Ruby Hope McKee Starling

Ruby rocked the carseat test Tuesday night.  Because our flight home will be 3 hours long, they wanted Ruby to sit in the seat for a full 3 hours without any significant medical events.  I put her in there around 9, fiddled with the straps for half an hour to get them snug but comfy, and then she proceeded to fall asleep for a solid 5 hours.  We were joking that we should book a flight to Hawaii instead of Texas. 

On the other hand, she didn't fare so well with her hearing screening.  Her right ear is perfectly fine, but she has trouble hearing high-frequency sounds in her left ear.  She will get a more diagnostic evaluation in the next 2 or 3 days to better quantify what's going on.  We really aren't terribly worried or disappointed, since we know she is able to hear in general.  It's just something we'll need to track and keep in mind as she learns to speak and do more and more things.  Hearing loss is quite common among NICU babies and especially among CDH babies and especially, especially among ECMO CDH babies.  There are multiple suspected causes of this but few certain known causes.  Many antibiotics and diuretics are known to be ototoxic (cause hearing loss), and she has taken some of them that do cause that on rare occasions.  Being on ECMO iself can cause damage to brain tissue and could affect hearing.  There's also the possibility that whatever causes CDH increases the chances of hearing problems.  We knew early on it was a possiblilty and quite frankly, we're happy it's only frequency-specific and doesn't affect both ears.  The audiology tech doing her screening said that it was only sounds above 4Khz, which would affect the perception of hissing type speech sounds made using your tongue and teeth like F, S, SH, T, TH and D.  We were already planning to continue involving occupational and speech therapists to help make sure Ruby catches up and stays caught up with all her development goals, so working on speech and hearing is just another goal to add to the list.  Honestly, we're not upset or disappointed about this.  It's just another thing we can overcome.  We'll find out later this week what additional treatment might be necessary to ensure Ruby continues to develop as well as she has so far. 

Ruby's occupational therapist did a full assessment of her progress and it was very positive.  She scores various skills and abilities according to how old a baby is when they are able to perform that skill.  So for many things Ruby is performing right at the 3-month skill level, and a couple things she is even at the 4-month level.  The only things she was behind on were things involving laying on her tummy, which she wasn't able to do for a long time, and the grip on her left hand not being quite as strong as her right.  So being in the NICU for 3 months and on ECMO for 1 month hasn't put her too far behind other babies and we know what things we can work on to catch her up.  Overall, the OT was very excited with Ruby's progress and was worried we might not qualify for therapy once we're out of the hospital.  So she was going to be very careful in the wording on her written assessment. 

We didn't get any new pictures, but here are some from earlier in the week we haven't shared yet.

Happy Ruby:

Pouty Ruby:

Blissful Ruby:

She has quite the range of emotions and is good at expressing them.  The occupational therapist was especially impressed with her expression of feelings and her link between that and the reaction of other people.  She said that she is beginning to realize she can use emotions to manipulate other people, which is an advanced skill for older babies.  Even the neonatologist said that Ruby is one smart girl.  This all worries me, since I'm not good at saying "no" to cute girls.  Just ask Holly.  I' might as well go ahead and see about building that pony stable in the back yard.