Thank You!

Clearly, I’ve been negligent in my duties, having not updated the blog in so many days! Well, I can tell you, it’s been a heckuva few days, for sure! So here’s a big post to cover this past week.
First of all…thank you! Jeffrey’s baby shower was yesterday and there were a lot of people there. Mary and Liane did a spectacular job organizing the event, and the Hilton Fire Dept allowed us to use the multi-purpose room at the Exempts Hall. It all came together beautifully, and only Mother Nature saw fit to throw some flurries our direction. Everyone enjoyed the cupcakes, cookies and M&Ms while Danielle opened up gifts on his behalf. He received so many wonderful toys, clothes and baby gear. A great time was had by all, and it showed us what we already knew… we have really great friends! We can’t wait for you all to meet Jeffrey!
Now we back track to earlier this week. The boy’s done so well gaining and growing since he’s moved to an open crib. On Tuesday, Nurse Judy informed us, “The only reason he’s still here is because he has trouble drinking from a bottle,” Yes folks, the doctors have decided that they want to fast track our boy on outta there! During rounds that morning, they discussed that Jeffrey has not had a single issue outside of feeding in 5 days. They are considering, if they can get his feeds under control, of just having a 3 day countdown instead of the traditional 7 day. In fact, at his “advanced” preemie stage, they wave the car seat test after 37 weeks (Monday, Feb 27) – but we’re going to do it anyway.
Judy told us that we need to find a nipple for bottle feeding that will make him not de-sat or stop breathing. So that night we went to Wal-Mart and bought one of every type of baby bottle they had, save for the few we already had at home. Nurse Julie tried a few of them, but in the end he prefers the Haberman nipple provided by the hospital. Wouldn’t it figure that the one that works best is the one that $20 each?
Meanwhile, Mom hasn’t had a very robust week. She came down with the same upper respiratory junk that I had last week, except worse. Even still, she managed to drag herself into work each day, and up to the floor to see our son and nurse him. By Thursday, she was about at the end of her rope and only stayed long enough to manage the CAP inspection of her lab before calling me to take her home. Friday was the peak of it, and fortunately she started on the mend for her baby shower.
But let’s talk about Friday. I went into school for my Networking final practical exam. Just before the start of the exam, I got a call from Danielle. She had just gotten off the phone with Kathy. Kathy is the discharge coordinator at the NICU. She asked Danielle how she’d feel about sending Jeffrey home on a monitor. Dani told her that she was home sick, and she’d like to talk it over with me. Apparently they need our permission to do that, or something. Kathy was kinda pushy about when I might be home so we could call back with an answer. Dani told her I was in class until 4:00 PM, and Kathy said we’d have to leave it until Monday.
I went to the hospital after my exam (piece of cake, by the way!) to talk with his nurse and find out what’s going on. Julie had just finished administering oxygen to him following a pretty significant apnea spell. She was surprised that we had gotten a phone call and told me that Jeffrey was not ready to go home – heck, the doctor’s hadn’t even rounded yet for that day until just before I’d arrived. I told her that I was concerned that Jeffrey was being pushed out. She took the time to listen to my concerns, especially the fact that we’d been told all along that he wasn’t going home on a monitor. Julie told me that Jeffrey definitely was not ready to come home – breathing and eating are two very important things and he really needs to get the hang of both of them simultaneously.
Jeffrey had a pulmonary consult on Saturday. We’ll have a chance to talk to the attending doctor on Monday about it. But when it comes down to it, Dani and I do not want Jeffrey to come home on a monitor or before he’s ready. I know that the NICU is teeming at the brim. I know that there are lots of sick babies who need good doctors and nurses. But I also know this: our baby needs good doctors and nurses too. I know that when I’m on the ambulance, I don’t tell a less critical patient “I have another call… are you alright to make it to the hospital yourself?”
Until he’s really ready to come home… we’ll just take it one day at a time.
Vitals: 1940g (4 lbs 4.4 oz) today, which is a gain of 10g today and 50g yesterday. He’s still having a little trouble remembering to breathe, and he had another dip tonight where his nurse had to rub his chest to get him started again. He’s in a new room today as of 6 PM, and it’s a little crowded with 4 babies to a room. Because room is tight, he had to move into a smaller crib, and his night nurse Thembi is going to see if she can get his mobile to fit. Hopefully they will open another room in the morning so the nurses aren’t overwhelmed.

21st Century Digital Boy

Jeffrey's first Tablet PC

I don’t have too much to say right now, since I haven’t been to the hospital yet today, but I wanted everyone to know that he finally made it to 4 lbs! I’ll add more to this later, but for now I leave you with these pictures from yesterday when Grandma visited.

The Future is Now

When last we left our loyal readers, Jeffrey had just broken 1700g and was eating without the assistance of a feeding tube. Oh, that is sooo last week!
So where to begin? I found out on Wednesday morning that Dr. Thingvoll and some of the other fellows have been reading the blog, and that they enjoy the parent’s perspective on “Life in the NICU”. Hello!
Nurse Cindy has kept Jeffrey on the straight and narrow with his feedings, and he’s being given 2 oz. at each feeding, though he doesn’t necessarily consume it all. I can still remember his first 2 cc. feeding only a few weeks ago – oh how the time flies! It’s been wonderful to see how he’s been able to grow. Just 2 weeks ago, he could barely breastfeed without dropping his heart rate and going apneic after just a few swallows. Now we hardly hear the alarm on his monitor go off during a feed for more than just a quick “blip”. Everyday is a new discovery; a new milestone.
On Friday, Danielle came in to feed Jeffrey and noticed a pleasant surprise – no more nasal cannula! It was so obvious that she nearly missed it. Of course, with babies in an isolette, you can’t very well say, “Hmm… there’s something different about you! New glasses? Are you parting your hair different?” But there it was, as plain as the lack of tubing on his face… his face! It really means a lot to see and hold him with fewer wires and tubes and tape on his body. I took a lot of pictures. When I came up, Cindy had just called to tell us that the PICU was kicking us out of our room because they needed it (the NICU “rents” the rooms from the PICU as vacancy warrants and need merits). Kathy came up to help us in our migratory path across the PICU to the cardiac care suite – the new home of the NICU annex. We had fun packing up an entire room’s contents plus all three babies and setting up shop. Kathy even let us pick which spot we wanted. It’s a corner with a nice view out the window. Finally, when we were done moving, we were able to give Jeffrey his first bath. He tolerated it well and only cried a little as we wiped him clean. You have to wash them very methodically and most importantly, quickly, since his tiny body doesn't maintain heat very well. We wrapped him up in towels, dressed him up in layers and put a cute hat on him before we fed him. What an ordeal!
My Mom and sisters arrived at our house just after we got home on Friday. Each sister had a daughter in tow: my nieces Brianna, 7 and Tori, 6 months. Since Jeffrey’s not home yet, we had perfect accommodations for the baby. Danielle’s Mom graciously offered to come up for the weekend and help us get the house in order for the baby shower, so by the time my family showed up, the house was looking better than it had… well, since Dani’s Mom left 4 weeks ago!
The remainder of the party guests arrived Saturday at around Noon. After a quick tour of the house, we headed to Olive Garden for a relaxing meal and a fun time for all the ladies. I got to tag along, probably because I’m the only one who brought a camera. We got back to the house by 4:30 pm and watched pictures and movies of the boy on our Xbox with Xbox Media Center. Then Danielle opened gifts. Jeffrey received so many wonderful toys, baby care items, bedding, outfits and decorations. Everyone was very thoughtful. I’ve posted pictures of the shower here. It was so nice to be able to see everyone and share this exciting time in our life with them. Normally, being so far away, we really only get to see the entire family like this at Christmas, and then it’s so busy with trying to run to everyone’s house in time, get food ready for 40 people and hold a conversation with so many that it’s hard to get to visit with everyone.
Today we went to see our son and were in for a new surprise. Nurse Judy told us that she’d just ordered an open crib for Jeffrey, and it should be up soon because today was his last day in an isolette. How exciting is that? If you’ve been following along, you’ll recall that an open crib is another check box on his Candy-Land route to coming home. Like Nurse Cindy told us on Friday, things are going to move much faster now. He’s eating more, gaining weight faster and will be whipping through the paces so fast that before we realize it, he’ll be home! And, of course, she’s right.
As each day passes, my alternate lyrics to the song I’ve been singing him are becoming more and more inaccurate.

[To the tune of Bow Wow Wow’s “I Want Candy”]
Change his diaper when he gets wet
Spends his days in an isolette
He just thinks breast milk’s fantastic
Through a feeding tube that’s nasogastric

Chorus:
He’s so tiny, he’s so tiny

Oh, come on… you try to come up with a song that rhymes “Nasogastric”!

Vitals: So close today! With a 60g gain on Thursday, we thought for sure that he’d be 4 lbs (1812g) on Friday. Nope. Saturday? Nope. OK, Sunday then! Nope. Holding at 1795g, just a half an ounce shy. Tomorrow for certain! Follow up vision test tomorrow at 2:00 PM. We’ll be following up with the nurses to be sure that he holds his temperature in the open crib, but we’re not too worried. Cindy and Judy are pretty determined nurses, so I’m sure that if they think Jeffrey’s ready for the open crib, then he’s ready.

103 new pictures this week! Click the link "Pictures and Videos of Me" in the sidebar on the right to view them!

So Very Tired

It’s time for a post from Mom. Brian and I are having a breakdown week. It seems like the stress of running and worrying has finally caught up with us. We’ve been trying to put a good face on for everyone but the truth is, this is a lot harder to deal with than we expected. Don’t get me wrong, Jeffrey is doing well and he’s making progress every day but it’s just taking its toll on us. I’m tired. Brian is tired. We could use a day off. Since that isn’t possible we’re trying our best. Our boy is worth it.
Mom offered to come up and help us out for a few days this weekend and we pretty much leapt at the offer. Not having to deal with some of the normal daily duties is a gift greater than gold right now. Hopefully as he gets closer to home we’ll morph into some type of routine and at least get used to the exhaustion. The nurses assure us that it will be easier when Jeff gets home. At least then, I’ll get to wake up to a baby instead of an alarm to pump. The sound of Jeffrey crying will be music to my ears when compared to the voice of Brother Wease on WCMF which graces my alarm every morning at six.
Stats for Jeffrey: He’s up 15g to 1715g (3 lb 12.5 oz) today. They pulled his nasogastric tube yesterday and he is eating all on his own. Yeah!! Today he started ad lib feeding at 45cc’s. That means that we feed him when he gets hungry and cries, instead of exactly every three hours. It’s great. He’s getting a little more social now, he stays awake for longer after eating and we get to do more than gaze at him with adoration in his fort. They upped his medications today. They have been giving him Reglan and Pepcid to help with his reflux and they are going to increase his dosages with his weight. The nurses say that he may go home on these medications and that he should hopefully grow out of the reflux by the time he’s about a year old.


Don't forget... there's still 2 more days to enter the "Guess His Weight" contest! Post a comment in the story below!

Contest #1

With such support and continued readership, we wanted to find a way to show our gratitude. So we’re having a contest. Here’s how it works:
Each time I post on the blog, I try to give the most updated vitals for the day. Most of these are measured around 5-6 PM each night, give or take depending on his mood. For the contest, we’re looking for you to submit your guess (as a post on the blog) of what Jeffrey’s discharge weight will be (in grams, since that’s how he’s measured at the hospital). The winner will be the closest, either over or under, to his actual weight on the day he leaves the hospital. In the event of a tie, the winner will be the one who posted first, so if you see someone has already posted the same entry as you, you might want to change it +/- 1 gram or so.
The prize? A $10 gift certificate to Amazon.com. In order to be fair, entries must be posted by 2/18/06.
OK, on to the boy! Today is a great day for food! He had all of his feedings since 9 AM by bottle, and Danielle is going to nurse him tonight at 6 PM and 9 PM. That’s a half day’s feedings without the tube. Of course, if he gets tired (it’s a lot of work!), he’ll have to go back to an NG feed, but we’ve got our fingers crossed. Once he gets to all feedings “PO” – that’s latin for “we stick it in his mouth” – then we get another check mark on our discharge laundry list!
Danielle and I are getting ready to host her baby shower with my family. They’re coming out from Northeastern NY, near Glens Falls. I’m certain it will be a motley caravan, filled with sisters, aunts, nieces, nephews, Mom & Meme. It’s only a 4 hour trip across I-90 from there to here, but with bathroom breaks and stops for snacks, I’m guessing, oh… 10 hours. (Hint: take Route 67 from Ballston Spa, 87 Exit 13N, all the way Amsterdam!) My sister-in-law will be traveling that lonely stretch of Lake Ontario liner known as Route 104 with my nephews Skyler and Hunter. The two groups are converging on our house for the day/weekend to welcome the boy, see the new house and share in the Rochester goodness. Bon Voyage!
We’re just sitting here at home now, waiting. And waiting. For the furniture delivery guys. Don’t get me wrong, we’re waiting for Jeffrey too, but chances are his dressers will be here first… though staring down the road as their 11-2 delivery window passes, I’m starting to wonder. Mike and Kevin came over today to help get a ceiling fan installed in Jeffrey’s room, and it looks great. I was excited that I got to use my new saws for the first time.
Vitals: Two feedings in a row yesterday without any heart rate or breathing difficulties.
1.625 Kg as of last night or 3 lbs 9.3 ounces for the non-metric world. By the way, that’s also 8125 carats, a little over a quarter stone, 25,000 grains, or about 52 troy ounces. Did I leave anyone out?

Update: 9 PM - 1.655 Kg.

That depends on your definition of “Good”

When you have a new baby, you can’t help but have it be the focus of most of your conversations. Almost everyone will greet you with “Oh, Hi! How’s the baby?” Usually, we respond with “He’s doing well/good/great”, because to us, he is. It all comes down to how you define “good”.
If you were to see me in the hallway and say “Hey, Brian! How’s ya doin’?”, “good” might be interpreted as “I’m feeling well, just ate a ham sandwich, and think I’ll go for a walk now.” When we answer about Jeffrey, we really mean that he’s doing well – for a 34 week gestational age preemie. What that means for him is that, maybe he only stopped breathing 6 times today, or his heart rate dropped over 100 beats per minute just once during a feeding. When we found out that he passed his vision test, it means that things were still growing into place, but there weren’t any defects observed.
I talked to my Mom this week about the upcoming family baby shower. We’re really looking forward to seeing everybody and showing off our new home; especially the new nursery. But I felt really bad when I told her that we wouldn’t be able to bring everyone up to see the baby. I know how much everyone loves to hold babies – they’re just so damn cute! (Ours especially – not biased at all!) I’m sure that my family was looking forward to seeing our boy, and he’s “good”, but not good enough to handle that many visitors. Golisano Children’s Hospital is a level III NICU and the Regional Perinatal Center, and as such has very strict policies about visitors. The policy stands that Mom & Dad and both grandparents have access 24/7. Then, depending on his condition and that of the other babies in the room, we can have 2 support people per day, and only in our company. I hope everyone understands.
My geek solution to this is a webcam. During the shower, I’m going to go into the hospital with my laptop and my webcam, and set it up to look at Jeffrey. We’ll be able to see and hear him (though not the other way, it’s too much stimuli for him). I hope that will make do until he’s home and healthy enough to have visitors. His doctors tell us that will be a few months after he’s discharged.
While we’re on the topic of misinterpretations, I thought I’d mention something I overheard in the waiting area of the NICU last night. Two NICU mothers were talking about their pregnancies and one mentioned that she was really disappointed about not being able to carry her baby the full 9 months. So many people had told her that she was so lucky not to have to carry the baby during those “brutal” 8th and 9th months (she delivered at 27 weeks). While she understood the kind intentions of the comment, she was looking forward to looking down at her growing belly, feeling the forceful kicks of the baby as her daughter grew older, and seeing her hand or foot pushing out against her abdomen. While there’s any number of horrible physical things that a woman’s body goes through during those last 13 weeks, she would have traded it in a heart beat for not having to go through the ups and downs of having a child in the NICU.
The other mother countered that with a comment made by a checkout clerk. Apparently this clerk had a few children of her own. “If you think you’re tired now, just wait until you get your baby home!” This is horribly discouraging! I can attest to the fact that it’s a lot of work having a baby in the NICU. Danielle only just began nursing the baby, and until that point had to rely solely on a breast pump to maintain her milk supply which is so important to the baby’s growth. Every two hours, hooked up to a machine, is very different than the human emotional response of feeding your child when they cry for milk. In our case, we’re very fortunate to have friends and family who’ve volunteered to make meals, provide transportation and help out with projects around the house to keep us from going insane. For this, we’re very grateful. There are many other parents who are in more difficult situations.
We hope that things will get easier when Jeffrey comes home. We won’t have to drive to the hospital 2-3 times per day, 7 days a week. We won’t have alarms and monitors going off all around us. Jeffrey will be able to maintain his temperature, heart rate and respiratory rate all on his own (more or less).
Now all we have to worry about is sickness, hazards around the home, riding a bike, the freaky dates he’ll bring home, borrowing the car… oh, I hope it gets easier!

Vitals: Our boy is growin’! His weight is up to 1575g. He’s been taking most of his 31cc (about 1 oz) feedings orally, either by bottle or by jug, and with fewer and fewer “events”. His vision test came back with no anomalies, and he’s scheduled for another test before he goes home to check out the rest of his development, sometime around week 36. Another head ultrasound revealed that the IVH on the left is nearly gone, and slightly decreased on the right. They did find a periventricular leucomalacia cyst on the right side, and they’re unsure how that will affect him. It may possibly affect motor movement or right brain learning, or it may be completely benign. We’re hoping for the latter. Chris Tryon, the child development specialist fed him on Wednesday and told us that he’s reacting exactly as a 34 week neonate should, and his neck muscle development is quite good.
And on the topic of heads, he out-grew his first set of clothes: 2 hats.

Open Mouth, Insert Feed

Last night we had a great time at the Gates Ambulance 42nd annual banquet. On either side of the banquet, we hung out at the NICU and gave Jeffrey his feedings. It was really nice to see all of our friends from GVAS and to catch up with everyone. Of course, we brought pictures to share. Danielle was in a great mood because Jeffrey had his first complete feed from nursing. It sure tired him out, but he dined at Café Mom for almost 25 minutes.

Today I had a chance to give him a feed from a bottle, which is how he’s getting more and more of his feeds when Danielle is not around. One of his goals is to be completely orally fed and off the feeding tube before he can go home. The success of his feedings is being reflected in a steady weight gain. He’s up to 1.53 Kg (3 lbs 5.8 oz).
As far as meds go, he’s still on Reglan and Pepcid for GI motility and reflux. Tomorrow he’ll be 34 weeks old and will get an eye exam. From what I hear, it’s a pretty scary ordeal to watch, and Jeffrey will need eye drops to dilate his pupils. It’s another check box on his way to coming home.

Alicia finished his bedroom on Saturday. The pictures are all online now, and the mural is so beautiful… even better than we imagined. This morning I set up the crib and a bookshelf in there, along with Deb’s mobile. It’s very cute.
Finally… a plug for our local baby store, Simon’s. We stopped in there today at 4:03 (not realizing that they close at 4:00 PM). Our same salesman, Joseph, was there. We told him that we wouldn’t be long, we knew exactly what we wanted – just the Peg Perego SIP car seat. His co-worker went into the store room and grabbed one for us. That’s when he told us – the Britax infant seat is better, and $40 less expensive. Even though the store was closed, he took us into the car seat area and gave us a quick breakdown of the two 2006 seats, side by side. We were convinced, and now we have our new car seat sitting atop the stroller and ready for Jeffrey’s NICU car seat test.
Now, all we need here is the boy…

PS: (Thanks for the reminder, Sue) Jeffrey was wrapped in his Terrible Towel tonight while his Pittsburgh Steelers won their 5th Super Bowl, 21-10 against the Seattle Seahawks. Jeffrey says "One for the Wrist"!

State of the Isolette Address

State of the Isolette Messages to the Blog reading public are mandated by Article II, Section 3 of the Constitution which states,"Babies shall from time to time give to the Bloggers information of the state of the isolette, and recommend to their consideration such measures as he shall judge necessary and expedient."
Senior NICU analyst here with some in-depth coverage of last night’s State of the Isolette Address. Jeffrey drew applause from both sides of the NICU pods in his bi-partisan address. He stated in his speech that, “Inside the isolette, I’m warm, and together we can make me warmer.” He also called for an end to dependence on supplemental oxygen, which he called, “an airway addiction.” Healthcare was, of course, a large focus of his address. He called for a ban on nasal cannulas, medical tape and quarterly belly measurements.
Jeffrey also detailed new energy initiatives. These include increasing his feedings to 27cc eight times per day, increasing the caloric intake with HMF and conserving his energy for when he’s ready to move to an open crib. Expressing concern over home heating costs, Jeffrey announced that he would be lowering the temperature on the isolette on a gradual basis until it reached room temperature. And while hydrogen power has been a very popular topic of discussion, Jeffrey appears to be conducting his own research into “natural gas”, despite other members of the pod's concerns about its related toxic emissions.
Jeffrey spoke briefly on his exit strategy for the NICU, which he called “a clear plan for victory.” He avoided specifics in favor of broad themes that included building an inclusive family unit, forging ahead with breastfeeding and striking at infections. He characteristically declined to offer a timetable for NICU withdrawal, despite calls from Rep. Meehan (Dad, Hilton) and Sen. Meehan (Mom, Hilton). He pointed out the increasing role that Mom & Dad were taking with feedings, changings and playtime, and hoped that over the next few days “we should be able to further decrease our medication levels.”
Vitals: Up 30g today to 1455g (about 3 lbs 3.5 oz). He’s maintaining his temperature well and tolerating being dressed and undressed several times per day. His belly circumference measurements have been fine, as have his head circumference measurements. Dr. Murray told us today that the IVH on one side of his brain has receded to a level 1, while the other still remains a level 2 – though that’s likely to decrease with his next head ultrasound next week. His nasal cannula has been cut down to room air at 0.5 lpm. And finally, his attempts at nursing are getting more successful every day.
Jeffrey says… vote Quimby!

Over the Lips and Past the Gums...

Today Nurse Cindy taught Jeffrey a new trick: drinking from a bottle. She told us today that she noticed some rooting reflex going on, so she tried his 9 AM feeding with a bottle. He took about 10 oz cc from the bottle before he got tired out. Hey, it’s a lot of work! The rest of the feed was done with his tube. For the 12 PM feed, he got the bottle again and did over half of his feeding with it! To complete his feeding trifecta, Dani thinks that he was able to latch on for his attempt at nursing tonight.
Dr. D’Angio stopped by today and told me again that he’s pleased with Jeffrey’s progress. He and Nurse Cindy explained the discharge checklist to me. He’s got 2.5 things completed on it… and like 10 more to go. Mostly, Jeffrey needs more meat on his bones! But oral feedings are on that list, so today’s milestone is an important one.
Vitals: Up 20g today to 1410g. That’s another ¾ oz! His feedings have been increased to 26cc (8x/day). He’s still on just a puff of oxygen at 0.5 lpm and varying concentrations of 20-25%. All of his events today have been self-corrected. That’s great!
Interesting fact: Compared to this girl, Jeffrey is a moose! The world’s smallest surviving neonate, Rumaisa Rahman, was born in 2004 at Loyola University Medical Center in Maywood at just 8.6 ounces.