Sunday, September 30, 2007

Bath time at home


While feeding Jac last night, we realized that his skin had patches of pink "hot spots" from getting too warm, and that his skin was somewhat sweaty. We decided to give him his first bath at home...

We washed him in our kitchen sink. He seemed to enjoy it greatly.

25 foot oxygen line


We now have Jac on the big oxygen tank with a 25 foot hose so that we can move around the house without having to pick up the portable tank. With the main tank at the center of the house, we just pick Jac up and drag the hose behind us -- we can reach every corner of the home this way. It's pretty easy, except when the dogs interfere with the hose -- usually, it's Knutson going to sleep directly on top of the line.

Friday, September 28, 2007

Nice doggies!

Our dogs were curious about the new addition to the household. They spent much of the afternoon with Taj, Jac and me.

For the past two months, Taj and I have been concerned about how well Paula-dog would behave when Jac comes home. She is an anxiety-laden dog with some behavioral issues. About a week ago, we started her on Prozac and Xanax to calm her down. The meds seemed to help, but we still had no idea how she would specifically handle the baby's arrival.

It turned out that she behaved very well. She was curious, but otherwise fine with Jac. Paula was even well behaved when the respiratory tech was at the house. At one point, the respiratory tech stood right over her -- and she didn't mind it. In fact, she even licked him a couple times when he was close to her.

Knutson, our older dog, was completely lovely as usual. He, too, was curious about Jac.

We're home!

A short drive from the hospital, and we're home!

Soon after we got home, a respiratory technician came to deliver and instruct us on the proper setup and use of Jac's oxygen tanks. We also received the SpO2 monitor which we'll use to spot-check his oxygen intake.

One good piece of advice that he gave us was that we learn baby CPR. We'll be looking into that.

We spent the first several hours home in Jac's room. We fed him, changed him there, and just spent time in the chair with him. It feels great to have him home!

Leaving BCFH

Jac had a busy morning as we went through the final process of getting him home. We started by verifying his ankle ID bracelet against Mommy's ID bracelet to confirm that Jac was in fact our baby. After cross checking the ID numbers, we removed his bracelet (more of an anklet), the ECG leads and the SpO2 (pulse ox) sensor. Finally, we disconnected Jac from the hospital oxygen supply and put him on a portable oxygen tank.

While Mommy gave Jac his final meal at the hospital before hitting the road, Daddy gathered up the rest of the stuff that we had brought to the hospital -- a tub full of bottles and pumping kits, the bottle warmer, the baby wipes warmer, preemie clothes, blankets, the Amby Baby hammock, foam mattress, camera tripod, wi-fi router... We accumulated a lot of stuff in the last month and a half!


With everything ready, we took our last pictures in the hospital and said goodbye to everyone. It's time to go home!

Thursday, September 27, 2007

Jac has passed the car seat challenge

Jac took his car seat challenge tonight -- one of the final checks to make sure that he is ready to go home. Getting him strapped in was a little disconcerting at first -- as we weren't exactly sure how tight to make the straps. At first, it seemed like Jac was struggling against the straps that may have been too tight; but loosening the straps seemed like they wouldn't secure him in an accident. Our nurse showed us that there should be just enough slack to slip two finger beneath each strap. We waited an hour to see if he had any saturation problems. Jac passed without any incident.

In fact, about 15 minutes into his test, Jac fell asleep in the car seat. At the end of his test, we decided to leave the car seat on the ground with him in it, so that we wouldn't interrupt his sleep.

Wednesday, September 26, 2007

Crazy Baby


Jac was a bit crazed today for a couple of his feedings. We let him go 4 hours before we woke him up to eat - since he had not woken up on his own - and he was crazed. He had a great deal of difficulty getting himself organized enough to eat. We have now adjusted our schedule to wake him up after 3 hours if he has not woken up on his own. Hopefully this will help him not be so hungry and crazed. We are definitely going to have to play with this after we get home to find what works (for now!).

Jac ate well today though and exceeded his minimums for the 24 hour period even before his last feed of the evening! He is definitely his father's son! He gained 20 grams today which is amazing to me given how much energy he expended eating with me. He was awake for several hours today - some of them fussy and some of them quiet alert - I call this social time - which is what one of his nurses at Children's named it many moons ago.

If all goes well tomorrow should be our last full day in the hospital! I am going to sleep now and I am going to enjoy it (even though I have to get up every 3 hours to pump ;).

Tuesday, September 25, 2007

Plan: Homecoming Friday

If all goes as planned we will bring Jac home on Friday.

He has to keep on eating (which he seems to have down) and continue to gain weight - which he seems to be doing well at and we can go home.

He passed a room air challenge today - 1 hour without his oxygen without desatting. He is going to go home on oxygen to help him grow (the elevation thing is a real killer!) but he can do without it for a little while. This is very good because it means I can take him off it while I give him a bath etc.

NG tube is out


With NG










Without NG




Jac's NG (nasogastric) tube is out! Yeah!

He had an OG (oral gastric) tube the entire time he was at Children's and an NG tube since he got to Boulder!

His face looks cleaner now - less tape and one less line to worry about when we move him!

Jac breaks 4 pounds

Jac takes after his Daddy! Man can he eat!

Around 1 pm he ate 50 ml with me and around 2:30 pm he ate another 10 ml and around 5 pm he ate 57 ml with his nurse! Around 9 pm he ate 35 ml with Daddy!

He is waking up and demanding to be fed. His 12 hour minimum feed amount is 132 ml and he is exceeding that!

He gained 42 grams today and he now weighs 1830 grams - 4.03 pounds! I was worried he would not gain weight today because he spent so much time awake with me!

He was wake with me for several hours today - hanging out - looking at me. If I turned him so he could not see my face he would squirm and try to turn his head to see my face. So cute!

He also knows now when I pick him up and head toward the chair where I feed him that he is about to get food. When he is crying after waking up and having his diaper changed because he is hungry and I pick him up and head toward the chair he will frequently calm right down and start looking around!

Jac is on ad lib feeding

Jac is on ad lib feeding as of the 6 am feed this morning.

He took full bottles (40 ml) at 3 am and 6 am and then went to ad lib.

He woke up at 9:45 am and I fed him a 50 ml bottle and he took all of it - every last drop!

Noon until Midnight feeding

Jac's feedings from the bottle from Noon until Midnight

Noon: Full bottle

3 pm: 10 ml from bottle - 25 gavaged

6pm: 40 ml - Full bottle with Daddy

9 pm: 40 ml - Full bottle

Midnight: 38 ml - Full bottle

Last night he only gained 6 grams but tonight he gained 52 grams!

Unless something happens overnight we are going to ad lib feeding tomorrow. If he does well with that and gains weight we could be home by Thursday!

I can hardly believe it! The nurses are all so excited to see him doing so well - they are all asking that we bring him back as he grows so they can see him!

Just a few days ago I didn't think he was coming home until next week but now!

Keep your fingers crossed!

Go Jac Go! He is a star eater!

Monday, September 24, 2007

Father and Son



Enough said

Jac really wants to come home

Jac took every bottle from Midnight until Noon! Full bottles! There is really serious talk about ad lib feeding- maybe even starting tonight!

Go Jac go!
Jac took every bottle from Midnight until Noon! Full bottles! There is really serious talk about ad lib feeding- maybe even starting tonight!

Go Jac go!

Winter's a-comin'

It was a hectic weekend getting baby supplies and the last pieces of furnishing that we need before Jac comes home. We made yet another trip to Target before they closed last night, and stayed up `til midnight to assemble and put things away.

We woke up this morning to thunder, rain and hail. Winter is looming over the neaby mountains, so I'm glad that we're mostly ready to hunker down at home with Jac.

Sunday, September 23, 2007

Amby Baby is great

He is continuing to really enjoy his Amby hammock bed. We purchased this bed from a company in Australia for him and it will be coming home with us. I think this bed may be our savior as it is going to take him a while to grow out of his reflux and this bed seems to help him settle as well or better than sleeping on one of us.

Amby Baby has made a video about the product which is on YouTube and they also have a blog.

Jac ate really well today!

Jac ate so well today! If he keeps going like this they are going to pull his gavage tube very soon!

6 am: Full bottle

9 am: 21 ml

Noon: 26 ml

3 pm: 15 ml

6 pm: Full bottle

At the 6 pm feed his nurse changed him and did the rest of his cares and he barely stirred. She started his gavage and as soon as she did he woke up and started crying. She stopped his gavage and gave him a bottle and he took the whole thing.

9 pm: 20 ml

Wow! Keep on drinking Jacie boy!

Jac having his diaper changed

Daddy went to visit Jac without me this evening - I was working on getting Jac's room ready for his near imminent arrival!

He took a small video of Jac which really captures Jac when he is handling things well. In the video he is in the middle of a diaper change which he is learning to handle a bit better.

Weight update: 1732 grams - 3 pounds 13.2 ounces


Jac now weighs in at a whopping 3 pounds 13.2 ounces. In the last two days he has gained 70 grams!

He is really growing! They are continuing to give him very fortified breast milk plus MCT oil plus I am pumping hind milk for him. Apparently all of those efforts are paying off as he is really starting to look more like a fat little baby - even with a small double chin now.

The car seat challenge

While doing his 9pm feeding tonight, the nurse reminded me that Jac will need to have his cart seat challenge...

We don't have a car seat yet -- Jac is too small to use one, so we're having an infant car bed loaned to us for the first month -- but when it's time for him to move up to the car seat, we'll test Jac's ability to ride.

The car seat challenge involves hooking him up to the pulse-oximeter while he sits in the seat for an hour. The idea is to make sure his oxygen level will be good during a long drive. I suspect his ability to hold his head up will be key to passing the test... Right now, Jac's neck isn't all that strong.

Getting better and better at bottle feeding

Jac is continuing his progress in bottle feeding! Although he still occasionally takes a gavage (3am and 3pm on Saturday), he's now feeding mostly from the bottle. And when he's on the bottle, he usually finishes 70% or more. On Saturday, he had a full bottle with the nurse in the morning, and took another full bottle from me at noon. At midnight today (Sunday), he finished another full bottle -- and did it fairly quickly.

He is getting much better at coordinating his breathing with his sucking and swallowing of milk. He even managed to do a series of 1-1-1's (Suck once, swallow once, breathe once; and then repeat), although he still mostly alternates between series of sucking followed by a swallow, and then a series of breathing before repeating.

It feels like he's on the verge of taking every feed from the bottle; and then, with 70%+ consumed at each feed, he'll be ready to go through his ad-lib feeding test.

Saturday, September 22, 2007

Big shopping spree for Jac

We spent the better part of the day today crossing off the shopping list of things we need for Jac before he comes home.

It was the first time I stepped foot inside Babies R' Us to take in the vast array of all the baby gear that one could/should/must buy. Hmmm, I think I just felt our condo shrink.

We also went to Costco, Target, PetSMART, and Office Max today. All for Jac.

At Costco, we saw a mom with a bunch of kids and her cart of purchases. Five of the six were hanging on to the cart like passengers on the S.F. Muni cable car. The sixth child, walking with mom, was the sole girl of the bunch...

Visit from Leslie and the girls.


Our friend Leslie, her two daughters, and their friend all came to visit Jac today.

The older daughter brought Jac a really nice gift -- A very soft, rubber-ducky blanket that she made by herself!

They had a great time oohing and aahing over Jac. The girls giggled during Jac's diaper change.

Friday, September 21, 2007

Jac gained 16 grams

Jac gained 16 grams tonight. His nurse said he pooped a lot tonight - and it really does make a difference when you weigh him! He now weighs 1662 grams (3.66 pounds).

Thursday, September 20, 2007

Amby baby

Jac got a new bed today - from Australia.

It is called the Amby Baby hammock bed and he seems to really like it. It is made by a company in Australia and I found it when I was reading http://www.drsears.com.

The idea is to keep him a bit upright (althugh with the fancy beds in the NICU we can keep him very upright) and to give him some motion - but only motion that he makes.

We shall see how it goes but he seems to like it so far.

Probably going home on oxygen

It looks like Jac is going to going to have to go home on oxygen. I was so hoping we were going to go home with a cord free baby but it looks like it will take a little more time before we achieve that.

The NNP told me that it is very common for little babies here to go home on oxygen given the elevation. She said that when she has worked at sea level that babies are not allowed to go home on oxygen - if they need it they have to stay in the hospital.

We will be given both a large tank version for the house and a portable version for going out - like what you see some older people carry around. They will test to make sure that he is fine when the canulae comes out (which I already know he is - he can go quite a while without it) before we go home.

He will have it probably for at least a month before we go to the pediatricians office and have a room air test to see how he does.

Jac has another refluxy day


Baby Jac had another refluxy day. He ate well in the AM with his nurses (full feeds at 6 am and 9 am) but at noon with me he only ate 12 and at 3 pm he ate 15.

Each time I tried to feed him he started out really hungry - ate a bit - and then the reflux started and he quit eating. It is so hard to watch him reflux - I want to help him and there is nothing I can do but hold him and wait. Argh.

He was not interested in eating at 6 pm and I don't yet know what he did at 9 pm.

I asked the NAP team today about what I might be doing wrong that is slowing down his ability to feed. She told me that if it looks like he is not swallowing all of his milk that I need to do a better job of tilting the bottle down so that he has a chance to swallow. It seems as if he is swallowing after each suck but that he is not swallowing all that he has sucked so he ends up with too much in his mouth.

The process for him should be suck, swallow - suck, swallow (n times - usually - 3 - 5) and then breathe, breathe, breathe. I think the problem is that he is doing the swallows - but swallowing everything - so I need to help him pace better by tipping the bottle down after 2 or 3 sucks and giving him an empty nipple which he will suck and then swallow - and swallow what he already has in his mouth. I will pratice this with him tomorrow and see if we can make more progress.

He is getting so close - every day the nurses and the NNP and I talk more about how we get home. Once Jac is eating ~ 70% of his feeds by mouth we will move to ad libitum (ad lib) feeding - which means when he wakes up he gets fed - which is what most babies do! He is not supposed to go more than 4 hours without eating and they set a minimum amount he is supposed to eat in 12 hours. If he does not meet the minimums, the NNP, the nurses and I will then decide what to do! So exciting. The NNP thinks he will get to ad lib feedings in the next few days to a week. Go Jac! We are so close to going home little boy!

After he gets to ad lib feedings he needs to gain weight 2 nights in a row and then he can go home! If he is barely gaining weight he might have to do it for 3 nights before they will let him get home.

Go Jac Go!

P.S. For more information on feeding in preterm infants click here.

Refluxy baby


Jac was having a bit of a tough day today. His reflux was worse and he was showing it. He ate a bit at every feeding today - but never a whole feed. Every time I tried to feed him he started out fussing and hungry - ate a bit - and then the reflux started and he stopped eating.

I asked the NNP to give him his MCT oil and his Prevacid at different feedings as the oil in all likelihood interferes with the action of the Prevacid - at the very least it does not hurt to separate them.

We spent about 6 hours today doing Kangaroo care and it was very nice. It is hard to sit for that long!

The fact that he was interested and awake for all of his feedings is great and hopefully the reflux will be a bit better tomorrow and he will eat more!

He lost 6 grams yesterday but gained 52 today! He is now 1646 grams or 3 pounds and 10 ounces! He has enough fat on him (he had virtually none when he was born) that he has a little tiny neck roll with a little dried milk in it! This is a huge change - and he is really starting to look like a term baby - just small!

Tuesday, September 18, 2007

Jac ate 6 feeds by mouth today - Amazing!

Jac was on a roll today.

By mouth feeds today:

3 am - 15 ml (nurse)

6 am - 16 ml (nurse)

9 am - 25 ml (nurse)

Noon - 31 ml - full feed (Mom)

3 pm - 22 ml (Mom)

5 pm (early) - 25 ml (Mom)

9 pm - 4 ml (Mom)

This is amazing. For all of his feeds that I gave him today he was very coordinated and barely had any issues. He had a few splutters when he took a bit too much and couldn't swallow it all.

At the 9 pm he wasn't really into it and had a little brady - he seemed like he wanted to go but he couldn't quite get it together.

A great day! I am staying at the hospital tonight! I feel like we are getting so close to going home I want to be here to help. I have asked the nurse to only wake me if she thinks he wants to eat - but if he is gong to gavage to let me sleep - although I do have to wake up to pump - but that is easier to go back to sleep after. I might as well take advantage of all of the help while I can! If Jac keeps going like he is he will be home very soon!

More photos on flickr

I have uploaded more photos to flickr. To see them click here.

Jac gained 36 grams today - 3.52 pounds

Jac gained 36 grams today for a grand total of 1596 grams (3.52 pounds) or 3 pounds and 8 ounces - which is a 2 pound gain since he was born!

Yeah!

Monday, September 17, 2007

Jac wearing a onesie from Grandma Johnson


When Grandma Johnson was visiting she bought Jac some very cute clothes. The one he is wearing here is a onesie with doggies on it.

All Jac videos any time


I have created a custom player from YouTube that will allow you to see all of Jac's videos in one place. Every time we add a new video to YouTube this player will be updated automatically.

Jac's second bath

Jac had his second ever bath tonight at 6 pm. Joseph came from work and we gave him a bath together with the able assistance of his nurse.

He was very calm for almost all of his bath tonight - unlike his first bath which he did not tolerate as well. Joseph realized at the end of his last bath that we needed to keep pouring warm water over him to keep him warm since he is not submerged in the water. This made a big difference I think in his bath tonight as we did this the entire time and he really seemed to enjoy it.

He only got upset at the very end when we had to pick him up out of the water to clean his behind! He was so cute and wide awake the whole time with big eyes.

Here is a picture I took right at the beginning of his bath.




I also took a video after he was done in the water and after we dried him but before we put his diaper on. I know years from now he is going to kill me for this video but he is so darn cute I can't help it ;)

Sunday, September 16, 2007

Sunday weigh-in

Just got the update -- Jac weighed in at 1,560 grams - up a whopping 36 grams from Saturday (and Friday) night!

Jac calm and awake, sucking on a pacifier.

This video was taken a while back... Approximately 3 minutes long....

30,000 words a day

Jac's nurse for tonight mentioned an NPR piece that was on the air a few days ago about the importance of exposing babies to live speech; and that the babies should get 30,000 words a day!

Here's a somewhat related article in the Denver Post about the topic... It seems like good justification for thinking out loud!

I apparently need to brush up on my "Parentese", too

Window of vulnerability

Jac managed to pee on daddyTypically, there is a 5 second window when the old diaper is removed and not yet replaced by the new diaper. Jac has successfully exploited such windows of vulnerability more than once...

Grandpa Chiu happend to call me shortly after one such incident. When I told him that Jac had just peed on me, my father seemed pleased by the pay back for all the times that I peed on him when I was a baby.

Hungry Jac

Jac has been making good progress drinking from the bottle, and it really showed today -- he must be having a growth spurt today to make up for the zero-gain day yesterday!

He drank from the bottle twice this morning before we visited him this afternoon. For his 3pm feed, we asked his nurse to bottle feed him so that we could observe her technique. He drank 15 ml in less than 10 minutes. From watching the nurse, we learned to start the feed with the nipple unloaded until he makes a few sucks; and to keep the nipple in his mouth more than we have been in the past.

Jac and I had a nice nap from 3:30 until around 5.

When he woke up, he was clearly hungry again, and sucked furiously on the pacifier! Taj and I decided that this was a good opportunity to try getting Jac onto her breast. At first, Jac didn't know what to do with the breast; but after about five minutes of getting a few drops of milk in squeezed into his mouth, he rooted around and then latched and sucked a couple times. It wasn't much (probably less than 2 ml, total), but he clearly sucked on momma's boob. His first successful breast feed! Well done!

For his 6pm, I fed Jac with a bottle and got him to take 20 ml and then we gavage'd the remainder (31 ml total per feed). Then by 7:45, he was again clearly hungry and managed to take 15ml from Taj in under 5 minutes. Had we had more milk at the ready, he probably would have taken a full feed's worth in one sitting!

We decided to give him (and ourselves) a break for his next feed, and had the nurse gavage his feed at 9pm. We thought he would sleep through that, but he was unhappy with reflux and gas in his tummy. He flailed around for a while, started crying, and wouldn't calm down even after three attempts at swaddling (which normally works).

Jac finally calmed down when I picked him up and then set him back down for another attempt to swaddle him. Before I actually swaddled him, he just suddenly stopped crying and looked very calm. I decided to let him be unswaddled, and then started talking to him. Jas was apparently distracted from his tummy discomforts from the "conversation" followed by some singing. It took a while, but we finally got him to fall asleep by about 10:30 or so.

BTW, he pooped a lot today. A testimony to his big appetite for the day. It'll be interesting to see what he weighs in at tonight.

Saturday, September 15, 2007

Auntie Charmy and Uncle Wayne are here for the weekend.



Auntie Charmy and Uncle Wayne watching Jac eat from a bottle with Daddy



Uncle Wayne sleeping in the bed at the hospital

Auntie Charmy and Uncle Wayne arrived last night around 11 pm. We had a late night dinner at the best IHOP we have ever been to and then went back to our house.

After a very nice breakfast made by Joseph this morning we all came to the hospital to see little Jac!

Scary Brady

Jac had a very scary Brady yesterday afternoon around 1 pm. Joseph and I were in his room with him and all of a sudden after having a little reflux stir he started to turn purple. I looked up at his monitor and saw that his heart rate was 52 (it should be at a minimum of around 140-150 normally) and it was not comig back up.

Normally when Jac has a Brady he comes right back - no intervention - minor drop in sats - and that is it. This one went on at least 10 - 15 seconds with me patting his butt, the nurses coming running and giving him blow-by (direct face mask oxygen). It was very scary but it did not seem to bother him in the slightest - he barely stirred - which made it even more disturbing.

This is the first time in his life he has had a Brady that needed any intervention and lasted more than a few seconds.

Let's all hope that he does not do it again - without the monitors the only indication would have been his color change - and I would have had to be watching him to see that happen.

The doctor thinks it was probably caused by reflux - he may have taken a little bit of milk down the wrong way when it came back up and that made him stop breathing.

Oy is all I can say.

Changes are afoot



Jac eating with Daddy

Our little Jacie (pronounced Jackie) boy is doing well.

We had a Care Conference on Friday to talk about how things are going and what the end game to get home is.

The following things need to happen before we can go home:

- Jac needs to eat all of his food from the bottle or from the breast (but breastfeeding much by the time we go home is very unlikely - this is something we will work on with the help of the lactation consultants after we go home). After he starts getting most of his feedings from the bottle they will take his gavage tube out - which should help with his reflux as the NG tube is holding the sphincter at the top of his stomach open which exacerbates the reflux.

- He needs to continue to gain weight. Yesterday he gained another 28 grams - to a grand total of 1524 grams (3.36 pounds). He will need to continue to gain weight when he comes home. When we initially go home he will probably be weighed every week.

- He needs to pass a car seat challenge test. This means that he needs to be in a car seat for an hour and not drop his sats. Initially he will probably use a car bed rather than a car seat because he is so small. We will rent a car bed and then get him a car seat when he gets closer to 4.5 or 5 pounds.

The doctor thinks that he is about 2 weeks from going home! In the past 24 hours he took 38% of his feeds from the bottle!

Terms of endearment

Jacie (pronounced Jackie) Boy
My Burrito (when he's wrapped up like one)
Stinky (before he had his bath)
Monkey (when he scrunches and wrinkles his forehead)
Baby Burrito or Burrito Baby (when he's wrapped up like one)

Thursday, September 13, 2007

240 ml per day

Jac's feeds have been increased to 30 ml every 3 hours! That is a lot of food for a little guy - no wonder he is gaining weight so quickly!

Alexis has left

My little sister left tonight to go back to London - and then to Cairo!

Lexi - thanks so much for coming and Chris thank you for being lonely for my sake. She was a great help in more ways than I can describe and I am very grateful to both of you!

We tried to get a picture of Jac and Alexis together this afternoon but Jac was asleep and far be it from me to disturb a sleeping baby!

See you in a few weeks Lex.

Pretty good day - last of the 2 month vaccinations




So after all of my worry by the time Joseph and I left the hospital last night Jac had mostly exhausted himself. His nurse held him a couple of times but for the most part he slept and was fine.

He took a full bottle from his nurse this morning at 9 am and most of a bottle from her at 6 pm. I of course missed both of those feedings. This morning because I was too tired and this afternoon because I was taking Alexis to the airport. D'oh! He has not eaten more than 5 ml from me all week. I am starting to feel like he wants to eat with everyone but me. I know it is all timing and not me but geez Jac! Ah well - when we get home he won't have any choice! ;)

He had the rest of his 2 month vaccinations this morning and his nurse told me he did very well and barely cried. He got sweeties (concentrated sucrose) on his pacifier which makes things easier. His nurse also gave him prophylactic tylenol and he did not seem to get overheated today.

Joseph and I have decided to stay home tonight and get some sleep so we are ready to go tomorrow!

Wednesday, September 12, 2007

Jac gained 34 grams - grand total = 1470 grams

Jac gained another 34 grams today! He is now 1470 grams or 3.24 pounds.

He had a pretty rough day though. He had his DTaP vaccination last night which has caused him to have a very mild fever all day - mostly in the upper 99s - but enough to make him uncomfortable and fussy. I kangarooed him twice today which he really seemed to enjoy and he was calm for most of the time he was on me.

Unfortunately his reflux seems to be getting worse and more upsetting. They have upped his dose of Prevacid to the max but it does not seem to be helping.

Joseph came around 8 pm and from that time on he was up and fussing for most of it. We both held him and rocked him and talked to him. Joseph fed him at midnight and he took 18 ml which was good. After that he seemed to calm down a bit and finally went to sleep. We left and are home now - checking in with his nurse to make sure he is sleeping. If he wakes and up and is incosolable I am going to go back and hold him - and sleep with him in the most uncomfortable recliner know to man or woman.

Tuesday, September 11, 2007

Jac has now doubled his birth weight

When Jac was born he weighed 698 grams - and he is now 1436 grams - more than twice his birth weight!

Happy Due Date Jac!

Jac is 40 weeks old today! September 12th was his due date.

He really is starting to act like a term baby - which he is - just a small one!

Weight update: 1436 grams (3.16 pounds)

Jac gained 36 grams today! Wow! Two big days in a row! He is really getting to be a big boy!

I tried to feed him today with limited success but the nurse was able to feed him 17 ml tonight!

I am very sad to have the nurses feeding him - I really want Joseph or I to do it - but feeding is really our only roadblock to going home at this point - so the more often he eats (with anyone) the better.

The nurse said he was wide awake and looked like he wanted to eat. I had been with him at the previous feeding and he was having none of it!

He also started another round of epotein today - to increase his hematocrit which has dropped again. This is normal - all newborns have their hematocrit drop after they are born until their bodies produce enough epo on their own to trigger their bone marrow to make more red blood cells. This round of epo will last for a week of daily shots again - and this should get his body making enough red blood cells to tide him over until his own hormone creation kicks in.

Because he is getting more epo he is also getting more iron which can be very constipating - and may be the reason he was very fussy with me today.

Monday, September 10, 2007

His first bath!



Another milestone for Jac!

Now that he's producing oils from his skin, he's stinky all over! (Not just his diapers and feet anymore.) He even gets bed hair! :)

We gave him his first bath tonight to freshen him up. He cried a bit, but he enjoyed the end result -- he looked very happy in his fresh pajamas! And he smelled nice!

Jac is now 1400 grams!



Click here to see the previous Diet Coke can picture from August 13th (the same coke can!).

Jac gained 40 grams today! OMG! That is the most weight he has ever gained in one day! I am so happy - even if it is 1 am and was our anniversary until 1 hour ago and we had IHOP for dinner with my sister while Joseph and Alexis used their computers!

Yeah! Go Jac Go!

If he can learn how to eat for all of his feedings we are so close to going home!

Bottle feeds with the nurses.

Jac now takes bottle feeds from the nurses in addition to mommy and daddy. This started yesterday morning when the nurse decided that he was very awake and looking hungry that he would rather drink from the bottle. He managed to have a full bottle feed that time.

Jac took another full bottle from the nurse this morning.

Having the nurses feed him is good -- he's really starting to like drinking from the bottle, so they can give it to him when we're not around; and, the nurses can assess his feeding skills to make sure he is making good progress.

Sunday, September 9, 2007

How can a baby be 2.99828677 lbs!?

Jac weighed in at 1,360 grams tonight. That's 2.99828677 lbs!

The Dr. told him that he had to reach 3 pounds - and man did he try - he gained 12 grams.

Hopefully he will make the Dr. happy tomorrow and gain that extra gram!

;)

Out of the isolette and into the crib!




Well, we had a little bit of a surprise this morning! Jac has been transferred out of his isolette and is now in an open crib!

After having perfected my mad change-the-diaper-and-swaddling-in-the-isolette skills, I sort of miss having him in the bubble. But Taj is happy... It's easy to just reach into the crib to take care of Jac now.

BTW, now that he's not behind the plastic barricade, he can pee on you. It happens. Trust us.

Saturday status update

Jac gained 28 grams since last night. He is now at 1,348 grams (2 lbs 15.6 oz).

Now that he is over 1,300 grams, his feed is now at 26ml per feed.

Saturday, September 8, 2007

Another full-bottle day

Jac and daddy having a nice nap.
We went to see Jac today at noon. He was awake when we arrived, and it looked as if we could feed him with a bottle. I took Jac out of the isolette while Taj prepped the milk. By the time the bottle of milk was ready, however, Jac had gotten so drowsy that he didn't really drink at all. We ended up gavage feeding him while he napped on me. About 30 minutes into the feed, I started dozing off and ended up having a nice nap with him!

Jac and I stayed there until about 15 minutes after his gavage finished. He seemed very content and fully asleep, so we put him back in the isolette, and got ready to leave for lunch and run some errands. Before we left, however, he woke up and started fussing -- so we stayed. While fussing, he managed to pull his NG tube completely out of his nose.

Jac sucks on a pacifier, shortly before starting a full feed.By 2:30pm, Jac started looking hungry -- since it was only a little while before his next scheduled feed, we decided to try the bottle again. While Taj warmed up the bottle, I pulled Jac out and gave him a pacifier.

Just a minute before Taj came in with the bottle, he fell asleep in my arms, and it looked like he wasn't going to bottle feed. However, I teased his mouth with milk on the nipple and he eventually started sucking on the nipple. It took a few tries with burp-breaks and some waiting, but over a period of 40 minutes, Jac managed to empty the entire bottle. Yeah!

With all the fussing earlier, and then the work of drinking the entire bottle, Jac was pretty exhausted and fell into a nice sleep. Sleep is good. Sleep = growing!

Friday, September 7, 2007

Jac's eyes are mature - and no ROP

Yeah! Jac had his last ROP exam yesterday! His eyes are mature (in this case mature means no more risk of ROP) and he does not have ROP.

He will need another eye exam at 6 months but this is a standard newborn exam and should not be hard like the ROP exam!

Yeah!

Thursday, September 6, 2007

Jac gained 34 grams - grand total = 1298 grams

Jac gained 34 grams today! That is the most he has ever gained in a day!

Today is a big day with the eating a whole bottle and largest weight gain ever in a day! We are on the right track!

And down to 10 ccs on the oxygen!

Go Jac Go!

Jac drank an entire bottle today!

Last night Jac took his cannulae out - and I left it that way. He was like that for an hour or so while he was out on me and his sats were just fine - in the mid to high 90s. I asked his nurse if we could leave the cannulae out and see how he did.

She left it out all night - he did pretty well but desatted a few times and the doctor asked that it be replaced this morning. He is still as 10 ccs / minute - barely anything. I am hoping that he will have it out by this time next week - he is getting so close. The doctor is being careful and that is good but I think he could handle it if given a little more time to adjust! Look at me - pushing to get rid of the cannulae after so long of being scared to have it changed! What a difference a month can make.

This morning at 9 am - after replacing Jac's cannulae and taping his NG tube down again I gave him a bottle. At first he wasn't interested and I had to work hard to look for his cues that he would take it. He was wide awake and looked ready but he just didn't want to open his mouth wide enough - and he kept on holding his tongue up to the roof of his mouth.

After we got started he took a bit - maybe 10 ml. And then he stopped - and we rested. I thought he was done and was trying to find a comfortable position for him. He kept on fussing and I thought perhaps he had a diaper (which he did a bit later in the session) but it turns out he was hungry and wanted more from the bottle. After we got started again he drank the rest of the bottle - another 16 ml!

In all he took 26 ml - and seemed confused when the bottle was empty and no more came out. I am so proud of him. This is the first time he has ever taken an entire bottle - the most we had ever gotten before this was 17 ml when Joseph fed him this past weekend.

Jac looking cute



Jac is now wearing a very cute shirt! I took a picture of him this morning while we were doing his cares.

I also took a video!

Wednesday, September 5, 2007

Jac now weighs 1264 grams

Jac has regained his better weight gain today with a gain of 24 grams today! Go Jac!

He really is getting biggger and stronger. He is so much smaller than a normal term baby but he is really starting to look and feel like a regular baby.

Every once in a while he lets out a little one sound cry - and he sounds like an older baby - almost a sigh! It is very cute! I will try to get a movie of it!

We had a nice day sleeping together - or at least him sleeping and me treo-ing. He only ate 5 ml today but we shall hope for more tomorrow!

Gain of 4 g and first clothes

Jac only gained 4 grams today! D'oh! We shall hope for a larger gain tomorrow!

On the positive side - at noon he drank 16 ml from the bottle with me. He had good pacing and things went quite well. He leaked a little bit out the sides of his mouth but all in all he did very well.

We shall hope for more of the same with the feeding tomorrow. We are trying for 2 feedings a day but we haven't been to do that yet! Hopefully soon!

He is getting very strong - and insistent. He was up for 5 hours - at least most of the time - from 4 pm - 9 pm! I held him for a good portion of that - we have found a pretty good position that he and I both like - in spite of the chair.

He pulled his NG tube all the way out today - his nurse suggested we put mittens on him if he keeps on doing it - but I don't want to - he deserves to have his hands and to pull out the tubes - they are taped to his face! We shall see.



We put his first clothes on him today. I purchased micro preemie clothes - XS to 3 pounds! He looked very cute and he has been sleeping in them since 9 pm and he seems to be doing well so far. His isolette is now down to 28.0 degrees - we may be getting close to taking him out - the clothes should help that process along.

The only problem with taking him out of the isolette and into an open crib as I see it - is that he will get lot more noise. In the isolette he is relatively protected when the doors of the isolette are closed - sometimes it gets very noisy in the hall or the nurses speak very loudly when they are in his room or in the hall outside his room. The loudest thing that seems to happen is when they run the water in the room. It does not make a lot of sense to me to design such a quiet place - and then make a mistake like placing a very noisy sink in the baby's room. Really!

Monday, September 3, 2007

Bunch more pictures uploaded...

I just uploaded a bunch of new pictures onto Flickr. To see them, click on the Flickr link on the very top of the page (or the "Flickr photos of Jac" link in sidebar on the right). Good night!

Jac eating with Momma



On Sunday Jac and I got a chance to have a little feeding. He didn't end up eating much during this feeding (only 4 ml). He seemed to be more interested in having social time with Momma.

1242 grams

Another update... Jac weighed in at 1,242 grams tonight, up 20 grams from last night. Well done!

Update on his measurements

Just checked with the nurse...

Jac's measurement from last night - 41 cm length, and 27.5 cm head circumference.
That's unchanged from 41 cm length, and slightly up from 27.0 cm head circumference from last week.

It seems like he's mostly focusing on filling in, rather than getting longer.

I guess I'm glad that he's growing his head instead of getting taller; rather than the other way around. I'm counting on his brains to pay for our retirement, not his basketball prowess. :)

17ml from the bottle today.

I got to feed Jac from the bottle today at his 3pm care. Jac's nurse noticed that he was awake and giving off signs that he was ready to eat. Because he seemed ready to go, she decided to defer some of his cares so that he could start feeding right away.

Two ladies from the NAP (Neonatal Assessment Program) came in to monitor and guide the feeding. They suggested that I start by holding Jac more-or-less upright and facing directly toward me. After brushing his lips with the nipple ("like putting on chapstick") to get him to taste the milk, Jac opened up and started drinking.

He did a really nice job today. He sucked firmly to draw in milk, then paused to swallow and breathe on his own. The NAP ladies said that he was self-pacing very well. Making sure that the nipple was full of milk seemed to help. Eventually, Jac pushed the nipple out with his tongue. We stopped to give him a break. The NAP ladies showed me how to best hold him and burp him.

Despite a few minutes of firm patting, we didn't hear any definite burps. We tried resuming the bottle feeding, but by this time, Jac had pretty much fallen asleep and wasn't interested in bottle feeding anymore. I spent a couple more minutes burping him, and we finally got a good strong burp.

Jac ended up taking in 17 ml this time. Yeah! We gave him the rest of his feed via gavage. BTW, since Jac broke 1200 grams last night, his feed has been upped to 25ml per feed. Jac semi-kangarooed with me until 5pm. He and I had a nice nap together. Although he showed signs of reflux (twitching, and 2 brady's), he didn't cry or fuss. When I finally returned him to his isolette, he stayed very calm and barely opened his eyes. We left him to have a nice sleep.

It seems like the nurses, the NAP ladies, Jac's doctor, Taj and I all feel like he's about to "turn the corner" and start growing quickly.

Back to oxygen-only low-flow

This morning, Jac switched back to low-flow on pure oxygen, instead of using the air blender. Soon after the switch over, his saturation climbed to 100% and his respiratory rate climbed into the 110's, setting off the alarms. At first, I was worried that he would need to go back to the blender; but after a little while, his respiratory rate settled back down, but his saturation was still high.

Because high oxygen saturation contributes to ROP, his oxygen flow was dialed down an hour later to 40ml/min. After the adjustment, his respiratory rate spiked again, and then eventually settled down.

The NNP pointed out that we shouldn't worry about his high respiratory rate, since he always seems to spike after an adjustment. Sure enough, he did fine the rest of the day.

Momma struggling again

So - I am struggling again. Being a new Mom is hard and being a new Mom in the hospital is arguably even harder. We do have the benefit of the highest paid babysitters in the world - but at a tough price.

Jac is doing very well. His flow needs are coming down for his lungs, he gained a good amount of weight tonight, and the temperature in his isolette is coming down. All good things.

But frustration has set in for me. I just want to be a Mom and do the Mom things that my instincts are telling me to do - that I can't.

Right now picking Jac up is a big deal and has to be done with all due consideration and with the help of at least 1 other person. When he is crying I can't just soothe him as I would like to.

Okay - enough complaining.

Status:

Isolette temp: set to 28.5. Jac has been warm each morning between 6 am - 9 am. This is a good sign as he is starting to get circadian rhythms that we all have and to differentiate night and day. He has been a bit warm for the last few days. I have noticed this when I am holding him in a blanket or in Kangaroo Care. We have been keeping our room (and his) fairly warm - right around 76 or 77 F. I turned it down a bit tonight to see if that helps him stay a bit cooler - and for me to stay cooler when he is on me.

Air: Jac's flow to his nasal cannulae has gone through quite a few changes since Friday. He went from the high flow nasal canulae at ~400 ml / min to the low flow nasal cannulae at 40 ml / min. He did not seem to tolerate the 40 ml so we moved him up to 100 ml. In this form of low flow there was no ability to regulate exactly how much oxygen he was getting as part of the flow. On Saturday we changed the setup to include a mixer so that the oxygen level cold be regulated again. As was explained to us tonight by the NNP this was probably not a good idea. Even though it is not possible to regulate the amount of oxygen in the original low flow setup they have charts that tell them how much flow means what percentage of oxygen Jac is getting - with the setup we switched to on Saturday they don't really know how much oxygen he is getting. So tomorrow we will go back to the original setup and see how it goes.

Growth: Jac gained 32 grams today which is awesome. As Joseph pointed out this was after 2 big diapers. That is a very good weight gain and we shall hope that he has turned the corner on his weight gain and will start gaining approximately this much each night.

Eating: We tried to feed him twice today. The first time he took 5 ml and this evening he took 2 ml. Not very good. This evening he seemed to want to have social time with me - when I tried to turn him a bit away into the position we have been taught to feed him in he started fussing and crying. When I turned him back toward me he perked up. I will ask the NAP team for help tomorrow and see if we can figure out how to get him bac on track with his eating.

Tummy: Jac's reflux seems to have been a bit worse in the last few days - and I am wondering if something I am eating is bothering him. I am going to eliminate caffeine and dairy from my diet for a week and see if that makes a difference in how comfortable he is with his feedings. With his food running over 1 hour and him being fed every 3 hours it seems he is always eating!

Sunday, September 2, 2007

Bigger, louder, stronger, cuter.

He had a really good growth today. He weighed in at 1,222 grams (2.7 lbs) tonight. And that was immediately after he had two really full diapers!


Even though he's still "behind the curve", Jac's growth definitely shows in several different ways.

Though Jac still hasn't developed the plump look of a normal born-at-term baby, he's definitely started to fill in his skin. The NNP pointed out that she has a harder time counting his ribs; and Taj and I have noticed that the skin on his arms and legs are now much more taut, as he's getting more meat on his bones! His fingers are now long and elegant like his mom's, and he has outgrown a hat that used to fit him in his early days.

When Jac is uncomfortable and starts fussing, he cries much more loudly than he used to, and it's become much more difficult to wrap him up in a blanket as he kicks around and waves his arms around. It's also become very difficult to release his feeding tube and the nasal cannulae from his death grip!

Besides growing physically, Jac's developmentally growing, too. He is much calmer during his cares, and is more tolerant of noises and movement. He's less fussy than he used to be when his diaper is soiled, and he likes to keep his eyes open more. In fact, it seems like he doesn't like his room to be dark all the time -- he likes to look around and see things, especially his mommy. He's incredibly cute when he's awake, alert, and looking right back at you!

Saturday, September 1, 2007

Tonight's weigh-in: 1190 grams.

Jac weighed in at 1190 grams tonight. He gained 12 grams from last night, which is below the range that they would like to see (15 to 30 grams per day).

They have been increasing the caloric value of his feeds; but he is burning off the calories because of his high metabolism.

There is a concern that Jac will continue to get further behind the curve in terms of his size relative to his age. The NNP's and doctors chart his weight/size on a number of growth profile graphs:



(BTW, after having gotten used to the all-electronic medical charting system at The Children's Hospital, the paper-based charting at BCFH feels a little odd to me...)

Some more pictures...

Jac in his isolette, looking wide awake...



Jac on daddy's belly during a brief period where he tried breathing without his 100 ml/min of air... Perhaps in another week, he won't need his nasal cannulae at all!