Uh oh! Baby Syah crying! Maybe he's hungry. Baby Syah want a baba" Yesterday she made him a tower, and a grilled cheese sandwich. Which means she really likes him, she doesn't just hand those things out to anyone.
Sunday we have the baby shower that C's family is throwing. I am only sort of looking forward to it. I don't relish the idea of exposing my baby to a million random people's germs in a house that reeks of smoke. But hopefully after it's all done we'll have everything we need for the baby.
Tuesday, January 27, 2009
Monday, January 26, 2009
Also over the weekend I saw him suck his thumb for the first time, and focus directly on my face.
I also realized that I have no idea how to answer the question "How old is he?". Apparently people in malls can't help but stop and ooh and aww over babies and the most common question so far has been regarding his age. To which I stammer and debate whether or not to launch into a lengthy explanation as to why my 2 month old is so tiny. Half of the time I just say he's a week old (ten days adjusted now, but close enough) because I realize most people are just being polite and oohing over my baby and really don't care that he is a preemie nor do they have time to listen to me ramble about adjusted age vs real age.
I swear I had a topic in mind when I sat down to write this and now for the life of me I have no idea what it was.
Anyway today is my birthday. We're not doing anything elaborate. Or well anything at all really. I had cake last night with C and Sky and one of our close friends and that was about the extent of my "party". Really I spent almost the whole day in bed with Sky nursing and reading him Alice in Wonderland, so it was all in all a really good day. As long as my baby is healthy happy and home it's going to be the best birthday ever. This time last year I had just lost my pregnancy a week beforehand and I spent my birthday getting rather drunk. So I'm pretty sure this one will top that one.
Saturday, January 24, 2009
We just put him in his new travel system (graco vie4 stroller & snugride car seat) and closed both the canopy thingies to keep the lookie loos from breathing their germs all over him, and he slept pretty much the entire time. Our friends bought us one of those Safety First kits with the hair brush, comb, tweezers and baby nail clippers which is good because Skyler has been scratching himself really bad. We put the little baby mittens on him to keep him from doing any more damage, but right now it looks like he got into a fight with a really tiny kitten.
Anyways while the mall was such a nice break from everything I must admit I am ready to drop. How sad that I used to be able to go with 5 hours of sleep, hit the club and dance until 4 am and still feel up to having a bite to eat with friends, and now a day of walking around the mall pushing a stroller makes me want to pass out. Honestly, I wouldn't trade it for anything in the world. This exhaustion is wonderous, this feeling is how it feels to be a parent to a live baby. I love it. I hope every one of you who hasn't had it yet gets it soon. May you find your wonderful exhaustion. You all deserve it.
Wednesday, January 21, 2009
Making that last night was the most fun I've had crafting in a while. I guess I'm just too girly sometimes. I think it's going to be a bit long on her, but ah well, children tend to grow over time I'm sure it will fit her just fine in a couple of weeks. I'm going to bring it to work today and see if I can't get some pictures of her wearing it.
Tuesday, January 20, 2009
However an unfortunate side effect of holding baby all the time is that sometimes while he is sleeping/breastfeeding we tend to need to eat, and as a result of that I have come up with this list:
Things I may or may not have gotten on my baby's head:
1. maple syrup
2. bread crumbs
Most of that is from incessant head kissing. He is probably going to be so embarrassed by me as a teenager. Heck judging from the looks he gives me I'm betting he is already embarrassed by me. I love the faces he makes they are so hilarious.
Today (okay maybe yesterday whatever) we took him to the clinic near our place that runs the Baby & Me group we used to go to, and the nurses and the outreach worker who know us from group and our prenatal class were very excited to meet Skyler for the first time. They broke out the scale and weighed him. One week ago he weighed 6 pounds 12 ounces, and as of yesterday's weight he is at 7 pounds 7 ounces. His adjusted age is 3 days old.
I've taken to calling him Tooty and Mr. Gruntington. Again probably another reason why he makes those hilarious faces at me. Poor kid, only 2 months old and already has the most embarrassing nicknames. Ah well I have to pay it forward, my mom used to call me Pooper Scooper.. You can bet it took me well into my teens to make her stop calling me that. And now that I have a baby she says he makes the same pooping face that I used to as a baby. so whenever people ask what he got from his mom and what he got from his dad there's always that..
Heck even I am embarrassed for him. Ah well, time to put Tooty Gruntington back to bed.
Saturday, January 17, 2009
Don't mind the lady with the crazy hair, I swear I'd do something to fix it if I had time.
Friday, January 16, 2009
My baby's pituitary gland is not exactly missing entirely. I mean it's not where it should be, but there is still a small part of it somewhere in his head. The posterior pituitary is still present, it just isn't where it's supposed to be. So he is missing the other two parts of his pituitary, but one of them is in there which is better than we thought. He called it ecto something I think. Anyways this is good it means his body is making a few of the hormones he needs. We still will probably have to replace his growth hormone. We won't know for sure until he is about two years old. Do you have any idea how much growth hormones cost? About somewhere in the range of $30,000 a year for an adult. Fortunately pharmacare should cover it or we'd be screwed.
I'm feeling rather satisfied after talking to the endocrinologist. He confirmed what I thought, that it is a very rare condition, but they have had a few patients with disorders like this one, and that the hormone replacement should take care of everything. The doses won't be high enough to cause any side effects because they are not treatment doses, they are just replacing what he is missing and so everything should be fine as long as we keep up with his meds. He should by all means develop quite normally.
I also asked if they knew that caused it and he said that they do not know for sure because it is so rare, but reassured me that it was nothing I did during pregnancy. I asked about the possibility of having a second child with the condition. He said that there might be a slight possibility that it is genetic but with all the cases that he's encountered or heard of none of the children with this problem have any siblings with the same issue. So maybe the next one won't necessarily have the exact same problem. Of course I am sure I will worry about it all the same, as with everything else. We women have so many things to worry about with any pregnancy, like the list needs be longer.
Tonight I am making a sling for C. The one I have for me is just a little too small to be comfortable for him, but baby loves the sling and it does make things so much easier, so I don't see why daddy should be deprived of the experience.
Next post will have pictures I promise.
This doesn't change how I feel. Sophie was my child just the same as her brother. Knowing about his lack of pituitary gland I'm now forced to wonder if she had a similar problem or perhaps something much worse that caused the pregnancy to terminate on it's own. It pains me to have these thoughts. Am I bad a mother for wondering if perhaps my first child was so defective that my body ended the suffering before it began? I try not to think about these things. But I can't help but worry for the next child.
Did I tell you I have to see a geneticist as soon as I get pregnant again? My nurse wants them to follow my pregnancy next time around. Since we don't know what caused his lack of pituitary gland or his early entrance into the world. Is it bad to say that as much as I desperately want another child in a couple of years, that I am terrified as well of being pregnant again? I don't want to be high risk. I wish there was a magic wand I could wave that would take away all bad things that happen to all babies unborn and otherwise. I wish I had a crystal ball and could see if my next pregnancy will be normal or abnormal, if it will go full term or not.
As I sit here and reflect today, I admit I am happier than ever before; I have my baby in my arms. He is home, he is beautiful, in my eyes he is absolutely perfect, but truthfully all in all I am left with more questions than answers.
Monday, January 12, 2009
Moving on. We figured it out, (ish. I think). I've been putting him to breast every time we feed him now, and he is finally getting reacquainted with it. At first he was pretty pissed off but then he figured out that hey this isn't so bad. So now we're letting him breastfeed until he's tired of it, and then offer him the bottle, and while daddy gives him the bottle I pump. Best of both worlds. This method seems to be working. And yeah I have been pumping all through the night, every time he is awake I wake up and pump, and I pumped at work today too. Actually got a good amount of milk and I'm finding with the half breastfeed/half bottle feed method thing I'm actually getting ahead of him again in production.
Work was great, I didn't have to use the formula at all, and N (2 year old) was amazing. The last two weeks she has been saying things like "I'm so mad from baby Syah!" (Skyler). She wouldn't tell us why, I'm guessing she's not too impressed that he's going to have my attention. So we weren't sure what to expect today. But when I brought him in she was very happy. The first thing she said to him was "don't cry baby Syah" because he was starting to wake up and get hungry. She spent much of the afternoon mothering him. She brought me every single rolled up receiving blanket from his car seat and gently covered him up "keep baby Syah warm". She read him stories (I have no idea how but she has memorized entire books! She didn't even need me to read a single word. I am so impressed with her I'm speechless). She kissed his head when he cried, she told him she loved him, and when I asked her "Who is baby Skyler's mommy?" She said "Tel" (her nickname for herself). She even went to find her toy bottle for him when he cried. "Baba for Syah".
C came to my work after he dropped off his one year old, and held Sky and watched N for me while I pumped. I sat in the same room, just draped a receiving blanket over myself. It was good, Sky actually breastfed for me while I was at work, and N was very helpful. I had had one container of milk with me, and he took about 50mls after he breastfed. Overall a very good day. I'm amazed how fast he caught on with the breastfeeding thing too. The last few days were rather frustrating, but he remembered how to do it pretty quickly. I thought this was going to be much worse.
ETA: Becky I miss your blog so much, and I emailed you but I don't think you ever got it. And to the rest of you if I haven't commented on your blog yet, give me time I am catching up with everyone's posts. Some of you from the very beginning. I love you all! (I must be on something to be this happy.. Maybe that two year old spiked my orange juice. Kids these days..)
Occasionally he will latch on and suck for a moment or two, but when he realizes he has to work so hard to get the milk he goes back to rooting around for a different nipple (a latex or silicone one I'm sure) and crying when he finds only my stupid soft squishy (defective) one. Next problem is I have to work for a few hours this afternoon and like I said I'm not keeping up with him in terms of expressing milk. As soon as I pump it he drinks it, and then I'm back to square one. So now I have no idea what to do. Do I bring my pump to work with me and deal with pumping while watching him and the two year old, and then feeding him after I pump or do I try to breastfeed and watch him struggle and get hungrier and more frustrated? Or do I bring formula with me and cop out all together?
I'm not opposed to supplementing if I absolutely have to. I really really don't want to, but there is no way I'd let him go hungry. I'm kind of at a loss here. I think I will bring the small can of formula just in case and try to breastfeed him for as long as I can, and if it doesn't work then I'll resort to the formula..
To top everything off I have some sort of knee problem. I have no idea what it is. I knelt down on the floor yesterday to change a diaper and have been in pain ever since. If I forget and go on my knees it just about kills me. I'm pretty sure I slipped on the ice and fell on it a month or so back, and I'm wondering if that has anything to do with it. This kind of sucks because I take care of children and it's hard not to kneel down to get to their height, or to change diapers on the floor. (We have a change table, but why bother dragging the baby all the way there when I can just lay them on a floor on a recieving blanket). I'm not sure what to do with it, I'd ice it but there are no signs of swelling. No signs of anything really, it just hurts like hell to the right of my kneecap.
Anyway I am going to go try to pump again. Maybe I can get a whopping 30mls. /sigh.
Friday, January 9, 2009
Warning: Do not mess with tiny infant, as he is protected by giant guard bear.
Here is the most concerning paragraph from the only site with useful information about pituitary aplasia:
Neonatal hypoglycemia associated with poorly functioning anterior pituitary gland may represent a series of separate syndromes with no structural brain anomalies or with defects such as craniofacial defects, absence of septum pellucidum, septo-optic dysplasia, arrhinencephaly, holoprosencephaly, and anencephaly (1). It is well known that anencephalic newborns lack an identifiable pituitary gland and have hypoplasia of the adrenal glands (3,4). Congenital absence of the pituitary gland without a major brain anomaly is a rare disorder. Most infants with this disorder die in early infancy, and the anomaly is diagnosed at autopsy.
I suppose it would be an understatement to say that this is a little bit tough to deal with. And it doesn't help that there are no support groups and practically no one has ever heard of this issue before. I've written out a rather long list of questions for the endocrinologist, I'll try to update as soon as I talk to him.
Thursday, January 8, 2009
That is not going to happen now. They did their stupid MRI and found out what is wrong with him. He doesn't have a pituitary gland. Lovely. So now we have to make an appointment with endocrinology and talk to them about when he might get discharged, because it is now up to the endocrinologist. And lets not forget he is going to need to be on a shitload of drugs his entire life. Assuming he will be able to live without a pituitary at all.
Wednesday, January 7, 2009
And as for speaking to the higher ups, we called in the head of neonatology at the hospital and had him explain everything to us, they also put in the notes that they are to call us for any major changes with anything. And so far so good, they have been calling and making sure we're being kept aware of everything. I must say C and I are feeling much better about things, and baby has had a wonderful day. I can't say if tomorrow will be good or bad, but today he was mommy's little warrior.
They switched him to ad lib demand as per our request even though numerous nurses said he wasn't ready. We spoke to the head neonatologist as I mentioned and he overrode them and Skyler proved he was up to the challenge. He took every feed by bottle with no desats, and no gavage at all. He needs to have 3 more perfect days, and well then we could be shown the door.. but I'm not going to count on it. If he has even one little desat the 3 day count starts all over from the beginning.
So I am happy, but guarded happy.. He certainly has come a long way, and as long as he keeps chugging right along..
Tuesday, January 6, 2009
(Don't mind his horrible looking parents. We don't seem to find the time to shave or get a haircut lately.)
Sunday, January 4, 2009
Baby is getting better at pacing himself while bottling the nurse says. Which is awesome. Oh and we gave him a bath for the first time. I'll add pics in a min.
Saturday, January 3, 2009
My little warrior is doing great. I've actually been afraid to post about it for fear of him sliding downwards again, but when I think about it my blog is kind of like a record of everything that's happening in my life. Really this is my journal so maybe years later when I am telling my son how he scared me and his dad to death when he was first born I can look back and remember exactly how it went down. So having said that, he has bottled most of his feeds the last few days, with very few brady/desats. Oh and he has been off the nasal prongs for a while. He's still not ready to come home yet and I imagine my estimate of the 25th is probably pretty accurate, but he is making progress and for that I am elated.
I want to congratulate Antigone, she had Perseus on New Years.
And to everyone who has been leaving comments I love you all, you keep me going, thank you so much.
Friday, January 2, 2009
That's the day he's coming home. Don't ask me how I know, I'll tell you when the time comes. His doctors and nurses have not given me a date, his pediatrician today said he is unlikely to be home by mid january, which just further confirms to me that he will be home January 25th. I am still hoping for a sooner date. I would be very happily proven wrong if he comes home before the 25th.
The 26th is my birthday. Which means this year I will recieve the best present in the world, bringing home a living baby. I kept telling myself that this interminable wait would be easier if I had an exact date to look forward to, and now that I do, it too feels so far away and unreachable. I also feel mortified by the prospect of him staying past his due date. It feels so very unfair. Had he been born at 37 weeks or 38 weeks or 40 weeks on his due date, he likely would have been perfectly healthy and sent home a day or two later with me. I would be one of those ignorant smiling moms with the carseat in the elevator going home without a second thought. I would not be the haggard, tired woman that the security guard recognizes on sight. I would not be "mom R" who has her every visit and every question marked in a chart. I get the feeling most parents with healthy full term babies do not have a chart where someone makes comments such as "Parents seem affectionate, asking appropriate questions, concerned for their baby". I get the feeling those parents who stay briefly and then leave with their babies are not judged on a daily basis.
I get the feeling that they do not get a lecture for breastfeeding their child for an hour because it has ruined the feeding schedule. They do not have to sit and watch their baby cry in a plastic box and not be able to comfort him, and watch him have the most difficult time falling asleep because of the very bright flourescent lights that are directly in his eyes.
I had thought for some stupid reason going into this that once he reached his due date that was it, the time here was up. He would be able to go home, why would he need to stay past his due date? Everyone else goes home at that point. Actually that is not true, many of the other babies go home well before their due dates.
And he is growing so fast, he has outgrown all the preemie stuff now. The clothes we got for him that are washed and folded in his drawer, he never got to wear them. He outgrew them before he even wore them. I feel like I am missing out on everything. I'm missing him growing up, because he is growing up in the hospital, in some stupid plastic box. Where the nurses laugh when the babies cry and say "that baby better learn to suck it up because no one is going to jump to his/her every need." I have these irrational fears that he will be there forever, that he will learn to roll over while in that stupid plastic box and I will miss it because I simply can't be there every minute of every day. I know he probably won't roll over until 6 months or something like that, but he's already been there almost 2 months, what's 4 more? They don't seem to think he is coming home soon. Ugh.
January 25th. That is what I must keep telling myself. He will pass his carseat test on the 24th, and come home the next morning. All I have to do is make it to that day and this will all be over.
Please tell me, how do you make it through the hard times? Do you have any tips for making it to the finish line without losing your mind?