"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

November 4, 2011

GIANT steps

I haven't blogged for a while about how my little Katea is doing.....and so much has happened.  It's amazing how quickly things can turn from good to bad, as well as from bad to good....within days, and sometimes even hours or minutes.

As I've mentioned several times before, her little lungs are struggling.  The doctors and nurses are really focused on getting her off the ventilator....especially since she's almost 6 weeks old and the longer babies are on the vent, the more damage is done to their lungs.  They've tried giving her a couple different medications to try and help her lungs develop....they've been giving her flow vent, which is a bronchial dialater....along with albuterol, which is a steriod, they've been giving those to her for about a week and a half and it's really questionable if they're even working.  They've tried a few times to wein her ventilation and the amount of oxygen they're giving her, but each time they've tried, she wasn't ready and they would have to turn it back up.  They've changed the way they oxygenated her.....from where they give her breaths (but she's still able to take breaths on her own as well) to where she initiates the breaths and the machine helps her make those breaths full and deep breaths to fill her little lungs.  With the ventilation method of giving her breaths, they tried to wein her by giving her less breaths everyday....but when she got down to 26 breaths, they noticed that she was requiring more oxygen to compensate, which totally defeated the purpose.  They had to go back up to giving her 30 breaths a minute, just to stabilize her.  Then they changed the way they were ventilating her and they tried to decrease the title volume (the pressure given by the machine to make the breaths she initiates full).....they only decreased her title volume by .5, which is such a small amount, but she did not tolerate it at all.  They had to turn her title volume back up by that .5 ......and then they had to continue to turn it up throughout the night, to the point where they had to support her more than she's ever needed before.  They did a chest x-ray to look at her lungs and, bad news!......her lungs had closed.... collapsed.....all the stress and trauma from trying so hard to force her lungs to develop was too much for her little lungs, and they couldn't handle it.  The doctors and nurses decided to just leave her alone for a day and let her lungs recover.....but they were worried.  They turned the ventilator to setting that sustained her, and thankfully, it didn't take long for her lungs to re-open.  But the fact that they closed was a huge step backwards.

I got a call from the NNP (neonatal nurse practicioner) a couple days ago and she was explaining to me what they've decided to do with her to try and help her get off the ventilator.  She told me that this is like a last resort and they only use it for babies who have been on the vent too long, or for babies that are already showing signs of long term damage.  Both of those issues were things my poor baby girl was facing.  They would have liked her lungs to be strong enough to get her off the vent a couple weeks ago....and being that she's been on the ventilator for almost 6 weeks was a lot longer than they had hoped.  She told me that baby Katea has been having bronchial spasms, which is a sign of chronic asthma....and it's not guaranteed, but when that happens to babies this young, it usually means they will suffer from asthma or other lung diseases for the rest of their lives.  This news broke my heart and I was so worried for her.  They've already diagnosed her with BPD (bronchial pulmonary disorder) or CLD (chronic lung disease).  What the NNP's, the neonatalogist, nurses and RT's had decided was to take her off the hydrocortizone steriod she was taking (to stabilize her blood pressure) and put her on an even stronger steriod called Deximethizone/Decadron.  She explained to me that this is a very strong steriod that will force her lungs to open up and develop.  They start out by giving her a high dose for a couple days, and it's set to wein on it's own until she doesn't get it anymore.  She told me that depending on how well Katea responded to it would depend on how fast she would get off the ventilator....it could be anywhere from a couple days to the duration of the treatment, but that the procedure when giving this strong of a steriod is to take the breathing tube out at least by the end of the treatment.

That was a lot of information to get over the phone and I felt very overwhelmed.  I texted all our family members asking them to please say a prayer that day for baby Katea's little lungs.  I know there have been so many thoughts and prayers from so many people going out for her....but I just thought that if everybody could pray at the same time for the same thing.....then maybe, just maybe, Heavenly Father would get bombarded and help her along....hahaha

They started the first dose of the Deximethizone on Wednesday November 2nd.  Surprisingly, she responded extremely well to the treatment.  Immediate improvement was noticed and they were actually able to turn the amount of oxygen they were giving her way down.  Before the steroid, she was consistantly getting anywhere from 30 - 40% oxygen....after the first treatment, they were able to turn it all the way down to 22%!  That is HUGE, especially since room air (the air we breathe) is 21% oxygen.....that meant she was only needing a little bit more oxygen than she would get if she was breathing normally.  That 22% only lasted about an hour and a half, and then it went up to about 25 - 26%.....but that was still great!  She did great the next day with the second dose.....and there was already talk about it being time to extubate her (take the tube out).  Today, on Friday November 4th......after being intubated for 40 days, and after only 2 treatments of the new steriod.....they extubated her!   Her nurse called me this morning and let me know that they planned to do it around 1pm today....I asked if we could be there for it and she said yes!  Ova and I came to the hospital around 1 o'clock so excited, and super super nervous about what was going to happen....just praying that everything would go smoothly.  And it did!  It was actually a lot smoother than I was imagining....and she did great!  They took the tape off her face, got the bubble CPAP (continued positive airway pressure) with a back-up rate ready for her and then they pulled the tube out of her throat.  I was imagining that she would struggle, or that they would have to bag her (like they did the last time they switched her tube)....but that didn't happen.  She was able to sustain herself and breathe on her own for that minute it took to get her hooked up to the next form of ventilation.  I wanted to be here because I really wanted to hear her cry.  Since the first time I got to see her, she had a tube down her throat....and for 40 days, almost 6 weeks....I've been with her everyday....and I have yet to hear even a little sound from her.  I couldn't wait to hear her cry!  I was expecting the tube to come out and her to start screaming, but that's not how it happened.  She made one little sound, and of course I cried when I heard it....but it only lasted a half a second.  The RT explained to me that she's probably just hoarse because there has been a tube irritating her vocal cords since she's been alive....that it could take a little while for her to get her voice....but that I shouldn't worry, she'll be crying loud and all the time, before I know it!  I can't wait for that!

I'm actually sitting at the hospital right now with her.  I took Ova home to get some sleep because he worked his grave shift last night and then came with me to be here when they took her tube out.....he was so tired.....he's such a great dad and didn't want to miss this big step, so even though he could barely keep his eyes open, he was here.  I wanted to come back to be with her....to see how well she's doing off the ventilator and to see if maybe she found her voice yet.  No voice yet, but she's doing so good!  She's breathing good, taking a lot of breaths....her oxygen saturation levels are stable, and she looks great!  She truly is amazing, and such a miracle!  If you think about it, we're hoping and praying and forcing her to breathe......something that she shouldn't even be doing yet.....if she was still inside me, she wouldn't have to breathe for at least another 7-8 weeks, considering I would only be 30 weeks pregnant......but there was a different plan for her, she's here...and she's breathing....and she's truly a miracle....and I love her so much!

I am overwhelmed at the many many times I've seen the Lord's hands in all of this.  Of course I have my days where I feel overwhelmed with everything that's happening.....but more than that I feel comforted and at peace.  With how quickly she's progressing, and how well she's doing (even with the setbacks) I can see his hand.  I count my blessings and everyday I thank him for her, and for trusting me enough to be the mother of this special little girl!  I'm not sure exactly what I'm supposed to learn from all of this, but one thing I have learned is that miracles happen, God is mindful of my little family......he really does answer prayers, and above all, he loves me!

Thank you, thank you, thank you for all the prayers for my little family, especially for my baby Katea....we definitely feel them, and they definitely help! 

Baby Katea right before they took her off the ventilator...

With the tape off

Finally we get to see her face with no tubes and no tape....it didn't last very long though

This is the type of ventilation they switched her to...it's new...it has two little prongs that go in her nose and it has a back-up rate, which means that if she needs a little help breathing....they can still help her by giving her more flow through her nose.  She's blowing bubbles in this picture....because she needs to learn how to swallow still....she hasn't been able to swallow with a tube down her throat!  And you can totally see her chubby little cheeks!  :)

All the excitement was a little too much for her and she was extremely irritated, flailing her arms and legs around everywhere.  The nurse was trying to calm her down, but it just wasn't working.  She asked me to come over and try it...maybe she just wanted her mama.  I put my hands in her incubator and covered her little body.....immediately she calmed down and her stats stabilized.  That was a very proud moment for me....she knows her mama!  I had to sit there for quite a while, because whenever I would move, she would start moving around again....but I didn't mind.  She just wanted her mom, and I loved it!

More GIANT steps she's taken besides getting off the ventilator.....she's grown in length 2 1/2inches since she was born and is now 15 inches long!  And she's officially gained 1 whole pound since she's been born.  Tonight she weighed 1240 grams, which translates into 2lbs.12oz.  Yay!  Good job baby Katea, you're doing great!  Keep it up!  :)


Ane said...

She's a beautiful baby! You are a beautiful and amazing mother Monica! I just cried when I read that last part about you comforting her. It's amazing the bond between mother and child. Keep growing and getting healthy baby Katea! We will keep on praying for your family. Ofa Atu!

Kalani said...

Yay!! Such wonderful news...I'm so happy and excited for you! And I LOVE that she calmed down as soon as you touched her. Of course she knows her mama!! You are amazing, Monica, and I am so inspired by your strength!!

Lani M. Latu said...

That is awesome monica! I'm so happy that she's making awesome progress. And it's so amazing how she gets so calm and relaxed when you are with her! More prayers and love your way! Continue to grow strong and healthy baby katea!!! :)

Aki said...

I haven't even met you baby Katea and I already love ya!! Keep it up baby girl!...and Monica your doing great too Mama!!

Aki said...

I haven't even met you baby Katea and I already love ya!! Keep it up baby girl!...and Monica your doing great too Mama!!


WOW Monica, that's great! I love reading about Katea cause she truly is a miracle. It makes my heart smile, and I know you don't know what the lesson is for you, but keep in mind it might not be for you, but for others. You are an amazing woman all around, I admire your faith as well as your husbands. This is a blessing, and a trial that is being overcome in the right way, and that is a lesson we all need to learn and we see thru your blog :) Thank you for making me and so many others aware of what we have, and to hold on to our blessings we take for granted sometimes. Love you! XOXO to baby Katea :)

shaunita said...

That's such good news!!!! I'm so happy she's making good strides.

Mandi Bartlett said...

What an amazing step in the right direction. I am so happy for you and your family. She is truly one strong little angel! Hopefully that CPAP comes off soon.
I cried when I read about her just wanting her mommy. I remember those moment with Annie. She still has those moments although I suspect she is slowly becoming a daddy's girl! LOL.
Hang in there! Know that you are loved and thought of often and that all of our thoughts and prayers are with you, Katea, and your beautiful family.