Friday, June 28, 2013

Growing Fast!

Leo's had a great week and a half at home!  He's a 1/2 an oz from being 8 lbs (7 lbs 15 1/2 oz)! He's becoming a better eater and his neck strength is improving each day.  Because of his reflux issues he likes to keep us up for a few hours each night so that he can be held upright.  Leo's home care nurse said we can raise his bed a little bit so it's at a 40 degree angle and it may help.  We are doing everything we can before putting him on any more meds.  Hopefully it's something he grows out of. Otherwise the nurse and his pediatrician said he looks great!  

We have next week off for appointments for him, but then have a doctor's appointment and an appointment with a HUGS teacher (they are certified ECFE teachers that go into your home and do one-on-one visits with at risk infants). Since Leo had a very low birth weight they will monitor his development monthly for the first three years.  The teacher will track his progress and give us activities to help Leo catch up to his peers.  

Leo's first doctors appointment! 

Sunday, June 23, 2013

Leo's Doing Great!

Leo's doing really well!  As of Friday he was 7 lbs. 7 oz.  We hope he's over 8 lbs.  by the end of June!  The home nurse came on Friday.  Leo checked out good.  Lungs sound good and he weighed in great!  She was a little concerned about his respiratory rate as it was really fast (as always) so she called the ICC and they reassured her that its just the way he is.  None the less, she stayed until it was back down to normal range.  He will meet his pediatrician on Monday.  

Dave's been doing some work from home when he can to help out, but next week will be just me and Leo during the day.  I've really enjoyed having Dave home!  Not having the "Bottle Master" around will be interesting! 

Thursday, June 20, 2013

So Fun Having Leo Home!

Leo's been such a good baby so far.  He struggles with his digestion a little (as always). So he spends a lot of time grunting and refluxing, but he seems to be dealing pretty well.  It's certainly nice to finally have him home.  Actually a lot more relaxing, and enjoyable,than traveling back and forth to the hospital.  We have a nurse coming over tomorrow to answer any questions and to check up on him and his weight. 

Wednesday, June 19, 2013

Leo's Home!

Leo's been home for 24 hours!  He was more awake last night than during the day!  That's okay - we had him do a little tummy time and strengthen his back and neck to pass the time.  He actually drank more than his minimum amount of milk yesterday!  It wasn't easy, but he did it.  This morning we tried out his stroller and went for a walk around the pond and Leo met the neighbors!  He is now quietly asleep in his crib. We shall see how long that lasts :).

Monday, June 17, 2013

Leo's Coming Home!

Leo passed his car seat test and will be coming home tomorrow morning!  We have a couple people to meet with in the morning and Leo will get one last physical exam.  We Cannot wait until tomorrow.  

Sunday, June 16, 2013

Leo's So Close!

Leo needs to eat a little more in a 24 hour period to have good weight gain.  Hopefully he'll have a really good weight gain tomorrow.  We are soooo close to bringing him home!  He passed his hearing test, now onto the car seat test tomorrow.  We will meet with a few people tomorrow and then we'll have all the things checked off to bring him home.  He will just need the go ahead!  

Here's to hoping he comes home shortly...

Saturday, June 15, 2013

Leo's Doing Great!

Leo drank all his bottles today!  He will be weighed overnight!  Hopefully he's gained weight.  His brain ultrasound came back normal!  Woohoo!  We have Leo's carseat test scheduled for 8AM Monday and we meet with his dietitian after that.  Once we've  done done both of these tasks we will pretty much be ready to take Leo home! Providing Sunday goes as well as today went, Leo will be home in a matter of days!

Friday, June 14, 2013

Good News For Leo

Providing Leo continues to do what he is doing, he should be home with us early next week.  The nurse practitioner that follows Leo thinks she'll see him on Monday, but he should be ready to go shortly after that.  We are really excited about the news, but also very cautious as all the other ideas of when he would come home have not been true.  Either way, we are making sure we have everything we need in order to be ready for his arrival.  Others have told me that it will seem like forever waiting to take your baby home and then once they tell you he'll be going home soon, you can't believe how fast it goes.  I believe this to be true.  Only two days ago, we would not have thought about a discharge date, and now it's very close.

They took out his feeding tube and are doing a trial run to see if he can continue to gain weight with the amount of food he intakes via the bottle only.  So far today, he has finished all of his feedings.  If he gains weight, he will continue to only be fed through the bottle only.  They will do this for a few days to make sure he is gaining weight.  It is so important for all babies to gain wait, but especially preemies.  They have a lot of catch up growth they need to do.  Currently, Leo has added fortifications to his milk that also increases the calorie intake.  He will continue to need this when he comes home.

Today he had a brain ultrasound and a test for congenital heart defects.  The ultrasound results hadn't been read yet before we left, but his heart test was great.  The best part was that I got to carry Leo downstairs for his brain ultrasound!  He is always attached to the monitors and I have never been able to walk with him out of the room, so it was so special to me.  He will get a hearing screen sometime this evening too.  All things he needs to wrap up before he gets to go home.  We were also told to bring in our car seat.  Leo has to pass a test where he needs to sit in his car seat for one hour without any monitor alarms going off.  If you were to ask me if he would be able to do this even a week ago, I would have been very hesitant.  But, the last couple of days he has really shown to be stronger! 

Dave and I had our apnea monitor training and infant CPR class today.  We learned about infant CPR and choking.  Leo will have a monitor for as long as he is on caffeine and at least two weeks after they take him off.  The monitor is attached to a belt that goes around Leo's chest and buzzes if Leo has a high or low heart rate as well as if he has stopped breathing for more that 20 seconds (apnea episode).  He actually doesn't have these currently, but it is mandatory to have a monitor if your baby is going home on caffeine. 

We hope for a fabulous weekend for Leo!  We can't wait to take him home!

Thursday, June 13, 2013

Leo's Making Progress!

Leo has made some progress over the last couple of days!  After having his caffeine back, he has taken many more bottles!  Yesterday he took 77% of all his feedings via a bottle.  We are impressed by his progress and are hopeful he's finally getting the hang of it!

Since he went back on his caffeine, Leo will be coming home with a monitor.  It will be a little belt around his chest that measures his heart and respiratory rates.  Dave and I have training for this tomorrow as well as infant CPR.  

Tuesday, June 11, 2013

Leo Update

Leo is still breathing great!  They reinstated his caffeine because he is struggling with eating.  They gave his a super dose today and then will give him a daily maintenance dose for who knows how long.  Probably well after he goes home.  He has eaten better today, but not as good as last week before they got rid of his caffeine.  He even drank a whole bottle with ease for Dave this evening.  

We have been working with the occupational therapist to help with feedings.  She says that Leo definitely has his suck, swallow, and breath reflux down.  Which developmentally is a good thing.  What we notice most is that he takes so much energy to take good breaths that he gets very tired and "lazy" with his eating.  We've tried several bottles and various nipples to try and find a good combination.  We haven't found a great match yet, but we are getting there.

The last few weeks have been very exhausting.  Watching others get to take their babies home has proven to be very hard for me.  Leo is on his own time, and the time will come when we get to take him home.  And I'm sure other families will be feeling the same way I do when I walk down the hallway with Leo in a car seat!  That day, they all assure me, will come.  But waiting, especially since his due date has came and gone, is really hard.  

Leo is almost 7 pounds!  He may even be by tomorrow morning.  He is 19 inches long.  His corrected age is 5 days old.  They will use his corrected age to gauge developmental and speech milestones as well as growth.

Saturday, June 8, 2013

Saturday Night Update

Leo didn't feel much like eating today.  He drank about 1/3 of each bottle only.  He was pretty tired.  The positive is that he is still off his oxygen.  Hopefully he'll feel more up to eating tomorrow.  

Friday, June 7, 2013

Leo Needs To EAT!!

All Leo needs to do to come home is eat!  He has been off his oxygen for many days.  So many that they will now try to wean him off his caffeine.  Yes, caffeine.  They give preemies caffeine to help stimulate breathing.  It's also shown in some studies to help with neurological development.  

We have the nursery ready!  Now we just need Leo home to use it! 

Wednesday, June 5, 2013

Big Day for Leo

Leo had a very big day today.  Today was the first day that Leo was breathing room air without any assistance!  He has been breathing on his own from almost birth, but needed some extra support until today.  He has been off his cannula since 10 AM and doing great!  We hope for a great evening too!

He did okay with feeding today.  He drank over half of some of his bottles, barely any of others, and of course an entire one for Dave.  Dave is now known as The Bottle Master!  He has finished  the most bottles with Leo out of anyone.  I just told him he is showing me how excited he is to get up in the middle of the night to feed Leo when he's home.  We both agreed that we'd be more than happy to feed him in the middle of the night as long as he is home with us!

Monday, June 3, 2013

Leo Continues To Make Progress!

Leo drank over 50% of all his feedings orally yesterday!  I think he may be on the path to do even better today.  He drank half of each bottle I gave him and an entire bottle for Dave.  He's also been on room air with a little flow for almost four days.  There's talks of weaning him off all together this week, but they want to wait until he's established better eating habits. 

As up and down May was for little Leo, June has been great!

Saturday, June 1, 2013

Go Leo!

Leo's had a great week!  As of now, he's been breathing room air with a little flow for over 35 hours!  Woohoo...every second gets him closer to getting his cannula off.  Also, they've changed his feedings to "as tolerated".  This means that if he wakes up or shows any interest at all during a care time, they will give him a bottle.  He was given a bottle at all his care times yesterday and he drank at least 1/2 of each of them.  Several he had full bottles.  Today, he drank an entire bottle for me!  We gave him a bath before his bottle today, he was wide awake when we started at 1:30 and didn't go back to sleep until we left around 6.  That was, by far, the longest we've seen him awake.  With all the progress he's made this week, I can't wait to see what he has in store for us in the week to come!

This morning we participated in the Baby Steps 3K to help raise funds for the neonatal program at Children's.  As Team Leo we raised over $500.  Pretty great considering I put together the team at the last minute.  At the walk, we met another little Leo that was born at 32 to weeks!  Next year it will be fun to participate with Leo.  Thanks to everyone that participated and/or donated.  It means a lot to us to see all the support we get from families and friends on a daily basis.  This is just one of the many examples of how kind and thoughtful everyone has been through this adventure with Leo.  Leo doesn't know it yet, but he's pretty lucky to have all of you backing him up!