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)

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)