Sunday, December 27, 2009

A lot of laughter

One of my favorite parts about parenthood is the random stuff that tickles him. This particular evening, David threw Robbie's O-ball up and caught it. This was apparently the funniest thing Robbie had ever seen, and deserved applause as well.



He's definitely ticklish. I dare you to listen to him and not be tickled, too.



This is a game Grandpa plays with Robbie quite often and Robbie just eats it up. This time it was Grandma's turn and Robbie was HIGHLY amused.


In amazing news, Robbie actually took 2 unassisted steps on Christmas Eve! He took another today. He absolutely could walk if he chose. But right now he thinks our attempts to get him to stand or walk without help are hysterical. If you watch him, you can see he doesn't fall. He controls his descent. This was actually taken last week even before the steps.



Robbie loves music, even his Momma's mediocre singing. One of the biggest challenges in getting a child to talk is getting him to "turn on his voice." Music is a great way to encourage that, so we take turns "singing." (That's the "Row row row your boat" part is.)
Of course, hand motions are just plain fun. He sometimes mixes up the sign for "more", the Itsy Bitsy Spider motion and the "roll it" motion from Pat-a-cake, but usually catches himself and corrects. Sometimes he does the motion for the "spider" or "roll it" and looks at us expectantly, obviously requesting a song.



--Trish

Friday, December 25, 2009

Merry Christmas Everyone!

Christmas Eve



Christmas Day


Ho ho ho!
video

--Trish

Tuesday, December 15, 2009

December pictures

Mmm, still loving my thumb.

My old friend Lexi and I went to our friend Gavin's baptism party.



I still say Santa looks a lot like Gavin's grandpa.



Mommy's friend and his daughter came to visit that day, too.



Let's see where this fits



I see you!



This week on mini WWE wrestling, Remarkable Robbie takes on Scrappy Santa.



Daddy's a good snuggler.


How many zeros in a million again?


Taking in the sights with Dad



The jumper is even fun when I'm not in it.



The tongue helps point the way.



Nick Nolte is my hero.


He's got eyes of the bluest skies as if they thought of rain.

Tuesday, December 8, 2009

Take 5?

Just a quick note to say ear tube surgery is cancelled again. He has another cold (yes, ANOTHER) and started coughing a bit last night. By 3:30 this morning, his breathing was sounding thick and he was coughing pretty hard. So we started nebulizers for the 4th time this year.

I called to cancel and the surgeon himself called me back. I think they are starting to wonder what's going on, but I don't know what we can do about it. He said they can do the surgery with a head cold, but with Robbie a head cold turns into wheezing almost every time.

I never thought I'd see the day I missed quarantine, but I think I'm officially there. Say some healing prayers for Robbie!

--Trish

Updated:
Spoke w/the pediatrician and she added pulmicort to his drug cocktail, and actually wants him to stay on it for the rest of the winter. Twice a day until he gets the tubes, then once a day for the duration of germ season.

She was sure to point out that he now holds the record for most tube reschedules. My little guy is setting records everywhere he goes.

Monday, December 7, 2009

It was brought to my attention today that I haven't updated in forever. My apologies!

Thanksgiving was very low key and lovely. I somehow managed to contract the plague and spent most of the weekend obsessively washing my hands in an attempt to keep it away from Robbie. I think I've succeeded since he's not sick (yet.)

He did get yet another double ear infection. By Wednesday night before T-day it was pretty apparent, but of course, there wasn't much I could on Thursday. Friday we saw the covering doctor and she confirmed our suspicions. She wrote the script for the antibiotic to continue past the 10 day course, so that it should take us right up to his next attempt at ear tubes.

That attempt is scheduled for this Wednesday the 9th. Keep your fingers crossed! He needs to be healthy, specifically with clear lungs, so they can use the anesthesia. This is take #4, and I swear if it doesn't happen, I will cry. He's had at least 2 ear infections a month since August, I believe. I've honestly lost count at this point.

Other than ears, though, he's doing amazingly. His therapists are blown away, we're blown away. It's great to see.

He can now "answer the phone" (put the phone, or any object really- even his hand) up to his ear and say "Hello?", he waves hi & bye, he can give you five (though high-five still confuses him. He wants to clap his own hands together), play "so big" & "Peek-a-boo", he claps and conducts for almost anything. He's still signing "more" and "all done" though he prefers to say "all done" (though that one is a little annoying since he wants to be all done eating when he really should be eating more). He can point to his hair & his nose, and yesterday he pointed to his eye once, though that one he hasn't repeated yet, so maybe it was a coincidence.

He's moving a TON. I think he's finally hit the point where he's crawling more than he's butt-scooting. He's cruising a lot, climbing over things along the way. He even stood unassisted for about 10 seconds in physical therapy last week. Now he's started to let while standing. He clearly wants to walk, but his skills haven't quite caught up to his desires yet. This, of course, has let to a ton of falling down.

We put a mat in the living room to help cushion him a bit, but he still manages to knock his head really well at least once a day. Tonight he somehow managed to stumble while crawling and gave himself a very large bump on the forehead. I was only a few feet from him when he did it, but didn't see it happen. I think he must have hit the corner of the wall because it broke the skin and left a HUGE welt. Even David gasped when he saw it. The swelling did go down a bit about an hour later, so hopefully it's not too horrifying in the morning.

Eating is pretty steady. The Wednesday before Thanksgiving, he suddenly decided he didn't want to eat at all (and this was after 2 1/2 or 3 weeks of continually eating really well- as much as 7 oz of solids on particular day) and it continued all of Thanksgiving weekend. I assume it was because his ears were so awful. By Tuesday it picked up a bit and has improved a little bit most of the week. He hasn't had any superior eating days, but he's close to normal for him. (averaging about 4 oz of solids per day.)

Along with all of his great new skills, he's also learning a bit more independence. With that has come the dreaded Temper Tantrum. I'm trying to focus on the fact that it's normal and expected, but man, he will ball up his fists and grit his teeth and just shake in anger. He's so serious that it really is funny, but we don't dare laugh. For the most part, we're just ignoring it. He hasn't lashed out (yet) so for now, that's working.

All in all, he's doing really well. And of course, he's cute as ever!


Now that he can pull up to stand at the dishwasher, the dishes are his chore, right?



So big!



Happy Thanksgiving, Grandma!



These are my groceries. Get your own.



Here Grandpa, let me show you how it's done.




--Trish

Saturday, November 21, 2009

Even more

I honestly don't know what to say about the developmental explosion happening in our house. It's remarkable, just like Robbie. I can't keep up. It's something new every day.

In the last month, he's gone from 2 words (uh-oh and kitty) to probably 7 or 8. And he'll mimick a lot more sounds. A month ago I was wish he was better on all fours, now he can crawl forward and backward, and sit himself up. He had just started cruising, now he's practically dancing down the length of the couch and is pulling himself up to stand. A month ago he had four teeth, now he as 6.

He'll now say "hello" when the phone rings, and plays peek-a-boo with his hands over his face. He can do the "spider" in itsy bitsy spider, claps for almost every song and will even "conduct" with his hands (and no one can figure out where he learned that.) Yesterday he started throwing his hands in the air for "so big!"

He is eating pretty well. At least 4oz almost every day. He's even been experimenting putting finger foods in his own mouth. He doesn't generally get them down, but he's testing the waters.

In short, it's amazing.

See for yourself.


Some words. Yes, I know you probably don't know what he's saying, but we do and that counts.



Who needs to walk? Let's run!


This one is dark, but you can see him get to his feet:


Which way do I go?


And what started with fussing & just not knowing what to do with his feet:



Turned into actual crawling within a few days.


We're blown away.

--Trish

Tuesday, November 17, 2009

Awareness

November is Prematurity Awareness month. November 17 is Prematurity Awareness Day.



The March of Dimes has asked that those of us who blog to write about how prematurity has affected us in honor of the day. As the MoD and their research is responsible in large part for Robbie's life, I could hardly say no.

To many people, a preemie is just a small baby. During our 96 days in the NICU, if I had a dollar for every person who asked "So when he's four pounds he can come home, right?" we'd be, well, more financially sound. Unfortunately it isn't so simple. Size is the least of the problems that face a preemie, particularly those as small and early as Robbie.

Robbie was born 14 weeks early. Those 14 weeks cheated him of time for his brain, gut, eyes and lungs to develop. When they pulled him from me, he didn't cry. His APGAR score was 3. We were incredibly blessed that he roused reasonably easily and "pinked up" meaning that oxygen was finally nourishing his body.

When they brought him to me for a brief kiss before whisking him to the NICU, he could only open one eye. I wouldn’t see Robbie again for many hours. Robbie's NICU friend Gavin, born 2 days earlier than Robbie, still had fused eyelids when he was born. He wouldn't see his mom for another few days because his eyes literally weren't ready to do so yet.

We wouldn't hold our children for days, sometimes weeks. Robbie was 5 days old before I was able to hold him. And it took two highly skilled nurses to situate him on my chest. It was the happiest day of my life. I was able to hold my son for nearly an hour, just sitting still, finally able to feel his skin on mine.

The next day his father would hold him for the first time. After spending 30 minutes on his dad's chest, Robbie started "acting funny." He was so tiny that he couldn't maintain his temperature and became ill with a condition called "cold stress." Something as simple as holding our own child could put him in peril. Fortunately the quick thinking and attention of a veteran nurse saved the situation from becoming dire.


Robbie's brain was too immature to remember to breathe all the time, his lungs too underdeveloped to process oxygen properly. His muscles were too weak to take a breath deep enough to breathe oxygen in and carbon dioxide out. He was intubated – a breathing tube threaded into his esophagus & to his lungs, delivering life saving breaths. He was hooked up to leads; three on his chest to track his respirations & heart rate. They were moved daily to try to keep his skin from breaking down under them. It was too thin and fragile to handle for long the sticky gel that kept them attached. He was given an IV in his umbilical stump. He had another lead wrapped around his foot to measure his oxygen saturation.

The oxygen saturation was the number we would come to love and hate. For many weeks, it would cycle sometimes twice per minute, alarming if it got too high and again when it got too low. We NICU parents would stare at that number all day long. In the "real world" an oxygen saturation below 95 is cause for concern. In a neonate, they'll accept 80. Many, many times it was much lower than that. We prayed his brain would be able to overcome it. His brain and his body wasn't mature enough to care for itself yet.

This dance was normal in the NICU. When we asked how Robbie was doing, we heard "normal preemie stuff." No matter how abnormal it felt, it's what every preemie experienced.

There were other things, too, of course. Infections in the lungs from the tube shoved into them, blood in the stool because his intestines weren't prepared to work yet, central lines to administer drugs & nutrition before his stomach could handle actual food.

Suffice it to say that the NICU was no picnic for a baby meant to still be floating in the dark and quiet of the womb.

Prematurity stole more than just a normal life for Robbie. It stole much from us as parents, from me as a mother. In the hours before Robbie was born, I wrote as much as I could. I was heavily drugged and afraid I wouldn’t remember things clearly, so I wrote blindly, unable to even focus my eyes on a screen. I wrote about feeling cheated. We didn't yet know Robbie was a boy and had taken to calling him Tater in honor of a particularly delicious baked potato I got from the hospital.



I feel cheated.
Yes, cheated. I haven't even made the 3rd trimester yet. I was just getting to the point of being able to identify what parts of what were jabbing me where. Just learning my Tater's habits. Tater likes icing. Prefers white butter cream. Tater is unimpressed by apple juice and won't kick for that. Tater is not a morning baby. Tater doesn't like it when mommy cries. What else would I have known in the next 3 months?

I will be cheated of the announcement; "It's a _______."

I am in a labor and delivery room, and the table where most babies are set for their welcome to the world sits in the corner taunting me. I suggested putting the flowers that came today on it. It may as well be used for something.

I am cheated of looking pregnant. The maternity clothes I finally ordered will be returned unopened.
Oddly enough, I don't feel the jinx guilt I thought I would. I think of the outfit that David brought home from Vegas and instead of thinking that we jinxed ourselves, I think of the relief I feel that at least we had bought the baby SOMETHING.

I had a melt down yesterday because we have nothing for the baby, but quickly melted a different direction because it doesn't matter that we have nothing for the baby because the baby isn't coming home for months anyway.


I am cheated of a baby laying on my chest, still covered in grossness and full of beauty.

I am cheated at true breast feeding, though I will pump for the NICU. They encourage it and I'm glad to serve some purpose.

I have been cheated of stupid things like my child birth class, and breast feeding class and hospital tour. All of which would have been wasted since I will never labor, will pump and won’t even deliver at the hospital we had planned on anyway.

I'm cheated of packing a hospital bag. Of arranging care for my animals. Of taking a shower before I went to the hospital. Of being able to lay on my side (the fetal monitor doesn't like that).

I'm cheated of holding my husband's hand as I push our baby out. Of seeing the look on his face when I finally make him a father.

It's 5am in the hospital on a day when it's entirely possible that I may give birth to our child and instead of being filled with excitement & giddy nervousness, I'm filled with dread & fear.



Robbie was born 6 hours after I typed those words.

Of course, we now know that we were blessed with so much more than we were cheated out of. And the NICU wasn't all bad. While it certainly was the scariest thing I've ever experienced, I found much support there. The parents there became some of the best friends I could know. The doctors & nurses truly rooted for our children in a way that few experience.

And along the way, miracles occurred. Within minutes of Robbie's birth, he was given a dose of surfactant. It was developed by the March of Dimes and allowed his lungs to expand. He would receive a second dose later. Both times, his lungs capacity was transformed. The medicines and procedures that tortured him also saved him. We saw babies crash and be resuscitated, only to go home a few weeks later. We saw babies wheeled out for their good-byes only to be back in their isolette homes the next day. We saw babies survive the unthinkable and not just survive, but thrive.

One of the first days that Robbie was there, I remarked to David that I could feel God's presence around me. I could angel's wings on the backs of the nurses. Miracles occurred there.

So on this day, I ask for your awareness. Please be aware that the March of Dimes saves lives. It saved Robbie's. Be aware that not every child does survive and we need to do more. Know that not every child gets to go home. If you can spare it, make a donation. There is a badge below to give in Robbie’s name. Be aware of the struggles that the neonatologists, NICU nurses, parents and premature babies go through. Be aware that miracles happen every day. I know. I live with one.








--Trish

Monday, November 16, 2009

More

Yes, another video. This one blew my mind.

Robbie really likes the "D" sound, so everything is "dadada" even words that have other sounds. Kitty, for example, is diddy.

Saturday I was trying to encourage him to say mama by saying "mamamama." Suddenly Robbie put his hands together in what looked like the sign (American Sign Language) for "more." I said as much aloud. When I said the word more, he did it again!

I was floored. So I got him up and put him in the highchair and fed him. Sure enough, he kept signing it and kept eating! He ended up eating about 4 oz of applesauce & strawberries all whilst signing more.

He also can do a little bit of "all done." He doesn't have that sign quite right (he pats his legs instead of pushing them out) but he makes up for it by saying "ah duh!"

It particularly astounds me because we we really haven't worked on "more" a lot because he rarely wants more of anything. I know they've done it at daycare a bit at the request of his developmental therapist, but she just made that request two weeks ago.

I just wasn't expecting it. What an amazing surprise!

He's really getting into mimicking now. On top of his signs, he also claps along with "if you're happy and you know it" and moves his hands a bit for "itsy bitsy spider." My favorite thing is that he'll "conduct" with his hands when you sign. I have no clue where he picked that up. I asked at daycare and they said they don't do it. But he sways his hands to the song. This weekend I even caught him doing it while he was babbling, so I'm pretty sure that he was "singing."

I'm telling you, just when I didn't think I could love the kid any more, he does something else to amaze me and I love him a little deeper.

With that, I present "MORE FOOD, PLEASE!"





--Trish

P.S. I would be remiss if I didn't also add that he is also trying to mimic David making farting noises with his hands. David does it, and Robbie will put his hands together and try to copy. God help me.

Friday, November 13, 2009

Videos

Well, ask and receive!

Tuesday night Robbie managed to crawl a few inches! It is still really awkward and he fusses the entire time, but he did it on his own. He still can't quite coordinate his legs and his arms, but he made some forward progress. I tried to get it on video, but as usual, as soon as the camera came out, he was done.

So you'll have to settle for some videos of other recent accomplishments.

First up, Robbie doing a little cruising. This was one of his first days being able to move a bit, so it's not super dramatic, but he does move. You can also see him trying to clap his hands when I'm singing. We usually sing "If you're happy and you know it, clap your hands" so he was trying to play along.



Next is another video of him scooting on his butt. He was trying to chase be down, so I thought I'd challenge him a bit to come get me. He's gotten a lot better at aim since this was shot, but you can see how quickly he can move on that butt.



And finally is some of his walking. Not the greatest video because I was staying right in front of him. The floors are slick and the shopping cart is light. I was afraid it would go flying out in front of him, so I didn't leave much room. But you can see him taking steps and moving along.



--Trish

Wednesday, November 11, 2009

Improvement

The breathing/coughing is improving. The cough isn't gone, but it's markedly improved. I even let him sleep all night last night instead of waking him for a breathing treatment.

Of course, it's still bad enough that he can't get his tubes tomorrow. The surgeon's office was very understanding, thankfully. Right now we're rescheduled for next Wednesday. Now we just hope I can get off work. Ay yi yi.

Other than that, Robbie's doing great. I'm on vacation this week, so we're hanging out together. It's been fun. He's been eating well (for him) for the most part. Monday I got about 6oz of food into him. Pretty sure that's a record. He ate a full jar in the morning and half a jar in the afternoon. He did throw a little bit of the afternoon jar back up, but he didn't choke or freak out, so it wasn't as horrible as it could be.

Pretty sure that yesterday he started repeating "all done" when I would say it. Of course, it sounds more like "ah duh" so maybe it's wishful hearing, but I do think he's trying.

That brings his vocabulary to 3:

Uh-oh
Kitty
all done

The only one he says reliably is uh-oh, but whatever. He's getting there. He'll probably have his speech evaluation next month and then we can start work on that a month or so after that.

Movement is going great. He's cruising pretty well now and tonight was even able to use a walk-behind toy to get across the living room. He's a speed demon on his butt. It's so fascinating watching what he chooses to do now that he's in control. We've definitely had to start some baby proofing, including keeping the gate to the stairs & the door to the back (two steps down) closed. It's certainly more work as a parent, but I'm loving every minute of it.

If we could just get him a little better on all-fours, we'd be golden. Crawling would be lovely, of course. More than that, though, it would allow him to transition from laying back to sitting and relieve a lot of his frustration. You can see he wants to do it. He can even get up onto all fours, but he just can't hold it while moving so he can figure it out.

Last week in developmental therapy, his therapist was so pleased at his progress that she remarked that she wouldn't need to see him for very long. Score!

It's been amazing watching him learn new things and learning more and more about his amazingly bright personality. Truly, we could be more blessed as his parents.


--Trish

Sunday, November 8, 2009

Sick again

The sniffles & slight cough of last week has turned into a big cough this week.

Thursday morning he woke up coughing pretty hard. I checked on him at day-care midday and they said he'd been doing a lot of pretty miserable coughing.

I got lucky and found a clinic I could get him an H1N1 vaccine that afternoon, so I took off work early and went to get him. When I picked him up, he really did seem uncomfortable, so I called the doctor. He didn't seem to be struggling to breathe and wasn't wheezing, so I felt okay not taking him in, but wanted to know what I should do.

Dr. P recommended albuterol (we keep it in the house at this point) for 24 hours. If he improved, keep it up until it was gone. If it didn't, bring him in.

By Thursday night he really seemed miserable. I gave him breathing treatments every few hours, and he still wasn't wheezing or retracting, but he just didn't seem right. At bedtime, he coughed and coughed until he inevitably puked all over his bed. We got him cleaned up, I got him elevated & then listened. He finally fell asleep and seemed to be breathing okay.

It was a long sleepless night for me. I kept thinking we were headed to the ER. I even did the laundry expecting to need to pack a bag for a hospital stay. But he seemed to be holding his own. By morning, he sounded a bit better.

I took him to daycare and told them about the rough night & that he seemed a bit better. I'd check on him midday again and see what they thought.

When I checked, Katie said he just didn't seem like himself. He didn't sound bad, but he was fairly lethargic and just not right. He didn't want to sit up, wouldn't play. I called the doctor right away and got an appointment for the afternoon.

When we got there, he started wheezing. When we got into the exam room I held my breath waiting for the pulse-ox to come up. I just knew the hospital was in our immediate future. Much to my pleasant surprise, he was saturating about 97%. Phew!

They gave him another breathing treatment which improved him a little, though not dramatically. She checked him over and found yet another ear infection to go along with his lung issues.

The combination won him inhaled steroids to be added to the albuterol & antibiotics for the ears.

He's scheduled for the tubes this coming Wednesday. She thought it was possible he could clear up enough by then to get them, but honestly, I would be surprised. We'll make that decision on Monday.

For now, he's doing a bit better. Still wheezing, still crusty. But not struggling and his energy seems to be a good bit better. He's been sleeping a lot, but that's probably at least partially due to the interrupted sleep from having to be up to do breathing treatments.

It's an ugly cough. I'm quite certain he's sore from the physical act of coughing as well.

We could use some prayers that his lungs clear.

--Trish

Monday, November 2, 2009

New Skills

Robbie has a few new skills these days. He still can't (won't?) crawl, but he doesn't really need to. He's figured out how to bounce across the floor on his butt. The video below was taken last week. He's got a lot faster since then. The first video also shows him transitioning from sitting to his belly. He's been working on that skill for a while. There were lots of head thumps for a bit, but he seems to have it down now.

video

He also is clapping and waving. He's been doing both for a little while now, but he's now getting much more dependable about it. These days you can say "bye bye" and he waves. Often while staring at the door wondering who's leaving. And almost any time you say "yay!" or someone on the TV cheers, he joins in.


video

--Trish

Sunday, November 1, 2009

Halloween


Happy Halloween from the world's cutest kangaroo!



Daddy couldn't resist a smooch.



I think I like my flamingo better than my joey, though.



We went to a Halloween party at my daycare.


My grandpa's even here!



Nicholas & Maddie were all born within a few weeks of me.



A dingo ate my baby!



Maddie didn't seem to want to hold hands.


Night night!

Thursday, October 29, 2009

Some October pictures



Mommy got the coolest ballons for her birthday!



da da da da da da da da Bat man!



You're so silly!



I eat candy?



Help! Grandma's trying to steal me!


Stairway to Heaven, anyone?



Look how long my hair is getting.




The high chair rocks. It's just that crap that put on the tray that sucks.



Just let me go, grandpa. I'm ready to take off!



When I think about you, I touch myself....



Cheeeeeese!







Friday, October 23, 2009

Grandma

Robbie has had an exciting week. His grandma (David's mom) has been visiting all week and keeping him home with her during the day. They've had a ton of fun. His grandma is happy to hold his hands and walk him through the house all day long. What more could a pre-walking baby want?

It's also meant Robbie hasn't gone to daycare all week. I'm sure he misses his little friends, but it's one less week he's exposed to germs, so it's a bit of a relief for us.

Of course, even though he's not at daycare that hasn't kept us from what has become our weekly visit to the pediatrician. He's had ingrown toenails for about a year now. I try to keep them properly trimmed and goop them up with neosporin when they get red, but this week, they won. Both big toes started looking really ugly on Monday. I was hoping to win the war, but last night one of them started oozing some grossness, so we headed in to the doctor this morning.

She confirmed they are infected and said he needed antibiotics. I was caring for the toes themselves properly, but he needed oral antibiotics as well. She added that she doesn't see ingrown toenails in babies very often, but she has seen it before. She said it's definitely genetic and we discussed all the members of my family who have had issues. I apologized to Robbie for the bad genes.

Then I asked her to check his ears because he's been rubbing at them again. She checked them, and sure enough- another double ear infection.

Now, I know you're thinking "wait, didn't he get tubes last week?"
Well, the answer is no. He should have gotten them on Wednesday, but early Tuesday morning I checked on him and found that he was burning hot- About 102. His doctor swabbed him for strep and the flu. Fortunately both were negative. His throat was pretty irritated, but it was declared "just a virus" and he'd just have to wait it out. It only lasted about 36 hours, but that was enough to keep him from having the surgery. It's rescheduled for November 4th.

Even Dr. P seemed exasperated today. "When does he get the tubes again?" It's certainly abundantly clear that he does need them. Hopefully this round of antibiotics will take care of both his toes and his ears and then the tubes will offer us a longer term solution. We're all sick of antibiotics.

In the meantime, he gets plenty of TLC from his grandma. It's good for both of them.





--Trish

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