Olivia the Actress

Back in October when Olivia was in the hospital, Riverton Hospital did filming for their pediatrics marketing campaign.  Below is a copy of the ad that will air for 3 months at the movie theater at The District starting in April.  Take a look and see if you recognize anyone ;)

 

 

Olivia Update: Healthy Lungs, Healthy Heart, Happy Baby!!

My mom mentioned that some of her friends have started calling her to check in since I haven't updated the blog for a while. Can we just establish a rule now that says "no news is good news"?  :) 

I'm pleased to report that Miss Olivia is doing fantastic.  Like I mentioned in my last post, we tried new asthma meds and it helped a little bit but didn't fix things entirely.  The pulmonologist ordered a swallow study in early December.  We were lucky to finally able to take Olivia off oxygen the day before her swallow study was done.  I went into the swallow study fully expecting this little girl to have some swallowing problems but she proved me wrong.  She swallows liquids and solids perfectly.  I was pretty surprised and frankly left a little boggled about why she was still wheezing and rumbly.  The speech therapist indicated that she felt Olivia's reflux was the cause of her wheezing.  She suggested that we switch Olivia from Zantac to Prevacid to see if the stronger reflux med helped.  Sure enough, it did!! Can I just tell you how nice it is to have this little girl breathing normally without having her tethered to oxygen?! 

Today Olivia had a cardiology appointment.  Her cardiologists were both very pleased with how she looks.  Her chest x-ray looked a little "hazy" but Dr. G says that has been fairly typical for Olivia and could still be some residual from the respiratory issues these past few months.  For now it isn't anything that he is terribly concerned about.  Overall they thought she looked great and said we don't have to go back again for 6 months!  That's definitely a very good sign!

She weighed 16.3 pounds and was 25.75 inches long today.  She's now at a whopping 4% for her age.  :)  Relatively speaking, she's still tiny but everyone that saw her today commented on her sweet baby chub.

The picture is blurry but you get the idea.  And yes, she's chewing on coband.  It's her very favorite hospital "toy".

Baby girl is starting to hit some milestones.  She started sitting on her own during her hospital stays in October.  She used to hate tummy time with a passion.  Now she tolerates it for about 2 minutes and then decides she is done.  Her little arms still aren't strong enough to hold her up and she's not entirely convinced that bearing weight on her legs is the best idea either.  But I'm noticing that she's starting to stretch farther for things from a sitting position and she's finding herself reaching far enough that she topples over onto her tummy more and more.  She's also starting to bear a little more weight on her legs.  Clearly she's working on her own timeline but she really is progressing by leaps and bounds.  She plays patty cake now and will sometimes cover her eyes for peek-a-boo (melts my heart every time).  She is eating solids now too.  I waited until after her surgery because she just didn't have the energy or desire before. It took a few months after surgery for her to reach the point where you could tell she was visibly interested.  Now she is happily eating 3 meals a day. :)  She's entering into the phase where she gets into everything.  Or at least into everything that her current mobility level allows her to reach.  The other night I was literally pulling things out of her hands left and right while I was trying to get some work done on the computer.  She's decided my computer mouse is the golden ticket and she is determined to snatch it anytime she can get it.  Last night she was doing her own little modified crawl/lunge to get to it.  It's only a matter of time before everything clicks and this girl starts crawling. 

I would have to say that at this point Olivia is probably the healthiest she has ever been and it's so nice to just sit back and watch her grow and take things easy for a bit.  Of course I wait with baited breath for the other shoe to fall but for now I'm trying to just enjoy things slowing down in the medical world.  Fingers crossed they stay that way. 

Olivia Update: Heart is great, lungs are not so great

5 weeks later and poor Olivia is still on 0.5L of oxygen.  Needless to say, we're starting to wonder why it's taking so long for her lungs to clear up and start behaving.  Her pediatrician sent us to see a pulmonologist at Primary Children's last week.  Other heart moms had told us how much they like Dr. U and I have to say I like him too.  He definitely agreed that Olivia is wheezing quite a bit.  He said the problem could be one of three things.

1.  Asthma (just like her sister and I).  For now he wants to make some changes in her asthma meds and see if that helps.  If it doesn't, then we'll look at options 2 or 3 (see below). We've been treating her with Xopenex and just started using an inhaled steroid called Pulmicort last week.  He now wants us to continue with the Pulmicort and add a daily dose of Singulair to the mix.  We're to use the Xopenex if she starts showing signs of working harder to breathe again.  So the Pulmicort and Singulair are the daily meds and Xoponex as needed.

2.  Tracheomalasia--I'm going to pull an official definition from the US National Library of Medicine website.

Tracheomalacia - congenital

Congenital tracheomalacia is a weakness and floppiness of the walls of the windpipe (trachea), which is present at birth.

Causes

Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth.

Congenital tracheomalacia is very uncommon. Jill note: There is also a non-congenital form of Tracheomalasia and from what I understand the symptoms are the same.  So whether it was or wasn't present at birth really doesn't matter much.

Symptoms

Symptoms can range from mild to severe and may include: I've highlighted the symptoms Liv has

• Breathing noises that may change with position and improve during sleep (Jill note: asthmatics are usually worse when they sleep but Liv actually sounds better)
• Breathing problems that get worse with coughing, crying, feeding, or upper respiratory infections
• High-pitched breathing
• Rattling or noisy breaths

Treatment

Most infants respond well to humidified air, careful feedings, and antibiotics for infections. Babies with tracheomalacia must be closely monitored when they have respiratory infections.

Often, the symptoms of Tracheomalacia improve as the infant grows.

Rarely, surgery is needed.

Outlook (Prognosis)

Congenital Tracheomalacia generally goes away on its own by the age of 18-24 months. As the tracheal cartilage gets stronger and the trachea grows, the noisy respirations and breathing difficulties gradually stop. Persons with tracheomalacia must be monitored closely when they have respiratory infections.

Possible Complications

Babies born with Tracheomalacia may have other congenital abnormalities such as heart defects, developmental delay, or gastroesophageal reflux.   <---Hello! This is Olivia all of the way.

Aspiration pneumonia can occur from inhaling food.

3.  The other possibility is that Olivia isn't swallowing properly and is aspirating her food.  She's always had a hard time with choking and coughing when she eats.  We've just attributed it to reflux and her heart problems wearing her out (prior to surgery of course). 

For now the doctor wants us to make the asthma medication changes and then watch her for the next few weeks and report back to him.  If the asthma meds don't help then he wants to order a swallow study.  Our pediatrician sent us to the pulmonologist b/c she thinks Olivia has Tracheomalasia.  After meeting with the pulmonologist I thought that maybe we were really dealing with a swallowing problem.  But today after looking up more info on Tracheomalasia to include in this post, I'm starting to think maybe this really is Tracheomalasia and that the Tracheomalasia is also contributing to her problems when she swallows. Considering our family history of asthma and allergies plus her eczema, the odds are pretty good that she has some form of asthma too.

We've been following the new asthma med protocol for almost a week now with only a little improvement.  I'll give it another week and then report back to the pulmonologist.  Regardless of improvement, I still want to have a swallow study done.  I just don't like how often she is choking and coughing while she eats.  It never occurred to me that she could be swallowing incorrectly.

As always, thank you to everyone for your thoughts and prayers.  Miss Olivia might be struggling but through it all she is still our happy go lucky baby.  I've never seen a baby with such a sweet and patient disposition.  It hasn't been an easy year but having Olivia in our home has been such a pleasure and a blessing and of course we wouldn't trade her for anything.

Olivia Update: Bronchiolitis Part 2

Medically speaking, our little family just doesn't do normal.  If it's a little off or a little funky, there's a pretty good chance the girls or I have had it.  And you better believe that if we have an illness, we rarely follow the classic textbook symptoms.  Case and point: Olivia and bronchiolitis. 

Two weeks ago (Tuesday Oct 4) Olivia started with a cold.  By Sunday the 9th, she was wheezing so we took her to the emergency room.  Long story short, they admitted her for the night for observation because of Bronchiolitis.  She stayed the night and was released Monday around 4:00 with 24/7 oxygen and a prescription for the outpatient respiratory clinic for deep suctioning. 

I took her in twice a day for a week to be deep suctioned.  When we went in this past Sunday (the 1t6th) the respiratory therapist didn't like how she looked and suggest the pediatrician come look at her.  Long story short, Olivia was once again admitted to the hospital and we've been here for 4 days now with no end in sight quite yet.

In order to go home Olivia needs to be able to maintain her oxygen sats while on 0.5L of oxygen or less and she has to be at a point where she only need to be deep suctioned 2-3 times a day.  Right now she's on 1.0L of oxygen and is being deep suctioned every 4 hours.  For now we just have to wait until this little girl's lungs decide to cooperate.  There isn't an estimate for how long this could take.  I would guess we have at least a few more days here in the hospital.

Some have wondered why she has been sick for so long without much improvement.  The hospitalists here believe that she had one cold virus and then as she was getting over that one she then got another cold virus and that's why her symptoms were suddenly worse this weekend and why she's back to needing more oxygen and more deep suction.

She had the same thing back in May and was in the hospital for 10 days.  It took her 3 weeks to get better when all was said and done.

Now here we are in the same boat again.  Now that her heart is "fixed" her pediatrician said it's time to start treating her like a normal kid and I started to think that we'd be able to relax some of our germ paranoia.  Now I'm not so sure.

Family Pictures August 2011

My best friend is a photographer and an amazing one at that.  I jokingly call her my "photographer on retainer".  Thank you Nell for these beautiful pictures.  You're the best friend a girl could have.  Love you (and your super sweet photography skills) so much. 

Olivia Faith

Here are some pictures of our sweet girl that my friend Janelle took a few weeks before surgery.  It was hard to choose only a few favorites to post.  I love them all.

Amazed

Olivia Faith is a rock star.  I cannot believe how well this girl is doing.  She was happy as can be to get home on Saturday.  It was cute to see Eliza and Olivia reunited.  Those girls sure do love each other.

I think coming home was good for Olivia all around.  She slept so much better on Saturday night then she did the night before in the hospital.  In fact, she went to bed at 9:00pm with a dose of Ibuprofen and didn't stir until 8:00 the next morning!  I was shocked when she woke me up and I realized it was 8:00am.  I thought for sure that she would be angry as a hornet after going so long with no pain meds but she was happy as could be!!  I was shocked.  She didn't even flinch when I picked her up. 

She then spent the next 12 hours wide awake with only one 30 minute nap.  Again, you'd think I would have had a cranky girl on my hands but she was her usual happy self for the entire 12 hours.  Honestly, she is the best baby--so happy, so easy going and so mellow.  (Yes, I realize how lucky I am.)

Prior to surgery, Olivia tired easily.  Her core muscle strength just wasn't where it should be for a 7 month old.  She doesn't sit up yet and flops right over when you try to let her sit on her own.  She also has no interest in holding her bottle or trying to stand on my lap like most babies will do.  Believe it or not, 5 days after surgery, I already see a difference.  A few times now I've had her on my lap and she's been able to sit on her own with no help from me.  She also grabbed her bottle a few times today, stuck it in her mouth and held it by herself.  Doesn't sound like much but it's definitely a big improvement.

If you saw her fully clothed, you would never guess that this little girl has open heart surgery 5 days ago.  When the nurse practitioner called for an update today she was thrilled to hear how good Olivia is doing.  Her parting words were "I wish we could have more babies like this."  I know how rare it is for Olivia to do be doing so well so soon and I am so grateful.  As always, thank you to everyone for your prayers.  We have felt your prayers and I know your prayers on Olivia's behalf have helped speed along her recovery.