Baby goes out on the town

Josh has been a busy little boy recently.  Since he got his synagis shot for RSV, and had good blood numbers, and has not gotten sick so far, he was allowed to go out in public (with appropriate safety precautions by Mommy and Daddy).  Josh's first official mass function was his baby shower at Daddy's work.  He had a good time (he slept most of time in his sling), and Mommy and Daddy enjoyed playing games.

Josh's next public outing was at church.  Mommy and Daddy really enjoyed being able to go back to church, since we hadn't been able to go since Josh got out of the hospital.  Mommy and Daddy came in a bit late and left a bit early (to avoid the crowds), but enjoyed the worship and service from the balcony.

Josh continues to have some gas and reflux issues, but Mommy and Daddy have found that mylocon and gripe water seem to help some, along with the reflux medication that Josh's pediatrician has prescribed.  Josh's weight seems to be going up nicely.  His last official weigh in was at 6 pounds 12 ounces at his pediatrician, but his latest weight (tonight) at home on the baby scale that we borrowed from the neonatalogy clinic said he was 7 pounds 10 ounces!  We preface that by stating that the scale is different than the official one at the pediatrician's office, and it always reads 2 to 3 ounces heavier than the pediatrician's scale, but that is still some great weight gain!  So much so that Mommy and Daddy actually called the pediatrician to make sure that Josh wasn't gaining weight too quickly.

Josh seems to be going through a growth spurt, which would account for his weight gain.  The last time he was measured, he was 18.5 inches long.  Daddy used the same technique to measure Josh at home and he measured out at 20.75 inches long!  He is also fitting lengthwise into his newborn sized clothes very well.  He still doesn't fill out most of them width-wise, but he is working on that.

Josh is also starting to have longer and more interactive awake times during the day.  Mommy and Daddy are working really hard to get Josh used to a day/night schedule where he is easier to put back to bed at night, and stays up more during the day.  He usually has a good two to three hour awake period in the morning, early afternoon, and evening.  Josh has also slept up to six hours at a time at night, while cluster feeding (feeding every two hours or so) during the day.  This has done wonders to help Mommy and Daddy's sanity.

Prayer Requests:

• Josh have a good visit at the pediatrician's on Friday, and that he not be too put out after getting his 4 month vaccinations
• Josh's eye appointment on Friday go well and that the stage 1 ROP in his left eye be decreased (if not gone completely)
• Josh continue to grown and gain weight well
• Josh continue to be healthy, and that he not get sick now that he is going out to more public places
• Josh continue to stay awake well during the day, and start to consistently sleep longer at night
• Josh be a content baby when fed at night and go back to sleep without fussing a lot so that Mommy and Daddy can get good sleep too

Praises:

• Unofficially Josh is up to 7 pounds 10 ounces and is 20.75 inches long!
• Josh got some cute and fun stuff at his baby shower at Daddy's work (thank you Natalia and Stacy for planning it!!!)
• Josh is sleeping up to 6 hours at a time at night!
• Josh's personality is starting to come out, and his parents love it!

(Josh enjoying his swing)

 (Uncle Nick enjoying holding Josh and cousin Noah)

(Peace Dude!)

(Josh showing off his tummy and how he is growing so quick)

(Mommy enjoying some birthday cake for her birthday - the big three oh!)

A chunky monkey

When we last updated, we had our first good night sleep in almost a week.  Mommy and Daddy were hoping and praying that this wasn't a fluke.  We are very pleased to report that so far it doesn't seem to be.  Josh has been sleeping five to five and half hours followed by a four hour stretch.  He is making up for his missed meals by eating a little more frequently during the day.  After almost 4 months of waking up every three hours we are excited that our little guy if finally getting some good long stretches of sleep. 

Josh had his eye appointment last Friday.  The eye doctor said that his right eye no longer has any signs of retinopathy of prematurity (ROP).  His left eye is still showing a grade 1 ROP, but the margins are fuzzy which indicates that it is starting to regress.  Josh will need to continue to follow up frequently until his ROP is completely gone and his eyes are full mature.  Our next appointment is a two weeks from last Friday.

Josh went in today to have his synagist shot.  Mommy and Daddy were very excited that his shot was finally in, since he was due to have it last week.  The synagist shot is to help prevent/minimize RSV infection.  RSV is a form of the cold virus that can cause serious side effects in any baby, but particularly preemies.  We are hoping that this combined with our social isolation of Josh will prevent him from contracting RSV infection (or any other infection).

Josh is continuing to do well with his new feeding schedule.  He continues to be both breastfed and bottle fed, which seems to be working well.  Josh's weight is up to 6lbs 12oz!!  That is a gain of 7oz in just 6 days - this is the making of a chunky baby!  He is now fitting comfortably into his newborn sized clothes, which is a little hard to get use to (in a good way).  Mommy must confess she is having a good time dressing Josh up in lots of cute clothes.  After all, everyone loves a baby with a monkey on his butt.

Josh continues to be quite the cuddly baby.  He is starting to get out a little more (he is doing the new mom's lunch with Mommy) and makes quite an impression.  All the mom's like to ooh and ahh over our cute little man.  Mommy has actually been able to reconnect with another mom she met in the NICU as well as spend time with aunt Anita and cousin Noah.  Josh is also starting to be quite the happy baby, frequently smiling during his awake times during the day.  Everyone is enjoying seeing such a happy baby in the house!

Prayer Request:

• Josh's eyes would continue to improve and mature.  The ROP in his left eye would be completely resolved when we go back for our next appointment
• Josh would remain free of infections, especially RSV
• Josh would continue to sleep well and develop a good sleeping schedule
• Josh would continue to gain weight steadily and breastfeed well
• Mommy and Daddy would be able to rest well.

Praises:

• Josh is now 6lbs 12oz!  That is over triple his birth weight!
• Josh is sleeping much better, as are Mommy and Daddy
• Josh was able to get his synagist shot today and has avoided illness so far

(Daddy spending some quality time with Josh after work)

(Daddy and Josh were having a moment)

(Josh pulled this toy to his mouth all by himself.  He is starting to grab onto things more)

(Wide eyed Josh - this is how he looks frequently these days while taking in his surroundings)

(Need we say more?)

(Every baby needs a bear on their tushie)

Josh continues to grow

After a very long week with little sleep for Mommy and Daddy, Josh finally had a good night's sleep last night.  Although we have seen our pediatrician and talked to her on the phone multiple times in the last week, we are still not sure what has made the difference.  We can only hope that our little guy will continue to sleep as well or better than he did last night.  We apologize for not blogging sooner, but between being sleep deprived and super busy with appointments this weekend, we haven't had much time or energy. 

Josh has been doing well, despite the lack of sleep and lots of appointments.  Josh was seen for lab work yesterday.  He weighed in at 6lbs 5oz.  This is only a 2 ounce increase from his appointment almost a week ago.  Mommy, Daddy and our doctor were not pleased with this at all.  So we have gone up the amount of formula that Josh is receiving and we are hoping this will help to weight to increase at a better rate.  We are a little disappointed that it looks like Josh won't be able to be 100% breastfed.  But at this point we just want our little guy to gain weight steadily and grow up to be a big strong boy.  We are willing to have him be partially breastfed and partially formula fed if that is the best way to do this.

Besides the feeding issues, Josh had a CBC done to determine if he is still neutropenic (his white blood cells not working properly).  It showed that his white blood cells are working very well now and he is no longer neutropenic.  It also showed that he is slightly anemic (his red blood cell count is low) but our pediatrician thinks that will resolve on its own with iron supplementation and time.  We are continuing to give him vitamins and formula with iron in it.  Josh is also due for his synagist shot which helps protect him against RSV (a dangerous version of the cold).  The shot wasn't available this week because it was never ordered, even though we told our pediatrician three times over two weeks, but he should get it next week.

Josh also had the ultrasound of his spinal cord today.  They were looking to see if his hemangioma was growing down into his spinal cord causing a tethered cord.  The ultrasound showed that there was no spinal cord involvement!!!!   We are very thankful that they ultrasound was negative.  The radiologist even checked out Josh's kidneys while he was at it - they were also perfect!   This is a huge weight lifted off of us.

Josh goes back tomorrow to have his eyes check again, so we will have an update about that soon.

Also as far as his developing personality, Josh continues to enjoy spending time with people.  He has especially enjoyed just looking around and "talking".  It is neat to look at the world through his eyes.  He regards the whole world with such wide eyed wonder.  He continues to do well with his tummy time and he is  holding his head up mostly on his own.  Mommy and Daddy are continuing to work on getting him caught up on his developmental milestones.  Josh is also enjoying getting to know his Mimi better while she is staying with us.

**Special prayer request - The brother of some friends of ours and his wife unexpectedly lost their baby this week.  Please be praying for them as they deal with this huge loss.**

Prayer Request: 

• Josh would do well with the increase in his feedings and gain weight at a good rate.
• Josh's eye exam would go well and that his retinopathy of prematurity would be resolved.
• Josh would not get sick, particularly with RSV.
• Josh's body would correct his anemia with the iron he is getting.

Praises:

• Josh's ultrasound showed no spinal cord involvement!!!!!
• Josh weighs 6lbs 5oz
• Josh is no longer neutropenic!!
• Josh is thriving at home and enjoying checking out his new environment

(Josh enjoying some time in his swing - he is trying out the 5 S's from the Happiest Baby on the Block)

(What are you doing?)

(Now that is the face of contentment)

(Need I say more?)

(Monkey Butt Cousins! )

(Noah and Josh took turns crying over having their pictures taken)

(Mommy and Josh enjoying some family time with Aunt Anita and Noah)

What do you do with a fussy baby? Love on him!

It is hard to believe, but Josh's original due date is tomorrow March 6th.  He will be 14 weeks old on March 7th.  It is amazing to think that our little guy could be born so early and be doing so well.  He was born at 2lbs 2oz and is now 6lbs 3oz!  More than words can express we are thankful to have Josh home with us and to have the on going prayers and support of so many of you. We are very blessed!!

Josh is doing well overall, although he has had a rough couple of nights.  He has decided that he doesn't want to sleep at night, instead he would rather wail at the top of his lungs for at least two hours after each feeding.  Mommy and Daddy are at a loss as to what might be wrong with him. Nothing comforts him, not holding or rocking or swinging or anything else you can come up with at 2am.  So after 3 very long nights, we called our doctor's office today to see if there was anything else we could do.  (We have been thinking that perhaps Josh was learning that if he fussed he got held and was enjoying being held quite a bit at night. This idea was reinforced by the fact that his fussiness is only at night, he sleeps like a champ during the day.)

Our doctor squeezed us in this afternoon and after looking him over very carefully, said she could not find anything wrong with him.  She is thinking perhaps he has gas pains, which can be worse at night.  Josh's reflux adds to the equation, which makes for a very unhappy boy.  So for the time being, we are going to be doing mylicon, gripe water and Mommy is going to cut the dairy out of her diet.  We are hoping this will help our little guy to feel better and not be so fussy at night.   We will keep you updated on how this goes.

During the day, Josh is becoming quite the social little guy.  With just a little help, he is staying up for short periods of time after each meal during the day.  He is quite the cutie, looking around and taking in his world.  It is interesting to watch him as he is trying to figure out what is going on around him.  He frequently gives us a wide eyed look and makes and "o" with his mouth that is adorable.  We have been working on his head control and he is doing quite well.  He is able to keep his head steady all by himself most of the time.  He continues to enjoy meeting many of the people who have been following his progress over the last few months.

Josh is scheduled to have the ultrasound of his spine next Thursday.  Mommy and Daddy are hoping that the ultrasound will be able to provide us with the information we want to know and the news will be good.  The ultrasound is to help us determine if his hemangioma is a sign that he has an abnormality of his spinal cord that would result in him needing surgery.  We are praying that there is no spinal cord involvement.

Josh continues with his frequent doctors appointments next week.  He will be seen by our pediatrician (for labs and his synagist shot, which is to help prevent RSV infection) and the pediatric opthamologist.  We will keep you updated on the outcomes of these appointments.

Prayer Request:

• Josh's ultrasound of his spine show there is no involvement with his spinal cord
• Josh feel better and not having less fussiness at night so everyone can get some sleep
• The retinopathy in his left eye heals up completely
• Josh's lab work comes out ok and he tolerate his synagist shot well
• Mommy, Daddy, Josh and Mimi are able to get some good rest and catch up on their sleep

Praises:

• Josh is now 6lbs 3oz!
• Josh is having more awake time and exploring his environment
• Josh is healthy and doing very well as his due date approaches we are thankful he is doing so well

(Josh enjoying some tummy time with his cousin Noah)

(Noah is very intersted in Josh)

(Josh isn't so sure about Noah, although he did show Noah that he can turn his head)

(Charlotte finally getting to cuddle with Josh)

(Daddy trying to get the cuddleasaurus to sleep tonight)

Two weeks in, mostly smooth sailing

So Josh has been home from the NICU for two whole weeks!  It seems like it has been both longer and shorter than that...but that is how many things in life seem.  I am sure there will come a day when our time in the NICU is just a vague memory, we just aren't quite there yet. 

Josh has had several doctors appointments in the last few days.  On Monday we saw his pediatrician, where he weighed in at a whooping 6lbs!!  We are very proud of our little guys and his fabulous weight gain.  Our pediatrician continues to be concerned about his hemangioma and has decided to order an ultrasound to evaluate it.  As we explained last time, it is possible the hemangioma is sign of a tethered spinal cord, which would require surgery to fix.  Because an MRI would be hard on Josh (he would have to be sedated and intubated), we all decided that and ultrasound would be the way to go at first. If it is inconclusive, then we will do an MRI. We are thinking he will go sometime next week to have this done, although we are waiting for the appointment to be scheduled. Otherwise Josh is doing great and we won't have to go back to see her for two weeks when we get his synagist shot (to help prevent RSV) and a CBC (to check his blood counts).

We also had our follow up in Neonatology clinic yesterday.  They were very impressed with how well Josh is doing.  He has been doing well with his monitor, with his last recored bradycardia over a week ago (and his heart rate was only 79, which barely makes criteria).  Since he has done so well, Josh only has to wear the monitor at night time now.  This is a huge blessing to not have to cart the monitor with us every where we go.  They will read the monitor again at home in 10-14 days and if he is still doing well, we can stop using it!  Josh also had his circumsicion yesterday, which was tramatic for all, but he is healing well.

Today Josh saw the eye doctor again.  She said that the retinopathy of prematurity (ROP) in his right eye is completely gone!!!   This eye is now maturing normally.  The left eye still has some retinopathy which appears to be regressing.  They will continue to follow up very closely and we have another appointment in 10 days. 

He is continuing to do well with nursing and we have begun to wean his formula down.  We have decreased it twice now and are keeping a close eye on his weights at home using a loaner scale.  We want to be sure that he continues to gain weight well and have plenty of wet diapers too.  He continues to do well with the weaning of the thickener, although we have been stuck on the final stage of weaning for a few days now.  We are hoping we can finish weaning him this week, if he can tolerate it.  Josh's Mimi is staying with us for a couple of weeks to help out, and is having a good time getting to know Josh.

Josh's little personality continues to develop and it is fun to watch.  He has decided his favorite time for an awake time is 4am.  While he is wide awake Mommy and Daddy are barely hanging in there.  We are hoping he will get better adjusted soon.  Josh continues to be a cuddle bug.  His favorite place to take a nap is curled up on Mommy or Daddy's chest.  We have to admit, we love it has much as he does.  We have been enjoying showing Josh off to our friends and family.  He is a cutie!!

Prayer Request:

• Josh's utrasound show no connection between his hemangioma and spinal column
• Josh's ROP regress totally in his left eye
• Josh continue to gain weight well while being weened completely off of his formula supplement
• Josh sleep well, especially at night when Mommy and Daddy also like to sleep
• Josh heal up well from his circumcision

Praises:

• Josh now weighs 6 pounds!
• Josh has been home for 2 weeks!
• Josh now only has to wear his monitor at night
• There is no cuter baby in the world!

(Miss Joanie visiting with Josh)

(Mr. Ken and Miss Priscilla enjoying Josh's pirate face)

(Josh in his cute snugglesaurus outfit)

(Josh enjoying some time with his Grammie... I think she enjoyed it too!)

(Josh no sure what to think about his bouncy seat)

Our apologies for not posting sooner - we have been busy catching up with life after letting things go for the last 3 months.  The good news is we are almost there, so updates should come more often in the coming weeks.  Now on to our update (which is really long, an indicator that we needed to update sooner).

Josh continues to do well at home.  At his doctors appointment on Monday he weighed in at a whooping 5lbs 12oz!  That is a 7oz increase in 5 days!!  It is common for babies with reflux to over eat because it makes their throats feel better from the reflux, but of course leads to more reflux.  Since our goal is for Josh to be 100% breastfeed we have started weaning his formula while encouraging him to breastfeed longer.  We will begin tracking his weight closely at home (thanks to a loaner scale) during this process to make sure he continues to gain weight.  Josh was also changed to a new reflux medication, Prevacid because he refused to take his Prilosec, which tastes like soap (we taste all his medications).  As this blog is being written, our little guy is sleeping on Mommy's chest having episodes of reflux after eating too much.

Our doctor (who is a friend of Mommy's from Shands during her residency) said that he was doing very well.  She gave us some suggestions for dealing with Josh's constipation (which were very effective later that afternoon).  She also said his heart murmur is a little quieter then last time, so we will continue to follow it for the next several months and if needed, we will follow up with a pediatric cardiologist in a few months.  There was one area of concern for little Josh and that was with his hemangioma on his back.  Because his hemangioma is located over his spine, he will need an MRI to make sure that it does not have spinal involvement.  We are not sure yet when the MRI will be, but we will keep you updated.  It is possible that the hemangioma is a sign that that Josh might have a tethered cord, which would require him to have surgery to correct this and prevent any neurological damage.  Our doctor said that the odds for this are lower given the placement of his hemangioma, but just to be safe we will do the MRI at some point.

Mommy and Daddy have been slowly weaning down the thickener in his formula. We have been using the thickener to help Josh as he transitions to a mature suck, swallow, breathe reflex. He is doing well with this and is now only requiring a little bit of thickener. We are hoping to have him completely off of the thickener and transitioned back to breast milk only by bottle in the next few days.


Josh has not had another appointment with his eye doctor yet, so we don't have any updates on his eyes.  He has numerous appointments next week.  He will see his pediatrician, eye doctor and follow up in Neonatology clinic.  The appointment with neonatology promises to be lengthy as we will see a variety of people while we are there.  They will also check his monitor to see if he is having real events and determine if he will continue with the monitor for a bit longer.  When we had the training for the monitor we were told that it would go off frequently and have lots of false alarms.  We are grateful that this had not been the case with us at all.  It has gone off about 6 times since we got home and although we won't know for sure until they read it on Monday, but only 2 of them seemed to be real. 

Mommy, Daddy and Josh are very much enjoying being home.  Josh is developing a rhythm to his days.  He has two good awake periods, one in the morning and one at night.  He sleeps well the rest of the time, waking up for his feedings during they day and sometimes at night.  Josh is becoming quite the snuggler and loves to sleep on your chest with his head tucked next to or under you chin.  He has grown so much that he transitioned to newborn sized clothes this week.  They are a bit big, but he was not able to straighten his legs in his preemie clothes any more.  We are very proud of our little guy and how fast he is growing.

Prayer Request:

• Josh would do well with his new reflux medication and not have reflux
• Josh would continue to wean well from his thickener and be able to get back to being breast milk only
• Josh's eyes would continue to mature and his retinopathy of prematurity (ROP) would heal up
• Josh's heart murmur would completely disappear.
• Josh's hemangioma would not have any spinal involvement and his MRI would be negative
• Josh would do well with being transitioned to being fully breastfed

Praises:

• Josh is up to 5lbs 12 oz!!!!
• Josh is doing well with the weaning of the thickener
• Josh is now wearing newborn size clothes!
• Josh's constipation is doing much better

(Josh and Daddy enjoying some nap time together)

(Josh looking super handsome in his newborn clothes)

(Josh's first time in the swing - note his space heaters keeping him warm)

(I like this...I think)

(Josh taking a nap in his crib for the first time...his bed make him look so small!)

Fun times at the Cobb household

Josh has been enjoying being home and getting to meet so of his many admirers. Mommy and Daddy are getting used to the new routine, that thankfully does not involve trips to the NICU everyday.  Now that Josh is home, we are getting to experience the "newborn" phase of having a baby at home and find it both easier and harder then our previous routine of the last 11 weeks. 

Waking up for the middle of the night feedings has proven a bit harder for Mommy then we thought it would, probably because she has been storing up tiredness for the last few weeks.  Thankfully Daddy has been here to help with feeding and allow Mommy to get a bit more rest at night.  Although we had tried to sleep when Josh sleeps, our days have not gone quite like that.  Today was the first time we were able to do that, mostly because we didn't have other commitments to keep up with.

Josh has already had quite a few doctors appointments in the 6 days he has been home.  He has been to see his pediatrician - who thought he was perfect!  Josh does still have a heart murmur that they want to watch for the next few weeks to months and if it doesn't improve we will go see a pediatric cardiologist.  He will also be going to see the pediatrician weekly for the next few weeks to make sure he is continuing to gain weight.  Our next appointment got moved up some because Josh has been having issues with his prilosec and pooping.  Apparently Prilosec tastes just like soapy water (we know, we tasted it) and the taste can't be disguised in anything we have found so far.  That means Josh hasn't had this anti-reflux medication since Thursday.  We are hoping to get it switched to a different medication on Monday.  Josh seems to be having a bit more issues with his reflux, but nothing that isn't manageable while we wait.   He is also having uses with constipation.  The thickener we are using in his feedings can apparently cause constipation.  So our poor little man sometime cries with his effort to have a poop.  We have talked to our doctors office several times and started Josh on karo syrup once a day in his bottle to see how that will help.  We are still waiting for results.

Josh continues to do well with his feedings.  He has been eating quite a bit more since he was discharged.  He continues to be breastfed first and then offered a supplemental bottle.  He is nursing for longer periods of  time and still eating quite a bit of formula.  We have been working on weaning down his thickener in his formula and he is tolerating this well.  We are hoping to have him off of the thickener and back on supplemental breast milk in the next few days (he won't eat the breast milk with thickener).  We also have an appointment on Monday at the Breastfeeding Center to see what we can do to get Josh 100% breastfed.

Josh had a follow up appointment with his eyes on Friday.  This appointment didn't go quite as well as we had hoped.  The blood vessels in his eyes are continuing to mature and are still considered to be graded 2-3.  He has also recently developed some retinopathy of prematurity (ROP).  ROP is abnormal growth of the blood vessels in the eye into the clear gel portion of the eye.  You can read more about ROP here https://health.google.com/health/ref/Retinopathy+of+prematurity  Josh's ROP is stage one in both eyes.  His left is already starting to regress.  His right eye might be regressing, but the doctor wasn't sure, so he will be followed closely by his pediatric opthamologist until his eyes are full mature.

Despite these few obstacles, Josh is flourishing.  He is enjoying two to three awake periods during the day during which times he likes laying on his tummy, playing on his back or just talking to his parents.  He has found enjoyment in being bathed in a real baby bathtub - no fussy baby here during bath times.  He has also won over Mommy and Daddy's hearts even more with his cuddling after eating.  He likes to move while being burped so his head is right next to or under our necks and he cuddles in there.  Then he makes the sweetest noises while he is falling asleep - telling us all about his day.  We especially enjoy these times since they were so limited during his time in the NICU.

Prayer Request:

• Josh would be able to poop on a regular basis and would not have pain while pooping
• Josh's reflux would continue to be mild while we are waiting to change his reflux medication
• Josh's ROP would not progress but reverse itself and heal up on its own
• Josh, Mommy and Daddy would continue to get into a routine and enjoy getting acquainted with each other
• Josh would remain free of infections while his immune system continues to mature
• Josh, Mommy and Daddy would get rested up from their time in the NICU and develop good sleeping patterns

Praises:

• Josh continues to eat well and isn't too bothered by his reflux
• Josh is flourishing at home and enjoying time with Mommy and Daddy
• Josh is continuing to make good progress towards his milestones and is getting close to being caught up for his actual age (we hope this keeps up!)
• Josh is becoming quite the cuddler, which we all enjoy

(Welcome home banner for Josh - Thanks Berry, Dawn, Marietta, Andrew, Annaliese, and Mackiel!)

(Josh and cousin Noah visiting for the first time at our house - oh and the parents visiting too)

(Josh and his cousin Noah - Noah may be bigger but Josh is older!)

(Josh getting his first bath at home)

(Josh looking cute in his puppy towel after his bath - thanks Granddad and GG for the towel!)

(Josh and Mommy going out for their first stroll around the neighborhood)

(Josh having a good awake time with Daddy)

(Josh with a personal message to Aunt Fuddy)

As different as night and day.

First we would like to apologize for not posting a full update yesterday.  We all had a quite the crazy day and were just too exhausted to post a full update.  So here is yesterday's and today's update in order.

Mommy and Daddy roomed in with Josh in the "closet" in the NICU.  We spent the night trying to get some sleep while listening to all the sweet little noises Josh makes at night and being stuck on the terrible sleeping chairs provided.  While Mommy and Daddy didn't have a good night, Josh had a great night.  He had one episode of bradycardia during his 6am feeding, which resulted from trying to give him fortified breast milk without thickener (he apparently is a purist when it comes to his breast milk, he spits it out with the thickener in it).  We quickly switched him to nursing and some thickened formula and he did well with the rest of his feeding.  Mommy and Daddy were very comfortable with his home monitor and his feeding schedule.

Josh continued to gain weight well.  He was up to 2,406 grams, or 5 pounds 4.9 ounces.  After our long night, Mommy and Daddy were tired, but a little keyed up.  As we sat in our little closet watching our little guy sleep, our nurse practitioner was pleading our case with the attending - trying to convince the attending that Josh was ready to go home.  After some deliberation and discussion with us about our comfort level of caring for Josh, especially with his feeding issues, the attending decided that it would be all right for Josh to go home!!  In the mean time, Mommy and Daddy were convinced that this time (there had been 3 other "discharge dates" before now), Josh would be going home with us. 

Josh's discharge orders came in around 10:30am, and by noon, Mommy, Daddy, and Josh were leaving the hospital as quickly as legally possible, just in case the doctors decided to change their minds.  So Josh is home!!!

The rest of the day yesterday and today was spent resting, adjusting to having Josh home, trying to find a routine and restoring order to a house that has not been tended to much in the last 3 months.  Mommy and Daddy have also been working very hard to make sure Josh keeps his body temperature up.  With the current cold weather we are having, this has proven to be a bit harder then we thought Not that his temperature has been too low (we have been checking regularly) but our house has felt cold to us, so we are keeping a close eye on it.  We are pretty sure we have things figured out now and thanks to the space heater Grammie brought if feels more like the middle of August then the middle of February.

Josh had his first visit with his pediatrician today and she says that he looks great!  She did say that they would monitor Josh's heart murmur, and that if it does not go away, then he may need a follow up with a cardiologist.  Josh is on a apnea/bradycardia monitor at home, but has not had a single alarm since yesterday's 6am feeding.  He has an eye exam scheduled for Friday, a follow up appointment with his pediatrician next Wednesday (and once week for a few weeks to monitor his weight gain), an appointment at the neonatal clinic the following Monday, and a six month follow up with the hearing clinic.  Other than that, we have all just been enjoying being home.

That being said, we would love to have visitors come see Josh, but a few ground rules must be followed for at least the next three to six months.  Josh is still neutropenic, which means his immune system is weaker than normal.  This means that no children, and only healthy adults should come to visit.  After this, any visitors must wash their hands thoroughly before touching Josh.  If your children really want to see Josh, we can arrange a "window drive-by" where they can see him through the window. 

When interacting with Josh, people should be quiet and not do quick movements, as over stimulation can tire Josh out and he will just go to sleep.  He is still 37 weeks adjusted age, which means that even though he might be considered full term, he would still be a little early.  Also, he has been asked to do much more than he should for the last 11 weeks, which means he is very developed in some areas and a little less in others.  So even though he looks like a full term baby, he must be treated a bit differently while he catches up. 

We want to thank everyone for their love and support through this trying time for us.  We do not think we could have done nearly so well without you all.  Haley Long is going to start up meal rotations again, so if you would like to help, please contact her at haleyuf@hotmail.com.  Now that Josh is home, we will most likely not update this blog as often (daily), but we will post updates periodically. 

Daddy will be home for the next two weeks to help with the adjustment period and so he can spend lots of time snuggling with Josh.  Mommy will be home full time beginning officially next Monday, although she will not be returning to work before then.  We are excited to have the opportunity for Mommy to be able to stay home full time for this season of our lived.

Prayer Requests:

• Josh continue his good growth now that he is home
• Josh stay healthy and not get sick
• Josh maintain his ability to hold his body temperature well
• Josh's heart murmur go away on its own
• Mommy and Daddy catch up on much needed rest and develop a daily routine

Praises:

• Josh is home from the hospital!
• Josh's pediatrician says he is doing great!
• Josh met the cats!  They are not sure what to make of him.
• Daddy is able to be home with Josh for two whole weeks and Mommy will be home with Josh full time!

(View one of the closet)

(View two of the closet - yep, that's it, all the room you get for two adults and a baby)

(Mommy getting Josh all strapped into his car seat for the great escape!)

(He is definitely smaller than his car seat!)

(Our little family getting ready to go home (that is Josh's monitor on Daddy's shoulder))

(Sweet boy getting ready for his first doctors appointment - he is using newborn clothes as extra layers since they are still pretty big on him)

(Grammie and Josh sharing a moment together)

(Josh enjoying his first official tummy time)

(A full size view of our little pint size man - who was measured at 18.5 inches long today)

An update is coming

Josh had a full, but crazy day (all good).  Mommy and Daddy are pretty exhausted from rooming in with Josh last night, so did not complete a blog for today.  A blog will be posted tomorrow detailing everything that went on.  We did not want our faithful followers to think that something bad happened because there was no blog update.

Lets have a sleepover!

Josh had two bradycardias with his feedings last night. Mommy and Daddy were very disappointed because he had done so well this weekend. We worked very hard on his feedings, developing the proper technique and watching him very closely while he eats to make sure that his suck, swallow, breath reflex is going ok.  We are not sure what happened last night with his feedings, but he is doing much better today.  We think that the nurse who fed him last night did not watch him as closely as we normally do, since she had other babies that she was taking care of.

Mommy is continuing to work with the Occupational Therapist on feeding issues.  Josh tried thickened formula today and tolerated it extremely well.  The way it works is that a small amount of flavorless gel is placed into his feed (breast milk or formula), which thickens it just a little bit.  We will use the thickener during times when Josh hasn't rested well or appears tired.  This will help him to realize when he has too much formula in his mouth and to swallow instead of choking.  Part of his feeding issues are related to having been intubated (having the breathing tube) for so long.  The tube causes he palate to have a sharper/higher curve and decreased sensation.  While this will never return to normal, Josh will "grow into" it and it will become less of an issue over time.  In the mean time, we are waiting for him to mature. 

Because of the bradycardia issues last night, Mommy and Daddy are rooming in with Josh tonight, so that we can do all of his feedings (even 3 am).  Unfortunately, we have to stay in "the closet" instead of the "nice room" in the NICU.  The big difference is that there is no bathroom in "the closet," so Mommy and Daddy have to actually leave the NICU and go down the hall to the bathroom, and go all the way home to take a shower.  Josh did so well with his thickened feeds, and continues to do extremely well at nursing, that Mommy and Daddy think that this the best thing to do for Josh to be able to get him home as soon as possible.

In other news, Josh continues to gain weight.  Josh gained 20 grams last night and is now 2375 grams, or 5 pounds 3.8 ounces!  We are very excited about the fact that Josh seems to be gaining weight well now that we have his feedings pretty figured out.  We hope that this will also lead the doctors to an earlier discharge date.

Prayer Requests:

• Josh continues to eat well and gain weight
• Josh continues to not have bradys while we feed him
• Josh stay healthy and not get sick while in the NICU
• Josh's doctors have peace about sending him home soon
• Mommy and Daddy get adequate rest while rooming in "the closet" in the NICU

Praises:

• Josh gained weight again!  He is 5 pounds 3.8 ounces!
• Josh had not had a brady with us feeding him in over 2 days!
• Josh ate perfectly with thickened food

(Josh losing his hat like normal)

(Mommy and Josh having a good cuddle time)