Mr. Mom goes to the NICU

This morning Mom and Dad called to see how Josh's night was and were told that he had a rough night.  That he had multiple episodes of desaturations and that he had more residuals (undigested food in his tummy) then they had before.  Mom and Dad were concerned by this information.  When we arrived, we were told by the day shift nurse that the nurse practitioner had ordered a chest xray because they were concerned that Josh might not be tolerating the high flow nasal cannula.  The night nurse had recorded multiple episodes of apnea, two of which required stimulation for him to recover as well as the multiple episodes of desaturation and an increased respiratory rate above 100 breaths per minute.  Mom and Dad were very concerned to hear this since we were not told this when we checked in this morning.  The chest xray looked very good, showing well inflated lungs.  The medical team felt that despite what was recorded from last night that Josh was doing well this morning and they would just watch him closely today.  By the end of the day, Josh had not had any episodes of apnea or desaturations that required stimulation.  Mom and Dad are hoping that Josh will have a better night tonight.

Josh has been tolerating his feedings with only a small amount of residuals, which are tolerable for his level of feeding.  His feedings were increased again to 22ml every 3 hours which is almost to full feedings.  Josh's abdominal girth also increased some, but the doctors don't feel this is an issue, but something just to watch.  This increase in abdominal girth can be related to growth, as well as the increase in the amount of feedings.  As long as his belly remains soft and his residuals stay at a decent level there won't be any changes in his treatment.  At his 6:00pm "hands on" time, he had a big poop, and then proceeded to poop through the replacement diaper and pee through the blanket underneath him.  As a result of this big bowel movement, his tummy girth was almost 1 cm less than it had been 3 hours earlier!  So his tummy seems to be doing well, and is still soft.

Since he is so close to full feedings, they have stopped his IV fluids.  Josh lost 20 grams overnight so his weight is  1320 grams (2lbs 15oz).  He has had several large poops yesterday and today, which have contributed to his weight loss.  He may even lose a bit of weight again tonight, which can again be attributed to the big poops as his body gets used to full feeds again.  Hopefully after a few days of not IV fluids at all, they will remove his PICC line.

Josh had several good awake times today.  Mom was able to see her little man earlier in the day and got to spend a little time him while he was awake.  In the afternoon Dad got to spend some good quality time with Josh.  They spent some time skyping Mom, and then Dad read to his little guy for a while.  Mom wishes she could have spent more time with Josh today, but is very thankful for Dad and that he was able to be with Josh today.  Dad is feeling almost perfect.  Mom however seems to be sicker today and has almost completely lost her voice.  We are hopeful the antibiotics will kick in quickly and Mom will be able to be back with Josh again soon.  Both Mom and Dad are looking forward to being able to touch and hold Josh again (we haven't held him in over a week!).

Prayer Request;

• Josh would not have any problems with desaturation or apnea or increased respiratory rate tonight. 
• Josh would continue to tolerate his high flow nasal cannula and his little nose would heal quickly from all the suctioning.
• Josh would continue to tolerate his feedings well and have no residuals
• Josh stay healthy and not develop any infections or get sick
• Mom would get rest and get healthy quickly from her cold that she got from Dad

Praises:

• Josh had a very big poop and his belly looked great afterwards
• Josh is off of his IV fluids and should be able to get his PICC line out in a few days.
  
• Josh had a very good day after a rough night
• Dad is feeling much better and has only lingering effects from his cold

(Josh enjoying a nice nap on his side when we arrived this morning)

 

 (Isn't he a sweet little angel - look at that hair, it is getting long)

 

 (Josh with his pacey during a feeding - doesn't look like he is enjoying it)

 

 (Guess he wasn't...he can get some good distance on that thing can't he)

 

 (Oh Daddy, what are you doing with that thing, I thought I was done?)

 

A day in the life of Joshua

Josh had a pretty good day today.  Last night he had multiple episodes of desaturation (decreased oxygen) and two episodes of apnea.  His night nurse noted that these episodes were related to him laying on his tummy and his feeding times.  The nurse today tried Josh on his tummy and he had multiple episodes of desaturation and apnea because he was too comfortable.  The easiest solution for this is to not lay Josh on his tummy for a while and to give his feedings over 1 hour.  Mom and Dad were encouraged that even though Josh is having apnea, simply talking to Josh is enough to have him start breathing again.  The doctors increased his chest PT to every 3 hours to help keep his lungs inflated and help him more up secretions, which will help him to desaturated less.  They also explained that it is ok for him to desaturate as long as he is able to recover on his own. 

Josh continues to do well with his feedings.  He is now up to 19ml every 3 hours.  His weight is also up 20 grams to 2lbs 15.5oz.  They have discontinued Josh's IV nutrition, so he is now only on IV fluids until he reaches full feedings which should be in the next 2 days.  Josh has also started on a multivitamin with iron today to keep his body getting the nutrients it needs. Josh also had a large poop today, which is great!  That means his pooping is getting back on track.

Josh also had thyroid labs sent to see to make sure his thyroid is working properly.  When the nurse was sticking his foot to get blood, Josh didn't make a peep.  He did however pull off his nasal cannula every time she turned her attention to his foot.  His favorite spot for his nasal cannula today was his mouth - it ended up there several times today.  

Prayer Request:

• Josh would continue to do well with his nasal cannula and be able to recover from his desaturations on his own and he would have less.
• Josh continue to do well with his feedings and have less reflux with the feedings over an hour.
• Josh would not develop any more infections while in the NICU.
• Josh's thyroid labs would come back ok and he would not need thyroid medication
• Dad's cough would clear up.  Mom's sore throat and nasal congestion would clear up.  Both could get some good rest.
  

Praises:

• Josh is tolerating his increased feeding well.
• Josh had a big poop today.
• The nurse are able to determine what makes Josh's breathing easier and adjust his care to help him

 (Josh enjoying the last of his tummy time for a few days)

 

 (Gotta love that smile)

 

 (Josh having a much better time laying on his side)

 

 (Oh the drama - check out his bubbles)

 

 (I need labs - oh no!)

 

 (Happy baby with his pacey during a feeding)

Rub a dub dub...its sponge bath time!

Josh had an okay day today.  He continues on the high flow nasal cannula.  He had two episodes of apnea and several episodes of desatruation yesterday. He has had multiple episodes of desaturation today, but is able to bring his oxygen saturation up on his own.  The doctors think it might be related to atelectosis, so they started Josh on chest physiotherapy every 6 hours with sigh breaths (a single breath with an ambu bag).  They are hoping this will open up his little air sacs as well as help him get out more secretions.  The first time they did this, he desaturated afterwards, but once his nose was suctioned out he did much better.    Mom and Dad are hopeful that this will help him to have less desaturations.  Despite the desaturations, the doctors feel that he is doing well on his high flow nasal cannula.  Josh continues his quest to remove all tubes and is becoming quite skilled at removing his nasal cannula and placing it on various parts of his face.  Today's favorite spot was to use his thumb to hold it out from his face so it is blowing everywhere but up his nose.

Josh continues to do well with his feeding.  He is now up to 16ml every 3 hours and is tolerating his feeding well.  He has not however pooped in the last 2 days.  This can happen with breastfed babies, but the doctors are watching him very carefully to make sure there isn't anything wrong with his belly.  Mom and Dad are hoping for a good poop sometime soon.  Josh did gain weight again (although keep in mind he hasn't pooped in 2 days) and is now 2lbs 15oz.   They are continuing to wean his IV nutrition down as they increase his feedings.  He should be completely off of IV nutrition in the next few days.

Josh's antibiotics were stopped after today's doses.  Mom and Dad are hopeful that he will continue to do well off of the antibiotics.  Josh had labs today that all looked good, that is encouraging.  He did have some low thyroid test come back on his state screenings (mandatory testing done at birth for all babies).  The nurse practitioner doesn't think it is a big deal, but will order thyroid studies to make sure his thyroid is working.  It is common for premature babies to have thyroids that are slow to start working since they are born so early.

Mom got to bathe Josh today for the first time.  He didn't seem to enjoy the bath at first, but once Mom covered his head with a towel to keep him warm, he liked it much better.  Josh tolerated the bath well, even honoring Mom with a little pee pee shower at the end.  Mom was very excited to get to bathe Josh and can't wait for Daddy to get his chance.

Dad continues to feel better and his symptoms are improving rapidly.  Mom on the other hand is coming down with the same cold.  She is feeling a bit run down, but is very thankful that an awesome friend (who will again remain nameless to protect the innocent) called her in a z-pack which she started today.  We are hopeful that Mom's symptoms will resolve quickly and that Josh will not get sick. 

Prayer Request:

• Josh would not have any apnea or desaturations on his high flow nasal cannula and that the chest PT and sigh breaths will help.
• Josh would not get any more infections while in the NICU and especially not get the cold that Mom and Dad have.  Also that Mom will be patient with having to sit with a mask on all day.
• Josh would continue to tolerate his feedings and that he would being to poop regularly again.
• Josh's thyroid test would come out ok
• Mom and Dad would both heal from their colds quickly and be able to hold and touch Josh without gloves soon.

Praises:

• Josh is tolerating his feeding well and had no residuals.
• Josh 's antibiotics are finished
• Josh's weight is up to 2lbs 15oz!
• Mom got to give Josh a bath today for the first time
• Dad is feeling better

 (Josh was very stretchy this morning- this is one of his many poses)

 

 (Josh smiling for Mommy)

 

 (Mommy giving Josh a bath for the first time - he did very well, with only a little crying)

 

 (Josh trying to help Mommy with his bath- the towel is to help keep him warm)

 

 (Little blond baby after his bath - you can see his color hair better when it is clean)

 

 (Cold baby trying to get warmed up - Josh has almost out grown his little hat)

 

 (Tired baby getting some rest after today's excitement - look at those round cheeks!)

Sunday, Monday, Happy Days... Tuesday, Wednesday, Happy Days... Thursday, Friday, Happy Days..

Josh had an uneventful day today, continuing his string of good, happy days.  He continues to do well with his high flow nasal (HFNC).  He had a few episodes of desaturation (when his oxygen levels go down) yesterday, but those seems to be caused by one of two things - either his nose is clogged with boogies or he is sleeping too deeply and forgets to breath deeply. Josh has had a few of these episodes, but has not had any apnea in the last 24 hours.  We are very proud that he has done so well with his HFNC.  After talking to the nurse practitioner today, we were told that if he continues to do well on the HFNC he will be transferred to the NICU 2.  This is a big move for us and we definitely don't want to rush it.  The NICU 2 is a lower level of care and will be the unit from which Josh will be eventually discharged from.  We are told it isn't as spacious as the NICU 3 and can be a bit more frustrating because you are waiting for your baby to be ready to go home.  We are willing to bide our time in the NICU 3 for now to make sure Josh is really ready before he is  moved.

Josh is continuing to tolerate his feedings well and was increased to 13ml every 3 hours today.  He has continued to not have any residuals with his feeding.  Josh also gained 50 grams over night and now weighs 2lbs 13oz!!!  He is filling out quite nicely, you can barely see his ribs when he is breathing.  We are looking forward to the day when he weighs enough to maintain his body temperature on his own. Josh is still no longer showing any signs of infection, so they have decided to discontinue his antibiotics tomorrow after 7 days of treatment.

Josh continue to have good clear awake times today.  He is much more aware of his environment, looking around and focusing on other items.  He also seeks out either Mom or Dad's faces to focus on while awake. Although his awake times do no last very long, it is nice to spend some good quality time with him while he is awake.  Josh continues to be fascinated with his tubes - he even managed to pull his nasal cannula out twice today.  Both times he was able to maintain is oxygen saturations within his parameters, which was encouraging.

Dad has turned the corner and is starting to feel better.  Mom is still feeling well, but does have an intermittent sore throat that started back this evening.  Mom and Dad continue to be encouraged by our family and friends an the support they provide to us in many ways.  Thank you for you love and support.

Prayer Request:

• Josh continue to do well on his nasal cannula and not have many, if any, desaturations
• Josh would continue to tolerate his feedings without residuals or reflux and he would continue to gain weight
• Josh's doctors would have wisdom about when to transfer him to NICU 2
• Josh would not develop any other infections while in the NICU
• Dad would continue to feel better and Mom would not get sick

Praises:

• Josh is now up to 2lbs 13oz!!!  (Only 3oz to go before we hit 3lbs!)
• Josh is tolerating his feedings well
• Josh is doing well on is high flow nasal cannula
• Josh will soon be off of his antibiotics
• Mom and Dad are thankful for their family and friends - both near and far away - that are so supportive!  We love you!

 (Cute little Josh asleep when Mommy got there... his little birthmark was pretty bright today)

 

 (Look at that blond hair!)

 

 (Josh in all his cuteness doing what he does best... sleeping... and in his favorite position... all limbs stretched out)

A breath of fresh air... the nasal canula adventure.

Josh is continuing his string of good days.  Mom and Dad are very proud that Josh has done so well with the many changes that have been made related to his care in the last few days.  We are particularly proud that he has done so well with the latest change.  Josh is now on high flow nasal cannula (HFNC) and off of CPAP!!!!  As you can see in the pictures below, Josh is only on a tiny nasal cannula, that is much less bulky than his CPAP.  He has actually been sleeping much better and deeper with the nasal cannula meaning his awake times are a little longer and he is much more aware of what is going on around him.  The nasal cannula gives him air at 1 liter per minute (which is a high rate for a baby) to provide some positive pressure to help keep his lungs open and then they "bleed in" oxygen to keep his oxygen saturation between 80-95%.  Josh is currently on 24% oxygen and his oxygen saturations are staying between 90-97%.   So far Josh has done well with his HFNC and has only desaturated (had decreased oxygen levels) once and that was because he had boogies in his nose.  The nurse told Mom and Dad that they have left his CPAP machine hooked up and near his bed to ward of bad juju (this is a very technical nursing term - if it is close by you won't need it).

Josh is continuing to tolerate his feeding without any residuals.  They have increased his feedings to 8ml every 3 hours for four feedings.  If he tolerates this well, they will go to 10ml every 3 hours.  Josh has also started to poop again now that his feedings have restarted.  We are excited Josh is doing so well with his feedings.  Josh's weight also increased today to 2lbs 11oz!!  He is well on his way to being a chunky boy. 

Josh's infection seems to have resolved itself.  The doctors are talking about discontinuing his antibiotics possibly as early as tomorrow.  They feel that because his ET tube has been removed and he doesn't have any signs of pneumonia that he will do ok off of the antibiotic.  Josh's murmur is also gone today, which they think might be thanks to the blood he received yesterday.  It is possible that it will reoccur, but for now, we will rejoice that it is gone.  Mom and Dad were told again today how great it was that Josh has a directed unit of blood from Uncle Matt (they even know it came from Uncle Matt).

Josh's quest for the tubes continues.  Even though he seems to like the nasal cannula much better than the CPAP or ET tube, he still trying to remove it from time to time.  His efforts so far seem to be mostly half-hearted since he is able to move his head around with more freedom now.  The feeding tube however remains a point of constant interest.  Josh is developing quite a strong grip from holding on so tightly to his feeding tube.  We are hoping this is a sign that he will be able to maintain a tight grip on the football as well (Go Gators).  Josh continues to be very active and spend a majority of his time today with his little butt in the air.  We have been told repeatedly that this is a sign of a happy, healthy preemie.  Mom and Dad just enjoy watching him try to scoot around in his bed. 

Dad continues to not feel good, his cold seems to be getting a bit worse.  Mom is thankful that one of her friends, who will remain nameless to protect the innocent, was able to call in an antibiotic for Dad today.  We are hoping that Dad will be good as new in a few days and will be able to spend more time with Josh.  Josh definitely doesn't know what to think about his parents in yellow masks.  Mom is continuing to mask and limit touching until she is sure she isn't sick - although she feels pretty good.

Prayer Request:

• Josh would tolerate his high flow nasal cannula well and would not need to go back on CPAP.
• Josh would have little to no apnea and bradicardia.
• Josh's brain would continue to grow and mature so that he has no more apnea and would begin to get ready for breastfeeding (sometime in the next 2-4 weeks).
• Josh's infection would be taken care of with his antibiotics and he would not develop any more infections.
• Dad would begin to recover quickly from his cold now that he has started on antibiotics and that Mom would stay healthy.

Praises:

• Josh is on high flow nasal cannula and off of CPAP!!!
• Josh's heart murmur is gone again today, thanks to the blood he received yesterday
• Josh is able to rest more comfortably and be more awake with the CPAP off.
• Mom has not gotten sick yet.

(Josh sporting his new nasal canula... he can sleep better without all that bulky CPAP equipment)

 

 (Josh just starting to wake up to play with Mommy - see how long his hair is getting and it is still blonde)

 

 (Josh waving hi to Mommy... he was very awake today!)

 

 (Cute little preemie socks that were given to Josh... note that they are probably still twice the size of his feet)

 

 (Who is that Josher checking out?  That's Mommy!)

 

 (Cute little Josh figuring out how to suck his fingers)

 

(Josh finding his way around a pacifier during one of his feedings)

Rules for Visitation

Thanks for the suggestion Marla!!

Since Josh is such a popluar guy and so many people want to visit him, Mom and Dad thought it would be helpful to provide some guidance for our visitors.

1. If you are sick, please do not come to visit. We would love to hear from you through commenting on the blog, email, phone calls, smoke singals, etc, but we don't want to risk Mom and Dad getting sick and passing this on to Josh. We would be happy to reschedule a visit when you are feeling better.
2. All visitors must be escorted into the NICU by either Mom or Dad.  You will not be permitted to enter the NICU unless one of us is here.  When you first enter the NICU, you must scrub your hands at the sink.
3. Mom is usually at the hospital from mid-morning through the evening hours during the work week (when Dad gets done visiting after work).  Mom and Dad are ususally here for many hours on the weekend, although they try to sleep in some on the weekends.
4. If you want to coordinate a time to come and see Josh during the week it is probably best to either call or email Mom and let her know.  For weekend visits, you can call either Mom or Dad.  We also like the occassional unexpected visitor and if we are here.  We won't turn you away unless Josh is having a bad day.
5. Josh rules the roost right now, so if he is having a bad day, we may decide to limit visitors to Mom and Dad only to help him save his energy (he loves to perform for his visitors).
6. Only Mom and Dad are permitted to touch Josh right now.  This is to limit the possibility that he might get an infection or get sick.  You will still need to scrub your hands when you come into the NICU.
7. Hugs are great and Mom and Dad love to get them.  The only exception to this is if you are one of Mom's work friends and you have been at work on the day you visit (i.e. have done patient care).  This is to limit the possibility of Mom or Dad passing on infections to Josh while holding him or helping with his hands on time.
8. Please do not feel obligated to bring things for Josh when you visit, we all just enjoy your company.  if you would like to bring a gift, books are a great idea (used books are perfectly fine).  Josh's current library consists of four books and I am sure he will be reading them to us soon. 

Christmas continues...

Josh  has continued his string of good days today.  His CPAP settings were reduced from 10 breaths per minute as a backup to strictly spontaneous, which means that Josh is breathing completely on his own, with only positive pressure applied by the CPAP machine.  He has had those settings since 8:00am this morning, and only had two apneic episodes since then (almost 12 hours), one of which came after a feeding.  The doctors are also talking about possibly putting Josh on a high flow nasal cannula (which is the next step down from the CPAP) in the next few days to see how he would do. The high flow cannula provides some pressure to help keep his lungs open, but he would be doing more of the work himself.

Josh is tolerating his feeds very well, and is up to 6 ml per 3 hour feedings.  Josh is getting to be a big boy, with his weight now up to 1205 grams (2 pounds 10.5 ounces).  Josh has gained 12.5 ounces since his lowest weight a week after being born.  They have started weaning his IV nutrition again, decreasing it each time his feedings are decreased.

He is looking pretty good overall, his color is good and he seems to feel well.  His labs are all looking good.  His hematocrit was decent, but because there was dedicated blood for him set aside, the doctors decided to give him another unit of Uncle Matt's blood.  More blood also means a new IV for Josh, this time it was placed in his right hand.  Josh's platelet count (the part of you blood the helps with clotting) has been elevated, which could be the result of his infection.  The doctors said they will continue to monitor this over time since prior to his infection it was normal.  His white blood cell count has decreased by half, which is an indicator that the antibiotics are working well.  The final measure of infection/inflammation in preemies is the CRP.  Josh's CRP has been elevated his last two checks on the 21st and 23rd.  It will be checked again in the next few days and should hopefully show signs of improvement.  Josh continues on his antibiotics and will do so for at least 14 days from when his infection was found. 

Other than that, little Josh slept most of the day, and Mom and Dad continue to get rest. Josh did manage to wake up for a short period of time while Mom and Dad were visiting.  It is normal for him to be a bit more tired as his body is being asked to do more.  Mom looks like she may not be getting sick, while Dad is in the middle of a decent cold (with sore throat, runny nose, clogged sinuses, etc).  Dad was only allowed to go in and see Josh for a few minutes with a mask on, and Mom was only allowed limited physical contact and wore a mask just to be sure.  Josh so far does not look like he has picked up anything from his Mom or Dad, which is good, and the antibiotics that he is on seem to be working well.  Mom and Dad are continuing to limit their time with Josh, even though they would both rather be with Josh, to minimize the likelihood that he will pick up Dad's infection.  Hopefully we will be back up to full visits within the next few days.  In the mean time, we are keeping the phone lines at the NICU very busy keeping up with our little man.

Mom and Dad were thankful to get to celebrate Christmas today with Grammie, Grandpa (Mom's parents) and Uncle Matt.  They made a great dinner and showered Josh with many gifts...we got some nice things too.  It was nice to get to spend some good time with family.   Mom and Dad spent time skyping with  Mimi, Poppy, Uncle Nick and Aunt Anita, Uncle Steven, Aunt Cristina, Luke and Jared yesterday.

Prayer Requests:

• Josh continue to do well on the CPAP with spontaneous breathing settings
• Josh continue to tolerate his feedings well, and make it up to full feedings soon
• Josh continue to gain weight steadily and consistently
• Josh's infections continue to clear up, and that he not get sick or develop any new infections
• Mom not get sick, and Dad get better quickly
• Mom continue to pump well and her milk supply increase to meet Josh's future demand
• Mom and Dad get good rest

Praises:

• Josh is on spontaneous breathing settings on his CPAP
• Josh is having very few A's and B's
• Josh's color is very good (after being very pale earlier in the week)
• Josh was able to receive another blood transfusion - thank you Uncle Matt
• Mom and Dad are trying to get some rest while they are on limited visitation

Limited Visits = limited pictures....sorry!

 (Josh trying to sleep when Mom and Dad arrived.  The blue things are suppose to help keep the CPAP from biting into his face.)

 

 (Josh taking a peep at the Mom and Dad while enjoying his dinner)

 

 (Uncle Matt visiting with Josh before returning to Seattle.  Josh says "thanks for the blood favoritest uncle o'mine from Seattle".)

It's a Christmas baby!

Merry Christmas!!  Josh has had a great day today, which makes three in a row, and makes for two very happy parents.  The day started out very good for Josh, but not so good for Mom and Dad.  Both of us woke up with sore throats, and so after having a wonderful Christmas brunch with friends, we went over to see Josh and had to wear masks the whole time we were in there with him.

As I said, Josh has had a really good day, which is a continuation of two really good days.  He is breathing really well, taking his feedings really well, and has only had two episodes of apnea/bradicardia in the last 24 hours.  He only needed to be stimulated for one of the episodes!  Josh lost 20 grams from yesterday to today, but the doctors said that this is most likely caused by the fact that he got blood two days ago, and they gave him lasix to help him eliminate the extra fluid volume in his little body.

In other news, the doctor's told us that Josh's heart murmur is back, and that if it stays, they may have to do an echocardiogram (ultrasounds of the heart) to check it out.  They did say that the reemergence of the murmur could be from that duct between his heart and lungs opening because of the infection, or lack of oxygen from the low red blood cell count, or just from immaturity.  The murmur is less noticeable now that he is on antibiotics, and has received a blood transfusion.  The doctors are much more comfortable giving Josh blood now that he has a directed unit available, and so they will test his hematocrit again tomorrow and may give him another infusion if his hematocrit is still low.  Yeah for Uncle Matt's blood going to good use!

Josh's feeds were increased to 4 ml per 3 hours, and he is still handling them well.  The doctors said that if he handles his feeds well for two days, then they will go back to increasing his feeds every 12 hours.  Josh did manage to pull his entire feeding tube (12 cm of it) when we first got there this morning.  He doesn't seem to like having tube stuck into him for some reason.  He did learn a lesson today though.  His lesson was that if he pulls his tube out, then it gets put back in.


The doctors also lowered his CPAP settings to only 10 breaths per minute as a backup to Josh's breathing, and he seems to be handling that very well.  He seems to be much stronger this time than when he came off of the ventilator the first time when he was less than a week old.  Mom and Dad are encouraged by Josh being able to stimulate himself when he has apnea and having less occurrences of apnea since being off of the ventilator.

Mom and Dad were only able to spend a short time with Josh today, because of not feeling all that great, but we were able to read the Christmas story to him, and were able to have some good awake interaction time.  We only hope that we didn't look too scary to him with our surgical masks on.  Mom and Dad then went home to get some rest.  Mom is still feeling decent, and the sore throat has mostly dissipated.  Dad on the other hand now has a full blown cold (sore throat, runny nose, cough, etc).  So he is going to have to have very limited exposure to Josh until he gets better, and Mom will have to have limited physical contact with Josh until she is sure that she will not get sick. Both Mom and Dad are bummed by this turn of events, but want to do what is best for Josh.

Prayer Requests:

• Josh not get sick from any bugs that Mom or Dad may have brought in before they knew they were sick
• Mom stay healthy, and Dad recover quickly
• Mom and Dad get the rest that they need, so that they do not get sick (or sicker)
• Josh continue to breath well, and not have any A's and B's (or very few)
• Josh continue to tolerate his feeds well and maintain or gain weight
• Josh's infection go away totally and he not develop any new infections
• Josh's heart murmur go away completely and not come back
• Mom's milk supply continue to increase to meet Josh's future demand

Praises:

• Josh is a wonderful Christmas present!
  
• Josh is continuing to breath really strongly with very few A's and B's
• The love and support of so many friends and family is more than we could have imagined and wished for.  We love you all.
  
• Josh has come so far in less than four weeks, and we are amazed at how well he is doing

 (Josh sleeping comfortably this morning- note the feeding tube is already wrapped around his arms)

 

 (Josh with the Christmas penguin that Zoe Long gave him.  Thank you Zoe!)

 

 (Josh with no tubes on/in his head.  This was after he pulled his feeding tube.  This is the first time we have seen him this way!  Isn't he beautiful!)

(Josh with his white Santa goatee and his Christmas hat - too bad we couldn't get the hat on his head)

 

(Josh getting ready to go back to sleep after a good visit with Mommy and Daddy)

Twas the day before Christmas...

... and all through the NICU, not a bed was a beeping, not even bed 9!  Baby Josh was settled all snug in his isolette, dreaming that soon his Mommy and Daddy would be there.  The nurses went about all quiet and calm, with visions of healthy babies filling their heads.  Then into the parking garage drove a sedan, with two tired buy happy parents sitting inside.  Out come Mommy and Daddy all loaded down, with the camera, the netbook, the water bottle, and lunchbox!  Into the hospital they swept with a flourish, pushed the up button on the elevator, and waited for the ride. Up one floor, then two floors, and finally three, and out into the hallway they exited with glee.  Down the hall, through the door, and stop at the clerks desk... these parents are on a mission, so don't block their way.  After the clerk had cleared that they could enter, it was just wash one hand, then two hands, and then into the ward.  And who did they greet with much joy and laughter, than a small baby Josh, all squirming and grabby.  And all that was heard by the parents that day, was "It's Christmas eve, and Josh had a great day!"

So Josh had a great night, with only one episode of apnea/bradicardia (A's and B's), but this did not even count because he had pulled his CPAP out of his nose (a recurring theme).  Josh is doing very well today as well... so well in fact, that he has only had a single episode of A's and B's since 2am YESTERDAY morning (more than 36 hours ago).  This is good, since up until now, he has been having at least three or four a day, with multiple in an hour when he wasn't doing very well.  We are very thankful for this.

Josh has spent most of the day sleeping, but had a few good awake periods with his Mom and Dad there.  When the doctor's rounded on him, we found out that he grew no less than 4 different types of bacteria in his ET tube!  He is on antibiotics that specifically target these bacteria, and will be on them for at least 14 days to make sure that it clears up completely.  His chest xrays still look clean, and he is not developing any pneumonia.  His blood work is also all clean, and none of his blood cultures grew anything, so whatever infection he had, was contained to just the lungs (and maybe even just the ET tube).  We are very glad that this infection was caught early though, as four different bacteria could have caused Josh lots of trouble if left unchecked for too long.  We thank God for the watchful eyes of his doctors and nurses, as well as the abundance of prayer from so many sources.

Josh is nice and pink today, a sign that his Uncle Matt's blood is doing its work.  He has been constantly getting the prongs of his CPAP out of his nose, which we then kindly insert back into his nose (not that he wants them there).  However, the good news about this is that Josh seems to tolerate not being on CPAP well, at least for the short periods before it is discovered that the prongs are out of his nose.  He seems to be able to hold his oxygen saturation well (for at least short periods).

The doctors have also restarted Josh on his feeds.  The will start him off slowly, with only 2 ml per three hours (he was up to 22 ml per three hours before).  They will then slowly increase his feeds, while watching to make sure that his belly is not getting distended (sign of infection).  Just like before, they will ween down his IV nutrition as his breast milk intake increases, so that he is getting 150 ml/kg/day of total fluids.

To top the day off, Mommy got to have some Kangaroo time with Josh, which was the first time that we have been able to hold him since he got sick on Sunday (four days ago).  Both Mommy and Josh were very happy to be able to enjoy the togetherness of Kangaroo time.  The nurse placed Josh in a way that Mommy could actually look and see Josh during the Kangaroo time, and they had a wonderful time looking at and talking to each other.  Josh has started making some of the baby cooing noises, now that he is off of the ventilator (and not upset from being sick and being poked and prodded).

Prayer Requests:

• Josh's antibiotics work well and quickly, to make sure that if he had these bacteria in his lungs, they disappear quickly
• Josh handle his renewed feeds well, and be able to get back to full feedings of breast milk as quickly as possible
• Josh continue to breath well, with little to no A's and B's
• Josh not lose weight while on the IV nutrition, but actually maintain or continue to gain weight (he is still at 2 pounds 10 ounces)
• Mom and Dad get some good rest, and be able to sleep well between pumping periods at night
• Mom's milk supply increase, so that we can take longer breaks between pumping at night

Praises:

• Josh's infection was found quickly, it was speciated quickly, and he now is getting antibiotics that specifically target these bacteria
• Josh is breathing really well, and has only had one episode of A's and B's in the last 36+ hours
• Mommy got to have some Kangaroo time with Josh today
• Josh's breast milk feedings have started again

(Josh sleeping when Mom and Dad got there this morning)

 

(Why you gotta go and put this CPAP on me again?)

 

(Mommy and Josh sharing a tender kangaroo moment)

 

(Mommy enjoying her kangaroo time with Josh)

(Josh talking to us in the morning)

(Josh having the cutest hiccups ever!)

A bright new day

Mom and Dad called the hospital every time that we got up to pump during the night, and we kept finding out that Josh had not been reintubated yet.  Josh had a run of apnea and bradicardia (A's and B's) around 9:00pm, but then has only had no spells of A's and B's since 2:00AM.  Mom and Dad arrived at the hospital to find Josh looking much better than he did when we left him yesterday.  He is down to room air (21% oxygen), and still has an oxygen saturation of 100% on CPAP.

The doctor's decided that with all the blood that Josh has had taken out for blood cultures, labs, and other tests, that he is getting anemic (his hematocrit was down to 25).  So they decided to give Josh another blood transfusion.  We are very glad that we now have a unit of blood on hold for him that came from his Uncle Matt.  Another great thing is that he is breathing great on room air while still having a low blood count, so the transfusion should only make his breathing that much easier. They placed an additional IV in Josh's foot for the blood transfusion today.  We are hoping it will be removed later this evening once his transfusion is done.
The xrays on Josh are still coming back clean, with no pneumonia in his lungs, and his belly looking good.  They will continue Josh on IV antibiotics for a full 10 days, to make sure that if the bacteria was in his lungs, and not just in his tube, that it is fully killed off.  Josh's red suction tube removing gas from his belly will be removed today and replaced with a large feeding tube to help drain the air the CPAP pushes into his tummy., If his belly continues to show no signs of distention, then they will start his feeds again tomorrow.  They will start slowly, with only 3 ml per 3 hours, and then gradually increase the feeds by 3 ml per three hours until he is back up to full feeds of 21 ml every 3 hours.  Because he is not on breast milk feeds now, he is back on his IV nutrition of TPN and lipids.  The bright side to this is that with Mom continuing to pump, we are getting ahead of his breast milk needs in the event that he starts needing more than Mom can provide.  Because of the IV antibiotics and the TPN, Josh will have PICC line placed either tonight or tomorrow morning.  This will save him from having multiple sticks for IV placement while he is receiving these medications.

Overall today has been much better, and we really believe that is directly attributed to the prayer of the many people that we know have been praying for our little Josh.  We are so thankful for the tremendous love and support that so many people have shown us. We anticipate that the roller coaster ride will continue in the days and weeks to come, but we believe the effects are lessened because of your prayers.

In other news, we were told that the Shands parking garage stops charging for parking tomorrow (December 24th), and will not charge for parking through new years (January 1).  So if you want to come and visit during the day, just let us know (i.e. call ahead), because it is free to park at Shands.

Prayer Requests:

• Josh continue to breath well on the CPAP
• Josh's hematocrit levels improve with the blood transfusion, and that this make many things easier for him
• Josh's infection go away quickly and he not develop pneumonia or any new infections
• Josh not lose any weight while off of breast milk and on IV nutrition
• Josh not have many (if any) episodes of A's and B's
• Mom and Dad get good rest and have peace about Josh's health and care
• Mom's milk supply continue to increase

Praise:

• Josh is up to 1,190 grams (almost 2 pounds 10 ounces)!
• Josh is breathing well, is on room air (21% oxygen) and has great oxygen saturation
• Josh has a unit of blood set aside for him from his Uncle Matt (which makes Mom and Dad feel better about him getting blood)
• Josh is resting comfortably after being poked and prodded for most of the morning.

 (Josh trying to roll out of his snuggly this morning. Do you like his tape goatee?)

 

 (Josh after having the new IV placed in his little foot)

 

 (Josh without his CPAP mask - isn't he handsome? (he refused to open his eyes))

 

 (Pale baby resting after a morning of being poked and prodded)

 

 (Josh saying hi to Mommy and Daddy this afternoon)

 

 (Josh receiving his blood transfusion thanks to Uncle Matt)

 

The roller coaster ride begins

Mom arrived this morning to find a much happier and healthier looking baby this morning.  Josh was awake and interactive, wanting to have Mom's attention, which Mom was very happy to provide.  According to both the night shift and day shift nurse, Josh had a good night and had little to no drainage from his tummy tube and he had only a few episodes of apnea/bradycardia.

Needless to say, Mom and Dad were anxious to hear how Josh's xrays were and if anything had grown out on his cultures he had sent yesterday.  Around noon, the nurse told Mom that they had added an additional antibiotic, which made Mom suspicious that one of Josh's cultures was positive.  A short time later the nurse practitioner came by to discuss how Josh was doing. 

Josh's xrays were looking better, his intestines had decompressed, so there was less air in them, which means it is less likely that he had a bowel infection.  His blood cultures had no growth so far.  His ET tube culture however had grown gram negative rods, indicating that there is an infection in his ET tube and possibly an early sign of pneumonia.  So they added an additional antibiotic to make sure he is getting the right treatment until the culture can be sent for sensitivity. 

Because Josh was doing better today they decided to try running the ventilator with no assisted breaths (Josh breathing completely on his own).  He did not do very well with this, having multiple A's and B's (apnea & bradicardia).  However, because of the positive cultures from his ET tube, the doctor's decided to extubate him and give his throat a chance to heal and for the antibiotics to work.  So Josh is on CPAP right now.  He may very well go back on the ventilator in 24 hours, depending on how he does, but this will allow his irritated throat time to heal and his antibiotics time to work. 

Josh is very riled up (crying and thrashing around) because of all the things that have done to him, and so we are not sure if he will even make the 24 hours on the CPAP.  If he goes too long with crying and thrashing around, then he may tire out his little body and stop breathing.  If they reintubate him, they will be using a new sterile ET tube, which is also a good thing from having been extubated.  Honestly, at this point, we are not sure what would be better for Josh... to stay on CPAP or to be reintubated.  Both have positives and negatives, and we are concerned that he is just very upset and seems to only breath constantly when he is awake and crying.  Needless to say, we will be calling multiple times tonight to keep track of his status.

So far Mom and Dad haven't been able to touch or console Josh - everything seems to upset him more.  This is pretty upsetting for Mom and Dad - we wish we could just pick him up and hold him. Josh is continuing to have apnea despite being repositioned.  The nurse practitioner increased his CPAP rate to 20 breaths per minute but said if this was not effective he will be reintubated tonight.  We will keep hoping and praying that whatever will be best for Josh will be the outcome.

Prayer Requests:

• Josh's antibiotics be adequate and effective in killing off his infection
• Josh would breath well on the CPAP... not having many A's and B's
• Josh's blood cultures not grow anything (indication of other infections)
• Josh's belly continue to show decreased inflammation
  
• Josh restart his feedings in the next few days
  
• Josh not lose weight, but continue to grow, he is still at 2lbs 9oz - no change from yesterday
  
• Josh not tire himself out by crying and thrashing around
• Mom and Dad get some rest despite feeling more than a bit freaked out and stressed from Josh's condition
• Mom's milk supply continue to grow to support Josh's future nutritional demands

Praise:

• Josh's oxygen saturation and breathing are holding pretty steady
• Josh's blood gases have been good
• Josh's infection was caught early, and so the antibiotics have a very good chance of working quickly
• Josh's tummy is improving, making the chances of renewed feedings better
• Josh is extubated (for better or for worse,)
• Josh can cry audibly (which may sound weird, but we just like to be able to hear him)
• Dad has five days off of work... Yippee!!!

 (Josh sleeping this morning when Mommy arrived)

 

(Josh very focused on going for his ventilator tubing)

 

 (What a sweet boy!)

 

 (Josh trying to control himself to keep his hands off his tubes)

 

 (Unhappy CPAP baby)