Jac continues to do well

Jac is continuing to do well. He was moved back to the high flow nasal cannulae this morning at 2 am and he is doing well on it. His feeds were also upped to 1 ml per hour at Noon today and he is also tolerating that.

So - all in all a very quiet day. I went down to the financial aid office, talked to the Part C liason, talked to the Development Specialist who trains the staff on the Newborn Individualized Developmental Care and Assessment Program which helps them to understand the developmental needs of babies - and is particularly important with preemies. I also went to a lunch sponsored by the March of Dimes entitled "My Baby's Breathing" which was done by an RRT from Children's and was very informative.

And then Alexis, and Joseph and I worked on the house all evening! Things are looking much better - we will put up some pictures soon! Thursday we are getting our couches and chair! Yeah!

Also - I put up some more pictures on flickr (which I still need to label) for everyone to enjoy!

Happy 3 week birthday

Jac is 3 weeks old today and doing well after the excitement of this weekend. We are very happy he is doing well - but we know that we need to expect more ups and downs!

Jac doing well and CPAP mask issues

Jac is doing quite well today and so is Momma. Daddy is back at work keeping us all in diapers and health insurance! Alexis is back from Detroit taking care of Momma while Momma takes care of Jac.

Jac is still on the CPAP with no immediate plans to take him off. He is doing well on the CPAP on room air at a pressure of 6. If he continues to do well on the CPAP for another 12 hour or so they will lower the pressure on the CPAP to 5 and then keep on lowering it if he continues to do well - basically wean him off - and eventually if that goes well move him back to the high flow nasal cannulae.

When I got here this morning Jac was having some problems with his CPAP mask - his head and face are so tiny that it is hard to get the strapping and mask well adjusted to stay on his head. He had been on his tummy which had pushed the mask off center and eventually off his nose. An RT came over and tried to fix it and thought she had. Then it came off again. Jac's nurse and and I tried to fix it, and then Jac's nurse and a charge nurse, and then another RT, and then finally we got the original RT to take the entire thing off and readjust it - and then we got it! We also put some duoderm on his face (my idea from other nurse who had done it before) to see if tht would help make another seal. Finally after about an hour we got it fairly settled and were able to do his care and roll him over without disturbing his CPAP. Progress!

Jadc had another tummy Xray last night which looked clean - no clear signs of pneumatosis so the concern about NEC seems to be dying down. Also his blood cultre looking for infection came back negative after 48 hours so that is also a good sign he does not have NEC. I am keeping my fingers crossed that we are out of the woods on that one!

Jac is starting feeds again - much more slowly this time - 0.5 ml per hour. Every 4 hours his nurse will check the residuals in his tummy (she has checked once so far and it was clean - no residuals) to make sure he is digesting his food. His TPN has now been reduced by 0.5 ml per hour to 3.5 ml per hour to take into account the fluid and nutrition coming from my milk.


He is no longer on an OG tube with suction - it has been replaced with a different feeding tube which is yellow rather than clear and slightly smaller. This one cannot be attached to low flow suction from the wall - so if his tummy starts blowing up with air again will need to put the OG tube in again (it is slightly larger) to suck the air out - we need to wait for some more hours of feeding to see if his tummy is going to blow up - the CPAP is blowing air in to his lungs and his tummy and he has had problems with tummy blowing up on CPAP before - but it hasn't so far.

Alexis and I are now just hanging out next to his isolette and he is sleeping away - which is what needs to grow - sleep and eat - and poop and pee - and sleep and eat! Grow Jac grow!

Happier Momma

I am of course feeling much happier today - my mood and overall feelings trend right with Jac's - when he is miserable so am I and when looks and acts better I fell better.

It was so hard to watch him struggle yesterday when they were trying to put in the catheter. I was holding him and trying to keep him from moving while his nurse tried to put the catheter in - I could barely take it - I had to leave during the second insertion attempt and leave his much steadier Daddy to hold him.

The trials and tribulations will continue - good days and bad - today is a good one so we shall savor it.

Jac's trend line is much better today

Jac sleeping on his stomach with his CPAP on.

Joseph and I showed up arond 10:30 am to visit Jac today. I had called at 2:30 am and 8:30 am and receieved positive reports for both of Jac's nurses.

When we arrived and took a look at him this morning he looked much better - yesterday he looked kind of gray (I couldn't find the right word to describe his color yesterday and his nurse used that word this morning and I think she is right). Today he looks like he is more back to his Daddy's coloring - and less like his Momma!

Jac had a chest XRay at 10:00 pm last night that showed that his lungs have re-expanded and look better than they did on the 25th when he had to move back from the ICC because of respiratory distress. That is good news as we have been worried about his lungs since that episode. There is some episode of chronic lung disease but that is very common in preemies that have been on mechanical breathing devices like the respirator and the CPAP. The doctor said that this will get better.

His blood gases also look better - his CO2 level and his pH are both trending in the right direction (down for CO2 and up for pH) which are also good signs that his lungs are improving. Mixed up with this is that he received a blood transfusion of 11 ccs last night. This greatly improved his hematocrit - which could also help to account for some of the change in his ability to carry oxygen around and improve his general state.

He also had another belly XRay this morning (following 2 from yesterday - one in the morning and one in the evening). This XRay looked the same as the previous one - which is good - meaning that if he has NEC it is not progressing - and possibly showing that he does not have it - he just has some extra air and possibly stool in his belly.

All night last night and continuing today he has been sleeping on his belly. Little babies have a much easier time breathing when they are on their bellies - it gives them some resistance to breathe against since their abdominal wall is so thin it tends to collapse when they are on their backs or on their sides. His nurse today said his breathe sounds are better when he is on his tummy. He is currently on 23/24 % oxygen on his CPAP.

He is continuing on antibiotics in case he does have an infection although his
C Reactive Protein (CRP) level has decreased from 0.8 to 0.7 (it is supposed to be below 1, which it is, but it had increased from 0.2) which is a hopeful sign that he does not have an infection.

He is also continuing to receive caffeine to to help his lung development.

There are no imminent plans to start feeding him again. Dr. T said on Friday that she did not plan on starting his feeds again until he is off the CPAP (which does not sound like it is going to happen for the next few days - but things change quickly) so we shall see what she says come Monday. Sometimes things change because there are many different doctors on duty and they have different views of things!

Jac pooped today - which Daddy did a nice job of cleaning up. He continues to have meconium poops which are quite sticky. Once he starts eating again he will start to transition to breast milk poops which are yellow and seedy (and apparently much easier to clean up!). He informed us that he had pooped by crying and fussing - Daddy and I fixed him back and up and he went back to sleep.

Jac is going to get to sleep most of the day - just a few tests to do later so we have decided to take the day off from the hospital and get some organization done around the house (as we still have boxes filling the living room and Jac's room) and our couches and chair are showing up on Thursday and we currently have no place to put them.

We need to get Jac's room ready (all we have is a crib so far!). Alexis s going to help me work on this next week (she is coming back on Monday from Detroit after visiting her friend Emily and having a weekend visit with her fiancee, Chris).

6 pm Xrays did not look worse than 11:30 am Xrays

Jac another set of of Xrays at 6 pm. They did not look any worse than the 11:30 am Xrays.

The fellow in the NICU still does not see the pneumatosis that the radiologist thinks he sees - this is very good.

They sent me home (between Joseph, Jac's nurse and the fellow) the convinced me to go home and sleep. I am going to try but I am very worried.

Joseph and I are going to go back to the hospital early tomorrow - they are performing another XRay at 6 am - and hopefully this will show the same thing - no progression - which would be a very good sign!

They are also going to do an XRay os his chest to look at his lung expansion - we are still worried about that - the bottom lobes of his lungds till do not sound great. Depending on the XRay results they may increase the pressure on his CPAP to push open the bottom lobes of his lungs.

I am one scared Momma.

Peripheral IV in, blood going in, XRays done

Progress has been made and Jac and I are exhausted.

The Flight for Life transport nurse got a peripheral IV in to Jac's right hand. I was so hoping he wouldn't have to have that hand used but it was the only good vein she could find.

He has 11 ccs of blood going in over 6 hours - hopefully it will make him feel much better. The nurse is checking his blood pressure every 15 minutes for the first hour or so of the transfusion to make it is fine. The blood is coming from the same unit of blood that they used last week when he needed transfusions.

The XRay tech came and took 2 view XRays of his belly and we should have the results of that soon - I will look for the doctor in a few minutes and talk to her.

There is a lot going on here today and lots of crying babies. The baby next to us is getting ready to go home (she is full term and has only been here a few days) and there has been a ton of activity there. We are in the corner but in an open space in a large room with curtains for walls. We are certainly no where near the ideal environment for Jac and that is definitely adding to the stress level as we work so hard to keep it quiet and dark for Jac. I am glad he is at least in the isolette which does protect him from some of the sound and we cover his isolette whenever we are not messing him (which has not been very often today) to keep the light out.

We just put Jac on his tummy which is a position he really likes. His pulse ox is up and hopefully he can sleep like this for quite a while. He may have another XRay at midnight or they may wait until 6 am depending on the results of his 6 pm XRay.

Jac's nurse today has been really great - I have cried quite a number of times today and she has comforted me while takinf great care of Jac and allowing me to be involved in the process which makes me feel like I am helping. I am going to ask her to sign up as one of his primaries if she wants to. This means that she will be much more likely to be assigned to Jac when she is on duty.

3 attempts at Peripheral IV have failed

Two nurses just tried 3 times to put a Peripheral IV in Jac. They tried 2 times in his right leg (his last peripheral IV was in his left leg) and once in his left hand (which I was really hoping they would not have to use as he has been so happy since his ART line came out and he could move that hand and arm freely and put it up to his face and behind his head and on his ear).

All times they got in the vein and then it blew out. He is so small that putting an IV into his veins is really hard.

They have now asked one of the nurses from the transport team (possibly one of the nurses that helped bring Jac to the DCH) to give it a try.

This is of course breaking my heart. I just called Joseph (who is tied up at home trying to fix a mess that I helped create!) and I am hoping he is going to be able to make it back to the hospital.

Pictures of Jac on flickr.com

We have put up a few more pictures of Jac on flickr.com than we have posted on the blog.

To see them go to http://www.flickr.com/photos/thechius/sets/72157601030336738/

We will continue to post more pictures of Jac as we take them - we have so many but many of them are not good. Jac is in very low light most of the time so a large percentage of the pictures we take don't come out (more of Joseph's come out then mine!).

Jac may have pneumatosis and NEC

We arrived this morning to not such great news.

The doctors are now worried that Jac may have pneumatosis which is often a sign of Necrotizing Enterocolitis (NEC).

They performed 2 sets of Xrays of his tummy this morning to check for pneumatosis and the readiologists think they see it - the fellow in the NICU couldn't see it. She said that pneumatosis can be very hard to see on an Xray and it is a good sign that she can't see it - meaning that it is not really obvious and it is possible that it is not there - or that it is not very severe.

They took blood from Jac to check for any signs of infection and they tried to get a urine sample by putting a catheter in - but that didn't work - 2 nurses tried and neither one could get it in. This whole process made me cry and I had to leave several times. It is so hard to watch my son cry and struggle - I just want to pick him and up and hold him and protect him and I can't and it is the hardest thing.

They have started him on antibiotics in case he does have an infection - they will have preliminary results of the blood culture in 24 hours and 95% accurate results in 48 hours - the final culture is not considered complete for 5 days. The culture will tell us for sure if he does have an infection.

He looks very pale today. The nurse told me a bit ago that his hematocrit is low which means that he needs a transfusion. The doctor told me that this could be the reason that he is so pale and why he doesn't seem to be feeling well - and not a problem in his gut and not an infection. I have everything crossed I can in the hopes that this is the problem.

To give him the transfusion he has to have a peripheral IV (PIV) line put in in his foot again. He had one but it had gone bad last week so they took it out. This means more sticks for poor little Jac today - he has already had enough - but they should be able to do blood draws from that PIV for a while so at least that will save him from all of those heel sticks.

This morning I watched while they took a bunch of blood from his arm and that made me cry also. Augh! I better toughen up before Jac decides he wants to play football in a few years!

They will do Xrays every 6 hours to check the status of the pneumatosis - so the last one was around 11 am so the next one will be around 5 pm. Keep your fingers crossed.

Jac still on CPAP and no milk

Jac has remained on the CPAP all day today. He he has decreased breathe sounds in the bottom lobes of his lungs which is probably an indication that he is continuing to take more shallow breathes and is not expanding his lungs fully. This is sort of like when adults do the same thing - breathing from the top of our chest and not down into our stomach. If his respiratory sounds are better tomorrow they make take him off CPAP and put him back on high flow nasal cannulae.

Last night they stopped his feeds because his stomach had blown up with a lot of air. They did not find much residual food in his stomach and so the feeding intolerance is probably caused by the air pumped into his stomach by the CPAP and not by gut. He had gone up on his feeds a lot - from 1 ml every 3 hours to 2 ml per hour so when they start him again they might try a more conservative 1 ml per hour.

There are no plans to restart his feeds until he is off the CPAP though as Dr. T would prefer to not change two things at once. So they will get him to the high flow nasal cannulae and then if that is fine they will restart the feeds.

Jac swaddled

Jac swaddled

Jac really likes to be swaddled. One of the nurses (the only male nurse in the unit!) swaddled him last week and he really likes it. It helps make his cares easier as he stays calmer when part of him is swaddled and you work on a different part. He is such a little guy that that can be tough!

Jac's feedings have stopped again

Dr. T. just called a few minutes ago and told us that Jac's feedings have stopped again. He had been receiving 2 ml per hour since 11 am and around 9 pm they found that he had too much gas and air in his tummy and they decided to stop his feedings until tomorrow.

They took an X-Ray of his belly to make sure there was nothing else going on - and just saw air - so they are not too worried. The CPAP can cause this or just too much food too quickly.

Tomorrow they will restart the continuous feeds and probably lower the rate of milk per hour and see if he tolerates it again.

Dr. T had explained to me very early on that this process of starting and stopping feeds and varying the amounts is very common in preemies and that at some point he will probably just turn a corner and start tolerating all of his feeds and then we make progress towards the 80 ml per day goal for his current weight, which is still hovering around his birth weight of 689 grams.

Jac is staying on CPAP and in the NICU for tonight

I am exhausted so I am going to keep this short and sweet.

The doctors and I have agreed that Jac will stay on the CPAP and in the NICU for tonight. If anything changes they will call me but there is no expectation that anything will change overnight.

Jac is now on a continuous feed every of 2 ml per hour. After his first four hours of continuos feed his aspirate was very tiny - meaning he was tolerating the food well. The next check will be at 6:00 pm or so - if I am awake I will call and check on how that went but I hope it will.

Starting continuous drip feedings of breast milk

The doctors are going to start Jac on continuous drip feedings of breast milk this morning. The drip will be 2 ml per hour - so 48 ml per day. They will check his aspirate (his tummy contents) every 4 hours, when they change the milk in the pump, to see if he is tolerating the feedings, and moving the milk out of his tummy.

Dr. T think it is important to start the continuous feeds and to increase the volume of milk he is getting because the blood tests from this morning show that his liver function is starting to be impacted by the continuous TPN feedings be has been receiving. She said they will change the composition of his TPN a bit to decrease the impact on his liver and hope that he tolerates the feeding so they can start to wean the TPN. She said full feedings for a little guy of his size is around 80 ml / day so approximately 3.5 ml / hour - and they are going to start him at 2 ml / hour and see how he does.

I asked her if it made sense to start this before we get him off the CPAP, which is putting air in his belly, and potentially making it harder for him to digest. She said that it does because the air does not necessarily make it more difficult for him to digest, and that it is really important to get started and wean his TPN because preemies his age frequently show liver problems around his age (16 days) if they stay on TPN.

The origin of Jac's name

It occurred to me as I am sitting here very sleep deprived waiting for a doctor to come talk to me about Jac's feedings and it occurred to me that we have not explained the origin of Jac's name.

Joseph - his Dad's name
Alexis - my sister's name and a family name that goes back to Jac's great great Uncle - Adolph Alexis Johnson (born 1882).
Chiu - I will let you figure that one out for yourself ;)

aka Jac - in addition to the above family names we are also calling him Jac in honor of his great grandfather, Cavanagh, my mother's father whose first name was Jack.


We are also carrying on a family tradition started by my parents of naming their child in such a way that their initials are a name - as my name - Tiffany Alicia Johnson (Taj) is and now Jac is.

The plan going forward (for now)

I just spoke with Jac's doctor and we are formulating a plan for getting him back to where he was 18 hours ago and then staying there for a while.

Currently he is in the NICU on a CPAP which is is several steps back from where we were yesterday. What precipitated the crisis was the move off of the high flow nasal cannulae to low flow and the removal of the study gas all at the same time.

So the plan is to put him back on the study gas (which may be NO2 which may be helping him) attached to his CPAP. Then wait for a few hours and make sure he continues to be stable. If he stays stable then we will move him back to the high flow nasal cannulae with the study gas attached and watch him there. If he stays stable there then we wil move him back to the ICC and then start praying. I don't believe in god but I will find something to pray to. After that we would leave him on the high flow nasal cannulae for at least a week, maybe longer, and allow him to use his energy to grow and eat rather than having to work so hard to breathe. Then at some point in the future we would try the low flow nasal cannulae again (this time more prepared for failure I hope).

The timing of all each of these changes is negotiable. The doctor has assured me that if I am not comfortable with what they are proposing that we will work together to find a happy medium we can agree on. This makes me feel much better as I hope that I am the best advocate for our son. He is so little and fragile I want to protect him - and I want to help him get better and grow - and I know the doctors want the same thing but it feels like they are a little more cavalier than I would like them to be. But, as the doctor pointed out, if we had not moved him to low flow we would not have known that he could not tolerate it. All of the signs from his breathing (at least in the doctors opinion) pointed to him being able to tolerate - although my instincts told me he could not.

The CPAP is great in that it allows him to do less work to breathe but it has the downside that it fills his tummy with air which makes it harder for him to process the food we are putting into his tummy with gavage feedings (directly into his tummy). Because of this the doctor feels some urgency to get him back to the high flow nasal cannulae which does not have that effect. I am more hesitant to take him off the CPAP after the last 18 hours which I know have tired him - his little body does not have any reserves and he was really struggling. The doctor and I have agreed to wait until this afternoon and then reevaluate how he is doing. He agrees with me that it is important to let Jac conserve his energy and recover from the last 18 hours. So - we will see what happens this afternoon.

He is going to go back on the study gas fairly soon - but that should not wake him up or upset him as it is a very small amount of gas added to his CPAP.

He is back on 21% oxygen on his CPAP so it is providing pressure to help him breathe but no additional oxygen beyond room air.

Recovery from last nights events

I slept for about 2 hours in a chair by his bed - it is now 5:45 am.

The first time they rechecked Jac's blood gases around 2:00 am his sodium bicarbonate level was low and his pH was still low. The NP explained to me that this was in response his respiratory distress from last night.

When he is in respiratory distress his kidneys will hold onto sodium bicarbonate in an effort to buffer the his lowered pH due to a rise in the CO2 levels and decrease in the oxygen levels in his blood. When the distress has passed he no longer needed the extra sodium bicarbonate his body dumped it out into his urine - and dumped too much so we needed to help him recover from that overcompensation.

At 2:30 am they gave him a dose of sodium bicarbonate which ran for 30 minutes into his PICC line. Then at 5:22 am they retested his blood gases and they are all in a normal range including his pH and sodium bicarbonate level. This means that for the most part he has recovered from his respiratory distress (at least from a medical standpoint).

At 5:30 am they were drawing a lot more blood to test a bunch of different things including his electrolyte levels, triglyceride levels and his phosphorous level. These labs will take a few hours to come back.

To get his blood they prick his heel and basically milk his foot and leg. I finally had to stop watching after 20 minutes of this. Fortunately Jac did not seem to mind to much - his heart rate stayed right around 140 - 145 and he seemed to sleep through it for the most part. I think it helped that the top half of him was swaddled. One of the nurses and I discovered that he does much better with cares and procedure when the part of him that is not being messed with remains swaddled.

Jac continues to tolerate his 1 ml every 3 hours milk - when the nurses check for milk in his tummy each time before they feed him again they don't find any. Amazingly he continued to tolerate the milk all the way through last night even with everything that happened.

Jac is now sleeping. His next cares are at 8 am so Jac and I are going to try to sleep until then - but shift change is at 7 am and it gets louds in here when that happens - hopefully Jac will be able to sleep through it - he has a much better chance in his double walled isolette than I do in my chair!

No eating at the bedside

Here I am worried out of mind - I have barely eaten since lunch - and I don't want to leave Jac - and I am not allowed to eat my McD cheeseburger which is hours and hours old at his bedside - the nurses eat in here but I am now allowed to.

The nurse was nice when she told me this but still. *Tear*

Still getting 1 ml of milk every 3 hours

In spite of all of the other setbacks we have had this evening Jac pooped and he is continuing his 1 ml of mill every 3 hours! At least this is something to hang on to!

Blood gas recheck

The nurse is now drawing some more blood to recheck his blood gases to check that the CPAP is having the desired effect of improving his blood gas levels.

To draw blood from a vein and to make it resemble a arterial draw they warm his foot up and then stick his foot and then draw the blood into a very small tube.

Sometimes they can get a previous stick to reopen by heating his foot and then pressing on it. This time that did not work and the nurse had to prick his foot again.

All of this is breakig his Mom's heart.

Ugh. A bad day today.

Jac had a setback today.

The doctor in charge of the ICC had taken Jac off the high-flow canulae and put him on a low-flow canulae. Taj protested to him that Jac needed the high-flow canulae because he needed the breathing assistance created by the higher air pressure of the high-flow. Despite her protests, Jac ended up with the low-flow canulae early this evening.

Some time after that, Jac's breathing became erratic and he desaturated several times. As Taj described it, his SpO2 would drift down for a bit and then plummet. He apparently needed to be vent-bagged a few times. The night nurse (one of the ones we really like at DCH) eventually realized that Jac was congested and suctioned him clear -- that helped, but his breathing was still labored.

The nurse practitioner ordered an X-ray and blood gas to see what was going on. Based on the radiology, she determined that Jac's lung had 'shrunk' and that he needed to be back on the CPAP. In order to get him on the CPAP, and to also get him more constant monitoring, she also determined that Jac needed to go back to the NICU.

So, at about 10 pm (I think??), we migrated Jac out of the ICC and back to the NICU, where he was given a CPAP mask setup. It seemed like the respiratory care tech (not a RRT??) fumbled a lot putting the mask on, and the end result didn't look as neatly attached as the setup that he had before. Taj will ask the RT on duty tomorrow to re-do his mask.

We also discovered a couple of noisy leaks on the CPAP exhaust line. We had discovered this exact problem on Jac's first CPAP setup last week. We taped the leak shut because we are worried that the loud hiss would be hard on Jac's ears and nerves.

The respiratory care tech opened up two more CPAP kits, and they also had various leaks in the exhaust tube. That's a total of four (one from last week, and three tonight) kits that had these noisy leaks! Clearly a problem with the batch. The respiratory tech told us that she would check into the matter... I may be doing my own calling around!

Alexis and I returned to Boulder. Taj decided that she couldn't leave the hospital tonight, so she is camped out in the NICU. I hope she gets decent rest tonight. It was a very tough night for Jac, and a very tough night for Taj. In some ways, I am more worried about Taj -- when Jac grows up, he won't remember any of the drama that he went through...

Jac moves back to the NICU and goes back on CPAP

Tonight Jac moved back to the NICU. The day before he had moved from the NICU to the ICC.

The reason for the move is that he was having some trouble breathing. This was caused by a reduction in the expansion of his lungs that in all likelihood had been slowly happening since he was taken off of the CPAP and put on the high flow nasal cannulae which happened on 7/21. With the high flow nasal cannulae he has to work harder to breathe - and he is such a little guy that he is not able to do all of the work necessary to fully expand his lungs.

Tonight we had a bit of a crisis. It all started when an RT (Respiratory Therapist) from the NO2 study that he has been on came to remove the high flow nasal cannulae that he has been on. She removed it because he had come to the end of the study (he had been on the gas mixture - which could either be just oxygen or could be a mixture of oxygen and a tiny bit of NO2). His doctor in the ICC said that he might not need any respiratory support but that if he did he should be put on a low flow nasal cannulae.

I did not agree with the doctors assessment as it has been clear for quite a while that Jack does not need much oxygen (his oxygen level on the respirator, the CPAP and the high flow nasal cannulae has been 21% which is the same as room air) but that he needs the pressure into his lungs that the respirator, the CPAP and the high flow nasal cannulae all provide - but which the low flow nasal cannulae does not. I told the doctor that his respiration rate increases when he had the high flow nasal cannulae off - as he works harder to breathe. This did not change his decision. Augh!

After Jac had been on the low flow nasal cannulaea for a little while his SpO2 went to 100% (it is supposed to be between 83 and 93% as higher levels are bad for his still developing eyes). The nurses had to turn the low flow off to allow his SpO2 to drop - or on a tiny flow - again this is not providing him any breathing assistance - just oxygen - which he does not need.

Shortly thereafter he went into respiratory distress. His heart rate (HR) dropped to 60 (it is normally 150 and above) his SpO2 dropped to 60 (again - it should be between 83 and 93). With some assistance from his nurse and after being bagged with 100% oxygen his HR and SpO2 came back up - and then back down - and then back up - as his nurse tried to help him. These were some of the scariest moments I have so far experienced in my life.

I pushed to get him back on the high flow cannulae and the nurse called people to make that happen - they had to get it from the NICU which is a very long hallway away - so as Jac and I sweated it out together - him struggling to breathe and me watching him struggle they finally got the high flow nasal cannulae setup (this seemed like it took an hour but it was probably more like 7 minutes).

His nurse put that on him and then suctioned out his mouth and nose (he had a lot of boogers) and he started doing much better but I knew things were not all better. His nurse then called the Nurse Practioner (NP) (a nurse with more training that can write orders and prescriptions) and asked her for her opinion. She ordered a chest X-Ray and a blood oxygenation level.

His nurse drew blood from his tiny little foot and the XRay tech came and took an XRay. 5 minutes later we had the results of the XRay and of the blood oxygenation level which showed that his lungs were not expanding enough and that his blood levels from for gasses were not great. The NP concluded that he needed to go back on CPAP and move back to the NICU where he could be monitored more closely again.

She also told us that with the lung issues that it was possible that he could have an infection in his lungs (pneumonia) which could be exacerbating/causing this problem so she ordered two more blood tests - a CBC and a CBR - both of which look for infection. The results of both of those tests came back negative meaning he does not have any signs of infection which is very reassuring.

I am staying at the hospital tonight - after all of the excitement of this evening I cannot stand to leave Jac so I am going to sleep by his bedside - or at least try to sleep. I hope he is fine now that he is back on CPAP and that he wil be able to rest and recover from this evening - the look on his little face when he was in respiratory distress is something I will not soon forget - he was struggling so hard to breathe - and I think it must have felt like drowning to him - it was just a terrible thing for a mother to watch her chil experience. I know I am going to have to have a good cry over this - out of Jac's earshot and once I know he is stable again.



Jac after having his blood drawn from his left foot for the blood gas.



Jac's chest X-Ray.

Continuing medical concerns

When you spend a lot of time in a NICU you see a lot of very sick babies. There are both babies that have just been born and need a ton of very special care and babies that are growing up in the NICU because they have medical problems that prevent them from going home. We feel for the babies and the families and someimes I even feel guilty for having a baby that is doing so well!

Jac does have some ongoing medical issues that are have not yet been resolved. The one that concerns me the most (although the doctors don't seem too concerned) are his electrolyte levels.

When Jac was admitted to TCH his phosphorous level was so low it was unmeasurable. Since then with supplementation his phosphorous level came up to an acceptable level. Unfortunately since he reached that level and the level of supplementation has been decreased his phosphorous level has drifted back downwards. Today they gave him a bolus of sodium phosphate to bring his level back up.

This then begs the question - where is the phosphorous going? They collected some urine this afternoon to see if he is excreting it in his urine. If he is we need to talk to the Renal doctors to figure out if there are problems with his kidneys (he has had an ultrasound of his kidneys and they look good - but this is not a guarantee of their function). If he is not excreting it out in his urine then we need to talk to the Endocrinologists to figure out what is funky in his metabolism that he is losing phosphorous.

The "phosphorous question" has been an open one since he was born and it continues to be an open question and one that needs to get resolved.

Other than that he is doing really well.

Since yesterday at 1:30 pm he has been receiving trophic (non-nutrition) feeds of 1 ml of my milk every hour and he has been tolerating it (meaning when they check his stomach contents before the next feed it no longer contains milk from the previous feed. This is a great sign and if he continues this way they will start increasing his feeds and start counting them towards his nutrition.

He is also doing really well from a respiratory standpoint. He is on the nasal cannulae and his respiration rate and blood oxygenation levels are in a good range most of the time. When he gets agitated (almost always when the nurse or Mom or Dad are performing cares (diaper etc.) sometimes he has a bit of a desaturation and/or a elevated respiratory rate. Once we finish the cares and get him tucked back in and cosy all of his stats settle back down and he goes back to sleep happy as a little lamb.

Happy 2 week birthday Jac

Jac was born two weeks ago! So much progress for such a little guy!

He has not gained weight yet but we have confidence that is coming soon - as soon as he gets a little more of Momma's milk!

I am sure we will soon have daily weight updates! Right now he is hovering around his birth weight of 689 grams - the good news he has not lost weight!

Jac moves from the NICU to the ICC

Jac moved from the NICU (Neonatal Intensive Care Unit) to the ICC (Infant Care Unit) in a private room at 3:15 pm this afternoon.



The nurses preparing to move Jac from his spot in the NICU.



Arriving at his new location in the ICC in his private room.

The doctors had originally told me that Jac would not be ready to move from the NICU to the ICC for several more weeks but after discussing his case last night they decided that he would be much better off in a private room in the ICC rather than the open space he has been in since last Tuesday in the NICU.

There is a great deal of research that shows that the environment that preemies live in after birth needs to simulate as closely as possible the environment that they still should be in - in Mom's uterus. This means that is should be as quiet and as dark as possible. This is very difficult to accomplish in the open space of a NICU where there is a great deal of activity that generates noise and the lights need to be quite bright for the nurses to work in.

We are very excited that he has been moved into a private room that we can keep dark and quiet by keeping the lights off or low and closing the door to his room. The alarm for his sensors sounds outside so the room so his nurse is alerted to any problems. Nurses in the ICC are assigned 3 babies rather than the 2 babies that nurses are assigned in the NICU.

Nurses are able to elect which babies they would like to be primaries for (meaning they are assigned to that baby first when they are on) and several nurses that we really like have elected Jac as their primary. One nurse that we are particularly excited to have as his primary (if that works out) has some advanced training in development of preemies. We had a chance to talk with her the other night and she is a font of knowledge! We are really looking forward to having her as Jac's nurse so we can pick her brain! There is so much to learn about what Jac is telling us and what he needs!

Jac makes faces while being fed

I gave Jac 1 ml of my milk through his OG line this evening at 5 pm. I decided to take a video of him through the open portal of his isolette because he was making such cute faces!

Mommy does Kangaroo care for the 2nd time

I got to do Kangaroo care again tonight! It was fantastic!

We woke Jac up very slowly before we moved him, I got prepared, and then he was on my chest. He is so small that I can feel every little movement he makes. I noticed that he responded to the baby next door crying - whenever he would cry Jac would kick his leg a little bit. The alarm of the baby next door went off every few minutes and he reacted a bit to this but the baby crying was a stronger reaction. He also seemed very content to have his left hand right next to his mouth.

We fed him while he was on top of me - he is currently getting 1 ml of milk every 3 hours. This does not count toward his nutrition as it is such a small amount. They are feeding him this tiny amount to prepare his gut for more - they start very slowly to make sure he can handle the food and that his stomach and intestines are processing it. He has been on 1 ml every 3 hours since 1:30 pm and he is tolerating it so far. The milk is going into his OG tube which is a tube that runs down into his stomach though his mouth - he is not yet ready to swallow or suck.

We used a portable warmer to keep him warm on top of me - although today a lactation consultant explained to me that there are studies that show that my body will warm up to keep Jac warm or cool down if he is too warm by up to 2 degress celsius! The amazing things a Mom's body does for their baby!

Jac and I hung out together for about 70 minutes. At about 60 minutes he was dreaming so we waited for him to stop dreaming and then very slowly woke him up - just enough that when we moved him he wouldn't get too upset. Then we moved him back into his isolette and that went well and he settled back in and went back to sleep.

Daddy does Kangaroo care - again!

Daddy is doing Kangaroo care with Jac right now! They look so peaceful and happy together I can hardly stand it! They have been together since about 5:30 pm and they are both loving it. Joseph looks like he is going to fall asleep and Jac is fast asleep with his hand very close to his mouth.

Jac got his Art line out this morning after his labs were run. This line was in his left arm. Now that the line is out he can get his hand in his mouth! When the line was in he had cotton in his hand so he couldn't get his hand very close to his mouth. When I first saw that he had his line out this afternoon I did a little dance - he looked so happy with his hand in his mouth! We have an ultrasound picture from when he was in utero and he had his thumb in his mouth!

I recorded a movie of Daddy and Jac together!

Some medical updates

When we visited Jac today, we learned that his Art line had been removed from his left arm in hte morning. When we peeked into the isolette, we found him with his hand in his mouth, happily asleep.

With the Art line gone, and the corresponding removal of the 1ml/hr Heparin flush, Jac was getting 4 ml/hr of TPN -- more food to fuel his growth. A later glucose check, however, showed a high glucose level (around 210, when it should be between 40 and 80). The next TPN bag will have a lower dextrose level and should bring his glucose closer to where it should be.

Jac was also getting 1ml of milk per every 3 hours, but when the nurse checked him in the late morning, she extracted 2 ml of undigested milk in his stomach. There were also signs that he had plenty of air in his tummy. Because of this, they stopped the milk feeding for now.

A nice and cozy snooze!

One of the things that we quickly discpvered about Jac is that he doesn't stay tucked in his "snuggly". While most babies usually stay tucked in, Jac has a tendency to move his arms and legs until they are in an untucked position. We often find him with his arms and feet hanging out. He's developed a bit of a reputation for that... During the first week, new nurses would comment that he wouldn't stay tucked in.


The nurse tonight swaddled him (wrapped fully in a blanket) just before we left.

Taj just called Jac's nurse to see how Jac's doing -- he apparently has slept comfortably in the swaddle all night. (I'll try to get a picture of that; I apparently didn't take one tonight.) He apparently slept so well tonight that he didn't wake up during one of the care sessions.

Done with the CPAP. Another milestone!

Another bit of good news today... At the rounds, the doctors felt that Jac was showing good respiratory progress and was generally looking pretty stable. They decided that he was ready to go off the CPAP mask and go to a nasal cannulae.

The cannulae is a big relief to us -- there is now just a lightweight loop around his face, and he no longer has stuff taped or strapped to his head. The cannulae is also extremely quiet.

Jac gave his mom a little scare shortly after going on the cannulae -- after a crying bout, he temporarily stopped breathing and his oxygen desaturated a bit. (SpO2 reading dropped to 70) One of the nurses came in and gave his chest a little rub to stimulate his breathing, and temporarily raised his oxygen level to quickly get his oxygen level up.

The nurse assured us that this is a normal thing in preemies - especially after they have a crying bout - they forget to breathe and need to be reminded. This is one of the reasons that he has been on boluses of caffeine - as it is a central nervous system stimulant that encourages his system to breathe.


Except for that incident, he seemed perfectly happy and calm getting rid of the CPAP (and the ventilator before that) and when Taj called in to check on Jac later in the evening, his nurse assured us that his breathing had been fine all evening and his SpO2 had been stable all evening.


With his mask gone, and his peripheral vein catheter (which was used for transfusions) also gone, he's looking a lot "lighter" in the isolette, and his bay is looking a lot less crowded, too!

Shift change

At each shift change, the departing nurse and the incoming nurse get together and discuss Jac's history and review the plans for the next 24 hours. It's a treat for us when we can "eavesdrop" on these sessions, as we get a refresh on Jac's status. Tonight was the first time that Taj was around for rounds as she doesn't usually arrive at the hospital by 10 am when they usually do the rounds on weekdays. On weekends they do the rounds later in the day which is why we were there for them today.

More milk!

When we went to DCH today, the nurse reported that he was able to successfully poop, and that his digestive tract appeared to be working fine. There had been some concerns during the last couple days that he essentially was constipated.

That his digestive tract is working is a good sign. He also has had a few more test milk feedings since yesterday. Taj did one this afternoon, giving Jac 1 ml through the OG line (a tube that goes in via Jac's mouth to the stomach). He has been on 1 ml every 6 hours.

During the Saturday evening rounds, the doctors ordered increasing his feeding to 1 ml every 3 hours. If he handles that well, they will start ramping up the amount of milk at each feeding and start counting the milk toward his nutritional intake. As his milk intake goes up, they'll correspondingly reduce the TPN nutrition coming in via the IV, with goal of getting him fully on milk so that he won't need any IV's.


Right after feeding, we put a little bit of milk on a cotton swab and let Jac taste the milk. When presented with the milk-soaked swab, he sucked on it. We hope he's learning the association between milk in his mouth and a happy tummy!

Whoa - tired!

I thought Taj and I have figured out the routine for going to see Jac in Denver and then handle household and work routines in Boulder... But just as I think we've got the rhythm down, the "routine" changes (for the good this time -- I got to Kangaroo him last night), breaking our rhythm.

We left the hospital last night around 11:30pm, stopped at a pretty bad diner because we were hungry, and then made it back home around 1 am. We took care of dogs and did a few other household tasks (including making the bed), and we finally made it to bed at 3.

Taj was OUT last night. She didn't make it up until about 10:15 this morning. And she's now back to sleep again. I'm going back to bed as soon as I hit the Publish Post button...

(actually posted by Joseph)

Noisy CPAP hose

While doing Kangaroo Care with Jac, I noticed that the CPAP line was very hissy. Thinking that the noise was coming from the end of the exhalation hose, I just tried covering Jac's head with my hand so less of the noise would reach his ears.

While I was moving my hand around, I noticed that the hiss was actually coming from right above his head -- there was a leak in his exhalation tube! With help from the respiratory tech and Taj, we actually tracked down two leaks and sealed them up with tape.

Getting rid of the two leaks made a huge difference in the noise level. I am glad that we caught that, because the hiss was very annoying to me, and I'm sure was even more difficult for Jac's sensitive ears and his nerves.

In retrospect, Taj realized that Jac probably had not slept well most of the day, and it's likely that the noise contributed to his discomfort.

Daddy doing Kangaroo care

Even as I write this Daddy is doing Kangaroo care. This means that he has Jac against his chest, skin to skin, to keep Jac nice and warm. Jac is also covered with a blanket and Daddy has his hand covering him.

Kangaroo care can be a little tough to accomplish with all of the paraphanelia that Jac has attached to him. To get him out of his isolette you have to bring all of his cords with him and get them all settled again once you have moved him. Also, becuase Jac is so small he has no ability to support himself so it is up to us to support all of him in the correct position as we move him.

The other challenge is that now that Jac is in the main NICU ward he is in a much noisier environment. There is research showing that preemies are greatly benefited by being in a very quiet, very dark environment and this is not being accomplished right now. This is definitely causing me some stress and I continue to hope that he will make it back to being in a private room. Fortunately, when we get him back to the Boulder Community Hospital (BCH) he will be in a private, very quiet room - attached to a room and that Joseph and I can stay in. The rooms at BCH are like hotel rooms.

We also had a little problem with the outlet line from Jac's CPAP - it had at least 2 holes in it! I was able to find both of them and we got some good tape and closed them. The respiratory therapist will change his line out later tonight for a good one.

Jac got his second feeding!

Jac got fed milk for the second time in his young life at 8 am this morning. He got 1 ml of my milk. The last time he was fed (earlier this week) he threw up 6 hours after he had received 2 ml of my milk. We have our fingers crossed that he does better this time.

If Jac holds down the milk from this morning, they will continue to feed him 1 ml every 6 hours and then reevaluate how he is doing.

Jac was extubated at 10 am

Jac was extubated at 10 am this morning! Yeah! The extubation went well, although Jac was not very happy about all of the messing around with him.

Two respiratory therapists removed from his mouth the line that was connected to the respirator and went down to his lungs. After removing that, they tried to use a nasal prong to connect him to a CPAP machine - but, the prongs were too big for his little nose. They then got a little tiny mask and that fit just perfectly. They then put a head strap on his head to hold the mask in place. He now looks like he is SCUBA diving.

Here, the RRT (Registered Respiratory Technician) is preparing the CPAP equipment:

Here's Jac after he was extubated, before getting the mask..

Here, the RRT is fitting Jac's mask...

And here he is, wearing the mask...

Jac is ready to extubate

Good news! This morning's lab came back and Jac's phosphate level has climbed up to 4.4, and he had a really good night's rest. The Dr. M and Dr. T both decided that he is ready and ordered his extubation.
The RRT (Respiratory tech) is going to put in a nasal prong (softs prong that go into the nose).

Jac's new isolette cover

Preemies are very sensitive to noise and light. When I was doing Kangaroo care with Jac I could feel his body react to even the smallest sounds. At the time he was in his own private room - so a lot of the noise of the ward was kept out - but he is now in the main ward - and it is pretty noisy. Today the mom of the baby next to Jac was talking on her cell phone and she was quite loud. I really wanted to protect Jac and ask her to be quiet!

In an attempt to protect Jac from some of the noise and light we found a new cover for his isolette which does a better job of protecting him from the light although I don't know what its effect on the sound is.

The picture on the left is his old cover and the one on the right is his new cover.

Progress with Electrolytes, PDA and possible feeding and extubation

Jac has been having problems with his phosphorous level. When they first measured it last week it was off the chart - it was less than 0.5 which is unmeasurable. None of the doctors had ever seen a level that low - including the endocrinologist. Since then they have been testing his phosphorous level every 12 - 24 hours and pushing potassium phosphate (his salt levels were also now so adding the potassium to the phosphorous makes sense - phosphorous cannot be given alone) pretty much continuously. For a while his phosphorous level would not budge while his calcium level was coming down. The doctors found this very mysterious but last night his phosphorous started moving up and as of 8 am this morning it had made it all the way to 3.3. They would like it to be at 4.4 - 4.7. As of 8 pm tonight it had made it to 4.2 - almost there.

Jac's phosphorous level is an indication of the health of his kidneys - and if he can maintain his phosphorous level on his own it will be a great sign. He is receiving another bolus of potassium phosphate tonight and his level will be measured again tomorrow morning at 6 am. If it has reached the target level - they will extubate him! This is very exciting as it means he will off of the respirator and will move back to the CPAP which is progress toward Jac being able to breath fully on his own!

The other thing that the doctors are hoping to do after his phosphorous level reaches its target is to try feeding him again. They will start with just a few drops of my milk (probably fresh from Mom) and see how his gut reacts to it. If he is able to hold that down they will continue upping the amount very slowly.

Both the possible feeding and the extubation would be great signs of Jac's progressing health.

We got another piece of good news tonight. They did an echocardiogram of his heart today (we all thought it was being done on Friday) and the PDA has closed quite a bit. It started out Large (on Monday) (they classify them as Large, Medium and Small) and it has progressed to being Small (Thursday). This means that the PDA is closing down on its own and will in all likelihood not need any intervention to finish closing. It also means that it is not causing any problems with the blood flow to his lungs or to the rest of his body (including his gut) which has been the concern when he threw up my milk a few days ago.

Tomorrow morning at 6 am will they will run labs on his electrolyte levels and if his phosphorous and calcium levels look good they will in all likelohood extubate him. Joseph and I are going to be at the hospital in time for that in the hopes that we can be there when they do it - and then really hope that they don't have to re-intubate him later - that he is now strong enough to breath on his own.

The really good thing about his extubation is that it should mean that very soon we will get to do Kangaroo care with him (only I have done it - and only for about 90 minutes) frequently. This will be very good for him and very good for Joseph and me.

Two diaper changes in an hour

I took the regional bus that from Boulder to Denver and used that time to read up on some paperwork and articles that could apply to Jac. It was nice not to battle rush hour traffic given how tired I was this evening.

I made it to DCH tonight around 7:30 pm, and one of my first tasks tonight was to give Jac his evening diaper change.

About an hour later, Jac was crying and setting off the alarms (erratic/high respiratory rate, SpO2 desaturation, and high pulse rate) -- I checked his diaper and found that he needed another diaper change... He managed to pee a lot, and even had a little bit of poop which you see me wiping off:



I still don't have the magic touch. It breaks my heart to see him squirm around in discomfort as I change him. But, afterwards, I get the satisfaction of seeing him calm down and go back to a comfortable sleep as I put my hands on his head and his belly.

Care time

As long as he is doing well, the doctors and nurses generally want to leave him alone to let him focus on his main priority: to sleep and grow. To minimize disturbing him, the nurses normally cluster his tests and care (diaper change, repositioning and testing of sensors and lines, blood draws) to occur all at the same time.

This evening, Jac's nurse turned him over (he was belly-down during the afternoon), cleared his stomach and flushed the OG line, flushed his Art and PICC lines, and check on his peripheral vein catheter, calibrated the arterial blood pressure sensor against a cuff blood pressure sensor, took his body temperature(*), changed his diaper(*), weighed him(*), cleaned the drool off his mouth, readjusted the SpO2 sensor, suctioned his ventilator tube, administered various meds and fluids, listened to his lungs and stomach, and returned him belly-side-down(**) (which apparently was his most comfortable position today).

(*) I helped with some of the tasks.
(**) I was warned on the very first day that sometimes the doctors and nurses will put the baby face-side-down -- which is safe in the NICU, but should be avoided outside when he doesn't have around-the-clock care and monitoring.

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Wacky Electrolyte Levels

Jac had a fairly quiet day today. He had a morning visit from Dad and an evening visit from Mom. During his morning visit with Dad he started crying for no apparent reason but with Dad's calming touch he calmed back down and was fast asleep by the time Dad left. During my visit he started crying also - this time an astute nurse pointed out that perhaps he needed to have his diaper changed and man was she ever right. Once his diaper was changed (which I did with Auntie Alexis' assistance) and I had my hands on him for a bit he calmed right down and went back to sleep. This is a lesson in the fact that a preemie infant has the same most basic needs as a term infant to sleep, to be burped (well not yet on that one!), to eat and to have their diaper changed. This was a good lesson in the fact that what is upsetting him can be very simple and easy to resolve.

Now that he has his PICC line installed blood draws are not a major ordeal and the PIC line is holding so far. This line can be difficult to maintain as it is very small - his arm is strapped to a piece of cotton to keep it stable. Since he got his PIC line we have not been able to have any Skin-to-Skin time but hopefully that will come soon.

Joseph asked Dr. T about the effect of Jac's PDA on his ability to eat Momma's milk (through his feeding tube) because there had been a thought that the PDA was the reason that he had thrown up the milk. Dr. T says that he has a large PDA but that it is not casuing him a lot of problems - and is probably not related to why he did not hold down the food - the more likely explanation is that his wacky electrolyte levels are more related.

Jac's biggest challenge right now is his electrolyte levels. Electrolytes are part of the system in our blood that includes calcium and phosphorous. Jac's calcium level had been quite high but has now come down (it was 15 and is now 10) - but his phosphorous levels have remained very low. They have been giving him infusions of phosphorous since Monday but the phosphorous levels in his blood have not come up at all. They are also testing the phosphorous levels in his urine and they are quite high - showing that his body is not holding on to the phosphorous, but rather excreting it in his urine. Dr. T explained that having a low phosphorous level makes you very weak - it is like running a marathon and losing a bunch of electrolytes in the process and then not being able to replace them.

The balance of electrolytes in his blood is maintained by his kidneys and specifically by the nephrons in his kidneys. There is some very recent research showing that IUGR babies have fewer nephrons in their kidneys - and that they may have kidney problems later because of this. This has been shown quite clearly in animals but the studies in infants is still very new. The endocrinologists have gotten involved because of this problem. Dr. T is continuing to monitor his electrolyte levels and they are also going to perform an ultrasound of his kidneys to get a baseline of their size and appearance. It is possible that his kidney function is impaired because of his IUGR and this is why his kidneys are behaving this way. Dr. T says that this is all very cutting-edge, doctors are just starting to think about this and that Jac may make a good case study as they try to sort out what is going on with his electrolyte levels.

Dr. T has expressed the opinion that Jac's long-term outlook is very good for developing like a normal child - although she can't tell us how tall he will end up being. She said that he is going to be a challenging case and that he will throw us lots of curve balls along the way but that she thinks his long term prospects are very good.

Jac is still on the respirator - Dr. T would love to get him off it but she is waiting for his phosphorous level to sort itself out before seeing how he does off of it. He is getting very minimal support from the respirator - he is frequently at 21 - 23 % oxygen level, 21 % is room air.

He got a shot of caffeine today - the caffeine is supposed to help his lungs develop and improve the outcome when he does get off his respirator.

Somes comes to Boulder

Those of you that have known my sister Alexis and me since we were kids will know that we have always loved Snoopy. We were given our first Snoopys when we were very little and we have loved them ever since. Alexis and I have been sharing a Snoopy for many years now. His name is Somes and Alexis has had posession of him for many years as his safety was questioned in the presence of my dogs and cats.

Well - Somes has come to town to help little Jac and his Mom!

Patent Ductus Arteriosus (PDA) and why little Jac is not getting Mom's milk yet

Little Jac has a small shunt in his heart known as Patent Duct Arteriosus (PDA).

This is not uncommon in a baby of his gestational age and is actually not uncommon in term newborns.

The doctor's performed an ultrasound of his heart on 7/16/07 and found the PDA - and it is fairly large - but it is not causing him a whole lot of problems - except that it is probably the reason that he threw Mom's milk up a few days ago.

Because of the PDA his gut (stomach) is probably not getting enough blood flow to allow him to process Mom's milk through his gut.

The doctor's will perform another ultrasound of his heart on Friday to see if the PDA has started to resolve itself. If it has they may try to feed him again. If it has not they may start some therapy to help the hole close (the therapy involves ibuprofen) or they may continue to watch it and see if it closes on its own.

The doctors are very keen to get Jac eating Mom's milk but they are being very careful to make sure that his system is ready for it.

More and more blood tests!

Jac has been having been having a lot of blood tests lately. He has only about 65 ml of blood in his whole body, and each blood draw takes several ml's of blood -- a significant percentage of his total blood. These tests have been depleting his blood faster than he could replenish it on his own, so he had to have another RBC transfusion yesterday.

Part of the reason for the many repeated blood tests is that his calcium and phosphorous levels are out of whack. Too much calcium and not enough phosphorous. They have been giving him electrolytes to help him balance this. They will know in a few days whether the problems resolves on its own, or if further investigation is needed. The current thinking is that the placental insufficiency had thrown Jac's metabolism out of kilter, and that he just needs enough time to adjust to the new levels of available nutrients.

Another bit of bad news is that he has not tolerated food in his stomach yet. They will retry in a few days after giving his stomach an opportunity to develop a little more. In the meanwhile, they will adjust his dextrose and TPN ("parental nutrition") levels based on his blood readings.

Jac moved our of NICU room 2 to bay 6

When I arrived at the NICU today, one of the nurses told me that they had to bump Jac out of room 2 and move him to bay 6. On one hand, it was a bummer because the room was really nice; but this also means that Jac is doing much better than the incoming baby that he was bumped for. I hope the best for the new NICU baby...



Here's Jac this afternoon, still in room 2...



Here's Jac in his new location -- bay 6.


The empty room #2, minutes before the new baby arrived...

Arterial Line inserted in Jac's left arm

Jac has had quite a few blood draws done over the last few days to check all sorts of things.

Yesterday he had his Umbilical Vein Catheter (UVC) removed - this line went into his umbilical cord opening - and was very useful for taking some blood draws - others they had to do by taking blood from one of his heels. Since the PIC line (which replaced the UVC line) cannot be used for drawing blood, the nurses had no choice but to do a heel stick each time they needed to draw blood - which was definitely non-ideal.

The doctor decided that it would be best to install an Arterial Line (Art Line) which would allow them to draw blood without sticking him each time - this line will stay in indefinitely.

Alexis and I were in the room while the doctor installed the line.

The installation process is much more difficult than a line that goes into a vein. The arteries are much deeper under the skin than the veins and can not be seen, only felt. In a baby as small as Jac, the arteries are very small and difficult to find. They tried to install an Art line on the 11th (when Jac was admitted), but they were not able to find an artery then.

This evening, the doctor succeeded in finding his artery after what seemed like an eternity to me of sliding the needle in and out, in and out (in reality, it was probably 7 minutes or so). Jac tolerated the procedure fairly well -- he did not show any heart rate spikes, and he calmed down pretty quickly once the line was in.

We were all very relieved when the blood started flowing from the new line. The nurse quickly connected the line to receive a very small flow of fluids containing heparin and a few other things to maintain the integrity of the Art line and to insure that that it does not clot.

There is also a blood pressure sensor connected to the Art line -- his monitor now shows a new readout that continuously and more accurately reports his blood pressure.

Milk fridge

Just as college kids in a house have their beer fridge, the babies at the NICU have their own milk fridge...

And, like the communal beer fridge, each baby's bottles are clearly labeled with the owner's name; and there is a big sign on the fridge door reminding everyone that there is to be no borrowing of someone else's milk!

Happy (1 week) Birthday, Jac!

It is now 1 week since Jac was born. Happy birthday!

A big thank you to everyone!

Just a quick word of thanks to everyone for their thoughts, prayers, well-wishes, and support over the last week.

The week has been a very emotional and physically demanding time -- the positive vibes that we have been receiving have been a big boost to us.

I apologize that I hadn't promptly (or at all) responded to your emails so far!

A visit from Aunty Alexis

Aunty Alexis made it to Boulder today and visited Jac.



Daddy changed Jac's diaper with some help from Mommy

Kangaroo care time!

Just got a call from grandma Toni -- Taj and the baby are in skin-to-skin contact! This is wonderful news -- it means he's stable enough to come out of the isolette and enjoy some bonding time with momma!

This activity is called Kangaroo care, and is considered a very important part of helping the premature babies develop.

Taj said that during this time, Jac's pulse relaxed into a nicely steady rhythm at around 130 bpm (he's usually around 150-160 bpm).

Jac gets a PICC line

Got a call from Taj -- Jac is getting a PICC Line (Peripherally Inserted Central Catheter) installed to replace the UVC (umbillical vein catheter) line which had stopped being usable for IV's and blood draws.

The PICC line will now take over the task of providing an input line for IV's, while external pokes will have to be used to draw blood.

The good thing about the PICC line is that it is inserted under a very surgical (sterile) manner, and can stay in for a long period of time. Moreover, with the PICC line, it would become possible to provide Kangaroo care (see later post).

Jac apparently did not like the being transferred to an open bed for his surgical operation -- he moved around and made crying motions, apparently objecting to the light and noise. The doctor gave him some pain medication to calm him down and make the procedure easier to perform.

Taj's first visit!

Here is Taj's first visit with Baby Jac -- there were quite a few happy tears shed at that moment. Taj felt much more at ease about our son after she was able to touch him, and to meet the wonderful care he was getting from the folks at the Children's Hospital.