Thursday, November 26, 2009

Happy Thanksgiving

I'm not going to enumerate all the things I'm thankful for today. I think our many blessings are obvious. I give thanks every day I wake up to a full house and every night when I go to bed in a house with full beds.

I look around at my little family and feel completed. The journey here was rocky, but worth every bump & bruise.

Today I am sending my love to those whose rocky roads lead some place they didn't mean to go. To those whose journeys haven't ended.

Thanksgiving is a holiday about family. The commercials talk about togetherness and joy. I know too well the feeling of an empty seat at the table, the unwelcome questions about when you're going to get married, have a baby, try again.

To those who are surrounded by well-meaning but misguided family and friends, I send love and prayers for peace.

I awoke this morning with devout thanksgiving for my friends, the old and new. -- Will Carleton


Happy Thanksgiving everyone.



--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

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!