Working hard

 There has been lots of work and practicing being done by Brenya.  She is now sitting up like a pro and can do so for quite awhile with no help or support.  She is working hard to figure out how to crawl.  With some help getting up there, she is able to hold herself on her hands and knees for several minutes.  She is still trying to figure out how to move forward.  Most of her concentration at this point is to try to keep herself up since she isn't quite strong enough to move.   Brenya is doing very well foodwise.  So far she has had zucchini and apple juice along with her rice cereal.  All three of these she didn't like at first, but after some determination from mom and dad to get her to try it, she grew to like them. She is so funny when she eats.  Instead of just opening her mouth, she opens and sticks her tongue out as far as she can.  This creates quite a challenge to feed her, but it's also very cute.  She also likes to chase the spoon with her tongue and try to lick it.  Brenya is able to hold her bottle of apple juice by herself only she hasn't figured out yet that she needs to tip it to get juice out!

Sleeping with daddy

What a messy eater

November fun

Brenya is doing well on solids.  She has been eating them for a week and has only had rice cereal so far but she loves it.  She is up to eating about 2 tablespoons and then nurses right after.  She is a big eater!  That would be hard to guess by looking at her size.  She is only 11 lbs 9 oz so still pretty small for her age but she is growing which is all that matters.  She was going to start getting veggies in her diet yesterday but she had two messy diapers with blood in them.  We took her to the doctor and found that she may have had an allergic reaction from too much dairy in Mom's diet.  Brenya had a follow up appointment this morning and there are no more traces of blood in her poop.  Mom just has to limit the dairy she eats which should be easy now that Thanksgiving is over.   The doctor says it's common for babies to have such a problem and it will resolve when she turns a year old.  So, even though the introduction of veggies was delayed, she will be able to start them at the end of this week.  Other than that Brenya is doing very well and moving right along.  It's so much fun to see her experience new things every day.  We are so excited for Christmas!

6 months old

Another month as flown by and Brenya is growing quickly!  She still loves to talk and can say mama and dada.  She can sit up for several minutes now and has started trying to scoot on her belly.  Shouldn't be long and we will have a crawler! She gets to start eating solids next week which we are very excited for.  It's going to be fun to have her try all the new foods.  She loves playing with her toys and laughs at many things. Her personality is really starting to show.  She is curious about everything but very cautious of strangers.  She is a mama's girl and gets upset if she is not around and she loves play time with daddy.  We love every new development she makes and are amazing with her more and more each day!

Daddy and his little kitty

It's a pumpkin! That's a bright flash mom.

Posing in the dress mommy wore when she was a baby.

Sitting up all by herself!

5 months old!

 Brenya turned 5 months yesterday! Time has flown by.  It seems like just last month she was brought into this world ready to face the tough problems she had ahead of her.  Looking at her now, you would never know what she had to overcome.  She is progressing very quickly and we could not be prouder or ask for more from her.  She is eager to crawl and explore and is working hard to develope the muscles needed to do so.  She even loves to stand and can do so with just a little support.  She is able to sit on her own for a couple of seconds but is still a little wobbly and rolls over like a pro.  She is even showing intrest in eating solids although we haven't quite started them yet.  She giggles, talks a lot and loves to play.  She is very fond of our dog Rufus and enjoyes petting and watching him.  She is still small, at her last weight check a week ago she weighed 10 lbs 6 oz but she is still healthy and chubby.  Naps are not something she likes and fights sleep almost every time she needs to take one.  I guess there is just too much for her to miss out on and she doesn't want that! We love our little girl and all the exciting and challenging moments she brings us!

This was taken a couple of days ago.  She is just so worn out from tummy time.

Brenya and a spaghetti squash

More and More Progress

Brenya is doing amazing! She is working on sitting up, rolling over, and crawling.  She is getting very strong and exercises everyday to get even stronger. She is able to sit up for a couple of seconds by herself and she pushes off the floor with her elbows when on her tummy.   Her growth has slowed a little but she is still doing great.  She is in the 2nd percentile, so she is small but healthy.  She giggles a lot and is very curious about everything she sees.  Mom and dad have to watch her and not let her grab things she shouldn't.  We are all very proud of her and the accomplishments she has made. 

A month of growing!

I was told I need to update the blog again so here it goes. :) Brenya is doing absolutely amazing! She is now three months old and by looking at her you would never know she was in the hospital. She is a little small for her age, being in the 5th percentile, but is healthy. She got to come off her oxygen on August 9th so now she is a wireless baby. Since she was in the hospital for 8 weeks her development was a little delayed but she is catching up quick. She can sit up with support, she holds her head up, and she has just started pushing up off the floor. She tries to pick up toys but is still a little too weak. You can tell she really wants to get down and play and get frustrated because she can't. We are working on it. She smiles a lot and is starting to laugh. She is also VERY talkative. She eats well and all from mom too. No bottle! We are getting into the routine of all the normal baby stuff. We all really love being home. We are very lucky to have such a tough and special little girl. I will keep the blog updated more regularly with her achievements and pictures.

Brenya is a gamer!

WE ARE HOME!!!!

That is right people...sorry for such a late post, we wanted to surprise all the people back home we could. We left the hospital on Wednesday, July 13th. It is kinda funny because we were at bed 13 too. I guess she is already working on her lucky number at only 8 weeks old! She had to go home on a little oxygen but we should get off of that in no time at all. Sorry we don't have any pictures yet (I can't find the cord to upload the pictures) but I promise I will get some for you guys soon!

 I would like to thank everyone for all the support throughout this difficult patch in our lives it really made a world of difference. It really surprised Sonya and I to see all sorts of people calling and asking what they can do. It is nice to know that when the baby poop really hits the fan that you have good family and friends to help you through it.

We will keep the blog updated with her developments and such. I enabled comments so feel free to make any if you want!

Getting closer!

Brenya has been doing very very well.  She has only been bottle feeding and nursing for a week now, but she is already eating the full amount she is supposed to eat plus some.  She really loves her food.  It has surprised everyone how quickly she was able to eat from a bottle.  They took out her feeding tube yesterday because she doesn't need it anymore.  They are now giving her both the Adavan and Morphine on an as need basis.  So far she has only need one dose of Adavan.  She was also able to come off the high flow yesterday.  She has the regular nasal canula and is on one liter of air.  They want to get her to 1/4 of a liter before she comes home but there is still the possibility that she won't need to come home on oxygen at all.  We are very happy with all of her improvement.   She is starting to be a very healthy baby.

This is the bandage where her central line used to be.  No more IVs!

You can almost see all of her face!

 

 

 

 

This was a couple of days ago.  Dad does such a good job feeding her.

One step closer to being wireless!

Since today was day 28 of 28 of her antibiotics, Brenya had a CT scan to check on the possible infected pockets of fluid in her abdomen.  The findings were that the pockets of fluid were gone.  These results made the doctors confident her infection is cleared and the antibiotics could be stopped.  Since she is no longer on antibiotics, she did not need her central line (that big white one that was in her chest) anymore and they were able to pull it today.  She now has no IV fluids at all!  She is still getting Adavan and Morphine but now she gets them orally.  They also decided yesterday that she could she could bottle feed whenever she is awake and wanting to and they gave her the go ahead to try nursing once a day.  Yesterday she was able to eat 52% of her total milk intake for the day.  Pretty soon she won't even need her feeding tube anymore.  As for her oxygen flow, she is down to 2.5 liters so making good progress there.  Hopefully, she can be weaned again tomorrow.  Brenya is really do well and her progress has even surprised the doctors.  I apologize for the infrequent posts lately, but her changes now have been slow and some days there just isn't much to report.  Just remember, no news is good news. Thank you for all of your support, it has really helped a lot.

Yum food!

Almost caught her full smile. 

She was making noises in both videos but the camera didn't pick it up. I'll try again later to record them.

Yum food!

Brenya's doctor decided to try bottle feeding her yesterday.  This was a big surprise to us because we thought she had to be on a lower flow of air before she could try to eat on her own.  Some of the nurses thought it might be to early but the doctor was confident she could do it.  We took it very slow and she did great! She only managed to eat 4ml before she got tired out and was done.  It amazed the nurse she did that much, though, and she did it with no problem.  Today we tried feeding her again.  We tried twice, the first time she managed 30 ml and the second time she got 39ml.  This was an even a bigger shock to everyone. A lot of the time babies in the NICU, especially ones with diaphragmatic hurnias, have a very hard time learning to eat and want nothing to do with the matter.  Brenya, however, loves her food and she shows it with her eagerness to eat.  We are very happy to see this!  It's hard work eating from a bottle though, so we are still taking it slow.  She only gets to bottle feed twice a day until she gets a little stronger. 
Another sign that shows how well she is doing is the fact that she is down to half a nurse.  For the past 5 days she has shared her nurse with another baby in the room.  This is a big deal considering when she first got there, there were two nurses watching her nonstop.  It is so wonderful to watch the support she had disappear.  She is doing well with the weans from her drugs and oxygen.  She is now getting her morphine dose every 6 hours and the adavan dose has been cut in half.  She is also down to 3.5 liters of oxygen flow.  Slowly but surely she is working her way to being off everything.  

Small steps

Brenya was  switched from versed to adavan the other day.  The versed wasn't working quite as well as they would have liked at keeping her calm and they think the switch will do the trick.  So far, it has.  Today she was able to be weaned on both the morphine and adavan.  Instead of being on a constant drip, she now gets one dose of the adavan every 6 hours and one of morphine every 4 hours.  She is down to 4 liters of flow with her oxygen (she has to be down to 1 before she can go home).  She is on day 23 of 28 of her antibiotics. We have been doing physical therapy with her to help her strengthen her muscles and help her range of motion.  She is getting stronger every day.  The doctors hope to being bottle feeding her sometime during the first of next week.  We are steadily moving forward.  Brenya is such a happy baby even though she has been through so much.  She smiles and coos a lot and really only fusses when she is hungry or needs her diaper to be changed.  She is an amazing little girl.  We are very proud of her and can't wait to bring her home so everyone can meet her.    

In a crib and off Cpap

Brenya has graduated from the warmer to a crib!  We are so excited to see her taking these big steps.  She also came off the Cpap today and is now on high flow from a smaller nasal cannula.  She likes this much better because it doesn't squish her nose and the air pressure she is getting isn't as great.  She is doing very well with the change and in a couple of days the process of weaning from the high flow will begin.  She also went down on her morphine again today and is doing very well with that.  She is awake now more than ever.  It is so much fun to see her moving and interacting so much. She gave us quite a few smiles tonight.  She is   She moving along great and we are getting closer and closer to coming home!

Here are some videos of her yawning, sucking on her binki, hiccuping, and crying. All things that are very cute and that she couldn't do not too long ago. It's amazing to hear her cry since we haven't heard it since she was born.

All cozy in her new crib.

So much better than that big, bulky, Cpap

Small changes

We are on day 18 of 28 of the antibiotics.  10 more days and her infection should be completely gone.  Her versed was weaned today from 0.2 to 0.15 so we should be nearing the end of the versed also if all goes well. They weaned the Cpap today and hopefully tomorrow will be either another wean or coming off all together.  Small changes but good changes.  We are still heading in the right direction.   

Firsts

Today Brenya got to wear clothes for the first time!  It's one of the hospitals outfits and it was a little big on her but still cute nonetheless.  The nurse shut off the warmer to see how Brenya would do maintaining her own body temperature.  Of course she did fine! We are hoping she can graduate to a crib in the next couple of days.  Brenya also got her first manicure today.  Her nails had grown very long in the past 5 weeks and with her moving a lot more she was in need of one.  Mom waited for her to be asleep so she didn't even know it happened! Now she is not at risk of scratching herself.  They weaned down her morphine from 0.15 to 0.1 so she is getting closer to coming off.  Tomorrow should be the wean for the versed.  Her voice is getting a lot stronger.  When the nurses do something she doesn't like, she makes sure they know.  It's still not at it's full volume, but she is working on it.  She just keeps improving so much and is doing very well.  We are so proud of her!

All bundled up

 

Sleepy little Brenya in her cute pjs. We are going to have to bring in some clothes that actually fit her!

A late post

Last night Brenya was in a very good mood.  They went down on her versed and she was quite awake and alert.  We got to give her a sponge bath for the first time and she was happy they whole bath.  We heard her make some happy little coo noises for the first time and even smile.  They took our her PICC line and got rid of one of her Sat probes.  Now she has her central line (that's the white one in her chest) for medications, one sat probe, and three other little monitors.  She is almost a wireless baby!  They plan on weaning her morphine at a slow but regular rate now.   Today they will be going down on her morphine.  Hopefully she has no problems with the weans and she will be off them soon.  It's nice seeing her become more awake and alert and we can't wait until she is completely back to herself!

Down time

Today Brenya got to just chill out on the Cpap (the nasal air flow she is on to help her keep her lungs open).  She needs to rest and strengthen her lungs so she eventually  won't need the extra pressure anymore.  She got up to full feeds today so they took her off the IV nutrition and fats.  It's nice to know that she is not only oxygenating herself now but also giving herself nutrients.  She has made big improvements the past few days and the pace now will probably be a little slower while she continues to heal and adjust. She has a lot of work to do before she can take her next big steps of coming off the morphine, versed and Cpap. 

More big improvments

Brenya is doing well and steadily improving.  Today they shut off the milrinone and she has tolerated that very well.  She is also doing a great job breathing on her own.  Our best news to tell everyone today is that we got to hold her for the first time.  All three of us enjoyed it very much. She slept calmly and her stats stayed right where they needed to be.  It was a big step for her to be able to take and it shows how far she really has come and how close we are getting to bringing her home. It brought tears to both of our eyes to finally have our little girl in our arms.

 

She really does love her binky! This video isn't the best at showing it, but she has become a pro at using it!

Extubation Day!

That is right people the day has come that they finally took out her breathing tube! She now has a nasal tube that just sits a little up her nose and provides a little bit of pressure, along with oxygen, to help prevent her lungs from closing up. It was a little bumpy at first but she is doing very well! The funny thing is the docs didn't think she would be well enough to come off for another week but she surprised us all.  Now all we need to do is get her lungs to a point that she doesn't need the extra pressure and then she can maybe even be taken off of oxygen all together! After that it is weaning her off of her drugs and making sure her infection wont come back. It is funny that her binky stops her crying instantly. We hope this wont be a bad habit but we are just glad we can keep her comfortable most of the time.

I see you!

I want to go home! (You can actually hear her cry now!)

Don't worry mom is here.

And she loves you.

I like my binky.

Out cold for the night.

 

Well on her way

Brenya is still doing well off the nitric and is starting to be weaned off the milrinone (the medication that helps her heart function).  So far, she is doing well with that.  They removed the bandages covering the incision made when they fixed her diaphragm.  It has healed up quite nicely.  They were also able to remove the monitor on her forehead because she doesn't need it anymore.  Her ventilator settings are coming down and she is getting very close to being extubated.  Slowly but surely all of her extra support is disappearing!

Epic scar!

Dad changing his first poopy diaper.  There are many more where that came from!

All tucked in with her binky.  She really likes her binky which the nurses say is very good.  A lot of times when a baby is intubated he or she has an oral aversion and won't take a binky or bottle.   She shouldn't have a problem!   

Fathers day goes great!

Brenya has really showed her dad that she loves him with the fact that she was able to wean completely off of the nitric oxide with no problems. The ultrasound of her heart looks better today then it did yesterday. She is on her way to recovery and is doing great!   She even has started to suck on her binky and her feeds are increasing every day.

Patients is key here...

As the title suggests patients is what we must all have but it is paying off. Brenya is making a lot of progress and a slow pace but it is progress none the less. She has been increasing her feeds and she has started to wean off of her medications more and more. She is finally off of her flowlan and they have even started to wean her off of the the gasses she is on nitric oxide and she is tolerating it very well. Yesterday she was at 20ppm and right now she is at 3ppm and if everything goes well she should be off by tomorrow. Then she might even be well enough to get rid of her breathing tube! She has been pooping great and they have been giving her small increases in her feeds as of right now she is at 50mg per kilo. Since they have started to wean down on the Morphine and Versed she has become more aware and active. She wiggles all the time and sometimes they have to give her a little extra versed to help her calm down or go back to sleep (Only when she starts too look uncomfortable or they are worried if she will pull out her breathing tube). She has been making cute little sucking motions when they clean out her mouth, this is great because it shows that she doesn't have an avoidance to things being in her mouth completely. This will make it easier when the time comes (hopefully soon) when she can be feed more naturally.

I would like to apologize for the late update but things have been moving at a slower pace and I wanted to update with something more exciting. I promise to be more diligent in my blogupdatingness (I know it is not a word Lori, and I don't care if I spelled it right Jenna)!

As for mom and dad we are doing fine with our downtime. We have been keeping ourselves entertained with the gifts from our friends and family. Thank you everyone for everything!

Baby Brenya back when she was on ECMO. It was one that I took on my Ipod that actually looks like she is smiling.

Another good day

Brenya is doing very well.  Her lungs are clearing out and healing up, although they still have a ways to go.  She pooped for the first time since they started her feeds.  We were excited about this because there was a chance that she wouldn't digest the milk properly and poop means everything is moving through just fine.  They are even thinking of upping the amount of milk they give her tomorrow.  They have decreased the amount of flolan (the medication that helps her lungs work) by about half already.  They were going down one point every 12 hours, but she was doing so well that they decided to go down a point every 8 hours today.  She is sitting at 8 right now so if things continue to go well she should be off in about three days.  She has also been able to be weaned down a little from her morphine and versed. Because of this, she has been more awake and alert.  They still have to keep her a little sedated, though, until she is able to come off the ventilator. It is nice to see her awake and moving.  You can tell she is definitely going to be active once she gets out of the hospital  We bought her some strawberry skittles flavored lip smacker lip gloss to help with positive oral stimulation.  She loves the stuff!  It's so cute how she licks it off her lips. 

Good day!

Today was a very good day for Brenya.  She has been able to come down a little on her ventilator settings and the infection is showing signs of improvement.  The have also been able to start weaning some of her medications.  The biggest step she took today, though, was being able to start feeds! She, of course, can't eat on her own, so they have to feed her through a tube.  They start with 4 ml of milk and work up from there until they get her used to eating about 60 ml. She gets milk every 3 hours and they watch to make sure she is digesting it properly.  Her first feed was at noon today and so far she has done very well digesting.  It was a very nice surprise to find out today that she was going to start feeds.  They had said yesterday it would be at least another 3 or 4 days.  Just goes to show the tough stuff our little girl is made of.  She is amazing! 

We have been able to help with Brenya's cares the past couple of nights.  Mom got to change her diaper, do oral care, and take her temperature.  Together we got to pick her up so she could be weighed.  We lifted her off her bed about three inches to calibrate the scale then put her back down to be weighed.  She weighs 7 lbs 14 oz, so she has gained 9 oz!   This is the closest we have been to holding her and it was really exciting for us.  We can't wait until we really get to hold her, which will hopefully be soon.