Sleepy Saturday

Saturday has gone by pretty uneventfully, which is good after the past few days.  Josh's blood cultures and spinal fluid have not grown any bacteria at all, which is good.  His repeat CBC shows that he is neutropenic, which means that his immune system is low and it is more likely that he would get sick.  This is actually pretty common among babies, and especially common among preemies.  This is because while a baby is in the womb, the baby gets its immunities from the mother.  The main thing with this is that Josh will have to be isolated after he comes home, with only healthy adults coming to visit, and not going to public places for a couple of months after he is home.

Josh did very well in eating yesterday and today, and that was shown by a 68 gram weight gain, so that he is now 2180 grams, or 4 pounds 13 ounces.  Josh is just 3 ounces away from the 5 pound threshold!  The doctors told us that we should go back to doing kangaroo care, since it helps alot with body temperature regulation.  We haven't done much kangaroo care in the last three or four weeks, so we were very happy to do this.  Mommy got the first round of kangaroo care today, and Daddy will hopefully get some time tomorrow.

The doctors said that they are just waiting to see how Josh does and recovers from his little setback at the end of last week.  Josh needs to be gaining weight consistently (a weekly average of 10 grams per kilogram per day), he needs to be able to hold his own body temperature (not use the radiant warmer that he is currently under), and not have any more apnea/bradycardia/desaturation issues.  It looks like the doctors may discontinue his reflux medication to see if he has outgrown his reflux issues.  He could still have reflux, but if it does not cause him to stop breathing and his heart rate to decrease, then that would be all right. If he still has issues, then they will probably put him on a medication that would be easier for him to be given when he goes home.

Mommy and Daddy are also welcoming lots of visitors to town, as Josh's baby shower is tonight!  We look forward to celebrating his birth with friends and family.  We just can't wait until we can take Josh home.  His bedroom is also almost completely done.  We will post pictures of Josh's room when it is finished.

Prayer Requests:

• Josh continue to gain weight steadily and not lose weight
• Josh be able to hold his body temperature and not get cold
• Josh not have any issues breathing
• Josh not get sick or develop any infections while in the NICU
• Mommy's milk supply continue to increase to meet Josh's demand
• Mommy and Daddy get the rest that they need to be a good support for Josh

Praises:

• Josh is up to 4 pounds 13 ounces!
• Josh had a good day eating today
• Josh's baby shower is today!

 

 (Mommy and Josh enjoying a tender kangaroo care moment)

  

 (Josh thinking that there aren't many more comfortable places than where he is now)

  

 (Josh's cute outfit with "need a lift" on his feet)

  

(Josh all done being changed and ready to be bundled up and start nursing)

Josh had a slightly better night last night.  His feeding tube was replaced last night so that he could recieve supplemental feedings when he was too tired to nurse.  He continued to be very tired when nursing and only had half feedings most of the night.  Because the feeding tube was back in and Josh was so tired, Mommy skipped the 3am feeding so everyone could catch up on some sleep (the nurse fed him through his feeding tube).   By 6am, Josh was a different boy.  He was very awake and ready to eat.  Despite his poor eating yesterday, Josh gained 17grams and his weight is 4lbs 10.9oz.  We are very excited that he did not lose weight during all of this ordeal.

He has had a much better day today overall.  In addition to eating well he has also been able to rest well between feedings.  His blood cultures from yesterday are still negative and his spinal fluid looked good.  If his cultures remain negative for 48 hours then they will stop his IV antibiotics.  Josh has much pinker cheeks after recieving some of Uncle Steve's blood.  He is doing a much better job of maintaining his temperature today, although it has been on the low side of normal most of the day.  Josh also had another CBC (blood count) done today and it showed that his immune system is working at full speed again.  Because this information conflicts with the test done yesterday he will have labs drawn again in the morning to see which results were erounous.

After talking to our nurse pracitioner, Mommy and Daddy think that all of this might have been caused by Josh's low body tempearture and not by an infection.  The baby next to Josh also had to be placed back under a warmer yesterday (we speculate it is because of the temperature of the NICU in that corner).  Apparently when a preemie becames as cold as Josh did it is very hard for them to get their body temperature back up - it can take several days for them to be able to regulate their temperatures again.  It also uses up lots of calories in a preemie baby.  Having a low body temperature can cause the baby to be lethargic, have bradycardia, apnea and not eat well.  Mommy and Daddy will be very concious of Josh's body temperature when he goes home.  (If anyone in the Gainesville area has a space heater we can borrow for a short time we woud greatly appreciate it.  Please either email us flip.and.chrissy@gmail.com or post a comment and we will get in contact with you.) 

Mommy and Daddy are hopeful that Josh's blood cultures will remain negative and that they will be able to stop his antibitoics tomorrow.  We are also hopeful that Josh will be back fully to his old self within the next few days.  Mommy has been working with Josh today using the supplemental nursing system we created.  It has been pretty successful, although it currently takes an additional person to operate it.  We are hopefully this system will help Josh to be able to take in the extra food he needs until he is able to breastfeed fully. 

Mommy and Daddy are looking forward to celebrating with everyone at Josh's baby shower tomorrow.  We feel so blessed to have Josh in our lives - he is truley a miracle baby!!

Prayer Requests:

• Josh continue to have the energy to feed well
• Josh continue to gain weight (he is 4 pounds 10.9 ounces)
• Josh continue to hold his body temperature
• Josh learn how to take additional feeds
• Josh, Mommy, and Daddy get good rest

Praises:

• Josh gained 17 grams yesterday!
• Josh did well eating extra breastmilk through several different SNS methods
• Mommy and Daddy were able to keep the room they are staying in for another night
• Josh is doing much better after getting some of Uncle Steve's blood

(Josh getting blinded by an inadvertent flash in the morning)

(Josh sporting his new IV and feeding tube)

(Isn't he just the cutest baby ever?)

(Josh trying to take some pictures of his own)

A poopy day... and not the good kind

Last night and today were hard days for Josh.  The night started off with Josh getting pretty cold, which caused him to have more bradys, as well as to be lethargic.  It turned out that at 6:30 pm, Josh's nurse took his temperature and it was low, but she didn't tell Mommy.  Well after that Josh had two breastfeeding sessions of an hour or so, both of which he was not bundled up, because he has been too warm to stay awake in the past.  We also decided to do Josh's car seat test, which involves him sitting in his car seat for an hour and a half barely bundled up.

So, after discovering that Josh was very cold in the late evening, he was put under a radiant warmer, which brought up his temperature, but he has had problems keeping his body temperature up throughout the day.  Because of this, Josh had to have a whole bunch of labs drawn to test for infections, which can also cause his body temperature to drop.  Josh even had to have a lumbar puncture (spinal tap).  Josh is also going to get a blood transfusion (thanks Uncle Steve!), because his hematocrit is low.  Fortunately, Josh still has some blood in storage for him.  Today was almost the last day that the blood was still good, so we are having a friend go and donate blood for him tomorrow (Thanks Dawn!).  Josh was also started on antibiotics in case he has an infection and will be on them for at least 48 hours.  He has an IV placed in his left hand so that the antibiotics could given.

Another result of the blood tests that they took is that his total white blood cell count is low, which means his little immune system is not working very well at all. The doctors say his white blood cell count is low because his little body is growing quickly and his bone marrow can't produce enough blood cells fast enough yet.  It makes Josh more susceptible to illnesses and infections.  This means that even when Josh comes home, that Mommy and Daddy will have to be very careful with how they take Josh outside of home.  Also, we will have to be very selective in who can have contact with Josh, as the littlest bug could make him very sick.  The nurse practitioner said that he will have to be isolated like this for several months after going home.

Because Josh had so much done to him today, he was very tired out, and so ate very poorly in the afternoon and evening.  This is of course a self worsening cycle, because if he doesn't eat, then he doesn't gain weight and have the energy to eat more.  Josh may have to have his feeding tube put back in so that he can at least be given breast milk, even if he is asleep.  Josh ended up losing 17 grams (4lbs 10oz) last night, which could be directly attributed to being cold and burning excess calories to try to keep his little body warm.  Needless to say, today has been very tiring, frustrating, and scary for both Mommy and Daddy.

Prayer requests:

• Josh's blood cultures come back clean
• Josh get good rest so that he has the energy to eat well
• Josh hold his body temperature
• Mommy and Daddy have peace and get better sleep
• Josh get better so that he can come home soon

Praises:

• Josh passed his car seat test with flying colors!
• Mommy is in the slightly more comfortable room for one more night!
• Josh is able to get some of Uncle Steve's blood to help him feel better
• Josh has had two successful feedings using a modified supplemental nursing system

(Josh trying out his car seat during his car seat test - to make sure he doen't have apnea while in it)

(Josh enjoying his car seat test, he is so little compared to his seat!)

(An alert Josh sucking on his pacey after eating a large lunch and before all his tests)

(Pale baby boy resting after being poked and proded today)

Food for thought

Not a whole lot happened today.  Most of the day was spent experimenting with different supplemental feeding methods to see what would work best to get Josh to consume more breast milk, and gain weight more consistently.  After a down day in weight yesterday, Josh gained 24 grams today and is up to 4 pounds 10 ounces.  This was of course very encouraging news to Mommy and Daddy.

The different types of supplemental feedings that were tried today include the following:

1. Bottle feeding
2. A factory made supplemental nursing system (SNS)
3. A SNS that we made ourselves by cutting the tip of a bottle nipple off and snaking a feeding tube through it
4. A syringe connected to a feeding tube
5. A feeding tube connected directly to a nipple shield

Josh started off with the bottle as a supplement after nursing, and he did well with his first try.  His second and third tries did not go so well, and Mommy and Daddy were left wondering if it was the bottle, or Josh's age, or just that he was tired.  The different forms of SNS had moderate success, but Josh still either seems to not get enough, or get totally flooded with milk.  So there are still some kinks to work out.

The supplemental feeding is Josh's biggest hurdle right now to getting out of the NICU, because increase milk intake means increase caloric intake, and therefore increased weight.  At the same time we do not want to make him work harder for his increased milk intake because that could then just balance out the increase, or even overwhelm it.  Once we have Josh gaining weight consistently, while just being fed orally, we are that much closer to him coming home!

Prayer requests:

• Josh take to the supplemental nursing systems so that he can gain weight consistently
• Josh not have trouble breathing, or choke on breast milk while we are trying new systems
• Josh sleep well during periods when he is not feeding so that he does not expend his energy too quickly
• Josh stay healthy and not develop any new infections while in NICU
• Mommy's milk supply increase to meet Josh's increasing demand

Praises:

• Josh gained weight and is up to 4 pounds 10 ounces!
• Josh is getting closer to being exclusively orally fed
• Mommy got the nicer room to stay in at the hospital for at least the next two nights

(Josh enjoying some pacey time - building up those sucking muscles)

(Josh waiting not so patiently to get his diaper changed so he can eat)

(Mommy giving Josh is first bottle (thanks Haley for taking the picture))

(Handsome boy without any tubes on his face!!)

Ears are for hearing...

Josh had a good night last night.  He did well with his feedings and had only a few desaturations.  He continued this pattern today, with just a few bradycardias and desaturations.  He has not had any apnea in several days and the ones documented we are not convenced were apnea.  Josh continues to do well with his brestfeeding and seems to be getting stronger.  Mommy and Josh attempted the supplemental nursing system (SNS) several times today with limited success.  We will continue to work on getting this part of the feeding plan in place.

Josh lost 47 grams overnight and now weighs 4lbs 9.75oz.  Mommy and Daddy are a little disappointed at the weight loss, but this is all part of regulating out his feedings to get him ready to go home.  Even with the weight loss, the doctors have not made any changes to his feeding plan as of right now.  Remember, Josh has to gain weight for several days before he can go home.

Josh continues to explore the world around him.  He has expressed his displeasure at not being able to see what is going on around him, especially when he is trying to fall asleep.  Josh was working very hard today to pull down or push up the blanket used to keep his open air bed dark.  He fusses until someone positions the blanket so that he can see.  We now position it at an angle and this seems to meet his little needs.  He has also started starteling himself awake if his arms are left unswaddled when he is trying to fall asleep.  As soon at those arms are tucked it, he goes right to sleep.

Josh reached another milestone today - he passed his hearing test!!  They use a new method to test the hearing of infants.  They place electrodes behind each ear and on his forehead.  Then a probe is placed in his ear and a sound is made by a computer and the computer uses the electrodes to track how soon the single reaches his brain stem.  Josh slept right through this test, which is required for it to be accurate.  Because of his prematurity, Josh will be followed by an auditoloist every 6 months until he is 3 years old.

After 9 straight days of rooming in, Mommy had decided to take a break for the night.  After completing Josh's 9pm feeding she is going home for some good sleep in her own bed.  The plan is for her to be back at the hospital for Josh's 6am feeding.  Needless to say after such a long time away from home, Mommy is ready to sleep in her own bed!

Prayer Request:

• Josh do well with the changes to his feedings and begin to gain weight again
• Josh and Mommy be able to master the use of the SNS so that Josh will not need his feeding tube anymore.
• Josh not have any more bradycardia or desaturations during his feedings
• Josh not get any infections while in the NICU
• Mommy and Daddy be able to get some good rest tonight

Praises:

• Josh passed his hearing test today!
• Josh continues to do well with his breastfeeding
• Josh is learning to express his like and dislikes
• Mommy is going to sleep in her own bed tonight

(Josh sleeping peacefully)

(Josh showing his displeasure at being awoken)

(Mommy tring to calm down a flailing Josh before his feeding)

(An upset Josh getting his daily weight taken... who wouldn't be upset at always being weighed in his skivies?)

(A much more comfortable Josh ready for his meal)

Fussy monday

Who really likes Mondays?  Apparently even small babies like Josh do not like Mondays.  Josh was a lot more fussy today than he has been in the past.  It might be because he is starting to explore his surroundings a little bit more.  Josh spent the early part of the day reaching up out of his open crib and swatting at the blanket that is placed over the top to shade him from the bright lights.  He would push on this blanket until it had enough slack to fall down on his face, and then he would cry.  This cycle happened a couple of times until Mommy angled the blanket so that Josh could see out of the crib, and then he calmed down.

Mommy is doing as well.  She slept pretty decently on the pull out armchair that is in the little "closet" that she roomed in last night.  The nice bigger rooms are still full, but the "closet" was still free, so Mommy is going to spend another night in there.  This is a daily ritual, where in the morning she has to ask to see what is available before knowing if she is actually going to have a place to room in.  The doctors have told us that this is the absolute best thing for Josh right now, being able to get 7 breastfeedings from mommy each day.  Being able to get all of his nutrition orally is one of the steps needed to complete before going home.

In order to help accomplish this, Daddy went out and bought an SNS (supplemental nursing system) today.  This is basically a bottle with a tube attached, which snakes down into Josh's mouth as he is nursing, and helps him get more nutrition without working harder to get it.  It is a way to avoid bottle feeding while still being able to give Josh more food.  So getting this system to work is very important to Mommy and Daddy.  The doctors have also switched the fortifier that they are putting into Josh's pumped breastmilk to something called Neosure.  This is the same fortifier that Josh will probably be on when he is discharged.

Josh's desaturations have also done much better, and he has not had any apnea in days.  These are both also steps towards getting discharged.  Josh is getting a little antsy to get out of the hospital, especially when he was told that his cousin Noah is going to be born any minute now.  Mommy and Daddy are hoping that with all the steps that he is accomplishing, that Josh will definitely come home during the time period that the Doctors told them.

As far as Josh's progress, he gained 11 grams last night and now weights 2140 grams, or 4 pounds 11.5 ounces!  We are getting ever closer to that 5 pound mark!  Some important milestones happening this week are that he has his third eye exam on Friday.  We are hoping that he grades out at a 3 this time.  Josh will also be at an adjusted age of 36 weeks on Saturday, which is almost considered full term.

Prayer Requests:

• Mommy and Daddy learn how to operate the SNS system - this is very important to getting Josh home as it is how we can ensure that he can get extra food (calories) while still breastfeeding
• Josh's issues with reflux are healed and that he no longer has bradys associated with feeding
• Josh go the required 7 days without apnea
• Mommy get good sleep in the not-so-ideal sleeping location of "the closet"

Praises:

•  Josh's apnea seems to be gone (it would have returned by now if the caffeine alone was keeping it away)
• Josh's desaturations seem to be coming less often
• Josh now weighs 4 pounds 11.5 ounces!
• Josh seems to be taking in more of the world around him

 

 (Josh resting comfortably on Daddy's chest after a nice feeding during Daddy's before work visit)

  

(Josh looking around after his face was exposed)

Note: Sorry, a lot of pictures today turned out to be too dark to see anything

Quiet Sunday

Josh had an several more episodes of desaturation and bradycardia last night and today.  Most of them were associated with feedings, although he did have one while he was asleep. Mom and Dad are a little discouraged that they are increasing instead of decreasing.  Josh has been doing well with his feeding however, eating 7 times yesterday, some of them more than 15 minutes. Josh also gained 29 grams (2129), which is 4lbs 11oz!  He is quickly approaching 5lbs.

Since Josh is doing so well with his feedings, they have decided to only supplement him after breastfeeding everyother time.  He seems to be tolerating this ok, although he is waking up really wanting to eat each time now (which is good for him).  Mom has been able to feed him when he wakes up and those times seems to be going well (other than the bradys).  We won't know until he is weighed later tonight whether he is getting enough to eat or not.  The nurse pracitioner said that he is averaging 36 grams a day of weight gain, which is high for a preemie, so he needs to gain a little less any ways.

Besides waking up ready to eat, Josh is becoming a bit more vocal during diaper changes.  He remians true to form however and his fussing lasts for just a few seconds before he returns to his normal watchful self.  The nurse frequently tell us that he seems to have a very calm nature, which we have to agree.

Mom continues to room in at the hospital, although she has lost her really nice room.  Instead, she is staying in what is know in the NICU as the inner room or closet.  It is a small room with a sick and a pullout bed.  It isn't the Ritz, but it will do for tonight.  We are hoping to be back in the nicer room over the next few days.  One perk to this room is that is comes with meals.

Prayer Requests:

• Josh eat well, fully, and without any bradys
• Josh continue to gain weight
• Josh not have any more reflux that affects his breathing and eating
• Mommy's milk supply increase to meet Josh's needs now and in the future

Praises:

• Josh is up to 4 pounds 11 ounces!
• Josh is doing very well holding his body temperature in his open crib
• Mommy found a place to stay in the hospital

(Please, no pictures... not before my morning cup of coffee... err.. breastmilk!)

(Josh getting a diaper change before getting fed)

(Where's dinner?)

(Josh discovering that he can sleep with a finger up his nose)

A slow weekend

Since today is a weekend day (Saturday), not much is expected to change.  The weekend staff just continue doing what was done during the week.  Josh continues to breastfeed 7 times a day, and is doing pretty well.  His weight increased last night to 2,100 grams (4 pounds 10 ounces).  He still is having the occasional desaturation and brayicardia associated with his feeding, and we found out that they are starting to count them, since he can't have any bradicardia for a week before being discharged.  So we are praying that this will go away soon so that he can be discharged as soon as possible.

Josh slept most of the day, and his parents used the day to rest (Mommy) and catch on a bit on some house projects that have fallen to the side since Josh was born (Daddy).  The one new thing is that Mommy has been trying to use a SNS (supplemental nursing system) to try to give Josh a bit more milk during his feedings, since he is still not able to eat enough milk from breastfeeding alone to continue to gain weight.  The results today were not good, as Josh got too much milk, choked and sputtered some, and then promptly desaturated and had bradicardia.  Mommy will try again when the lactation consultant comes by again.  Josh is however coming more demanding when it is time to eat.  If he is not feed in a timely manner he begins to fuss just a little.  He calms down quite quickly when it is explained to him that dinner is on its way.

Prayer Request:

• Josh grow stronger and feed better so that he can get enough nutrition through breastfeeding alone
• Josh continue to breathe well, and that his reflux not cause any desats or bradys
• Josh continue to hold his temperature well so that he can stay in his open crib
• Josh stay healthy, and not get any infections or get sick while in the NICU
• Mommy and Daddy stay patient and not get frustrated with trying to get Josh ready to come home

Praises:

• Josh is up to 4 pounds 10 ounces!
• Josh has done really well in his open crib
• Mommy continues to be provided with comfortable room to use at the hospital, which provides a convenient place to rest while still staying close to Josh

(Josh sleeping this morning with the blanket that his Grammie gave him)

(Such a cute sleeper!)

(An energetic Josh getting changed)

(Josh in his new clean outfit)

(Josh back to sleep in the afternoon - this time with the blanket that Aunt Lindsay gave him)

The baby with the healthy brain

Josh had a pretty good night, although he had several desaturations related to feedings.  Josh has had only one episode of desaturation today during his nap and he was able to recover on his own.  Josh is now breastfeeding 7 times a day for a average of 15 minutes a feeding.  Mom and Dad are very proud of our little man.  He is weight is up 75 grams (although they used a different scale so it might be off some, we will have a better idea of weight gain with tonight's weight) and is now 4lbs 9oz!  Josh continues to get a half a feeding via his feeding tube after nursing.  If he continues to gain weight then they might consider changing it to half a feeding every other nursing.  Mom did attempt to use a supplemental nursing system today with some success.  Josh was able to take half of his bolus feeding during his normal nursing time.  Josh was not a huge fan of the system, but we will keep working with him since it is a reasonable way for him to go home if he isn't able to take a full feeding.

Josh had his MRI of his head this morning.  This is something that is done routinely for preemies after 6 weeks of life and before discharge.  It is done to make sure that he did not have any issues related to hemorrhage from when he as born.  Results just came in - his MRI is normal, showing a premature brain, which is appropriate because he is premature!!!  No signs of bleeding or any other abnormalities!!!!  This is one huge milestone for us to overcome.

Josh continues to do well in his open crib.  He has been able to hold his temperature well despite the sometimes chilly conditions in the NICU.  He was also tagged last night with a baby anti-theft device called a huggs tag.  He will wear his little anklet until he is officially discharged and comes home with us.  Mom and Dad are a little disappointed that they can no longer sneak off with Josh in the middle of the night.

Josh is doing a good job of balancing sleep with some awake times during the day.  He seems to have these times in the morning and in the afternoon/evening close to when Dad arrives from work.  Mom and Dad enjoy interacting with him during these times.  Josh is also becoming quite the snuggler.  He enjoys sitting upright with his head on your shoulder, especially after eating.  He snuggles his little head down in the croock of your neck and gives little contented sighs. 

Mom continues to room in and is very thankful to be able to stay at the hospital another night.  Dad enjoyed a slightly interrupted night's sleep with Mom last night at the hospital.  We are thankful that Dad is able to stay with Mom from time to time as they miss each other when apart.  Hopefully we will only continue this set up for a few more weeks and then Josh will be home with us.

Prayer Request;

• Josh would not have any apnea now that his caffeine has been stopped
• Josh would outgrow his desaturations and bradycardias so that we can being the count down to discharge (he can't have any desaturations, bradycardias or apnea for one week prior to going home)
• Josh would continue to do well with his feedings, taking more milk each time he eats so that he is able to take a full feeding each time he nurses
• Mom and Dad would be able to get some extra rest this weekend and Mom would be able to continue to find places to room in

Praises:

• Josh's MRI was normal for a premature baby!!
• Josh's weight is now 4lbs 9oz!!
• Josh is doing well in his open air crib
• Josh is settling into a good schedule of eating, sleeping and awake times that will be compatible with going home
• Mom is able to room in at the hospital for another night.

(Josh resting comfortably in his open crib)

(Josh in his cute penguin outfit his Aunt Anita and Uncle Nick gave him - it's Mommy's favorite!)

(Josh's huggs tag on his left leg... his antitheft device)

(Josh nice and bundled up wearing the hat Mimi gave him)

(Josh and Daddy having a great time after a burping attempt)

Baby steps towards discharge

Josh had a great night.  He has been doing every 3 hour feedings for the last 24 hours, expect for one time at night.  He misses that feeding to give Mom a chance to get more sleep at night. Josh gained 38 grams last night and is now 4lbs 6.5oz!  He is doing well with his feeding averaging 15-20 minutes a feeding.  He seems to be getting good milk even though it is hard to quantify exactly how much he is getting.   Josh does seem to have most of his desaturations and bradycardia associated with breastfeeding - this is most likely either related to reflux or a lack of coordination with his suck, swallow, breathe reflex.  Josh continues to recieve half a feeding through his feeding tube after each time he breastfeeds.  Mom spent a good bit of time talking to the attending physician today, trying to feel out what comes next for Josh and what milestones we need to reach.

Tomorrow Mom and Josh will try breastfeeding using a supplimental nursing system.  The system is designed to increase the volume that baby takes in while not increasing the work required to eat.  The doctors are hoping that this will eliminate the need for Josh to be bolused with half a feeding through his feeding tube after breastfeeding.  They are also hoping that it will decrease the effort required to obtain a full feeding which might decrease his bradycardias and desaturations while eating.  Josh can go home on this system and it will only be used while he grows more and is able to eat better and grow stronger.  Mom and Dad are hopefull this will help Josh with his feedings and be another step towards discharge.

Josh will also continue to his erythromycin for at least 2 weeks after he is discharged from the hospital.  The attending feels that it works really well for Josh and that it is the best drug choice because it effects the whole GI tract to increase motility.  The drug does have a slight increased risk for thickening of the mucosal lining with prolonged use, but this risk is very small.  The attending also feels that Mom and Dad will be able to monitor Josh for signs of this at home and take him to his pediatrician immediately if needed. We are glad Josh will continue on this medication because it has had a huge impact on his desaturations.

Josh also had his caffiene discontinued today.  He has been on this since he was born.  It is used in preemies to stimulate his brain while the brain is still developing.  The main objective is to help Josh's brain to remember to breathe so that he doesn't have any apnea.  Josh has been slowly "outgrowing" his dose and today they stopped it completely.  It takes about a week for his body to completely be rid of the caffiene, so he will be monitored closely over the next week for episodes of apnea.  Mom and Dad are hopeful that Josh will do well and not have any episodes from now on.

Josh graduated from his isolette to an open crib today!  We are very proud of our little guy.  He has shown over the last few days that he is able to hold his body temperature well in the isolette, so they are giving him a try at being out.  So far he has been able to hold his body temperature well for the last 8 hours - despite the fact that the NICU has been very cold today.  We are hopefull he will be able to continue to do well in the open crib.  Now that he is in one, the nurse try to treat him as if he were home.  That means no more tummy sleeping and no more proping him up to help with his reflux.  This is another exciting step towards discharge.

Mom continues to room in and has been very thankful for her accomodations.  She is staying in a rather large hospital room, which is big enough for two beds with room left over.  Mom definitely feels better today after getting to sleep for about four and half hours of uninterrupted sleep.  Dad too is feeling better after getting to spend the night at home sleeping in his own bed.   We are very thankful that Mom has been able to secure the room for another night and feel that being at the hospital as much as possible will help Josh come home sooner and ease his transition home.

 Prayer Request:

• Josh  continue to do well with his breastfeeding and that tomorrows trial with the supplimental nursing systme goes well
• Josh would grow and mature quickly over the next few weeks so that he does not have any desaturations or bradycardias, espeically while feeding
• Josh would do well with having his caffine stopped today and would not have any apnea as it slowly leaves his system
• Josh would continue to do well outside of his isolette and not have any problems with keeping his body temperature up and gain weight even though he is using extra calories
• Mom and Dad would continue to adjust to their temporary roles and seperation

Praises:

• Josh is now 4lbs 6.5oz!
• Josh was taken off of his caffine today
• Josh is out of his isolette and doing well
• Josh is making good step towards going home
• Mom and Dad both got some good sleep last night - they are storing it up for when Josh comes home.

(Josh's new bed... no more isolette!!!)

(Josh sleeping in his new open bed)

(A cute little relaxed Josh snuggling on Daddy's shoulder)

(Josh in his cute "Daddy and me" dinosaur outfit)

A very tiring night and day

Mommy and Daddy had their second straight night of rooming in, and it has been very tiring for Mommy.  Josh is feeding every three hours, which means that after Mommy has breastfed Josh and them pumped, she is only getting sleep in an hour and a half to two hour increments.  The doctors suggested that Mommy skip one feeding time a night (not breastfeed or pump), and so she is going to try that tonight to see if a shot of about 5 hours straight of sleep will help, because otherwise she will not be able to keep this up for very long.  The nurse practitioner also increased his breastfeeding attempts to every 3 hours as tolerated.  So far Josh seems to be doing well with eating every 3 hours - Mommy will still skip one feeding tonight in an attempt to get some rest.

Josh seems to be breastfeeding well, but when the nurses weigh him before and after his breastfeeding session, he isn't gaining very much weight, which is suppose to be an indicator of how much he has eaten.  They say that since he is so small, he may not be sucking very strongly, or very much, but so far we have not had a single feeding where he gained more than 10 grams (roughly equivalent to 10 ml of breast milk).  So this has been frustrating for Mommy, because Josh seems to be eating well, and he needs to be taking all his nutrition orally in order to go home.  Josh also lost 5 grams yesterday, and so is now 1,880 grams (still 4 pounds 5 ounces).  The doctors are pushing bottle feeding when he is not being breastfed, but we have heard so many stories of babies that are given the bottle who stop breastfeeding because the bottle is just so much easier (requires less work to get milk).  Also pumping is not a good way to keep up Mommy's milk supply indefinitely, and so once bottle feeding starts, the vast majority of the time so does formula feeding, and breast milk is just so much better for Josh than any kind of formula.

In other news, Josh's doctors are talking about taking him out of his isolette in the next few days.  This of course will make it much easier to pick up and hold Josh whenever Mommy and Daddy would like to.  We choose to delay this transition for a few more days because of the extra calories required for Josh to keep himself warm.  Josh has an MRI of his head scheduled for Friday, which is just a standard test that they run on preemies before discharge to make sure there isn't, or hasn't been any bleeding in the brain.  Josh finished his course of tylenol today, and was a much happier baby than yesterday (when he got 5 shots of immunizations).

Prayer Requests:

• Josh gain weight consistently, and not lose any weight
• Josh develop a stronger suck so that he can get more food at each feeding
• Josh do well holding his temperature so that he can be moved to an open bed
• Josh not get sick or develop any new infections while in the NICU
• Mommy's milk supply increase to meet Josh's demand as he grows
• Mommy be able to get supernatural rest when she is able to sleep

Praises:

• Josh is close to moving out of his isolette
• There are open rooms for Mommy to room in at the hospital so that she can try to feed Josh as often as possible (Daddy is going home for a night of rest, chores and cat petting)
• Josh tolerated his first round of immunizations very well

(Josh in hospital loaner clothing after he pooped his previous outfit)

(A proud Daddy spending some time with Josh after work)

(A very content Josh after feeding)

Josh is a growing boy!

Josh had an excellent night last night, with no desaturations or bradycardias.  Mom and Dad would know first hand because they roomed in last night!  The NICU has two rooms that they allow parents to stay in when they are available and we were able to stay last night.  The main room they use has a standard twin bed, a pull out bed, a full bathroom, and a tv.  Mom and Dad decided to stay the night to see how Josh did with breastfeeding every 6 hours.  The trial went well and Josh did a great job of breastfeeding every 6 hours all night long and sleeping in between feedings.  Mom and Dad wish they could say that they did a well with their sleeping as Josh did.

Because Josh did so well with his feedings through the night, Mom has decided to room-in everynight possible between now and when Josh is discharged.  This will help us to reach our goal of having Josh 100% breastfed and it will speed up the discharge proccess if we can prove that Josh can still gain weight while nursing.  Although we all agree that this is the best thing for Josh, Mom and Dad are sad that they will be seperated occasionally for the next several weeks.  Dad can stay with Mom from time to time, but to enusure that Dad gets enough rest to be able to go to work, Dad will also sleep some nights at home.  Hospitals are very noisy places at night.  Mom is hoping not to go crazy after being at the hospital 24 hours a day.

Josh is doing well with his breastfeeding attempts and was awake enough today to do two feedings in a row this morning.  He continues to tolerate his feedings through his tube as well, which are being given over an hour.  Josh gained 85grams overnight and now weighs 4lbs 5oz.  He also had a growth spurt since last week and is now 17.25 inches long!  Mom and Dad are very proud of their little man!

Since Josh is over 8 weeks old and quickly approaching 2 months old per calander days, he received his first round of vaccinations today.  The nurse said he tolerated them well, with only a slight squeak with each shot,  he recieved a total of 5 shots.  Josh will get doses of tylenol every 6 hours for the next 24 hours to help with pain and possible side effects from his shots.

Josh continues to do well on room air and has not needed to go back on his oxygen.  He does have occassional desaturations, but they are all associated with reflux related to feedings.  The plan right now is to work on getting Josh to take full feedings by mouth so that his feeding tube can be removed.  Once the feeding tube is out, the erythromycin will be stopped.  This will allow the doctors to see how his reflux is and decide if he will need to go home on medications for reflux.  Most preemies outgrow their reflux a few months after birth, so any medciations won't last very long.  They are also allowing Josh to outgrow his caffeine dose and will stop it once it is low enough.  This will enable them to see if he has any residual apnea once he is no longer recieving caffine.

Josh is definitely making progress towards discharge.  Mom and Dad are very excited at the prospect of being able to take little Josh home soon.  We are looking forward to having our little guy home with us sometime in the next 3-4 weeks.   Many people have asked us about helping out both now and when Josh comes home.  Although we are not quite sure of what our needs willl be yet, we will definitely keep you updated via the blog of any possible needs we have.  Our church has offered to host a baby shower for Josh on February 6, so if you are interested in learning more, please contact us.

Prayer Request:

• Josh would continue to do well with his breathing and not need to go back on the oxygen
• Josh would continue to do well with his breastfeeding and be able to eat on a 3 hour schedule and take in enough milk to continue to gain weight well
• Josh would do well with his vaccinations and not feel bad over the next few days
• Josh would not get an infection or suffer any set backs as we are working towards discharge
• Mom woud do ok with rooming in and not become too stir crazy at the hospital and that there will be a room available every night for her to stay 
• Mom and Dad would deal well with the seperation and the new/different responsibilities they will undertake

Praise:

• Josh is tolerating brestfeeding every 6 hours and sometimes more frequently
• Josh remains off of oxygen!
• Josh gained 85 grams and now weighs 4lbs 5oz
• Josh is making good progress and there is an end in sight!!
• Mom and Dad were able to room in last night and Mom will be able to continue to be at the hospital to meet Josh's needs.

(Josh sleeping this morning after a good feed)

(A very proud Mimi seeing Josh in person for the first time)

(A tuckered out Josh after a some good feeding time in the afternoon)

A day of big firsts!

Josh had a great night last night.  He has now been mroe than 36 hours without any desaturations. Everyone is quite impressed with our little guy.  Since he is doing so well on the erythromycin, they have decided to continue it indefinitely.  The doctors decided to try to give Josh's tube feedings over 30 minutes (from 1 hour 30 minutes), but this was a bit too big of a change, so they changed it to 1 hour in the evening.  He tolerates this fairly well with only a few episodes of bradycardia, which resolve quickly on their own.  The episodes are definitely related to his reflux - you can see him rapidly trying to swallow when they occur.  Josh gained 5 grams overnight so his weight is now 4lbs 2oz.

Josh also spent a majority of the night with his oxygen on the bridge of his nose instead of in it (he kept removing it). So this morning the nurse practitioner wrote to turn off his nasal cannual.  This is the first time since Josh was born that he has not had some sort of respiratory support!!  Josh has done very well on room air with his oxygen saturations ranging 88-96%, mostly at 96%, even during breastfeeding.  Josh has had a few episodes of desaturation today, all associated with reflux - probably related to his feedings being given over a shorter period of time.   Mom and Dad are very proud of our litte guy and are hoping we are done with oxygen therapy forever!

On Friday Mom and Dad had started dressing Josh in clothes and when they arrived on Sunday Josh was again naked.  We think he was undressed to do his weight Saturday night and was not redressed.  Some of the nurses do not like to dress a baby while in the isolette.  When our regular nurse practioner arrived this morning, she wanted to know why he wasn't dressed.  I told her of our experience over the weekend and she was not pleased.  So Josh now has an order that says he is to be dressed while in his isolette.  In addition to getting to dress him again, our nurse today said that Josh is not needing the support of his isolette as much.  So she changed the settings so it keeps a steady temperature in the air and then it can be adjusted down to compensate for Josh's body temperature.  So his isolette is set to 28 degrees and his body temperature has been staying at or above 36.5.

Josh had a rough start to the day with breastfeeding.  At his 9am feeding he was very awake and alert, latched well, but wouldn't eat.  He did this for about 30 minutes but never actually ate anything.  This was very frustrating for Mom, espeically because she feels this is the result of getting out of our routine this weekend.  Our wonderful lacation consultant had already arranged to come by for his 3pm feeding, so Mom was very excited to get some help from her.  After a few adjustments, Josh had one of his best feedings so far and ate for about 12 minutes.  Mom and Josh were both very pleased with this!!  So hopefully we are back on our way to having a good routine and good feedings.

Prayer Request:

• Josh would be able to stay on room air and not need any more oxygen
• Josh would be able to tolerate his feedings at the faster rate and his reflux would not become worse
• Josh would have turned a corner with breastfeeding and be able to slowly increase the duration and frequency of feedings
• Josh would be able to hold his body temperature well after the changes to his isolette temperature controls were made
• Josh would begin to gain weight steadily again

Praise:

• Josh is now back to 4lbs 2oz!
• Josh is on room air and currently not needing any oxygen!
• Josh is wearing cloths and looks super cute in them!
• Josh and Mom have a wonderfully helpful lactation consultant

(Cute Josher in his car outfit - the bandaid is from a morning lab draw)

(Isn't he just the cutest baby ever?!?!)

(Little Josh napping after being fed)

(Mommy and Josh enjoying a nice bonding moment)

(Doesn't he look amaing without that nasal canula?  Just one tube left!)

(Daddy and Josh in a serios discussion about how to get some sleep around here)