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. 

Back On Our Way

Brenya did very well today. The tests they run to see how the infection is doing show that it is on the run. However, the markers for her inflammatory response have gone up slightly. This could mean a number of things but the doctors don't seem to worried about it. She was able to be weaned off of her ventilator a bunch today. The amount of oxygen they were giving her went down from 70 to 50%.  They also went down on the amplitude (it helps with the lungs ability to get rid of carbon dioxide) it went from 33 down to 27 hertz. These are great improvements but the nurses seem to be cautious about celebrating yet. They say that most of the time when it comes to these kinds of things babies tend to take two steps forward and one step back. Mom and Dad are hopeful that these two big steps hold there footing! Thanks again and we will get some pictures up soon with her cute new bows, that some family members dropped off yesterday!

At a standstill

There was not much change with Brenya today.  Yesterday her white cell count dropped a little but was still high.  It has remained at that number all day today.  They found some more yeast in her lungs but other than that all other tests have come back negative.  They have upped the doses of antibiotics and expect to see improvement by tomorrow.  Her lungs have not improved much, but they haven't gotten worse either.  The infection has sort of put her to a stand still.  They were talking of starting feeds yesterday because her digestive system is starting to work but they decided to hold of until the infection improved.  Since she has not been eating, introducing food to her body would shock her system and they don't want that while she is trying to fight the infection.  Hopefully she will improve enough in the next couple of days so we can start feeds.  So our goals are to get over this infection, start feeds and get her worked up to eating on her own, get her off the ventilator, and get her weaned off the morphine.  Once we accomplish these we can finally bring her home!  

Moving along

     Brenya is back on her old ventilator.  They had to switch her back because she wasn't doing as well on the new one.  Neither ventilator is better than the other, they just to the job a little differently.  It is not a bad thing she switched back.  She has been showing signs of infection since yesterday and they found that she has a yeast infection in her bladder.  There is no sign of infection in her blood, which is very good and they are testing other areas of her body as well.  So far, it's just in her bladder.  They wanted to do a lumbar puncture today to see if there is an infection in her brain, but when they put her on her side she desated.  This just means being on her side stressed her out a little and they decided not to do it.  They are going to try again tomorrow.  She is on a few different antibiotics to treat the yeast infection and any other infection they may not have detected yet.
      Brenya's lungs are doing well.  They have improved slightly since yesterday so we are making baby steps there.  There is still a lot of old blood from when she had the hemorrhage but it is slowly clearing out.  Her left lung is only about a rib or two smaller than her right, which is very good.  Once they have healed all up, she should be breathing fine.  Yesterday, she was getting 75% of her oxygen from the ventilator and today they were able to go down to 72% .  It's a small improvement, but improvement just the same.  She is doing very well off ECMO and we are happy to see her oxygenating on her own.

I just wanted to put this up because I liked how the nurses wrote her name.  It's nice that they care enough to add that personal touch. 

No more ECMO tubes! She finally gets to give the right side of her head a rest and lay more to the left. And we can stand on both sides of her bed because there isn't so much stuff in the way.  They were also able to give her her first bath.  She is all clean now but her cute little bow is gone.

  

She sucks on her ET tube a lot.  This is how we know she is calm and comfortable. It's really cute when she does it and it's good because she is getting positive oral stimulation.  Since they have been able to go down on her sedation (they have cut it in half since she went off ECMO), she moves a little more and she has started sucking on her hand too.

ECMO your time has come!

The doctors tried a new ventilator this morning in an effort to make Brenya exchange her Co2 better. After she handled the change in the ventilator they decided to trial her off ECMO. She did great with that so they decided to take her off for good. They just went into surgery with the same surgeon that put her on and it went great. She can finally turn her head to the left!  She was a little dirty from the surgery so we didn't get any pictures but we will get some pictures up tomorrow.  She is doing great. All her numbers are looking good and she is holding herself well.  Thank you everyone for everything.

And again

They decided to wait another day on going off of ECMO. She trialed off for 5 hours today and didn't have to go on 100% ventilation. That is good but it wasn't good enough. The docs didn't feel like she had enough of a cushion in case she has to go back up on support. I will update tomorrow on how that goes.

Postponed Again

Nothing really happened today. She needed a little more assistance last night so they went up on her ventilator, not the ECMO. But because she needed more assistance they decided to trial her off of the ECMO today. If everything stays normal they will try it tomorrow. They weren't sure what the cause of the need for more assistance but the doctors aren't really worried about it. She got a little fluid in her abdominal cavity because of the empty pockets that were caused because they moved so much of her insides around. This was expected and the doctors aren't worried about it either. We will let you know how tomorrow goes!

YAY Poop!

Brenya gave us a nice surprise yesterday.  She pooped!  This means her bowels are working and hopefully she will be able to start eating shortly after she gets off ECMO.  Other than that, yesterday was quite uneventful.  The doctors just let her rest again.  They plan on trialing her off ECMO again today around 3.  Maybe that extra day they gave her to rest did the trick and she will be able to finally come off today.

Not quite there yet

We tried to take Brenya off of ECMO today. The doctors said that if they could force her off if there was an emergency (like bleeding in the brain) but that they didn't want to risk pushing her unless they had to. So they decided that they would wait another day or two to give her time to heal up. She is making good progress though. The test we did previously she was off of ECMO for only a short amount of time and the oxygen levels in her blood dropped fast. Today she was off of ECMO for 45 minutes before she started to drop. She only dropped to 93% so they upped the amount of oxygen getting pumped to her through the ventilator and she went back up to 97%. That is really good all in all but they doctors want her to be at a stable oxygen level with only about 60% oxygen through the ventilator not 100% like they had to. They think that she is on her way off of ECMO and is making very strong strides to recovery. She has been on ECMO for about 2 weeks tonight. Tomorrow seems like a slow/easy day but we will keep you posted. Thanks for all your guys support and prayers we feel they are really paying off. 

Another slow day

The doctors decided today to let Brenya rest again.  They gave her flolan which is supposed to help with her pulmonary hypertension.  They are also going to give her artificial surfactant tomorrow to help clear up her lungs.  The chest x-ray they did today shows her lungs are still improving, but not quite enough yet.  They did a culture to see if she had pneumonia and nothing has grown yet, but they let it grow for three days to make sure so they are still not 100% sure she doesn't have it.  They said not to worry though, because if she does have pneumonia, they started the anti-biotics early enough to take care of it. She is going to have another trial off ECMO tomorrow to see if she can come off for good.  Let's just hope her lungs have healed enough that she can oxygenate her blood on her own so she can come off. We found out a few days ago how big her left lung is but I don't think we ever posted it.  It's a little more than half the size it should be.  This is not too bad and she should be able to manage fine on it.