Sunday, November 6, 2011

So, I Don't Do Such A Good Job of Growing Airways

Like I said before, Bailey had to have surgery on her airway at 5 months due to a narrowing in it. I want to take a minute and clarify that in my last post I commented that I was somewhat ignored about my concerns over Bailey's breathing.  I do feel that I wasn't listened to, but only after she went into respiratory distress and was admitted to the hospital in Meridian and kept for almost a whole week being treated for symptoms that weren't really there.  Bailey's peditrician, and her staff, including Aunt Kylie, always went out of their way to make sure Bailey was well taken care of. Bailey was initially treated for asthma and/or croup.  After being treated for that for so long, her peditrician, Kayti, did tell me that she thought her problems were going past what she was being treated for and we might need to look at other things.  Bailey went into respiratory distress before that options could be explored. But I just wanted to clarify that those who took care of Bailey on a weekly basis from birth did all they could do given what we knew to help Bailey.  They were, and still are, wonderful!!

Elissa had her sedated scope with Dr. Carron on Friday.

Here she is in recovery.

She won the hearts of all her nurses.  

Elissa was diagnosed with a condition called Laryngomalacia.  This is a very common condition found in infants, as Dr. Carron says he sees about 3 to 4 new cases a week.  What is means is the tissue and cartilage around the upper larynx collapses as she breathes and therefore, obstructs her airway.  Dr. Carron called the tissue "floppy" and in certain positions "flops" over her airway and closes it up.  Elissa realizes this has happened and repositions herself so it will "flop" off her airway.  Sound scary???  It does to me!

The information I read says that it presents within the first few weeks of birth, but might not be noticeable until the child gets a little bigger and starts moving around more.  I believe Elissa had it at birth because I asked in the NICU why she was making such a loud "quacking" noise when taking her bottle.  I was told she was just making the sound because she liked to eat. Then the pediatrician noticed it and said it was not normal.  From about 9 weeks until now (12 weeks) I have seen/heard a tremendous increase in her loudness. I also notice it when she is just lying still or taking a paci.  Of course, I always notice it when she is taking a bottle.  

Dr. Carron says that it only requires surgery in about 5-10% of babies.  He didn't see any reason why Elissa would need surgery.  He told us that she should outgrow it by 18 months, but it would get louder/worse before it got better.  

So, I didn't do such a good job of growing Elissa's airway either.  I guess what I will be thankful is that Bailey is just fine and although that was a terrible ordeal, she is doing just fine.  Her condition was not life something she would have to deal with forever and it was fixable.  For that, I am thankful.  Elissa's condition is dangerous, but it will fix itself.  She will grow out if it and grow into a happy, healthy child.  For that, I am thankful!

It really puts the whole deal into perspective when you pass the children's cancer wing in the hospital or when you see parents of babies with obvious, life-long problems. This, too, shall pass!  For that, I am thankful!

So, here is where Friday took a turn for the worse.  If you remember, Elissa had some apnea spells in the NICU.  To my knowledge, she didn't have one for at least 7 days prior to us coming home.  Apnea in newborns/infants is different than sleep apnea in adults.  Apnea like Elissa had in the NICU means that for some reason, she didn't breath for 10 seconds or longer and her stats dropped.  In the NICU, they called her apnea episodes "no-stim", meaning they did nothing to her and she started breathing and brought her stats up totally on her own with no intervention from outside sources.  I have been telling Sid that I felt like she was having breathing problems or maybe even apnea, but I never saw her not breathing.  What I would see, or hear, was her gasping for breathe and chocking and gagging after what appeared like she wasn't breathing.  

When they came to get me to come to the recovery room, her nurse, a sweet young man named Brent, said he was a little worried about her because she wasn't bouncing back from the anesthesia like they would like for her to.  But they wanted me to go ahead and try to get some juice in her.  They asked me to stop letting her suck and give her a chance to breathe if her oxygen level dropped to 90%.  Sure enough, it dropped after about 5 sucks.  Once I would pull the bottle out, her stats would continue to drop down to the low 70's before she would bring them back up.  But she always did.  They had us stay in recovery longer and finally, after observation, and me telling them that she does at home what they were concerned about, they moved us to the lower level recovery room for more observation. We were there for what seemed like forever.  But, the nurse there witnessed what we were seeing, too.  

It appeared that Elissa was holding her breathe for and then when she realized it, she would struggle and move around and gasp and gag until she got some air.  She was hooked up the the o2 sat monitor this entire time.  What we learned is that Elissa was, in deed, having some apnea/non-breathing episodes.  I would wager that isn't have true apnea, as I don't think she goes longer than 10 seconds before she realizes she isn't getting any air.  But, after her nurse witnessed this, she left and came back in to tell me she had looked Elissa's diagnosis up and apnea is a symptom of what Elissa has.  

In fact, here is the list of signs/symptoms:

Signs of laryngomalacia

  • Noisy breathing (stridor) – An audible wheeze when your baby breathes in. It is often worse when the baby is agitated, feeding, crying or sleeping on the back
  • High pitched sound
  • Difficulty feeding
  • Poor weight gain
  • Choking while feeding
  • Apnea -- Breathing stoppage
  • Pulling in neck and check with each breath
  • Cyanosis -- Turning blue
  • Gastroesophageal reflux -- Spitting, vomiting and regurgitation
  • Aspiration – Inhalation of food into the lungs
Elissa has stridor, high pitched sound, choking while feeding, apnea, pulling in neck, reflux, and I've thought she turned blue a time or two and even asked about that in the NICU.  So, I'd say she has pretty classic Laryngomalacia.  

Dr. Carron told us that the thicker the liquid/food, the easier it would be for Elissa to take.  We have seen this come true just since Friday.  I'm going to check into that stuff you add to liquids that doesn't  have an calories because she is currently getting ALOT of rice in her bottle and she takes a BIG bottle.  She weighs 12.5 pounds at 12 weeks.  She is a big baby, but not out of proportion.  But I don't think all this rice is a good idea as much as she takes.  So, I'm going to check into that.

And, the big news is, we came home with a o2 monitor that monitors her heart rate and oxygen level.  I haven't used it much this weekend because I can't get the probe on right.  But we will follow up with her pediatrician tomorrow and see what she thinks about all of this.  

I'm so glad to have a diagnosis and even more thankful to know that it doesn't require surgery.  I sure did miss Bailey and Ellie while we were gone, but again, thankful Mom was here to be with them.  

Elissa won the hearts of her nursing staff through that whole ordeal on Friday.  But especially this one nurse, Brent, who told me he and his wife were trying to have a baby.  He told Elissa he hoped when they had a baby, they were as pretty and just like her.  He later told her that he'd just take her on home with him if I wasn't looking. Haha!  He lingered a little longer and kept coming back to the crib and telling her how sweet and pretty she was.  Elissa just smiled and talked to him. He finally told Elissa that she gave him a pretty good scare and woke him up early that morning.  It really was sweet, but it broke my heart.  It appeared that he and his wife had been trying for a pretty good while with no luck.  And it also appeared that he would/will make a great dad someday.  I've thought about how sweet and caring he was my sweet Elissa several times since Friday morning and I hope that one day he and his wife will have him.  

But it sure did make me thankful for the three sweet girls in my life.  Bailey, Elissa and Ellie- Mommy loves you all very much my pretty and sweet girls!!!

Wednesday, November 2, 2011

Elissa-Her Trip To The ENT

This wasn't the post I had planned tonight.  But it's an update I want to record.

If you've been reading my blog from the beginning, you know that Bailey went into respiratory distress at 4 months of age (after I had said over and over again that something was wrong and was sort of ignored) and what followed was a roller coaster of hospital stays, tests, trips to the OR, and eventually major surgery on her airway.  She was diagnosed with a condition called subglotic stenosis, which mean a narrowing of her airway below the glottis, in her airway.  Her surgery took place at 5 months old and her ENT, Dr. Carron, ranks right up top with God and my grandfather.  I trust the man sooo much. I trust his decisions and I obviously trust him with the lives of my children.  He followed Bailey from May 2009 until February 2011.  In February, we had just gotten the news of the twins when Bailey was released from his care with an airway that had gone from being 87% restricted to an airway of being 13% restricted.  We asked Dr. Carron what the thought the possibilities were of a repeat of the happening with one of the twins.  His reply, "not a chance."

Fast forward to August, 2011, after the girls were born.  They stayed those 15 days in the NICU and during that time, I noticed Elissa made a very odd, loud sound while taking a bottle and sucking. I was told that she was just enjoying herself.  I honestly never gave it another thought.

So, when I had the girls at the pediatrician for the 2 month check-up, I was giving Elissa a bottle.  The doctor noticed the noise and asked me if she always did that.  I explained what the NICU told me and she decided she didn't like the sounds of it. When the results of the upper GI study came back fine, she referred us on the ENT to rule out several different conditions that could cause the noise, which happened to be strider. 

Today, we saw Dr. Carron, the ENT.  He was a bit baffled to say the least. I joked with him that he told us this would not happen.  He just sort of shook his head like this is really very strange.  As soon as he listened to Elissa breathe, he made the comment that he felt like it was going to be subglotic stenosis.  Tears immediately sprang to my eyes, but I was sort back in the corner with Ellie and quickly got hold of myself.  But I really just wanted to run out the door.  

the ventilator in a medically induced comma??  I do, and it wasn't pleasant. It was frightening.  I can't imagine going through that again, period, much less with 2 more children at home.  

The plan of action is to go the operating room and have Elissa sedated to do a more in depth scope to really asses the situation.  And then we'll go from there.  They were able to get us into the OR this Friday.  Thank God my mom was on her way.  

So, that's all I know for now.  This sweet girl will have a sedated scope on Friday and if there is some type of intervention that needs to happen, it will more than likely happen at this time.  I'm not a happy camper right now. I just love all of my girls so much and can't stand the thought of them suffering or uncomfortable.  And this go around, I know what to dread.  Please say a prayer for us as we go through this and pray that it's more or less a condition that we will have to just watch and not one that requires immediate surgery.  Dr. Carron did say that she has a lot of swelling and inflammation  due to reflux and it could just be severe reflux causing strider.   So we'll see.  Pray for my other girls who might have to be away from us.  Pray for my mom and Sid's mom, who will more than likely be the ones to care for my other two.  And of course Sid, who continues to be the level headed one of the bunch.  I'm really just stunned. I wasn't prepared for this and to be honest, I don't think that's what she has.  There are alot of things that Bailey had that Elissa doesn't have.  The only thing they had/have in common is the reflux and strider.  

Elissa Marie Whitehead, we love you and we promise to do all we can to keep you healthy and make decisions that only benefit you and not hurt you.  It took 35 years for God to bless me and make me your Mom, and now that I've had you for almost 12 whole weeks, I can't imagine life without you.  You will grow big and strong one day, like big sister Bailey, and not need me as much as you do now.  But we love you soooo much and we want you well as soon as possible sweet girl!

Ok, Ok!  See her gown??? I heart it so much!!! Look What Gram Made, Gram can be found on face book, did Bailey's big sister shirt and made her guitar outfit.  I saw these gowns on Etsy, but they were really expensive.  Since I have to buy times 2, I just couldn't do it.  I told Gram what I wanted and ta da....she came up with those gowns and monogrammed their names on them-for a fraction of the price of what others are selling them for.  She has some really cute Christmas tees I need to pick out and order.  And what about their cute pumpkin outfits they wore from Halloween?  I got those from a place out of Birmingham.  Taylor, the owner, went to high school with my sister Maggie and she has this online store called Spruce Boutique.  She is on face book as well.  Be looking for a fun give away just in time for Christmas from Taylor and Spruce Boutique.  

Tuesday, November 1, 2011

Halloween 2011

We didn't take Bailey out trick or treating to houses last night because she had done plenty and because we went to see Sid's grandmother, Mammie, at the assisted living place and that took longer than expected.  She got to trick or treat up and down the halls there with Mason, so she was perfectly fine.

I'm having to blog using Google chrome now and I do not like it.  Once I get my pictures loaded, it's hard to go back to them and leave a caption.  For some reason, internet explorer shuts down when I try to post from it.

Here are some pictures from yesterday.  The girls wore their pumpkin outfits again but I still didn't get great pictures of both of them.

My sweet little witch!

I don't think I've ever posted a picture of the stroller. I LOVE this thing.  It came recommended from my friend, and fellow twin mom, Mandy.  It only weighs like 10lbs and is just a frame.  All you do is unhook the babies from the base of their seats and click them on the frame of this thing.  It is sooo easy to use and has bought us some time at having to purchase a very expensive twin stroller.  There is an entire planet of double and triple strollers out there.  I was saved of the decision for a bit by getting this.  It's obviously only good as long as the babies are in carriers.  And it was a bit un-natural to push at first because it feel so long, but we love it!!!

My little witch checking out a pumpkin beside one of the resident's doors.

Mammie with 4 of her great grand children - Mason, Ellie, Elissa, and Bailey.

Elissa took a break from being passed around and rested on Mammie's bed.  She is such a sweet baby, and soooo big!! But, I will say that she is no bigger, in fact smaller, than two other baby girls I know that were born after her.  She does get rice in her bottle due to reflux, but so does Ellie and she isn't this big.  Elissa is just a big baby.  But isn't she sooo pretty!!!

Partner's in crime!!  Bailey worships this child.  When Mason walked in, she squealed, "AHHH, my cowboy Mason!!!"

I tried to get a few pictures of Bailey and the girls, but it didn't turn out so well.  They are just too much for her to handle alone.  Elissa is just too heavy for her and Ellie is so nosey, she has her own agenda when she is up looking around.  

I took a picture of the girls close up after we got them back in the car seat.  

This little girl is already a Mama's girl!  Sweet thing, Miss Ellie.  Look at those eyes.

Elissa, snoozing again!

When we were leaving, Colin pulled up with his mom and sister.  He was a police man.  He told me the other day he was a good police man, not a bad one that arrested people.  Haha!  Of course, Mason did not want his picture taken with the littles so he made a face...and they had to make one too!!

In other news, I ventured out of the house alone with both babies today.  It is not for the faint of heart and I will not be doing it again anytime soon. I have been somewhere with Bailey and one baby, and of course all 3 girls with Sid's help, but never both babies without someone else in tow.  

We take Elissa to see our beloved ENT, Dr. Carron, tomorrow.  The doctor has thrown out several things she wants to rule out, the condition Bailey had being one of them.  I don't know what's going on, but something for sure is and I'm ready to get to the bottom of it.  I don't feel that he will be able to diagnose her in his office, although he can do a preliminary upper airway scope.  I'm thinking that Elissa will have to go to the OR for a sedated, more detailed scope.  I am VERY nervous, but I will say it could be alot worse and I recognize that!!!