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)

Sunday Sleep-a-long

Josh had a good day today.  He continues to feed really well, and the results of his good feedings yesterday were shown at his 9pm weigh-in. Josh was up 32 grams, back to 2,355 grams, or 5 pounds 3 ounces!  Josh seems to have developed his big boy suck and is now cruising through his nursing and bottle feeding sessions.  We are very proud of Josh and his weight gains!

Today has been a slow, sleepy Sunday.  The lack of sleep seems to be weighing heavily on both Mommy and Daddy today, as we have each caught each other starting to dose off as we sit cuddling Josh during the in-between periods around his feeding times.  The doctors are talking really positively about Josh and his progress.  We are hoping that translates into an earlier rather than a later discharge date.

Josh had a pretty impressive reflux/spitup today, where there were two rivers of white milk coming out of his nose.  Mommy quickly pulled out the bulb suction and cleared out Josh's mouth and nose.  Josh did not have a single brady throughout the whole episode, which goes to show how much of a big boy he is becoming.

Speaking of bradys, Josh has not had a single recordable incident in almost 48 hours.  This is very exciting news, because he has not gone this long without a single recordable event.  This also shows how much of a big boy Josh is becoming.  Bradys are pretty much the only thing that is being monitored now.  The doctors discotinued his oxygen monitor, so he doesn't have any desaturation alarms any more.  So the only alarms that can be written down any more are Bradys.

Prayer Requests:

• Josh continues his good feedings and continues to gain weight
• Josh continue to not have any bradys
• Josh stay healthy and not get any infections while in the NICU
• Mommy and Daddy get some good rest

Praise Reports:

• Josh is now back to 5 pounds 3 ounces!
• Josh was able to recover from a severe reflux/spitup episode without bradying
• Josh is eating like a big boy
• Josh is holding is weight really well

(I give up!  I am just too darn cute!)

(Why do you do these things to me?  I will burp when I want to!)

(Josh loves his Mommy)

(Mommy loves her Josher)

A sad update

When we got in this morning, we found out that the husband of the woman that Mommy made friends with here in the NICU died this morning. We cannot even imagine what she is going through, but we ask that you pray for her during this time.

A better day

Josh had a better day feeding today.  It looks like he has successfully made the transition from preemie feeding to baby feeding.  A preemie feeds by going suck, suck, suck, suck, swallow, breathe, breathe, breathe, breathe, suck, ...  A full term baby will go suck, swallow, breathe, suck, swallow, breathe, long breath, suck, ...

So, the transition between these two can be confusing for the baby, but the nurses have been telling us that it is like a light switch.  One day they have problems, the next they get it.  Josh had very poor feeds yesterday, and was very disorganized in his feeding attempt.  Because of this, he lost 32 grams, and so weighs 2323, or 5 pounds 1.8 ounces.  But Josh seems to have figured it out (for the most part) today, which means that hopefully he will be back on the weight gaining track.  Josh has also shown an increase in appetite today, nursing for good long periods and then taking large volumes of formula as a supplement.  Mommy and Daddy are hoping that this is the start of a growth spurt, which will result in Josh getting out of the NICU as soon as possible.

Josh has also been holding his temperature fabulously since moving over to this side of the NICU.  It seems like sitting in a cold draft can make a baby cold!  Who would have thunk it!  Mommy and Daddy are happy and encouraged by this.

One other note is that Josh has gotten so big since he was born that he is actually outgrowing his preemie clothes.  He is not quite too big for the girth of the clothes, but he is getting too long for them.  However his newborn clothes just seem like they will swallow him whole, so he will probably keep on wearing his preemie clothes for a short while.  Josh enjoyed his Grammie coming to visit him.  She brought some belated shower gifts with her that Josh will be using soon.

We have a special prayer request in our blog.  Mommy has developed a friendship with another of the mom's here in the NICU.  We saw her in the hallway today, and found out that her husband had an aortic aneurysm.  He has already had two major surgeries, and has had more than twice his blood volume transfused already, with more standing by.  This mom has a baby in the NICU who is 4 months old.  Please pray that God protect her husband, that He help the doctors and surgeons stop the bleeding and fix the aneurysm, and that He give her husband the strength to pull through this.  I know that at any time this could be scary and stressful, but combined with having a baby in the NICU, it must be even more so.

Prayer Requests:

• Mommy's friend's husband come through the surgery well and that his bleeding stop
• Josh continue to feed well so that he can gain weight well
• Josh not have any brady issues, even during feedings
• Josh continue to hold his body temperature well

Praise Reports:

• Josh is eating much better!
• Josh had some very good awake times and good cuddle time with Mommy and Daddy

(Josh sleeping comfortably this morning)

(Josh trying to sleep before his feeding)

(Josh enjoying his supplemental bottle)

Get me off this roller coaster ride!

The evening started off well, with Josh gaining weight again.  He gained 30 grams and is now 2,355 grams, or 5 pounds 3 ounces!  It pretty much went downhill after that.  We mentioned yesterday that we gave Josh a bath.  Well, he got cold after his bath and had to be put under a radiant heater for an hour to get his body temperature back up.  In the mean time, Josh had multiple brady episodes, because the body's natural response to getting cold is to slow down your heart rate.

So when Josh bradys, it tires him out, and he feeds really poorly, which makes it more likely for him to choke while feeding, and brady that way too.  Also, since he eats poorly, he doesn't get enough to eat, which means that he will not gain weight.    We also had an issue today with Josh not getting the right fortifier in he breast milk feedings.  The fortifier that was used is on that he won't eat because he doesn't like the taste of it.  Needless to say he did not do well with his two breast milk feedings at 3am and 6am.  Mommy and Daddy are hoping that Josh does not lose much weight tonight.

Josh also seems to be going through a transition between "preemie sucking" and "newborn sucking" in terms of his feedings. This means that he can get mixed up with how long and how hard to suck, and then forget to breath. This sets him back in terms of his feeding because he has more bradys while eating. Mommy learned a new feeding technique today, which involves only letting Josh suck for a few seconds and then taking away the food source, letting him breathe, and then starting the feed again. It takes significantly longer to feed this way, but the doctors say that they hope that Josh will only take a day or a few to transition over to a bigger boy suck.  In the mean time, Mommy and Daddy are again hoping that Josh won't loose too much weight from being too tired to eat as much.

It is frustrating for Mommy and Daddy as well, because the doctors have been talking a lot about discharge, and how it could be very soon, but then when all this happens, they go back to saying that he is just very small, fragile and not ready to go home.  Mommy and Daddy are very, very tired.  It has been almost 11 full, long, tiring weeks, and we just are not sure how much more we can handle.  That being said, we don't want Josh to go home before he is ready - it is just frustrating sitting in the NICU when they don't seem to be doing anything for him.


Another change today was that as the doctor was talking to Mommy about Josh's issues last night (Daddy was at work), he asked why it was so cold and drafty there in the corner where Josh was located.  (Of course, we have complained that it is cold and drafty there for two weeks, but who listens to parents anyway?)  So the doctor had Josh moved to almost the complete opposite end of the NICU.  It is not quite as visitor friendly as the space before, but it is definitely warmer, and no constant cold breeze.  With cold being the thing that set Josh back twice in a row now, we are definitely glad for this new space.

Josh is excited to see his Grammie tomorrow, as she comes to town for the weekend.  Josh looks forward to the day when he can play with the presents that Grammie is bringing with her.  Both Mommy and Daddy will be home tonight, as there was no room in the inn... err... hospital.  This is not a totally bad thing, as Mommy REALLY looks forward to sleeping in her own bed for the first time in almost three weeks.

Prayer Requests:

• Josh transition well and quickly in his feeding response, so that he can maintain good daily weight gains
• Josh stay warm now that he is out of the cold draft
• Josh not get sick while in the NICU
• Mommy and Daddy get good rest
• Mommy and Daddy can be patient and deal with the roller coaster that is this NICU stay

Praises:

• Josh weighs 5 pounds 3 ounces!
• Josh was moved and is out the arctic circle (aka the cold corner of the NICU)
• Josh had no issues with his RSV shot yesterday

(To see how far we have come... This is Josh on day #1)

(and this is Josh now at day #82)

Continued progress

Today overall was a pretty good day.  Josh gained another 60 grams and blasted past the 5 pound barrier.  He is now 2,325 grams, or 5 pounds 2 ounces.  He did pretty well on his feedings throughout the day, with only one brady event.  Josh roomed in with Mommy last night, and it was an experience for both of them.  Josh stayed awake a bit longer, probably from the lack of constant noise that he was used to in the NICU.  Mommy stayed awake because Josh was making baby noises.

The only other new event today was that Josh get his RSV vaccine.  RSV is a virus that is very mild in adults, but can be very dangerous for babies, as it causes a lot of mucus buildup, which can cause respiratory distress.  Josh also recieved his last dose of antibiotics this morning!

Josh also took his first bath in almost two weeks.  The bath seemed to go ok, and Josh screamed throughout it, but then he got cold afterwards, which concerns Mommy and Daddy very much, because we do not want this to set Josh back.  He seems to just be a little sensitive, as a preemie may be, and so we will have to be very careful to keep him warm around and after bath time, and not go immediately into a feed after without warming him up really well.  He was able to warm up pretty quickly, needing the heat lamp for only an hour to get his temperature back up.

Prayer Requests:

• Josh's issues around his bath time do not set him back and cause him to stay in the NICU longer than is necessary
• Josh stay warm and healthy
• Josh continue to eat well and have fewer (or no) bradys during and around feedings
• Mommy and Daddy get rest as they are both very tired

Praises:

• Josh is over 5 pounds!  He is 5 pounds 2 ounces
• Josh is eating well
• Josh is done with his antibiotics and got his IV out

(Josh voicing his displeasure at not being fed yet)

(Josh's cute foxy feet)

(A very squirmy baby during bath time)

(Josh getting his hair washed, and trying to squirm out of his Daddy's hands)

Yippee!!! A weight gain!

Josh had a good night last night. He had no real episodes of bradycardia or desaturation associated with his feedings last evening or today.  He did have one episode of breath holding in the evening associated with medication administration.  He turned a nice color blue that gave Mommy quite the scare, but recovered before the nurse could even make it over to his bedside.  We are now going to give him his medicines mixed in milk - they go down much better that way. 

Josh gained 92 grams last night and is now 2,265 grams (a whooping 4 pounds 15..9 ounces)!  We are very excited for this weight gain.  Because his weight gain was so good, we are not making any changes to his feeding plan for today.  He continues to do well with his breastfeeding/bottle feeding regimen.  He actually seems to be nursing better now that he is getting more to eat and he has even refused his supplemental bottle after nursing a few times.  Mommy and Daddy are very pleased with this turn of events!  We are hoping for more weight gain tonight.

Josh's blood counts looked good this morning. His hematocrit was 34, which is good and his white blood cells are working somewhat better than they were, although he is still considered neutropenic (meaning his is susceptible to infection). They plan on rechecking his blood counts again on Friday. If it continues in the same range then they will stop checking and allow his pediatrician to follow up on it once we are discharged (whenever that happens).

Josh has become quite the burpy baby in the last few days.  This is most likely associated with his use of the bottle.  He has burped so hard he knocked the pacey from his mouth a few times. His burps even attract the attention of passersby who feel the need to comment on his "man" burps.  The one good thing about burping is that is makes room for more food.

Daddy is continuing to not feel his best.  He has not been able to visit with Mommy or Josh for very long for the last several days.  Mommy is feeling pretty run down, mostly from lack of sleep (she hasn't gotten much the last few nights).  We are a little concerned that she might be getting sick, which would not be good for Josh since Mommy needs to be here most of the time to feed him. 

Prayer Request:

• Josh would continue to eat well and gain weight steadily and transition between the nursing and bottle feeding well
• Josh would not have any more bradycardia or desaturations
• Josh's reflux would continue to improve with the new medications he is on and he would outgrow it quickly
• Josh's white blood cells would begin to function normally and not fall so that he would not need a "work up"
• Mommy or Josh would not get sick with Daddy's cold and that Daddy would start to feel better

Praises:

• Josh gained weight and is now 4 pounds 15.9 ounces!
• Josh's reflux seems to be improved with his new medications
• Josh's feeding regimen seems to be working well and he is nursing for longer periods of time

(Sweet boy sleeping  in the hat his Mimi made him)

(Gotta love the monkey suit!)

(Mommy will you please stop taking pictures of me)

(Josh scooting out of his hat again)

(Look at that cute tummy!)

A time to eat, a time to reflux

Josh had several episodes of reflux accompanied by bradycaridas last night.  One of his episodes of reflux was so forceful he had projectile emesis - which was quite impressive.  Josh was not interested in nursing at midnight, so he received a total of 3 bottles of fortified breast milk last night.  After some experimenting we have found a bottle nipple that he likes and is able to eat from without causing him to "drown".   Josh lost 3 grams last night and his weight remains at 4lbs 12oz.  Needless to say Mommy and Daddy are a little frustrated that Josh can't seem to gain weight.

Josh continued to have more reflux today accompanied with bradycardia.  He had one episode so bad he refluxed milk out of his nose after a feeding.  After talking to the medical team for a while this morning, we have decided to make quite a few changes to his medications and routines.  They have stopped the zantac and instead are giving him prilosec, which is once a day (instead of 3 times a day) and tastes somewhat better.  They have stopped his erythromycin because they think it is contributing to the sudden increase in reflux (it can cause thickening of the stomach lining).  Instead he is now going to get reglan 4 times a day.  The plan is to watch Josh for a few days on these medications to see if they improve his symptoms of reflux (there is no way to cure reflux, only treat symptoms). 

In addition to the medication changes, there were also changes to his feedings in the hope that he will gain some weight.  Now after each time he nurses he will be offered a bottle of Similac Special Care formula and he can drink what he wants of it.  Then he will receive 2-3 bottles of fortified breast milk at night time.  The goal is for him to be able to get breast milk at each feeding without wasting milk if he does not want to eat after nursing (milk can only be heated up and used once).  If Josh continues to not gain weight then they will increase his formula and breast milk to be 27 calories per ounce.  Mommy and Daddy are hopeful that Josh will do well with this regimen and be able to start gaining weight.  We are also hoping that he will be interested in and continue to nurse well despite the supplementation.

Josh continues to do well socially.  He is thought to be quite the cute baby by all of his nurses and his parents would have to agree.  He does have quite an opinion about having to take so many medicines  - it can be rather uncomfortable to be too close to him when this happens.  He is starting to have better head control and can hold his head up for short periods of time when he is being held.  He is also starting to put things in his mouth (like his hand and his IV), which is a sign that he is progressing well developmentally.  He has actually already met all of his developmental milestones for a one month old baby (he is considered to be negative one month old developmentally).  Mommy and Daddy are very proud of our little guy!!

Prayer Request;

• Josh would do well with his new eating regimen and have some good steady weight gain
• Josh's reflux would improve with the new medication changes and his stomach lining would heal up from the erythromycin
• Josh would have little to no bradycardia or desaturations (which result from is reflux) so that he will have meet this discharge criteria
• Josh would not get any more infections while in the NICU and his bone marrow would catch up with his growth quickly so his immune system would work well
• Mommy would be able to keep up her milk supply and not become frustrated when Josh won't nurse.

Praise:

• Josh is doing well with his developmental milestones!
• Josh is holding his body temperature well
• Daddy is feeling better and hopes that after another day or two of herbs and vitamins that he will be cold symptom free

(Josh is having a good time lately taking his hat off and doing different things with it)

(Sweet boy waiting to have his diaper changed before his feeding)

(Big boy sucking on his fingers)

(Yeah!!  It's time to eat!!)

To eat or not to eat... that is the question.

Josh had a good night last night.  He tolerated his two bottle feedings quite well overnight.  He did not do as well with nursing this morning, he was sleepy at the first feeding and had several episodes of reflux.  At his next feeding, he had a hard time remembering how to nurse instead of bottle feed.  Although these issues were quite upsetting to Mommy and Daddy, he seemed to have figured things out again in time for his 3pm feeding.  Mommy is working the the lactation consultant to help Josh to be able to transition between the bottle and nursing.  We are hopeful that we will be able to keep him doing both well and eventually get him to be totally breastfed.

Josh did gain 7 grams last night and is still at 4lbs 12oz.  Although this isn't much, it does not reflect the changes we made yesterday to his intake.  Mommy and Daddy are hopeful that Josh will have more of a weight gain tonight.  After talking extensively with the nurse practitioner today, Josh was started on zantac (another reflux medication) and will be on it for a 4-6 week trial.  We are hopeful that this will help to decrease the acid in his belly so that his reflux won't hurt as much and prevent him from having bradycardia with it.  Josh also had his feeding tube removed today since he no longer needs it for feedings.  We are happy to have a clear view of our little man's face.

Josh continues on his antibiotics for another few days.  His blood cultures and spinal fluid cultures remain negative.  Josh will have another blood count check at the end of the week to make sure his hematocrit is ok and that he doesn't need another blood transfusion.  If he does happen to need blood, we now have another unit on hold for him thanks to Dawn!  We are hoping not to need it, but it is nice to know it is available just in case.

As much as we would love to announce something new and exciting everyday, it isn't realistic at this phase.  We are just biding our time, waiting for Josh to grow and be strong enough to come home.  We are anticipating this to be sometime soon, at least before his due date.  If you are interested in providing meals for us once we get him home, you can email Haley at haleyuf@hotmail.com.  She will be coordinating meals for us.  Thank you Haley!!!

On a sad/frustrating note, especially for Daddy, it looks like Daddy might be coming down with a cold.  This is frustrating for him, because he only got to see Josh for about two minutes today, not wanting to do anything that would set Josh back.  It is also frustrating for Mommy, who is stuck at the hospital all day and doesn't get to see him very much, because both of them don't want Daddy getting Mommy sick.  Daddy went and purchased copious amounts of over the counter cold medication in hopes of making a quick recovery.

Prayer Request:

• Josh gain weight with the fortified bottle feeding that he receives at night
• Josh not get lazy from easy bottle feeding and forget how to nurse well
• Josh rest well and have the energy to eat when it is the right time
• Josh and Mommy stay healthy and not get sick
• Daddy get to feeling better very quickly

Praises:

• Josh gained weight (even if just a bit) and is 4 pounds 12 ounces!
• Mommy has a room for the night again in the "nice" NICU room
• Josh doesn't have a feeding tube any more
• Josh's blood and spinal cultures are all negative
• Josh seems to be doing well with the bottle feeding/nursing combination

(Josh resting after his morning feeding)

*Josh being a big boy and putting his hands in his mouth)

Unknowns, Questions, and other unanwerable things

Today went by like the typical weekend day, with not much changing for Josh. Mommy and Daddy had a great time at Josh's baby shower yesterday, and were extremely grateful for the love of friends and family. Josh also got some very cute stuff, which he will definitely enjoy using in the near future. Mommy and Daddy had a good time telling Josh all about it today.

So the biggest thing that is keeping Josh in the NICU now is the fact that he is not gaining weight consistently.  He lost 12 grams last night, and is now down to 2168 grams.  This means that Josh has only gained 28 grams in the last week, which is much less than the 10 grams per kilogram per day that they want him to average.   Josh doesn't have the stamina to nurse long enough to get enough calories to gain weight or maintain his body temperature. Josh's stamina and muscle tone is improving as he gets closer to his due date, but it will be weeks before he is able to take a full feeding while nursing.

Right now, Mommy and Daddy are at a loss as to how to get more calories into Josh without tiring him out.  What we worked out with the doctors for now is that Josh will be bottle-fed two to three times a day with fortified breast-milk, which has extra calories, as well as will be supplemented by bottle after nursing sessions if Mommy does not feel like he ate long enough or well enough.  Hopefully these extra calories will be enough to get Josh gaining weight like we would like.  Bottle feeding requires an additional skill set, but makes eating much easier on Josh.  He seems to have mastered this skill set, so we are hoping to use it to help him to gain some weight so we can go home soon.  It was a hard decision for us to make, but we feel that we need to do the best thing for our little guy despite our desire for him to be breastfed only.  He will continue to breastfeed for his other feedings and will hopefully be able to transition over to be totally breastfeed sometime in the future.

Josh continues on his antibiotics and is back to his old self.  He was weaned from the radiant warmer today and is doing a good job of holding his body tempearture on his own.  We are hopeful they will take the warmer from around his bed later today.  Josh has enjoyed meeting many members of his family that were in town for his shoer, including his great grandmother for the first time today, which they both enjoyed very much. 


Prayer Requests:

• Josh wake up well and eat fully when it is time to eat
• Josh be able to take in enough calories to grow big and strong
• Josh be able to maintain his body temperature and not get cold
• Josh not get sick while in the NICU
• Mommy and Daddy be able to let go of their preconcieved notions of exclusively breastfeeding, if this is not working for Josh

Praises:

• Josh, Mommy, and Daddy have amazing friends and family who love us a lot
• Josh has a plan now for his feedings
• Mommy was given the "nice" room in the NICU to sleep in again tonight

(Josh's cake at his baby shower - thank you Suzann!)

(Josh peeking out from his covers wondering where dinner is)