Tuesday, March 31, 2009
He weighed in at exactly 11 pounds. 22 3/4 inches long. Of course, I never know what to think about length stuff because depending on the day and how cooperative Robbie is, he gains and loses and inch at will.
As soon as Dr. P walked in the room and said hello to him, he started screaming. As he's really quite friendly with most people, I was mildly horrified, but Dr. P was THRILLED. She said stranger anxiety is an "upper brain function" and should start between 6 and 8 months. (Keep in mind that he's not quite 7 months adjusted.)
He continued to scream with tears rolling down his face the entire time she examined him.
Being the world class mother that I am, I managed to walk out of the house without a pacifier so short of waiting for her to finish, I couldn't do anything to soothe him.
His physical exam was great. He's had a lump on his neck for a while and she confirmed that it's just a gland. (I'd asked about it in the hospital as well. But I wanted a 2nd opinion.) His head shape and size are excellent. (He's ALMOST on the chart for head circumferance, which also pleased her.)
She passed him back to me and watched to see if he calmed down right away. He did and that confirmed to her that he just didn't like her. And she loved it.
She asked what "things" he was doing and I was suddenly struck dumb and couldn't come up with his whole list of stuff, but managed to think of a few things and she was pleased.
We talked about the lack of rolling and she was pretty unconcerned. I explained that OT thinks he has the skills to do it, just no desire because it hurts and she thought that was reasonable. She managed to get him to sit up unassisted for a couple of seconds (he's REALLY wobbly.) and commented on how good his hand-eye coordination is.
I wish I'd have thought to mention how he's learning to turn his pacifier to put it in his mouth. That's a big one in my book.
She was also very happy to hear how well he's sleeping at night. We talked about his cat-napping during the day. (He rarely sleeps more than 20 minutes at a time during the day.) She said it's very common in babies that sleep as well as he is at night. That he may catnap even 4 or 5 times a day and it's fine. Eventually I can push him to stay awake through a morning nap to adjust his sleep/activity cycle, but for now it's fine the way it is.
Basically, she thinks he's right on track for his adjusted age. His gross motor delays are all attributable to his stomach problems and since we're already working with OT and likely starting PT soon as well, she's not concerned.
The only "bad" points were that he's too skinny. That obviously wasn't much of a surprise. She plotted his growth on the chart and it was pretty pathetic. So we discussed various ways of fixing it.
As I expected, she was more amenable to my way of thinking that GI has been. She thinks it's entirely possible that he just doesn't tolerate powdered formula well. She thought my proposals of trying liquid concentrate, increased volumes and added fats were all valid. She actually said she'd like to see him taking 28oz of breast milk every day. (He's currently getting 20.) I'm really not sure I can push him that far, but I'm certainly willing to try to increase it a bit.
And the "bad" thing that surprised me: Four more weeks of quarantine.
I had really expected to be released. Both of our NICU friends who see the same doctor were released. When I asked about it, she said that they are both larger and have more reserves. While RSV isn't a big concern right now, because Robbie is still so little, if he were to get sick at all (even a cold) he just doesn't have the stores to handle it and he's very likely to end up hopitalized.
So she wants us to work on bulking him up and giving it another month.
I won't lie- I'm bummed. I'd already mentally planned our first trip to the zoo. But he's worth it, so we'll stay home a while longer.
All in all, the good outweighs the bad by leaps and bounds. I'm calling it success.
P.S. All the pictures are clickable to be seen bigger.
Monday, March 30, 2009
The last few days have brought some interesting developments in his world. Only one of those is bad.
I'll start with that one so we can end on a good note.
The eating is the worst it has ever been. Last week he'd started spitting up quite a bit again, so I called GI. They wanted me to switch back to Elecare again. I was skeptical because Elecare was the formula he was on when he was discharged from the NICU and he threw up so much that was back in the hospital for dehydration.
But I thought I'd try. So Thursday we switched. The spitting up improved, but the eating declined severely. He went from eating between one and two ounces to eating maybe 5 or 10 ml. (Everything leftover goes into the tube.)
Yesterday he started spitting up again. So yesterday afternoon I switched him back to plain breastmilk, but he still wouldn't eat. Finally last night I managed to trick him into sucking on a bottle w/o getting any milk and eventually got him to eat and he took a little more than 2 oz. But that was a one shot deal. Since then the most he's taken has been 12ml. (30ml=1oz)
So that's frustrating. I'd like to see things improve, but I'd settle for status quo. Declines are not welcome.
BUT.. good things abound!
The rolling: He could if he wanted to. I've been saying that for at least a week, but today OT agreed with me. He had a reevaluation with the head OT lady and she said that he can do all of the things he needs to do (arms and hip wise) he just doesn't get all the way over from back to front probably because pain stops him.
And he actually has gotten from belly to back a couple of times. He's not doing it the "right" way by turning his hips, but he can flip himself over. OT says he does it that way to avoid pressure on his belly.
But it still counts!
And really, in my opinion, the most exciting thing is his language development.
The last couple of weeks has been all about the voice. He's learned to squeak, squeal and grunt. And two days ago, he started babbling. At first it was a couple of "ahbah. Ahbah. Abaah." then one or two "mah. mah."
But last night I got a whole string of "Mahmahmahmah. Mmmmmmmmmm mah. Mmmmmmmmm mah. Mama." and a few "bahbahbah."
I was so giddy I could have peed myself. I realize he's not really saying momma, but it's still the right sounds and I LOVE IT.
I was prepared more for baba or dada because he prefers those sounds, but I'll take mama!
He's also really getting good with his hands. He can find his pacifier and get it in his mouth. He's still working on how to turn it if it's aimed wrong, but even that is showing dramatic improvement. Just this morning I caught him staring at it and turning it a little like he was trying to figure out which way was up.
These things are coming just in time, too. His NICU follow up evaluation is Thursday and I've been a nervous wreck about it. Not that I don't know where he stands on stuff, but it's a different story when you're going to have to trek him into a child development center and have him judged by a bunch of strangers. They're going to assign him a developmental age and seeing it in black and white might be painful.
BUT, at least now we've got some bright spots even if some of his gross motor stuff still really sucks.
Actually it's a very full week for us here.
He had a follow up OT evaluation this morning. Tomorrow is his 9 month well baby exam. Wednesday we have a play date with some NICU friends and a PT evaluation that afternoon. Then Thursday is the NICU follow up. Robbie is going to be a little social butterfly.
I'm just his manager and publicist. It's a good job if you can get it.
Saturday, March 28, 2009
I was the sort of kid that insisted, when I perceived that my parents were being unfair would complain. "Mum, it's not fair, Elizabeth's parent's don't do that". You know who Elizabeth was, you had a friend like her (or maybe you were her, I don't know). I got Ovaltine, she got Nestle Quik. I got pure apple juice, she got kool-aid. She had a large white cat called Fluffy. I had two huge tom's called Stanley and Jonathan. She got those Popsicles with ice cream in them, I got, you guessed it, home made Popsicles with apple juice. She had better food, better toys, better, well everything.
And I would complain, which must have cut my mother to the quick, but that's another post for another day.
And my mother would look at me, and she would say "Mrs. Spit, Comparisons are Odious".
She's right you know. There's always someone with something better, there's always something about how other's handle their life that we just don't quite like. It isn't what we think we would do. But oh, we are so quick to judge. So quick to find fault, so quick to condemn.
Trish wrote such a lovely post on Thursday. She was talking about President Obama's comment, that was, at best, unfortunate. Now, I don't think that he meant it as such. I think it was an unfortunate choice of words by a man so much in the public spotlight. But, his words, as unfortunate as they were, gave rise to what Trish was saying. That words hurt. They have power, and they hurt. And that retard especially hurts.
I was pretty surprised about how this post got turned into a "bash Trish" situation. I'm still a bit confused about the whole thing.
Now, I've never been afraid to jump in where angels fear to tread, so I don't mind saying, those comments were hurtful. They may not have been mean spirited, but they were mean. And I'm sitting in my dinning room, several thousand miles away from Trish and all I can think of is "you hurt my friend, for no good reason". Really, that's about it. And perhaps what bothers me most is that you hurt my friend because it made you feel better to do so. And I'm not ok with that.
You see, when you tell Trish she's whining, when you tell her:
A lot of the time, you do have a poor attitude, compared to most other mothers,
some of those that have lost one or more children. (And I don't mean by
I am astounded. I know 2 Trish's. I know the Trish that blogs, and I know the Trish that I talk to late at night, when Robbie is in the hospital, or he's unwell. They are 2 am calls, calls at a time of night when the lines between possible and impossible, and if we are honest, the lines between life and death are a bit blurred. They are calls made when she is exhausted, and I just want to hold her hand. Pray for her and with her. Hold out hope for tomorrow.
And that Trish, the Trish who has so kindly shared Robbie's joy and sorrows, who has, in the midst of profoundly trying times celebrated her thankfulness and her sorrow, the joys and the pain of being a mum to a special needs baby, I have been thankful for her.
It is true courage to face the challenges of your life head on. It is true valour to describe life as you are living it, not as you want it to be. It is our great honour to be allowed into her life. It's not easy to be a mum, whether your baby is healthy or struggles to eat. It's a bit harder when your baby struggles.
And so, I think, on behalf of many of us, I would like to say thank you. It has been my great good privilege and honour to be a part of Trish's life, and through the life of Trish and Dave, Robbie's life.
Chief Moose Purveyor, Edmonton, Canada.
Thursday, March 26, 2009
I have a few thoughts regarding the feedback I received today.
I take it that I'm not expressing my incredible joy at being Robbie's mom often enough. I shall endeavor to rectify that.
I love Robbie more than life itself. I'm in awe of him every day. After a middle of the night feed, I often pull him close and just stroke his hair or kiss his pudgy little cheeks over and over because he's just too sweet for words.
Yes, Robbie brought challenges to my life that I wasn't anticipating. But I have always known that parenting is a risk. As the saying goes- to be a mom is to have your heart walking around outside your body. I signed up for whatever mommyhood would bring- good and bad.
The good outweighs the bad by leaps and bounds. By mountains. By oceans.
The thing is, the good is easy to deal with. When he's smiling or giggling or sleeping peacefully, or just plain being adorable- when he's learning a new sound or trick, when he's amazed at something we all take for granted- that's easy. I just sit and stare. I laugh, I smile, I love. I try to snap myself out of the utter bliss and capture the moment on camera.
The bad- it's tough. The worries are endless.
Is he doing what he should? Am I doing what I should? Did I work him enough today? Did he eat enough today? Did he learn enough today? Do people know how great my kid is? Does my kid know how great he is?
Am I a good enough mother today?
I take in all the good stuff I can with Robbie. I try to enjoy the moments as they come.
But what do I do with the bad stuff? I'm home alone with Robbie most of the day. He's a pretty amazing kid, but he's not so great with the advice. And the bad stuff is a pretty heavy load for a 10-month-who-should-be-7-months-old.
So I bring it online to the vast space that is The Internet. Where I hope someone gets it. Where I hope someone gets me. Where I hope maybe I help someone who stumbles upon my words and knows they're not alone, the way I've stumbled upon others who've made me feel less alone.
And that brings me to my last point:
This is my blog, I'll whine when I want to.
If you're only interested in Robbie info, you're more than welcome to view Robbie's blog instead of mine.
This blog was started 2 years and 3 days ago as an outlet for my ugly stuff. I had been trying to conceive for year and a half and had just had a miscarriage. I was scared and hurting. I wasn't sure anyone would ever read what I wrote, but it didn't matter. I wrote because I needed to get it out- out of my head and out of my heart.
I went on to have another miscarriage and wrote my way through that.
I wrote through surgeries and failed cycles. Through my pregnancy with Robbie where I just COULD. NOT. STOP. SPOTTING.
I wrote from the hospital while I waited for him to be born. Through the tests and procedures and apnea and fear of the NICU.
I wrote through a lot of dark stuff.
And I still have dark stuff that I have to get out sometimes.
Fortunately I've found more light here than I ever imagined. The love and support that have found me through this blog and The Internet is humbling.
But in the end, this is my space. I'll write what I want to. I do appreciate the feedback. I left the comments because while I may disagree (I still think you're letting the Pres off too easily) I respect the opinions. I hope those with something unpleasant to say can respect mine.
P.S. The nice comments did NOT go unnoticed. I appreciate the love and support as always. Here are some more pictures, you gluttonous Robbie grubbers!
Big boys hold their own bottles.
I'm finally starting to hate baths a little less. I don't scream any more.
But getting out is still the best part.
You talkin' to ME?
All ready to go for a walk.
I love you Momma!
Haha! Upside down world is funny!
Contessa keeps my ear warm.
Mmmm parrot wings. A good source of fiber.
There must be some confusion. You seem to have put me down on my belly. HELP!
Wednesday, March 25, 2009
Pronunciation [ri-tahrd, for 1–3, 5; ree-tahrd for 4]
–verb (used with object)
1. to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
–verb (used without object)
2. to be delayed.
3. a slowing down, diminution, or hindrance, as in a machine.
4. Slang: Disparaging.
a. a mentally retarded person.
b. a person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.
5. Automotive, Machinery. an adjustment made in the setting of the distributor of an internal-combustion engine so that the spark for ignition in each cylinder is generated later in the cycle.
It seems simple enough.
To call someone retarded. It's just a joke. Right?
Except maybe they are retarded.
Robbie was so small because he had IUGR- Inter Uterine Growth Retardation. My placenta was starving him.
Now his growth is retarded because he hasn't eaten properly in months.
His development is retarded because.. well, lots of reasons, probably.
We have no idea what his future holds. He might be brilliant. Or he might be mentally retarded.
And suddenly the word means a lot more. Suddenly I cringe. When the President compares his lacking bowling skills to the Special Olympics, I'm offended. Personally.
When someone makes a joke about being retarded, I'm angry. Hurt, too. But mostly angry.
How can someone be so insensitive? So callous? So.. socially retarded?
I hate to be the PC police. I do. But as I've gotten older and more intimately aware of different circumstances, I see why phrasing can be so important. Words hurt.
It isn't so much the word, but the flippant nature used when saying it. Haha, aren't retarded people funny? They're so stupid. And you're stupid, too.
I'm here to say that the only person who is stupid is the person who can't choose a better insult.
Let's leave this word behind us along with "at least."
Tuesday, March 24, 2009
Her daughter was around 13, I'd guess. A former preemie herself (2 months early, she said.) and now was suffering from stomach migraines or something like that. Basically her stomach hurt as bad as your head does during a migraine. Poor kid.
The mom asked, of course, how old Robbie was. And as usual, I gave me "well, he's 9 months but was 3 months early so he's really small" speech. (Which is when she told me her daughter had been a preemie as well.)
Anyway, I ended up giving her the extremely shortened version of why we were there "He was born with a hiatal hernia and it hurts to eat so they fixed it and put a feeding tube in." Short and sweet.
And then she surprised me. She started to cry.
I wasn't actually sure what was happening at first. Her daughter looked confused, too and asked why she was crying as she went to get her a tissue.
The mom said "Sometimes you just think your problems are bad and then you realize other people have it much worse." as she dabbed at her eyes.
This, of course, made ME cry, and the lovely daughter brought ME a tissue.
About that time they were called back for their appointment. The mom wished us God's blessings and stroked Robbie's head. (And I managed to fight the urge to wipe his head down with an antibacterial wipe.)
I bring this up because I'm having that moment right now.
I just complained about Robbie's slowed development.
Then I caught up on some blog reading and gained some perspective.
Please pray for Stellan. They could really use it and would appreciate it.
Stellan is having a hard time coming out of SVT and it's pretty scary.
I'm going to sneak in and kiss my beautiful miracle on the head. Then I'm going to count my blessings.
Saturday, March 21, 2009
On mommy's lap waiting to be taken back to prepare for surgery:
In the pre-surgical holding area.
Post Surgery. Not feeling so well. Really flushed from the fever.
Finally catching a few winks after surgery.
I'm even cute when I'm stoned and in pain.
Finally feeling a little better.
Finally back home
Did you know I have feet?
They're elusive but there are TWO of them!
I could roll over if I really wanted to. I just don't want to.
I'm just watching the inside of my eyes. I'm awake. Really.
It's springtime! Time for a pedicure!
Peek a boo!
Am I in trouble?
Mommy took me for a walk!
There are geese in the lake. They're very interesting.
St. Patrick's Day. Kiss me, I'm Irish.
I think I bounced too much, mommy.
Look, I match my new quilt.
I love Contessa.
She just informed me she wants us to weigh Robbie later today "because [she's] so excited to see!"
Um. He was weighed 2 days ago and weighed 10 lb 12 oz just like 2 weeks ago.
When I told her that, I got a flat "Oh."
I also wish we could hit a milestone.
Not even because not hitting them is letting me down. I admit it's a bit disappointing at the time slips away and the milestones don't come. But really, because I feel like I'm letting everyone down all the time.
At least 5 times a week someone asks me with such hope in their voice:
"Is he eating better?"
"How much is he up to now?"
"What's he doing these days?"
And my answers always feel like rejection. No, he's not eating better. He hasn't gained any weight in 2 weeks. (Well, he did. He lost 5 oz and gained it back.) No, he's still chewing like his gums are killing him, but there are no teeth. And he's doing lots of things but none of the major milestones that "regular" families look for.
I try to explain that things are improving. *I* see the gains in small areas. I see him studying things, figuring things out. I see him rolling up on his side even if he won't roll over. I see the lack of spit up. I see the better sleeping and the easy smiles. But these things are hard to explain to the world who only sees the big stuff.
The time is coming that we are going to be released out of house arrest. I expect at his 9 month check up in a couple of weeks, we'll be able to start venturing out somewhere besides a doctor's appointment.
That's so incredibly exciting. But also scary. Because it means more comparisons. More questions that should be simple but just aren't.
The idle "How cute! How old?" turns into a dissertation. "He's 9 months but was 3 months early and has stomach issues so he's really small." Which always leads to more questions and more long answers. All in an effort to avoid the disapproving look that says "Don't you FEED him?" or worse yet "what is WRONG with him?"
And I SHOULDN'T CARE. I shouldn't. And if I felt like they were just looking down on me, it would be fine. But it feels like they're judging HIM.
Frankly, I'm afraid there's going to come a day when my white trash upbringing is going to mingle with my Irish temper and get bolstered by my momma-bear syndrome and I'm going to actually punch someone. You can laugh, but also tuck away some bail money.
So I feel envy. Envy for the super babies who are hitting milestones ON TIME, those who wear 6-9 month clothes when they're ACTUALLY 6-9 months old. Those who can answer "how old" in 3 words or less. Those who complain because formula and baby food is JUST SO EXPENSIVE.
And I kind of hate myself for it.
Friday, March 20, 2009
The people who were running it are looking for some more feedback and were hoping to get some of the blogging community to answer a quick survey. It only takes about 5 minutes.
A message from the people involved:
If you’d like to learn more about WEGO Health or our online fertility community, then I encourage you to join the conversation at www.wegohealth.com or http://community.wegohealth.com/group/pregnancyinfertility.
Wednesday, March 18, 2009
Tuesday, March 17, 2009
Monday, March 16, 2009
At least you know you can get pregnant.
At least you weren't further along.
At least you were far enough along.
At least you were in a good hospital.
At least he was viable.
At least he's doing okay now.
All of these are things that have been said to me during our struggles with infertility, miscarriage and premature birth.
Last week, a friend lost her husband to brain cancer. He leaves behind his wife and their their 3 month old daughter.
I heard "At least he's out of pain now." "At least he got to see his daughter."
It's not enough.
Can we please agree to never say "at least" again?
Someone always has it worse. We all know that. That doesn't ease the pain of those who suffer. It doesn't comfort. It dismisses.
It says to the bereaved that they should count their blessings. And while we all know there are blessings to be found in many places, sometimes we just need a hug and for someone to abide with us.
At least give us that.
Tuesday, March 10, 2009
He's also been in an exceptional mood. Just smiling and laughing and happy. At first I thought he was just happy to be home from the hospital, but it's gone on long enough that I think he just FEELS better. I guess when your stomach stops trying to creep out your throat, your days are a little brighter.
He was honestly a pretty happy, good-natured baby even before. Now he's just downright bubbly.
He's been napping a little better during the day (more like an hour at a time as opposed to the 15 minutes he would do before) but he's been more restless at night. I actually think he's having bad dreams. I'll put him down and hear him "crying." It's not normal crying, though. It's more like an upset whine. I can go in and check on him and he'll be sound asleep but whining in his sleep.
I wonder if he's having nightmares about the hospital. It breaks my heart, but hopefully over time that will ease.
The tube has been going pretty well. It still oozes just a little bit, but it's nowhere NEAR as bad as it was the first time he had it. There's no food leaking out of it. It's more that the stoma is still healing. We get a bit of oozy blood on his clothes but not soaking through or anything. He doesn't object to me cleaning it up or keeping it slathered up with Aquaphor to protect his skin so he doesn't seem to be in any pain.
I don't believe I mentioned it (if I had, I'm sure someone would have come to berate me) but we also had him circumcised while he was out. (If anyone wants to call me a foreskin hater or baby mutilator, go for it. Now's your chance.)
I mention it because it's on the list of things that are almost healed. With his G tube looking pretty good and his laprascopy incisions looking quite good, I'm more focused on the penis than anything.
I really was sincerely on the fence about doing it. It's the studies about disease prevention that had me leaning towards yes (or at least maybe.) Our pediatrician and my husband were all for it. Both David and I have close relatives who had to be circ'ed later in life (David's dad was in his 20s, for example) because of problems. So I finally agreed. Then I kept putting it off because, frankly, I didn't want to put Robbie through any more pain. But since he was getting knocked out anyway, I figured if I was going to do it- now was the time.
So it's done and mostly healed. He does have some adhesions that need to come off. They look pretty gross but several people have told me it's pretty normal.
I won't say I don't have a good dose of guilt about it. It certainly looks gnarly, but hopefully he won't hate me when he gets older.
With all of that going well, things are pretty normal (for us, anyway) around the house. Since he's been eating as well as he has, it's averaging about 20 minutes to feed him. Even with the NG tube before it was taking more like 40 or 45. So I've suddenly found myself with some extra time. That means more playing with Robbie. And that is amazing.
Really, not having to worry about him starving himself is nothing short of amazing. I think it makes me a better mom because I'm not constantly sticking a bottle in his mouth or tape on his face or worrying about him pulling the tube in his nose out. I get to actually ENJOY him. Instead of begging him to eat or crying because he won't I just say "okay.. you're done.. no problem" and we move on.
So as much as I dreaded the tube and the surgery, I do feel it was the right decision.
Sorry for the boring update. But I know when I go too long w/o a Robbie check in, the natives get restless. So there it is.
To make up for the lack of excitement, how 'bout some pictures? And videos?!
This is a short video from the hospital. This is your baby. This is your baby on morphine.
A much happier Robbie. Though he's mostly mesmerized with the camera. I swear it's just a plain ol' point and shoot. No flashing lights or happy tunes.
And some pictures:
I'm even cute when I'm stoned and in pain!
Did you know I have feet?
They're elusive but there are TWO of them!
Monday, March 9, 2009
I came across
from when I was 16w pregnant. Looking back I wonder if that wasn't the beginning of my pre-e. My subsequent doctor's appointments were fine, but maybe that's when things started to go south. It was intermittent but there?
After that point I had some trouble with migraines. Maybe they were a result of high bp?
I hate to Monday morning quarterback, but I can't help but to wonder.
It makes me sick to think that it may have started as early as 16w. But it's entirely possible.
P.S. Robbie's doing well. His eating is a little better. Not "normal" of course, but better than it was before the surgery. And he's clearly loving being back home. He's been in a great mood for the last few days.
Thursday, March 5, 2009
Robbie successfully digested his food all day. The surgeon took his stitches out and left the discharge to Dr. GI so she could discuss his food schedule.
Dr. GI was rounding about noon but apparently got called out for an emergency and went running off the floor. (The nurses told me.) She didn't get back until quite late in the day. I was getting nervous and was afraid she'd forgotten us.
About 4 I called the nurse to see if there'd been any word from her. About 2 minutes later, she walked in. She said "How would you feel about" and I finished for her "GOING HOME!? YES." and they all laughed at me.
It took some time to get the orders written and it was time for Robbie to eat. In the meantime, a nursing student (who is one of "us" btw, IVF, recurrent m/c momma. She was super duper sweet.) said her instructor asked if we'd let the students come look at his Gtube.
I consented to looking but no touching (he's been prodded plenty.) So they all came in. I had to laugh because the instructor was using me as a source of data. Eventually it turned into what felt like a mini lecture by me. I even took questions at the end. I sort of apologized to the instructor (who was quite nice) but he insisted I was "the expert."
Robbie took it all in stride. He didn't fuss or cry even one time. Just smiled and flirted. He was quite a hit. I was so proud of him.
After we got the paperwork done and found a replacement part for his G tube (there's always one fiasco, right?) we were out the door.
It is SO nice to be home. My chair. Robbie's swing. The Tivo. Heaven!
I used our pump with Robbie's tube for the first time and managed to pump nearly 2oz of breastmilk into his swing and had to cuss a lot, but it was still great to be home.
Robbie immediately passed out. He barely opened his eyes when I got him ready for bed and tucked him in. I swear I saw him sigh in comfort when I laid him down. I think he's as happy to be home as I am.
I'm sure the next few days will be a learning exercise in getting used to the tube (I'm still figuring out the best way to get to it w/o having to strip him for every feeding.) but we'll get there.
He's still eating about the same as before the surgery so I didn't get my miracle eating turnaround, but at least I'm not constantly worrying about him pulling out his face tube and we know we can keep him nourished.
I'm officially requesting no more hospital stays. We got referred to as "frequent fliers" yesterday and I wanted to be offended, but when you've have 4 hospital stays in 9 months, I suppose it's true.
So this is it. Smooth sailing from here on out- RIGHT?
Wednesday, March 4, 2009
At that time Robbie was screaming his head off to be fed. What a lovely sound! He took another 2 oz.
The plan as I know it is to feed him as he wants tonight and see how it goes. In the morning, if he's digesting well, we'll go to full feeds and see about that.
If it's well, we might get to go home tomorrow!
Also- I posted a shortened version of the last two days over on Robbie's blog, if anyone is interested.
It's like moving from a no-tell motel to a Westin. It's a large room with set up like a mini suite. And there's a bathroom. THANK GOD FOR INDOOR PLUMBING.
And yes, I had an icee.
We seem to have turned a corner on the peeing and the pain. His last 4 diapers have been soakers and he's now getting regular Tylenol only.
And really, not even the Tylenol since he's not digesting it.
They have his tummy vented. Basically a tube hooked to his G tube site to let the air escape so it doesn't build up and hurt. Of course, gastric juices also come out.
When she gave him the Tylenol late this morning, she closed the tube for about 45 minutes to let it absorb. When she opened it again it came shooting right out again.
he has started passing quite a lot of gas this afternoon, so I'm really hoping that his guts are starting to wake up. but for now he's still NPO.
Right now they're not saying when we can go home. Certainly not today. I'm holding out hope that his guts start working and he starts eating and digesting and we can go home tomorrow. But I'm getting a lot of comments like "in a day or two." so it may be longer.
GI did finally round this afternoon. First the NP came in. Now, I really LIKE the NP, so I was a little let down, but was still determined to bring up my frustrations.
I had just said "Dr. GI acted like I was crazy when I...." and who should walk in but Dr. GI herself.
I said "oooooh.. we were JUST talking about you."
She launched right into basically giving me info I already had and I think was going to leave, but I wasn't having it.
I said that she had told me that he was too young for adhesions but Dr. Surgeon said he removed several. Then I just let it hang.
She was quiet a moment and finally said "well, it is quite rare. We just don't see adhesions in NICU babies that have surgery." Then she added that they've only seen two babies with hiatal hernias and basically insinuated that maybe he's rare in more than just that way.
I gave her a disapproving look and asked if this was likely to happen again. I was trying to make the point that perhaps we could be a little proactive in diagnosing problems.
She nodded and said that yes, if his eating improves and then declines again, we'd certainly do a gastric following study to see if there was a narrowing somewhere or indications of adhesions. And yes, because it's happened once, he is slightly more likely to have it happen again.
Anyway, right now we're just hanging out waiting for his guts to truly wake up. I'm hoping now that he's off the massive pain killers and moving around quite a bit more, that'll speed up.
At least we're both far more comfortable now. I'm not done worrying yet.. certainly he needs to get things moving so he can be nourished again, but I have less things to be worried about now. We're moving in the right direction.
He's still NPO. They just drew his morning labs. (A BMP and a CBC) After the results of the labs come back, we'll go from there.
Right now, best case scenario is that we get moved out of the PICU onto the peds floor. That would be a great improvement for ME as it means bathrooms and a couch. (And closer access to the Icee machine.)
The good news of the day is that his pain level is much more manageable. He got morphine every 2 hours throughout the night but they did skip his last dose and he's doing okay. I believe they're going to try to switch to Tylenol 3 as needed.
The surgeon said that he removed some adhesions during the surgery (scar tissue from his first surgery) that may be causing a lot of this. While I appreciate the explanation, that infuriates me a bit.
I specifically asked the GI doc about that and she said he was "too young" for adhesions. She should be rounding on him this afternoon. I believe we're going to have words.
Anyway, thanks for the continued thoughts and prayers. We still need them but I will say that having him no longer writhing in pain is a VAST improvement. Now we just needs his gut to work.
Right now we're a little concerned about him metabolically. He hasn't peed in 8 hours. And when I put his feeding tube on to let some gas out hoping to make him more comfortable, the little bit of food he'd eaten over the last 7 hours came bubbling back out. (and also caused him to scream for a little bit, when it should have done the opposite)
The got the house pediatrician paged.
Robbie is now NPO for a time and his IV fluids have been turned up. He has until 2am to pee. (It's a little after midnight as I type this.)
They're going to do a panel in the morning to see if he's dehydrated or what's going on in that regard.
The better news is that the last dose of morphine seemed to actually do something to his pain level and I'm seeing bits and pieces of the real Robbie peeking through. I hope that means his pain level is dropping and things are improving.
At this point I don't know if we'll be going home tomorrow or not. At the very least, I hope we can be moved out of the PICU into the regular peds area.
The PICU is NOT family friendly. (Yes, I'm already complained.)
There are no beds- not even a couch. I have a recliner that doesn't even recline all the way. There are no bathrooms not just in the room, but in the entire area. I'm having to use a bathroom in a public waiting room down 2 hallways from here.
All of it.
Tuesday, March 3, 2009
The surgeon thought he'd just need Tylenol. He's had 2 doses of Fentanyl and is about to receive his second dose of Mophine and he's still stirring every 5 minutes to whine (or occasionally wail) in pain.
My nerves are shot, honestly.
I know things will be much better in a day or two, but right now, watching him in pain is hell.
Pray for fast healing.
P.S. Can you pray for the other kids in the PICU? I've been listening to many of them cry out for their mommies today and it's really killing me not to go comfort them, too.
Surgery got moved up a tiny bit to 11am. We have to be in at 9. Robbie gets no food after 2:30a. I'll be feeding him at 2 and hoping that the excitement of the morning distracts him from the fact that he's hungry.
Because Robbie has a sick sense of humor, he was starving all day today. He even ate almost an entire bottle tonight. More than he's taken since we left the hospital, actually. I have a feeling I'm really going to have my hands full when Robbie gets big enough to really plot against me.
But we know it needs to be done. So the bags are packed. I'm pretty sure that all I need to do in the morning is pack up the laptop, load the car and stare longingly at a Xanax.
I'm nervous. My head is throbbing with a tension headache.
I spent the day playing with Robbie and telling him what tomorrow will bring. I took lots of opportunities to kiss and tickle his tummy. I got lots of snuggles in before he is likely very cranky for a few days.
While I dreaded tomorrow, he played with his new toy. He hasn't quite figured out how to jump yet, but he's rocking and bouncing a little. He seems to love it. I swear I didn't buy it out of guilt. Buying him off was just a bonus.
Think of us tomorrow around 11am CST. I'll update when I can.
Monday, March 2, 2009
Sunday, March 1, 2009
He did FINALLY take a nap about 4:00 this afternoon which was a relief. But I'm still tired, of course.
I'm growing more and more apprehensive about Tuesday. Surgery has always made me nervous. Anesthesia scares the shit out of me. It always has. It scared me before I ever had a surgery. Then there was the D&C where I woke up before my body did and I couldn't breathe and I thought I was dying. And then there was Robbie taking 3 days to wake up.
And yes, I know the doctor doesn't think that'll happen again but I'm still scared.
I also worry about the pain he'll be in afterward. The one benefit to him having been on the vent for so long last time was that they were able to keep him dosed on Fenta.nyl. (Which also probably contributed to him having to be on the vent so long.) This time, hopefully, he won't be on the vent so pain management may be more troublesome. It makes me feel physically ill to think of him suffering.
I'm also nervous about if it'll work. The trouble with being hopeful that something might REALLY help is that I could be let down. I want so much for him to eat, if not normally, at least enjoyably.
I also admit that the seclusion has been getting to me. Alexa wrote, "Four months of RSV quarantine, in case you are interested, turns out to be exactly the amount I can endure before my seams start to show." and lordy, lordy is she right.
My MIL came to visit this weekend and David and I took advantage of the free babysitting and actually went out to dinner. It was actually our first dinner out alone together since Robbie came home from the hospital. We did go out with some friends several months ago, but those 2 occasions are the only meal-away-from-home times we've had in 6 months.
We literally had an excited conversation that included me saying, "Just think, before too long I'll be able to take him to the grocery store with me!" Big plans I have. I hope I don't get carried away.
The dinner was wonderful. The service was slightly disappointing but I refused to let it get me down. I'd have gone to the kitchen to get myself a drink if I'd had to. I ate until I was miserable. Appetizer AND Dessert- the decadence!
We even lingered after the meal just to talk a while. It was so needed.
Last week when I had Robbie at the hospital for the surgery consultation and the Upper GI, I had a headache. I stopped by my best friend's office (she works there) to ask if she had some ibuprofen. She said yes, turned to go get it and I literally said out loud "Oh good, because mommy has a headache."
I SEEM TO HAVE LOST THE ABILITY TO REFER TO MYSELF IN THE FIRST PERSON. It was actually embarrassing.
An adult meal later and I have found my subjective pronouns again.
But now we're back to the grind. I'm trying to keep my mind busy with list making. What to pack, what needs to be done, things to arrange, daydreaming about the end of RSV season and the fun things we'll be able to do. (I also *might* be checking the cdc.gov website for RSV info to see how the season is going. (Not that I'm counting the days or anything.)) But I keep looking at Robbie and worrying.
I've already explained to him that Tuesday is going to be a really sucky day and apologized for it. But I've also explained that it's really necessary and hopefully within a few days his tummy will feel much better.
Until then I'm just taking extra time to tickle and kiss his plugless belly. Soon it will be encumbered again. I know we have little choice. But man it sucks.
And with that, I leave you with this:
"I am," I said
To no one there
An no one heard at all
Not even the chair
At least Robbie's a better listener than the chair.