"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

May 26, 2012

Questions answered / New worries formed

So as the neonatal NNP suggested, we scheduled an appointment with the pulmonologist that same week.  Yet another appointment up at Primary Children's....that place has been an every week occurence for the past few months.  :(  Ever since I spoke with the NNP, I was really worried about having damaged baby Katea's little lungs even more...espeically since she told me that using too much albuterol was not good and that it could worsen the affects of her chronic lung disease.  She still wheezes at times, and she still retracts when she's breathing sometimes...so I've been giving her albuterol pumps every single day.  Great one. 

To be honest, I was happy to be referred to someone who specifically deals with lungs.  Since thats what our main, and really only struggle is with her.

Baby NEEDS her oxygen.  If she pulls the canula out of her nose for even a minute, her monitor is beeping because she's de-satting and not getting enough oxygen.  I've had several experiences with that.  A lot of the times when her monitor beeps, it's because she's moving or kicking her feet....and the sensor is not reading....but a lot of the time too, it's because the canula is not in her nose.  When she first came home from the hospital, I was with her 24-7.  I needed to take a break one night to clean my room so I asked Gramma Tea to sit with her in the living room.  I was in my room for maybe an hour.  Her monitor kept beeping and then it would stop, then it would beep, then stop....over and over again.  All the sudden I hear Tea scream for me and she was crying.  I ran to the living room and baby's lips were blue and she was a really clammy grey color, she obviously needed oxygen.  Tea said that the monitor kept beeping and she kept hitting silence, but the problem was that it WAS reading and she was desatting in the low 60's.....that was WAY too low.  While she was panicing, I was trying to figure out what was going on.  I found the tube that is supposed to be hooked up to the oxygen concentrator in Lautala's hand.  She was curious and didn't know it was bad....and we had no idea how long baby had been without oxygen.  Poor baby girl, I hurried and plugged the tube back in and turned the oxygen way up to help her catch her breath.  She took some really deep breaths almost as if it was such a relief.  Poor baby.  So scary for Tea and my other kids.  Scary for me too, but I'm used to it.  I just had to explain a little better how to read the monitor so she knows when it's ok to silence it, and when she really needs help.  That, of course,  freaked Tea out and she didn't want to watch her after that happened.  But like I said, that was when we first came home...and it's been a while, so she's more comfortable now.....but she still gets scared sometimes.  The other day when we were driving to Primary's for another appointment, baby's monitor was beeping.  We actually were running late, and were hoping to not have to make any stops.  It kept beeping and beeping and beeping.  And, it was reading.  I was sure that she had pulled the canula out of her nose....and her carseat was just far enough away that I couldn't reach her nose to try and put it back in.  I ended up pulling over on the freeway to get out and put the canula back in her nose....but it WAS in her nose.  Then I started freaking out.....she was de-satting with the oxygen in her nose.  I grabbed her tank to turn it up a little, and found out that it wasn't even turned on.  OMG the whole time we were driving, she wasn't getting any oxygen at all.....again, I turned it up and she took several deep breaths trying to get herself oxygenated again.  Poor baby.  That was a misunderstanding....Ova was helping me get ready for the appointment and he had already turned the oxygen on for me....when I brought baby and hooked her up, I turned it on again (only I was really turning it off)...innocent mistake, but we'll make sure never to do that again.  These are just a few examples out of the many that she's had that show us that she still really needs her oxygen.

That is why I was so happy to be seeing a specialist!

We got to the appointment and they took us back.  They got her weight and measurements, then they had us wait in a room for the pulmonologist.
He finally came in and he was very friendly.  He apologized when he walked in for keeping us waiting....he said he was going over her history, he wanted to make sure he was updated on all her records since she was born.  He was amazed to walk in and see this big huge baby sitting on the table....especially since she was so tiny when she was born.  He kept saying over and over again that if he didn't know it, he wouldn't even have guessed that she's a preemie.  We get that a lot.  Lol. 

I addressed my concerns with him about what the NNP said....and that I was worried that I might be the one adding to her need for the oxygen.  He kinda scrunched his nose and giggled and said "don't worry about that....what you've been doing is helping, not hurting"  He said that he wishes doctors wouldn't tell parents things like that, especially if they don't really know what they're talking about.  Albuterol will not harm her, he told me and he was actually happy to find out how much and how quickly it actually helps her when I give it to her.

He watched her for a minute and then he said "she's definitely got asthma"  I said "already?" and I asked how he could tell by just looking at her and he said that she's showing all the signs for it....the way she moves, the way she breathes.....he just knew it.  He said usually they don't start showing signs of it until their a little older, when they're running around and stuff.... and they call that childhood asthma....but she definitely has it already, as an infant.  He prescribed her a steriod flowvent that I have to give two puffs twice a day, and told me that if she needed, on top of that I can still give her albuterol....but she shouldn't need it everyday anymore.  Hopefully this will help lessen the inflammation in her lungs and help her breathe better, and without oxygen.

Then he asked when our appointment was to see the cardiologist.  That was a surprise to me.... her heart was perfect as far as I knew, so why would she need to see a heart specialist?  He said when he was going over her history, the EKG they preformed in the NICU showed that the part of her heart was enlarged.  I was confused because this is the first I've ever heard of this, and I wondered why nobody mentioned this BIG issue to me before, like when they did the test?  He said maybe it was because after they did the EKG, they did an echocardiogram to double-check and it showed that everything was ok....so they ruled it out.  But now I had another worry in my mind that I didn't have before.  The pulmonologist said that sometimes the reason it's hard for lungs to develop and mature if there are heart issues.  He kept saying over and over again for me not to worry, that it probably wasn't anything, but that we should just go to a cardiologist just to make sure.  How could I not worry?

We left that appointment with a new 'permanant' steroid that she will need twice a day, the knowledge that she already has asthma....the albuterol we came with along with a new prescription....and a worry that now, after all this time, she might have issues with her heart.  :'(  Not what I wanted to hear.

5 comments:

Melissa said...

So sorry to hear the upsetting news with the doctor. I am sure it is nothing. They have to cover all the issues on the table. I hope that nothing comes of it. She is a fighter. Poor little girl! She is so cute though!!!! Love ya!

Christa said...

Wow, so sorry. You guys have been through so much. Then to have more added stresses. Hopefully her lungs will get better and better with each passing month. Prayers for her lungs. Happy memorial day, thinking of cindy, Hugs!

onesupergrover said...

((Hugs)) Monica. You are such a great mama! Innocence mistakes happen, but that doesn't mean you aren't doing your job well! Ryan was diagnosed with asthma around 9 months of age. It made a HUGE difference after he was on daily asthma medication. I tell everyone who has a baby with lung issues to see an pulminologist. There is so much misinformation among doctors on how to treat babies with asthma. Once we got Ryan going on his daily treatments, the albuterol use got less and less and he was a much happier baby. He also started growing more (I think he wasn't growing so much because he wasn't getting enough oxygen for about six months). I hope the heart questions turns out to be a big nothing. Ryan doesn't have any heart issues just lung issues and I hope that it will be the same for Katea. It is so hard being a mommy and not worry. You are in my prayers!

Jenna said...

Hugs and well wishes, Monica! I'll be praying for your family and little miracle. You've been so strong with such an incredible attitude, being an incredible example for me. I hope you'll let me know if you need anything at all. I'd drop my plans to help you in anything you might need. Hoping that throughout these difficult appointments a solution is found for baby. You're an amazing mama! Love you!

Sunny Cardon said...

Glad you got some answers that will hopefully help your little cutie. Have you scheduled an appt with a cardiologist yet? We see Dr Day at Primarys. He was recommended when we thought Antalya had issues with pulmonary hypertension which it sounds like is the concern with your little one. Hope the cardiologist can relieve your fears.