Jac's status

Jac is now on 100ml of oxygen...


and 23 ml of milk per feed.


He's been in his new isolette since Wednesday (8/28)...


And his stats are looking mostly pretty good... (His heart rate during the evening was mostly in the 150's; although you can see the spikes during the times that he is uncomfortable.)

Worse reflux and tired Momma

I got up this morning at 6 am to get to the hospital by 7 am to meet with Adam, Jac's neonatologist whom Joseph and I had met with last week (that time we spent the night at the hospital which was a mistake). This unfortunately was also a mistake. I was so tired from only having slept for 5 hours with a 1 hour period of awake time in the middle to pump that I was not in great shape.

I had hoped to meet with the neonatologist and then pump and then nap until 9 am. Jac of course had different plans. They weaned him from high flow nasal cannulae at .4 lpm to low flow at 40 ml per minute - a really big change and he was showing it when I got there. His respiratory rate was 120 - really high - and as I was finishing with the neonatologist he started crying - and breathing really fast - clearly uncomfortable.

I asked to do Kangaroo with him and ended up spending the next 3 hours holding him - unable to sleep or really rest as the chair in our room is very uncomfortable. I also ended up getting way too hot. SO basically by the end I was miserable. We put Jac back into his isolette and he seemed to calm down and be fine.

I then pumped for about 5 minutes which was all I do and then collapsed asleep on the bed and slept for about 15 minutes. And then Jac started crying again. I got up and held him for an hour for his next feed - by which point I was about to lose it. During the entire time I held him every time his food was going he would wake up with reflux every couple of minutes at the beginning of the feed and every minute or so toward the end. The food runs over an hour so this is exhausting for both of us. During the second feeding I tried to bottle feed him - none too successfully - he only got 4 ml.

Near the end of the second gavage feeding I called Alexis and Joseph and asked them to come rescue me. I never really recovered for the rest of the day.

Jac is now sleeping. He gained 16 grams today - for a total of 1178 grams!

The NNP is going to add Prevacid for his reflux - he is currently getting Zantac. She will add it once a day - and it will take about 3 days to kick in. After it does she will discontinue the Zantac. The Prevacid should be more effective at keeping the acid level of his stomach down. These medications don't get rid of the reflux - this will not happen until he gets much older - but they make it more tolerable by reducing the burning feeling he gets when he refluxes.

It is very hard to watch him have the reflux. He wakes up and cries a little, swallows a lot and makes some other funny little noises. He is clearly very uncomfortable and it makes me a bit powerless as there is little I cam do to help him other than hold him and comfort him and help get him into the most comfortable position in the isolette.

Augh - this has been a tough day. I am hoping that some sleep will help make things more tolerable for both of us.

Thanks Alexis and Joseph for rescuing me!

Jac gained 28 grams today and ate 18 ml from a bottle

Yeah! Go Jac! He gained 28 grams today and now weighs a grand total of 1160 grams (2.56 pounds).

Today we added the MCT (Medium Chain Trigylcerides) and he started getting hindmilk along with the 26kcal fortification and Zinc! Lots and lots of things to help him grow and he did it today. Cross your fingers for tomorrow!

He also ate 18 ml of milk from a bottle I gave to him at noon (the most he had had from a bottle previously was 12 ml). Then he slept and slept and at 6 pm we did kangaroo care for an hour and a half.

It so nice to hold him skin to skin. He and I both get a lot from it. I feel like there is nothing else in the world when we are together in that nice quiet room - him sleeping - me falling asleep!

Turning down the volume on Air Supply... One step closer!

This morning, Jac's air flow for his nasal cannulae was reduced from 0.75 lpm of air to 0.6 lpm. He tolerated the reduction well so, after 12 hours, they further bumped him down to 0.3 lpm. If he keeps this up, he'll soon be able to get rid of his nasal cannulae.

Grandma Johnson leaves

Sorry for the late post! Grandma Johnson left on Saturday! We miss her! We are not eating as well without her!

These past few weeks since Jac's transfer have been very challenging and they were made much easier by my mother's calm in the face of the storm of my emotions. I have come to expect this from her and I truly appreciate it.

Mom - you may need to come back after Jac comes home so be prepared!

Mommy doing what Mommies are supposed to do

For the first time tonight the NNP encouraged us to take Jac out of his isolette when he was awake and upset and not settling. Daddy sat with Jac for a while but he only temporarily calmed down. Then I took him, stood up, and did the mommy sway. It felt so good and so right. I know once he comes out of the isolette we will probably spend countless hours doing the sway - and it will not seem quite as precious - but right now it feels like the most precious thing in the world.

Jac crying - long and hard

Jac did not want to settle down this evening. He was wide awake and he could not seem to decide if he wanted to cry or not. He had several poopy diapers and even managed to pee on Momma!

Jac wide awake with Daddy

Jac - wide awake - and not wanting to settle down! Our boy is growing up and getting fussy like a full term baby! Go Jac! All good signs even if it is tiring for Mom and Dad!

Jac waking up

In this video Jac is waking up before a nippling/feeding effort this morning. So cute!

Jac is now 1126 grams

Jac is now 1126 grams - 2.48 pounds. He gained 12 grams last night - which is not much. They would like him to start gaining 30 to 40 grams a day. They are probably going to up his milk supplementation to 28 kcal / ounce (it is currently 26 kcal / ounce) by adding Medium Chain Triglycerides to it - basically calories to see if that helps.

I am also trying to help more naturally by separating my milk into foremilk and hindmilk. The first milk that I express is foremilk - this has a lower fat content and is more watery. After that I start expressing hindmilk which has more fat and hence more calories. We will be giving him just hindmilk which will be more calorically dense and should help him gain weight more quickly. We will start doing this with tomorrow mornings feed.

March of Dimes - Band Together

We have been supporting the March of Dimes for quite a while but now with Jac's premature birth it seems even more important to support their work.

If you are not familiar with March of Dimes they raise money to support research into the causes of birth defects and prematurity.

We have made a donation to March of Dimes in Jac's name in the form of a virtual band. If you would like to make a similar donation click here. This will take you to a page at which you can make a donation in his name. (Note: This does not work in the Firefox browser - I know it works in Internet Explorer)

The doctors don't know what caused the placental insufficiency which caused Jac to be IUGR and hence premature.

Perhaps by contributing money to March of Dimes we can help more research be done so another family does not have to experience what our family is currently experiencing.

Thanks in advance!

How much is that baby in the isolette?

Taj and I just checked our medical insurance's EOB (explanation of benefits) statement... Take a guess on what his medical bills add up to so far.

Got it? Okay, click here to read more...

---

So far, Jac has racked up just under $340,000 in medical billings. Much of this is from the hospitalization fees at The Children's Hospital -- nearly $275,000 for his 34 days of occupancy (roughly $8,100 per day).

Yes, we're fortunate to have insurance.

BTW, the insurance negotiated rates on hospitalization paid out $144,000 on the $275,000. That is the biggest discount I've ever received in my life!

---

Click here to hide the info.

Monday update

As I mentioned in the other post, Jac had an ROP exam today.

This evening, Jac only managed 2ml of milk from the bottle -- most likely, he was exhausted from the ROP Exam this afternoon. For the most part, Jac spent much of the day sleeping, although at slightly elevated heart rate (in the 160's). Oh, yeah, he also spent a nice hour on mommy, having a kangaroo session this evening.

At his cares tonight, Jac was mostly calm and only threw a small fuss during his temperature measurement. He pooped just a few moments before I was going to check his diaper -- perfect timing. After the diaper change, we weighed him. He came in at 1,114 grams today; a 15 gram gain for the day.

For most young babies, 15 grams is a decent weight gain. However, Jac is still small for his age, and the NNP has reiterated the need for Jac to ingest and retain more of his calories. She thinks we may need to get him on higher level of food fortification.

Also, they are ready to dial down his air flow again. They'll lower the flow to 0.6 lpm in the morning, and then watch him to see how he's doing. They'll also take an X-ray to make sure his lungs are expanding as expected.

Before I left Jac for the night, I spent a few minutes watching him. He was not exactly alert, but his eyes were open and he was trying to look around. He also had his tongue out and would occasionally manage to get the fingers on his right hand with his mouth. It was very cute.

Yet another ROP exam

Jac had his third ROP exam today. The opthalmic doctor said Jac's left eye was less developed than his right; and though the eyes are showing progress of maturing, they are still premature, and that another exam is needed in eight or nine days. The good news is that the eyes appear to be progressing at a normal rate, and there is nothing unusal/alarming.

The ROP exams are probably some of the most uncomfortable things that Jac has to endure while he's still in the hospital. He was quite unhappy during the procedure. He calmed down fairly quickly afterwards, but it was clear for the rest of the day that the exam tired him out. Hopefully, he'll have rested and recovered by the same time tomorrow!

I'm crossing my fingers that the ROP exam next week will be his final one.

1099 grams or 2.43 pounds

Jac gained another 25 grams tonight and he is now 1099 grams! or 2.43 pounds!

He also ate 10 ml from a bottle I gave him at 6 pm this evening (the last time he had a bottle with Daddy on Sunday he had 4 ml). His total feeds each 3 hours is currently 22 ml so he is making progress toward getting an entire feed from his bottle!

Yeah!

A domain of his own.

Okay, we admit it, we're guilty. We got Jac his own domain several weeks ago.

Many of you are visiting Jac's blog under our domain www.tajandjoseph.com, but his official website is www.jacchiu.com. Daddy and Mommy will be reclaiming our domain, some day.

Sadly, jacchiu@gmail.com has already been taken by someone else. And, no, he won't be getting a hotmail account.

Jac and daddy hit the bottle!

With daddy's assistance, Jac took in 4ml of fortified milk this afternoon. As you can see in the pictures, he was nicely awake during the experience. The Dr. Brown's bottle worked pretty well. Jac seemed comfortable with the milk flow today. After a few minutes, the nurse suggested that we stop so that we don't overwhelm Jac. He seemed pretty comfortable -- and it seemed to me that he could have taken in much more!

After the milk, he sucked on the pacifier for another five minutes or so, before falling asleep in daddy's arms. He was given the rest of his milk via gavage (tube) feeding for the next hour. He was mostly fine, but he did have two quick brady's - most likely because of reflux.

After the feeding, I put Jac back in the isolette. He squirmed a little while we were tucking him in, but he quickly settled down and went into a nice sleep.

Taj and I went out for a little dinner and a movie to give ourselves a little bit of relaxation. (We saw Hairspray. It was a fun movie - I'll never look at John Travolta the same way again!) After the movie, we dropped in at the hospital before going home for the night. He had a nice evening, and even mostly slept through his cares at 9pm. When I pulled up his monitor logs, it showed that he had nearly four hours of calm -- his heart rate was nice and steady in the high 150's, low 160's.

He weighed in tonight at 1,074 grams, gaining 28 grams from yesterday.

More practice nippling

Grandma has gone off to Lakewood, Colorado to purchase the Dr. Brown's bottles that should make it easier for Jac to suck from the bottle without getting air into his belly.

We are working very hard to make eating a pleasant experience for Jac - since this is all new and he needs to learn to associate eating with his tummy getting full and not being hungry. Since he has been fed by tube for quite a while he has not learned this association yet.

I read a scary article in the New York Times about what can happen in the long term if kids don't make pleasant associations with eating.

The NAP team has asked us to try nippling with him twice a day - once per shift (so once during a 12 hour period). We will try the nippling when he is already awake for his cares which happen every 3 hours.

The idea is that once per shift when he is woken up for his cares (sometimes he wakes up on his own in between cares - usually for a wet diaper or reflux) if he really wakes up and is alert and rooting we will try with the bottle and practice with it. Whatever he does not eat from the bottle will be put into his gavage feed and started as soon as we are done with bottle.

His schedule works like this.

Midnight:
Cares (diaper, pulse ox change, listen to belly, change position)
Start feeding through gavage

3 am
Same thing

6 am
Same thing

And so on and so on.


It is really fun to see him nippling and I can't wait to try him at the breast. They have said I can give him a dry breast and see what he thinks! I think I might lose him under there!

We will try with the bottle this afternoon once Grandma gets back with the bottles and Jac decides he would like to try!

So cute!

Jac is getting bigger everyday! It is hard to believe how he is changing. His belly is starting to get bigger - and his head - and his hands and feet.

We think he has:

Momma's:
Hair
Hands and feet

Daddy's:
Nose

The rest of it looks like a combo! We shall see. Jac may tend toward the siny side though. As he is growing he is getting longer but not putting on much fat. We shall see!

It is so much fun to watch him grow and change. His face has changed so much from when he was born as it starts to fill in.

The first picture is shortly after he was born and the second is from a few days ago.

Jac has started to eat by mouth

Jac has started to eat by mouth! Just a tiny bit. Yesterday was his first time and he ate 3 ml and today he ate 2 ml.

He is pretty good at sucking - now he has to really sort out the "Suck, Swallow, Breathe" thing and then we will be golden.

The video above was made by Joseph and is of his first time ever eating by mouth! He was so cute I could hardly stand it.

He is currently getting 20 ml over an hour once every 3 hours - so he gets 160 ml per day. Whatever he doesn't eat by mouth we give to him in his gavage tube (which goes through his nose and straight into his stomach).

My breast milk is being fortified from the 20 kcal / ounce (estimate) that it is when I make it to 26 kcal / ounce. They are also adding Zinc to the milk and giving him Zantac for his reflux.

Kilo!

Taj just got off the phone with the nurse... Jac weighed in tonight at exactly 1,000 grams! Good job Jac!

Grandma Toni is staying and Grandpa Bill has left

I asked my Mom to please stay a little longer. Having Jac in the hospital and the emotional roller coaster this has put me on has been made much easier by the presence of my Mom and my sister. Joseph is my rock - but he can only support so much weight - and I truly need the support during the tough days at the hospital.

Thank you so much Mom and Alexis for being with me when I need you most. I can't express how important family is at a time like this. You are my rocks, keeping my husband from going loony with my ups and downs.

My father has returned to La Canada and the rigors of JPL and the life outside of the hospital. It was wonderful to have him here but I am sorry we could not spend more time together since I was sick. I almost made him cry on Friday when he left - I was so distraught that day I can only imagine how he felt. Thanks Dad. You are a great father. Thanks for loaning me Mom for a little bit. We are taking good care of her and she even has a very comfortable sleeper couch to sleep on that we got with you all in mind. It has an air mattress top and we put a memory foam topper on top of that!

Tough week and seeing the light at the end of the tunnel

This has been a tough week for me. As you already know Jac was transferred from Denver Children's Hospital to Boulder Community Hospital on Tuesday morning - and I got sick Monday evening!

My mother and I were at Children's on Monday afternoon - hanging out with Jac - and we went down to the cafeteria to have some lunch/dinner. My mom had been saying during the day how she had been having allergy problems ever since she got to Colorado. I have not been having any problems and so when I started feeling itching in the back of my throat I thought it was allergies. And then I realized - "Oh, no - I am getting sick." I quickly put on a mask and didn't tough Jac again. By later that evening I was full blown sick with a head cold. All nine yards - runny nose, massive headache and feeling terribly. But Jac was moving the next morning and I REALLY wanted to be there to support him.

The next morning (Tuesday) I was feeling terribly - my nose was running a mile a minute and I my head felt like it was going to explode. Joseph and I drive to Children's and I stayed in the car while he went inside. He watched them load Jac into the transport isolette - much like what he had been in to move the night he was born. They brought him downstairs and loaded him into the ambulance and I went and looked into the ambulance to see him all loaded up. It was so hard to see my little boy strapped down to make sure if there was an accident or a quick stop he would not go flying. Augh!

We followed the ambulance and Joseph and I went inside Boulder hospital to follow him to his new room and watch him be transferred into the hospitals isolette. I wore a mask and gloves the entire time and did not get anywhere near him. Daddy helped get him settled and I quickly left for fear of getting him sick.

This was really only the beginning of the transition to Boulder Community - little did I realize this was going to be the easy part.

Since I was so sick I did not want to be at the hospital where I might get Jac or someone else sick. So I went home - and tried to sleep - and worried. I spent the rest of the week alternately being at home feeling sick and being at the hospital wearing a mask and touching Jac only minimally after washing very thoroughly.

By Thursday night I was feeling so sad and stressed from not being with Jac that Joseph and I went to the hospital around 11:00 pm to see Jac. All week I had not been happy in my talks with the nurses and reports from my mother and the small amount of nursing I had seen when I was able to be there for short periods. This was casuing me a great deal of angst and concern over the level of care that Jac was reciving. Not so much from a medical standpoint but from a developmental standpoint. I had gotten myself worked into such a tizzy that by Thursday night when we went to visit Jac I was feeling very on edge and protective.

Shortly after we arrived to see Jac he woke up fussing - with dirty pants. We changed them and then worked to get him settled again. We gave him his pacifier and he ahd a good long suck - Joseph held the paci for a long time and then I held it. We were both dead on our feet and while I was holding the paci Joseph fell asleep. And still Jac would not settle. I felt strongly that he could use from kangaroo time that I could not give him as my cold had moved into my chest and I was liable to cough any moment.

We got Jac out of the isolette and onto Joseph, got some warm blankets, and they got as comfortable as possible (the recliner in our room is not very comfortable) and they stayed that way for the next 7 hours (from 2 am to 9 am). In the morning Jac's day nurse came in as we were putting him back in his isolette and getting him settled. It had been a very long night for all involved and we were feeling relieved that he was settling down in his isolette. His nurse insisted that she needed to do his morning evaulation - right then. I lost it. I was so tired and frustrated and felt so powerless in that moment to decide what was right and wrong for MY son - I left the room and went downstairs - crying all the way - and sat on a bench outside the hospital - for I am not sure how long. Joseph was left with the nurse to handle the assessment. I felt grateful he was there as I was in to emotional position to stay. The complexity of the emotions I felt in that moment is impossible to describe but I cannot remember a time when I felt that powerless and disenfranchised.

I finally returned to the hospital and the rest of the day is something of a blur. Joseph took a day off from work to support me and my Mom came also. I cried almost all day off and on - as I tried to sort out my feelings.

Most of the feelings stem from seeing glimpses into Jac's care - in a new place that I don't understand - and having major culture shock. The difference between a local community hospital and a major teaching hospital are vast in both good and bad ways - and truly shocking to the system.

The ironic thing is that in the quiet of the Boulder hospital I felt much more lonely than I ever did in the hustle and bustle of the Denver hospital. At Denver there was so much going on all the time all around you that the time passed almost without you noticing it and each individual event did not feel as jarring. At Boulder each care seems like a big deal as there is nothing else going on to distract you. Weird.

After several days of reflection on teh changes I am not feeling angry like I was on Friday. Joseph and I spent most of the day at the hospital yesterday Saturday - and the nurses were very nice - and I was able to do 3 hours of Kangaroo care with Jac - which felt great - even if the chair was uncomfortable.

We have a Care Conference scheduled for tomorrow at 5:00 pm at which we will have the doctor, the NNP, the NAP team (developmental specialists), a lactation nurse and a social worker so that we can all discuss Jac's care and the plans going forward and get "on the same page" as they say. I am very hopeful that this will be a very helpful discussion (we have created an agenda of the items we want to discuss). Joseph and my Mom and I will attend.

Medically the following things are going on.

- Jac is quite far off his growth curve. If he had been gaining weight since he was born at the proper weight - he would now be around 1300 grams - he is now 962 grams. He has gained very little weight since he reached Boulder.

- Jac has been cold. We had not been having temperature regulation issues in Denver but he seems to be trending cold since he got to Boulder. This will be one of the topics we will try to sort out at the conference tomorrow.

- His feedings have now been compressed to 1 hour every 3 hours. So he gets 18 ml over 1 hour and then he has two hours with no food. He has been tolerating this well with no GI issues.

- He has been having occasional As & Bs and some desats but they all resolve themselves with no intervention.

- Dr. B has asked us to limit his Kangaroo care to a max of 1 hour at a time until he starts to gain weight. This is because he has been getting cold during Kangaroo and we want all of his energy to go into growing, rather than keeping warm.

There is light at the end of this tunnel. We are potentially only a few weeks away from him going home! There is hope that he will able to come home around his original due date of Sept. 12. I can't wait to be able to hold my little! boy in my arms with no wires and no alarms and no prying eyes - just him and I free to nurse and play and grow. With Daddy and the dogs and family and friends. We will get there - sometimes it seems closer and sometimes further away. Earlier this week it felt a million miles away but my hope is growing with every gram.

It is very hard to continue pumping through a cold and decreased milk supply and pain with no little mouth asking for food directly. This has been a real challenge through this process and I can't wait to feed him directly - at least from some feedings! The joy of that will I am sure make me cry - and I will cherish it forever.

Jac will be 37 weeks old on Wednesday - he is growing up so quickly!

If you made it through this entire post you are a true Jacolite. We truly appreciate all of the kind emails and comments - please keep them coming - they make the hard times easier.

Daddy creates a song...

I've been falling into a habit of singing Jac a little ditty...

Jackie boy,
Jackie boy,
You're my little Jackie boy.

Drink some milk,
Sleep some more,
Grow up to be big and strong!

;-)

Grandma and grandpa Johnson are back in town.

Taj's mom and dad drove in to Boulder on Sunday night. Bill has a NASA-related conference in downtown Boulder, and it was a good occasion for them to come back to visit us again.

This has been a tough week for Taj. Since she came down with a cold on Monday night,
she has mostly stayed away from Jac to keep him safe, and to not disturb him with her coughing. Ironically, this meant that even though Jac is only a couple of minutes away from our house, Taj has spent far less time being with him. In fact, Jac hasn't Kangarooed with Taj for 5 days. This has been really hard on her. And, on top of all this, Taj was also having difficulties with some of the aspects of the care at Boulder. I'll let her blog about her frustrations when she's ready to write about it.

It has been a tough week for Jac, too. The transport to Boulder has worn him out, and a great deal of things have changed all at once. His surroundings and the people handling him have all changed from what he had been used to for the past month. He was irritable and did not calm down very well.

One thing that we discovered is that the smallest available "Snuggly" at Bouldr was still much too loose to firmly contain Jac. He apparently was not resting well because he was getting too flopped-out within the much looser snuggly. We eventually solved this by rolling up some diaper cloths to fill in the void. He settled much nicer after that. We also scrounged up one of the really small Snuggly that he had while he was at Denver, and he switched to it on Friday afternoon.

Jac's feeds has been raised to 18ml of milk every 3 hours, with all 18 ml delivered during a 1 hour feeding period. With this change, Jac's stomach will go through cycles of being hungry and being full. The idea is to get him conditioned to what he'll experience when he starts bottle/breast feeding.

Jac also had an ROP eye exam on Friday afternoon. It's one of the most intrusive non-surgical procedures that are commonly done with preemies. He was not happy during the exam, and cried through most of it. Fortunately, he calmed down quickly afterwards. The bad news is that his eyes are still premature, so he'll need another test a week from now.

Grandma Johnson did a lot of stand-in work for mommy this week, keeping watch on Jac's progress. Jac even did a kangaroo session with grandma for two hour on Wednesday afternoon.

Also, on Thursday night, Jac kangarooed with daddy for almost seven hours!

Jac's getting really good at sucking on the pacifier. He's getting himself ready to breastfeed from mommy! He still hasn't quite gotten everything figured out -- as he focuses on the sucking, he doesn't breathe enough and ends up desaturating. Fortunately, he recovers fairly quickly - usually less than 20 seconds -- and his desats have been fairly mild (mostly high 70's/low 80's).

Back to the high-flow

It's nice to have Jac so close to home now -- I stopped in on the way to work this morning to see him and to drop off his mommy's latest fresh breast milk.

The team at BCFH decided to put Jac on 100% fresh milk while Taj has her cold -- the idea being that the milk would contain plenty of the antibodies for that cold.

Jac is now going to intermittent feeding so that he will get used to his stomach getting full and then empty.

Also, so much for my suspicions about being able to go without a cannulae. He switched back to high-flow nasal cannulae (at 0.75 l/hr) this morning...

NG replaces OG. Low flow with smaller cannulae.

When I visited Jac tonight, his OG (oral gastric) feeding line had been replaced by a NG (nasal gastric) line, the nasal cannulae from Denver was replaced by a smaller one; and the high-flow was discontinued, replaced by low-flow from the hospital wall oxygen outlet. He is now at 0.02 liter/minute of oxygen via the cannulae.

Earlier in the day, before the switchover, Jac apparently had some A's & B's. Since the switch, he's been doing fine -- he only had one quick desat, and it went away before the nurse got to him.

At home on Sunday night, I turned on my CPAP machine on "slow start" so that there would be less noise for Taj as we went to sleep. When I do that, it's a little more difficult for me to breathe. It dawned on me that the same phenomena was happening to Jac as he was getting weaned off the oxygen at Denver.

I think Jac was having problems with his low-flow because the cannulae was too big and effectively coupled his nose directly to the air supply; and, as they dialed down his airflow to wean him, he was not getting enough total air volume, and couldn't inhale enough through his nose. We never got a chance to discuss this suspicion with the attending at TCH before Jac moved out.

So, maybe, Jac was ready to breathe completely on his own, and we just missed it. We'll know more in the next few days!

With the OG tube out of his mouth, Jac seemed much happier. His mouth has a cute baby-mouth look, and he was occasionally letting his tongue poke out of his mouth, much to his father's delight! On top of that, he kept making motions to suck his thumb -- he would have succeeded, too, if he would just figure out that his thumb should not be held in his fist!

Good bye Denver! Hello Boulder!

This morning, Jac left The Children's Hospital at around 9:45 AM, and settled into Boulder Community Foothills Hospital at around 10:45 AM. He was unhappy at each end of the transfer as he was moved from one isolette to another. Except for that, he was perfectly fine and he had an uneventful transfer to his new home, only 2 miles from our condo.

Taj came down with a cold last night, so she stayed out of the hospital in Denver. We both went in to see him settle in to his new home and briefly talk to the staff there. Taj is now in bed, recovering. I am off to work. Grandma Toni is staying with Jac today.

Thanks everyone in Denver! We are very glad that Jac had you during the past month! We will miss you!

Jac leaving his bay at The Children's Hospital in Denver.


Jac loaded onto the ambulance at TCH.



On the road to Boulder. Good bye Denver, and thank you very much!


Jac arrives at Boulder Community Foothills Hospital.


Entering the Birth Center -- picture taken less than 50 feet away from where he was born.


The O.R. where Taj had the c-section and where Jac was born is behind the double doors in the background.


His own private room at BCFH. It's really quiet in there!


Jac settling in to his new home.

Lot less stuff

Only 3 weeks ago, Jac looked like a science experiment.

He had a PICC line for IV's, an Art line (for blood transfusions), a peripheral vein catheter for draws (to check his phosphorous and RBC/platelet levels), and a respirator tube (later followed by the CPAP mask for a while).

There was a bunch of bags, pumps, and ventilation equipment that went along with all of this.

Each piece of equipment would beep at various times as an IV infusion would complete, and then the isolette humidifier ran low on water, and then the TPN line was occluded, and then the CPAP humidifier needed water, and then the milk infusion would be done, and so on and so on...








Things have gotten a lot simpler in the past week, and correspondingly the beeps and alarms have mostly gone away.



The room is now mostly "empty" now, and it's made it easier to transfer Jac onto mommy for plenty of Kangaroo sessions.


I'm looking forward to the day when all that he has attached to him is his diaper. Very soon...

Speaking of size...

Just for context, we took a picture of Jac alongside a standard 12 oz. soda can... This picture was taken two days ago, when Jac was at 900 grams (he started at 700 grams).

It's amazing to see him grow and starting to look more "filled in". He's growing well!

2 lbs.

Taj just got off the phone with the NICU... Jac's weigh-in tonight came in at 930 grams - he has officially weighed in at over 2 pounds. Yeah, Jac!

A good day!

Jac remains on his 5.5 ml / hour feeds alternating between colostrum and fresh breast milk every 4 hours.

His reflux seems to be much more under control and he has been resting more comfortably - which is good since that will help him grow.

He was 900 grams last night - which is 1.98 pounds - so close to 2 pounds!

He is continuing to have desats and a few As & Bs but less frequently. They have increased his dose of caffeine per kilo. The range can be from 5 - 20 and his was at 13 when they ran the blood test on Friday - so they are increasing his dose to raise his level a bit. He gets a dose of caffeine in his OG tube every afternoon at 4 pm. The caffeine should help decrease the number of desats and As & Bs he has.

Yesterday Joseph and I did Kangaro with Jac. It was wonderful for both of us. Father and son were having a snooze while an LP went on in the next bay! Mom was disturbed by the noise and concern for the baby but Jac and Joseph slept right through it.



I also had a nice round of Kangaroo care with Jac. He is awake and aware more frequently now. It is so much fun to see him awake and looking at me.

Grandma and Grandpa Johnson arrive

My parents arrived from Los Angeles last night. They decided to make the drive (which is gorgeous). They left on Friday and arrived here on Sunday evening. They brought some more of our stuff which we had to leave behind (mostly Jac's stuff from the baby shower). My father has a conference here and my mother is tagging along to keep me company which is much appreciated. They will be staying through this Friday.

Reflux issues and sleep

Jac continues to have reflux issues. This means that he wakes and up and coughs and makes faces and arch that make it clear that something hurts. Sometimes he only wakes up for a few seconds - crys - and then goes back to sleep. Sometimes it takes much longer for him to calm down.

Usually when he starts crying and won't stop for a longer period of time it is because of a dirty diaper. He really hates "wet pants" and especially poopy pants - which I can of course completely understand!

Joseph and I have been trying to do a few things that we won't be able/want to do once Jac is in the hospital here in Boulder. We went to the movie 10 mph last night - if it comes to your town you should see it, we really enjoyed it.

It is really hard for me to leave the hospital and go do these things but in a certain way it is the only way to maintain my sanity. The NICU is a difficult place to be - with all of the noise and hubbub. Last night when we came back from the movie the bay next to us (the one that had the leak) was being prepared for a new admission - and man was it loud. I sometimes think the staff forgets the impact of all of their noise is - especially when it lasts. The curtains that we use for walls are paper thin like in any hospital - but they give the illusion of blocking something.

Jac is still having As & Bs (see previous post) but less frequently. His nasal cannulae is set to 1 litre of flow and his oxygen is hovering between 26 - 30%. He also has desats (where his SpO2 goes down but his heart rate does not) relatively frequently - particularly if he is mad.

It was so nice to have Joseph at the hospital with me on Friday night and Saturday - it is really hard to be there by myself - I am very glad I am not a single parent.

For the most part though Jac sleeps and grows! He is now 900 grams! - Go for a Kilo Jac! His feeds remain at 5.5 ml / hour and the plans for Tuesday transfer continue!

The happenings of 8/9 and 8/10

Okay - here we go.

8/9 - Taj's bday. A good day. Jac got his PICC line out which means that he now has both of his hands free! This is great and he is already adjusting to having them both and bringing both of them to his face. Without the PICC line all of his nutrition is now coming from breast milk.

We are still alternating fresh breast milk and colostrum every 4 hours. Yesterday they upped the kcal/ounce of fortifier to 24 kcal / ounce (regular breast milk is approximately 20 kcal / ounce). On 8/9 his feeds were increased to 5.0 ml / hour and today (8/10) they were upped to 5.5 ml / hour. for his current weight that is considered full feeds! Yeah! In terms of feeds this is where we need to be to be able to go back to Boulder so that is fantastic.

On 8/9 his weight was 870 and today (8/10) 880! Go Jac

He was also switched from the heated high flow nasal cannulae system to a nasal cannulae from the wall which is not heated. He has not tolerated this change was wel as we might have hoped. He has been having some A's and B's (which stands for Apnea and Bradycardia). His A's and B's are not considered terribly serious because he is able to self stimulate himself to breathe again - some babies need stimulation to start breathing again!

He has been receiving caffeine through his PICC line since 7/19 and when the PICC line was removed he was given an oral dose of caffeine and then no additional order was written to continue it. This was in all likelihood a mistake as typically kids are weaned off the caffeine (like taking away a morning Starbucks cold turkey!). He was given caffeine orally (through his OG tube) this afternoon at 4. His nurse thinks that the sudden decrease in his caffeine level may be the cause of the A's and B's since he has not had them before. They drew some blood at noon today to check his caffeine level but we won't have the result of that until tomorrow so we shall see what that looks like. I hope that is the problem! The A's and B's are very scary!

Joseph is doing Kangaroo care with Jac right now and thankfully they are both asleep. Yesterday was a nice day but today has been very trying and scary and I am exhausted. It is hard to rest when I am worried.

Today we did not have one of our primary nurses because of a leak in the ceiling in the bay next to ours that changed the nurses assignments. Fortunately we will get her back tomorrow. The days are always easier with a familiar nurse that knows Jac and what to expect from him and what he likes and doesn't like. This keeps me from spending the entire day feeling like I am trying to educate them and bring them to an understanding of the best way to care for him. Today has been difficult also because Jac has been having A's and B's all day (not too often but often enough) and crying jags brought on by reflux. This too shall pass I am told - he will grow out of the A's and B's and the reflux but in the meantime we have an unhappy baby and a stressed Momma.

If Jac stays on his feeds at 5.5 ml / hour we should be able to go back to Boulder Community Hospital on Monday or Tuesday - 1.7 miles from our house! Keep your fingers crossed!

Actually posted by Taj.

ROP exam went well

Jac's ROP exam yesterday went well - he came through it better than I did! He does not have any signs of ROP at this point but the ophthalmologist said this his eyes need to re-evaluated in a week because they are still immature. Augh!

The next exam is scheduled for next Wednesday - and he may have to stay at DCH for it - we are investigating if they can do the exam at the hospital in Boulder so if he is ready to move before next Wednesday we can go!

Daddy Kangaroo care

Joseph and Jac did Kangaroo care tonight. They spent about 2.5 hours together and we eventually had to wake them up! They were so cute - it was wonderful to see father and son together!

Alexis left today - sad Taj!

Alexis left this evening and I am very sad! I am going to miss her! She was so wonderful to come and spend so much time here! She has been here since shortly after Jac was born and she has been more help than I can possibly describe!

Dork - I love you and thank you from Joseph and me and Jac! Jac will know when he grows up how his Auntie Alexis helped his Mom survive these critical weeks!

Have a safe flight Lex!

Getting close to moving back to Boulder (knock on wood)

Jac is up on his feeds again today (4.5 ml / hour - up from 4.0 ml / hour). His cannulae flow has remained the same - 0.5 litre of flow - currently it is heated, high flow but they may change that tomorrow to wall air which will not be heated - and we will see how he tolerates that.

Jac needs to get to approximately 5.3 ml / hour to be considered full feeds for his weight (he weighed 870 grams tonight!) and he needs to be at that for at least 2 days before he can transfer back to Boulder!

We are getting so close! Go Jac! If things keep on going the way they are we may be able to move this weekend or early next week!

I wish you could all watch him grow - it is so fun - and he is awake more now - especially at night! When we get back to Boulder I will be able to move in with him - so I can be with him whenever he is awake!

Tiny Miracles Trot

Hi All - I have decided to participate in the Tiny Miracles Trot (Aug. 26) (or in my case walk as I am not quite ready for trotting after the c-section) to raise money for The Children's Hospital in Denver where Jac has been in the NICU since he was transferred here after he was born. If it was not for the doctors and nurses here at TCH Jac might not be alive, and almost certainly not doing as well as he is.

Every day in this hospital I see sick kids that are being helped and made well again and it touches my heart to see their faces.

I hope that you can find it in your hearts to donate a little money to help support the hospital's mission of helping kids.

To donate money in the name of Baby Jac click here

1. Click on "Make a Donation"

2. Enter your information

3. Choose "Baby Jac - Team Mom (57856)" from the "In whose name are you making this pledge?" drop down

Taj Chiu

Lots of Kangaroo, up on feeds, down on flow

Jac and Momma doing Kangaroo care - sorry for the flash Jac! It was an accident but it made for a picture where we can see you!



Grandma and Grandpa Chiu with me and Jac during Kangaroo

Today was a very nice day. Jac and I did Kangaroo care twice. In the morning we did Kangaroo for around 4 hours. In the afternoon we did it for around 2 hours.

With Jac's current acid reflux problems a more upright position should make him feel better and it seemed to. Other than one crying jag as we were getting settled for the afternoon (along with some arching which is a sure sign of reflux) he was fine and slept peacefully.

Grandma and Grandpa Chiu visited twice today - both while we were doing Kangaroo so they got to see Jac out of his isolette and get a good look at him.

All in all - a nice day! I hope Daddy can do Kangaroo soon!

Jac's feeds are now up to 4.0 ml / hour. The nurses tell me that full feeds for Jac is 4.5 ml / hour (my calculations showed 5.0 ml / hour for his current weight). He is on a total of 6.0 ml / hour of fluids (he is supposed to be at 4.5) but his TPN is still running through his PICC line because they need to keep it open until he is on full breast milk feeds. If all goes well tomorrow he should go up to 4.5 ml / hour!

The flow on his nasal cannulae is now down to 0.5 litres - down from 0.75 - and he did just fine. It is easier for him to desat at this flow when he gets upset and starts taking lots of very fast shallow breathes but hopefully he will adjust to this and as he gets older (weeks!) he should stop breathing as quickly when he gets upset (and in general!).

His weight is also up - to 840 grams from 821 yesterday. Go Jac go!

I am very apprehensive for Jac's ROP (Retinopathy of Prematurity) exam tomorrow morning. The exam itself is apparently quite uncomfortable and Jac is such a sensitive little guy. I have been toold quite clearly that for all of the nurses this is their least favorite thing to have to do with preemies and that I should not be there - as I would in all likelihood snatch Jac away. Augh. I am going to wait in the waiting room and come back and Kangaroo with Jac afterward and try to calm him. I am a bit nervous about being there without Alexis or Joseph but hopefully I will be able to handle it - or perhaps my tears will mix with Jac's. Augh!

So noisy here today

A new little baby like Jac (IUGR and born preemie) just came in today and it is noisy! They are prepping him for surgery and making a real ruckus. I had Jac's isolette open to do his cares and it just kept on getting noisier and noisier. I was able to get him closed up and closed but the noise continues!

I feel for all of the parents and babies here - it is a rough place to be - and I really feel for the babies that need surgery. I feel very lucky that Jac has avoided that so far - but I keep my fingers crossed.

It is probably a good thing that I was not here at Jac's admission and when he was being intubated - this would have been too much for my little heart to handle - it is hard enough to watch it for another baby!

Mom changes her mind about pacifiers

This pacifier looks huge but it is the right size for him!

My mind has been changed on the subject of pacifiers for our little Jac. After a great deal of discussion with Jac's nurse last night I have learned why pacifiers are a good thing for preemies. Jac is just reaching the gestational age when he will start non-nutritive sucking - but he needs something to practice on so when it comes time to breast feed he has worked out the suck, swallow, breathe mechanism (which will develop around 37 weeks (he will be at 35 weeks on Wednesday). Also, as Jac's CNS (Central Nervous System) matures and he gets better at regulating all of his functions the pacifier can help him learn to soothe himself through difficult moments.

I saw evidence of this last night when we did one diaper change without the pacifier and one with it. During both we moved very slowly and respected Jac's cues. During the first diaper change his nurse and I spent quite a bit of effort to keep his arms and legs contained and calm. During the second diaper change with the pacifier I was able to hold the pacifier for him (he can't hold it in his mouth) and leave his arms for him to regulate. It is very important for Jac to learn this - that he can get through cares without getting upset - and he did really well.

Before I thought he was spitting the pacifier out but really it is just that he can't hold it in himself.

Jac's ability to regulate his state and his body is getting better every day and the NIDCAP training is designed to support this growth! Jac can now look me in the eye for short periods of time, move his arms and legs in a non-jerky way (when he is not agitated) and move his head a bit! Go Jac!

Feeds are up again and a head ultrasound

Jac's feeds are up again! This time to 3.5 ml / hour. They are going to start adding a breast milk fortifier to my breast milk to increase its caloric content and to add some other extra stuff. They will probably start doing that tonight or tomorrow. Sometimes this can cause some diarrhea or tummy problems so they will watch him closely after they start it. Hopefully he will tolerate the fortifier. Normal breast milk is considered to have 20 kcal / ounce and with the fortifier they will increase it to 22 kcal / ounce. If he tolerates that they will slowly increase the caloric content - up to 26 kcal / ounce is the max in my understanding (this would happen over a period of days). They had to wait until his total fluid intake was up to around 100 ml / day before they could add the fortifier.

He had a little bout of reflux induced fussiness this afternoon. They have not written for meds for the reflux but I am going to ask about it again. The medication is an oral and can be given by his OG tube directly into his stomach. (I just asked and the resident is going to write for it)

Jac had a head ultrasound around 2:30 pm today. The technician came rolling in with a big ultrasound machine. Jac had just had his reflux fussines so I was worried he would have a hard time with the ultrasound but he handled it very well.

His nurse is off with a another baby having a test in another part of the hospital so I am in charge! D'oh! I have gotten pretty good at doing his cares but it still makes me nervous to change his position. He is currently on his left side and I have a hard time changing his diaper when he is on his side. This means that I have to rotate him onto his back - moving his head and his body - without bring him out of a stable position! Challenging!

A stable weekend

Jac looking very peacful. When I come in most days I find him in a position very similar to this!

We have all had a very busy weekend. The Chiu's have been in town and we had a nice time visiting with them. This meant less time spent with Jac but as always he was in the care of the doctors and nurses at DCH - although of course I wanted to be there.

Jac is now up to 3.0 ml/hour on his feeds - he has been moving up 0.5 ml/hour each day. He has also increased his weight - as of Saturday night he was 821 grams and his head was 25 cm (up from 23.5 cm) and his length has increased to 34 cm (up from 32.5 cm). He is growing! As imperceptible as it may be! I can see that he is starting to fill out - his cheeks and belly are a little plumper!

The doctors calculate how much nutrition Jac needs on an hourly basis as a function of milliliters per kilogram - which is a function of the number of calories in an ounce of breast milk. At his current weight full breast milk feedings is 5.0 ml / hour - and he is at 3.0 now - so we are getting there. Jac still has his PICC line in which is used to supply him the additional nutrition that he is not getting from breast milk yet. Once they get the breast milk amount up they will fortify the breast milk to add to its nutritional content and to add the additional electrolytes and vitamins that he needs. It will be an exciting day when he gets his PICC line out. He has not had use of his right hand for several weeks - and it will be very calming for him to be able to bring both of his hands to his face and more easily touch them together.

Jac's phosphorous level is still being monitored closely, His level has been stable for a week or so but they continue to monitor it closely. Phosphorous is used to to make ATP and is required for muscle functioning. His PICC line removal may be delayed if his phosphorous level starts to move back down as they reduce his TPN and the level of phosphorous in the TPN. The hope is that Jac's body is now maintaining the phosphorous level on its own.

Jac started on Sunday morning to have some reflux. This is like reflux in adults where some stomach acid comes back up into your esophagus. Not good. This is common in preterm infants - and especially so when they have an NG or OR tube as Jac does. The OG tube holds the sphincter at the top of his stomach open and allows acid from his stomach to come back up. We have tilted his bed (even more than it was before) to raise his head above his stomach.

Last night (Sunday night) I spent about 5 hours talking to Jac's nurse. She is specially trained in NIDCAP, which is a way of looking at preterm development through behavior. It is both fascinating and incredibly helpful. Preterm babies canot be treated as small full term babies. Many of their systems are not yet developed and this has to be respected in their care. We spent quite a bit of time doing Jac's cares - and it was really wonderful. We monitored his state and level of organization and did the things we needed to do at his pace. I truly appreciate all of the time she spent talking to me and explaining and also directly caring for Jac. NIDCAP based care is truly challenging as it forces you to empty yourself of whatever else is going on outside the isolette and get in there with Jac and work with him - and his cues - that tell you what he can handle and what he can't.

The Chiu family weekend

It was quite the weekend with the entire Chiu-clan here, and it was really nice to be with them. I wish we had a little more time with Ken, Camilla, Charmy and Wayne, but they had to go back to Los Angeles early this morning. :( My parents will be here for one more day.

They all visited Jac a few times over this weekend. My dad was so excited to touch his grandson at the same time that I was. Three generation of Chiu's in the isolette!

On Saturday evening, we all got together for a really nice dinner at Chez Thuy, which is the restaurant where we had our first dinner in Boulder, when we visited Leslie and the girls back in 2004.

On Sunday, my parents, Ken, and Camilla went on a sightseeing trip during the day. Charmy and Wayne came to our condo and helped us finish preparing Jac's room. Now, there is a nice crib and gliding chair and some book shelves (the ones Alexis drove around the region to get last week). The big pile of boxes that used to be in the room have been removed to the garage. Our condo is starting to really come together!



Jac's been opening his eyes for longer periods of time, as he's coming further along on the development curve.


He's been having reflux from having to process a lot of milk. To make it easier for him to handle all the milk, his bed is now more inclined than before.

The Chiu Clan comes to town.

The entire Chiu clan (plus one Chu) flew into Denver last night. We had originally planned on making a late night visit to the NICU, but with delays from the thunderstorms, and everyone just being too tired, we decided that we'll visit Jac after a good night's rest.

Grandma and Grandpa Chiu will be here until Tuesday.
Uncle Ken and his wife (Aunty) Camilla will be here until Monday.
Aunty Charmy and her (*ahem*) fiancee, (Uncle) Wayne ("the Chu") will be here until Monday.

I'm very glad to have them here. I miss seeing them. And I'm glad that Jac will meet daddy's side of the family!

Respiratory progress, Kangaroo care, and more awake time

This is what Jac looked like when I arrived this morning

When I arrived this morning I found a very happy little Jac fast asleep. He was so comfortable that his nurse and I waited quite a while to do his cares until he started to stir.

Jac continues to do well on his feeds. He stayed at 2.0 ml / hour. We have now added fresh breast milk to his feeds. This means that for 4 hours he gets colostrum and then for the next 4 hours he gets fresh breast milk. The reason for doing this is to give him some additional protection from the infections in the hospital. When I am exposed to an infectious agent my body will produce antibodies to it and within a few hours those antibodies will be expressed in my breast milk hence providing Jac some protection from the infectious agents in the hospital.

Jac remains on the high flow nasal cannulae. He had been at 2 liters of flow and last night he was moved to 1 liter. (The flow rate refers to how much air he gets in 1 sec) down from 2 liters. This means that Jac has to work harder to breathe and he tolerated it very well. He had a few desats during the day - especially when he was moved and we had to increase his oxygen to get his sats back up - but these episodes only lasted a few minutes and Jac did not seem to be working extra hard to breathe - they mostly happened when he was crying!

Jac was awake quite a bit yesterday - some of it in a quiet alert state and quite a bit of it crying. For a little bit Jac was in a quiet alert state - and I put my face down at the portal and we looked right in one another's eyes for a few seconds. It was a beaatiful moment and I wish Daddy had been there to share it. I know he was looking right in my eyes and that he knows at least that he sees me all the time - even if he doesn't know I am his Mom or what that means!



Jac right after Kangaroo care - still fast asleep - before we got him wrapped back up

Jac and I got to do Kangaroo again again today. It was very nice and we fell asleep together. I was in the lounger chair with him on my chest. While I was asleep his nurse checked his temperature and gave him an extra blanket. I am supposed to heat up enough to keep him warm but I usually run a little cold. We used to use the portable warmer to keep warm but we have now progressed to using just warmed blankets. We spent about 2 hours together and during that time his nurse replaced his isolette. He had been in the other since his arrival at the NICU so it was nice to have a new one.

After we got Jac in his new isolette the flow rate for his nasal cannula was reduced to 750 ml / second from 1 liter / second and his study gas was turned off. We don't know if the study gas is NO2 (which should have been providing some benefit to his lungs). He seemed to tolerate the lower flow rate with aplomb but I am very concerned about the next move which is to low flow nasal cannula. I am worried because of the problems we had last time in the ICC. I am holding out hope that weaning his high flow down slowly as we have and that he should have gained more strength will mean that that transition will also go well - although I have made it very clear that I don't want him moved to low flow without me being there so I can watch him very carefully.

Jac did not seem to like his new isolette - or something else - because he spent about 1.5 hours crying on and off after he was in there. His nurse and I could not figure out what was wrong. After changing his diaper and his position, adjusting his canula and his swaddling just before Daddy arrived he finally calmed down and stopped crying. At that point I had been standing over his isolette with my hands containing him in an attempt to help him get organized and soothe himself. Tiring for Momma and for Jac. Once he calmed down he slept soundly until we left around 11:00 pm.

Jac is spending more and more time awake these days. It is so nice to see him awake, looking at me. He is able to move his eyes purposely for very short periods of time (a few seconds) before they drift off again. He is also crying more - which to me shows that he is feeling well enough to tell us that he doesn't like something and we need to figure out what it is. He now changes the position we put him in if he doens't like it. When we put him on his tummy now, he frequently rotates himself to one side so he is half on his side, half on his belly. I am so happy to see him showing preferences and moving around. He has also started to be able to move his head a bit - fractions of an inch really - but it's a start! Go Jac!

His weight tonight was 800 grams - up from 770 yesterday! Keep on growing!

Jac tries a pacifier for non-nutritive sucking practice

Jac with a pacifier - It is huge!

Jac's nurse last night told me she had given him a pacifier with breast milk on it and that he sucked on it for 20 minutes. I am not a huge fan of pacifiers in general (especially not when they are used for calming) but Jac's case is a little bit different. He is now 34 weeks old (from time of conception) and his suck reflex should be starting to kick in - but he has to learn how to do it. Sucking on his hand, or a pacifier, or an empty breast is considered non-nutritive sucking which he needs to practice before he can transition to nutritive sucking for breast feeding.

I have told the nurses to put into their care plan that I don't want the pacifier used for calming - only for introducing the taste of breast milk and non-nutritive sucking practice. I feel very torn about the use of pacifiers - there is so much conflicting information out there and it seems every person I talk to has a different opinion. This is a difficult one and I reserve the right to change my mind.

I gave him one this afternoon after we had finished his cares with some breast milk on it. He sucked on it for 2 minutes and then spit it out. I would prefer that he not enjoy pacifiers and save me the decision!

Quiet day in the NICU

This is what Jac looked like when I got here at noon. So comfy!

Jac and I are having a nice, quiet day in the NICU.

When I got here at noon Jac was fast asleep on his right side. He looked so comfortable I did not want to wake him up. Unfortunately he is no longer in the womb, and out here we have to change his diaper and do various other things periodically. So - I slowly woke him up - and then his nurse and I performed his cares. This includes: diaper change, SpO2 sensor change, change in position, cleaning his mouth if necessary, measuring his tummy girth and listening to his chest and bowel sounds with a stethoscope.

After his cares we decided to put him on his tummy - he tends to like to be prone and his breathing is very good there. We also upped his continuous feeds to 2 ml / hour at noon. This is major food for such a little guy.

Around 1:45 pm I went to lunch - Jac's nurse was at lunch also and returned shortly after I left. When she got back she found that Jac had gotten himself out of his prone position. She put him back and wrapped him back up. When I came back at 2:15 pm I found him flipped all the way to the side of his isolette. It must have taken quite a bit of muscle to move himself that far. I was worried when I first saw him like this and I went and got his nurse.

We put him on his back, and then checked his diaper - which was quite dirty - probably what made him move! We fixed that, changed his bedding and then decided to leave him on his back. He was wide awake and seemed to be in a quiet alert state. I spent several minutes talking to him through the porthole - very, very quietly.

And then he appeared to start foaming at the mouth and retching. I was very scared and called his nurse immediately. She suctioned out his mouth but he was turning redder by the moment and he was crying. His nurse called for a different type of suction tube and a resident. We got both and he started to calm down although he continued to foam a bit. They think he started gagging on his OG tube and that started the spit up. Once his nurse suctioned his mouth out for a few minutes he settled back down. I was very scared and I told the nurses that. They were as usual not as concerned as I was - good thing they are calm when I am not! I am usually good in a crisis but this feels so different - it is very hard.

He hasn't really settled back down yet - he doesn't seem to be able to find a comfortable position - we will do his cares again in a little bit and see if we can find him a comfortable position. We are also considering doing Kangaroo this afternoon if he is still tolerating his feeds and his belly looks and sounds good.

One nice change is that two of the kids in the room we are in moved out yesterday and so there are only 2 kids in this room - Jac and a girl - both with the same nurse - so it is pretty quiet in here - although the other child's monitors go off a lot. Fortunately Jac's don't!

Medical changes for today

Electrolytes look good - bilirubin going down - this should mean that he is starting to produce more red blood cells and the ones he has are not dying off as quickly.

Total volume of feeds up to 4.5 ml / hour - up from 4.0 / hour which he has been at since he was admitted.

Weight: 770 grams last night - up from 698 grams (his birth weight) - up from 730 grams the night before. The doctors would like him to gain 30 - 40 grams / day. They weigh him every night.

Feeds increased to 2.0 ml / hour.

A good day so far with a little scare in the middle of it.

Kangaroo care with Momma

Jac and I did Kangaroo care tonight from 9 pm to 10 pm - which was great! After such a hard day for both Jac and I it was a truly calming experience.

Jac pooped this evening when Joseph changed his diaper the first time (during the diaper change) and then he pooped again while he was lying on me (fortunately he had a diaper on). This is all great news in terms of him tolerating his feeds. His poops are also starting to get the breast milk yellow tinge!

Jac is getting more breast milk

Jac in what appears to be a quiet alert state looking right at me

The only change with Jac today was that his breast milk intake through his OG tube was increased from 1.0 ml/hour to 1.5 ml/hour this afternoon.

He also pooped a bit today which is good - the more milk he gets the more he will poop - more fun for Mom and Dad. His poops should change soon from meconium poops to breast milk poops which should be much easier to clean.

He is stable on the high flow nasal cannulae and his TPN has been reduced to 2.5 ml/hour and he continues to receive extra lipids.

Earlier today Jac had an echocardiogram of his heart. This is part of the NO2 study that we put him on - and as soon as the ultrasound technician showed up with no warning - and not hewing to Jac's schedule - I felt sorry we had agreed to the study. The echocardiogram took about 30 minutes during which time both Jac and I cried. Alexis tried to calm me down as I tried to alm Jac down. Jac calmed down long before I did.

During this procedure Jac's nurse went to lunch - which she should not have done - as Jac got very cold from the ultrasound gel and the length of time his isolette was left open. Initially I did not know how cold he was because the ultraound gel had gotten all over his sensor and it had come loose. I fixed the sensor (or tried) and when the nurse finally came back we replaced it - and he was cold. His skin temperature was 95.0 farenheit - cold! And I was mad! I told the nurse who was attending to another baby and she seemed not to be able to understand me - and I was madder. I got a warm blanket and as soon as I did so the nurse came back - we measured his temperature and he was cold - and put warm blankets on him and his hat. I had to leave during this as I was too upset. It took 30 minutes for him to warm back up but he finally did and his temperature is stable as I write this.

I am really starting to run into the frustration of being in the NICU. I truly want to care for my son - but he needs all of the medical technology and I am fully cognizant of the fact that had he been born 20 years ago he probably would not have survived. Unfortunately the intellectual knowledge does not change how I feel - and how helpless I feel when I can't do anything to protect him.

I have always had some bugaboos with doctors and nurses - I don't really know why but I have had them since I was kid - I think they may be rearing their ugly head now. If any of you have any ideas or suggestions of how to most effectively cope with this situation I would appreciate your comments.

I don't think I have ever felt as helpless as when my son is crying because he is uncomfortable/cold/disorganized and I can't do anything to help him except to hold his head and arms him as I have been taught to do and talk (very softly) to him. I am sure that I will know this feeling of helplessness for the rest of my life as I care for Jac (and future children!) but this process of adjusting to this feeling is wrenching.

I know the doctors and nurses are doing their absolute best for Jac and they are the reason he is alive but sometimes I can't help but resent their control over our lives even if it is in the cause of making Jac healthy and able to go home. I hope these are normal feelings which other parents can empathize with.