Sitter, sitter

Who lives in a pineapple under the sea?    SPONGEBOB SQUAREPANTS.

Yes, I hear that phrase at least twice a day now. Usually I am singing this around six or seven in the morning. It is just catchy enough to stay with me throughout the day. I have yet to memorize the rest of the song, which is also slightly annoying because it's that one line, over and over and over.

I'm sure someone warned me during my pregnancy about how TV time would not longer be mine, but really the only advice I remember is get sleep.  The advice came in two forms.  The first was before she arrives sleep as much as you can.  Unfortunately, tingly hands kept me up most of the night in months five through eight.  The second was nap when she naps.  I fully intended to follow this, but when Lucy goes down for a nap I run around trying to get any and everything done I can while she is quiet.  I had not yet done this until last Sunday arrived.  Lucy woke up at six am and although we were not up late the night before, I was dead tired.  I put her in her bouncy chair and the aforementioned cartoon on the tube and laid on the couch.  But a number two through her onsie put a little damper in my relaxing morning.  I stripped Lucy down and grabbed the scale (we still have to weigh her to ensure she is gaining weight).  Lucy decided the scale would be a great place to pee.  After she finished, we got a diaper on, a onsie and settled on the couch.  To my surprise, I looked down and she was sound asleep.   I slowly got up and walked into the bedroom, set her in her crib and for once took some advice and laid down too.  It may have been the best hour and half nap I have gotten since last October.  We shall see if I follow that advice again.  I hope so!

We were hoping the echo would show some improvement in her pulmonary arteries.  The additional diuretics, however, did not help to open the pulmonary arteries so Lucy will definitely need a catherization.  This will be an overnight stay at the hospital, so the doctors can monitor her after she comes off anesthesia.  The catherization will balloon the narrowing pulmonary arteries to allow more blood flow to her lungs.  This should help her come off oxygen.  We are trying to schedule this within the next two weeks.  The catherization will delay getting the g-tube by about three weeks.  We will look to schedule the g-tube placement in early December.  Possible early Christmas present: a tube-free Lucy.  That would be amazing!

Our meeting with Early Intervention also went well.   Lucy qualified and will receive physical and speech therapy once a week. We have been working with her before our sessions start and already see amazing progress. She found her feet and is very curious. 









The biggest accomplishment so far is she is no longer a supported sitter!  Lucy is able to sit for about three minutes on her own.  She absolutely loves this new point of view.  Sometimes she will even sit up in her bouncy chair.

 

She has been making progress in her feeding too.  We have been practicing with puree foods and prunes seem to be her favorite.  As you can see below, most of the food does not make it into her mouth.  We are also slowing increasing volume while decreasing time.  Yesterday was the first day since July 15th that Lucy did not throw up!  We hope this too can become the new pattern.  

Sometimes she even helps with laundry, but she is not real good at folding.

moving pieces

Where to start, I didn't feel like we had a lot going on, but now all of a sudden it seems there are a lot of moving pieces. 

First, we had our monthly cardiology appointment at the beginning of October. 
When we got there Lucy was really congested and apparently to everyone at the hospital, a little blue.  I didn't really realize she was so blue.  But I guess it's like when you lose weight....the people that see you everyday don't notice a ten pound loss, but someone that hasn't seen you in a month notices immediately.  So we bumped her back up to a half liter through the appointment.  Lucy had usual echo and EKG.  I think so many would laugh if they could see the lengths we go to to keep Lucy quiet and happy through an echo.  My dad is holding a toy that plays music in one hand and a toy that lights up in the other as I am trying to keep the pacifier in her mouth, make sure her legs stay relatively still, all while batting her hands away from any cords she could grab.  Do that for forty five minutes and we're exhausted.  The results however were great.  Dr. Husayni is seeing increased function in her right chamber.  They did see some narrowing in the pulmonary arteries which along with some congestion explains the blue-ish hue she was sporting.  As for now, we started two more medications, both diuretics.  This is on top of the one she is currently on.  The reason for starting new ones is because the lasix can be hard on the liver, so they did not want to increase the dose.  The second one they started (diuril) works well with the lasix, but can deplete the body of potassium, so the third one (aldactone) helps to keep the potassium in the body.  We will follow-up in a week or so for some labs to make sure her potassium isn't too low.  If the new medication doesn't help, we will go in for a catherization, ugh, overnight hospital stay.  At that time they will decide if they can balloon the arteries or need to place a stent.....it is another wait and see situation.

Last Wednesday, an Early Intervention physical therapist came to evaluate Lucy.  She found that Lucy is averaging about the same as a three month old.  It looks like we will qualify, which would mean speech and physical therapy in home.  Great for the winter so we don't have to take her outside.  We have a meeting with the case manager and all the therapists this Thursday, so we will have a clear plan after that.  Prior to the meeting, we wanted to complete a swallow study so we would have some information to provide the speech therapist.  For those that don't know, a swallow study is like a x-ray video.  The therapist placed Lucy in a chair (it looked like a roller coaster seat) and buckled her in.  Then they try both liquid and puree and watch how she swallows.  They watch for her tongue to press against the roof of her mouth,  a swallow and the food to pass through to her esophagus.  This is to make sure she will not aspirate.  She passed!  We got the go ahead to start trying puree foods.  It's not going great, but we're just going to keep trucking along.  After the swallow study, we had a short conversation about a g-tube.  The difference is this tube goes directly into her stomach.  They call it a button...and it will require surgery along with a three day hospital stay.  Angela (our cardiac nurse) says if Lucy isn't eating all calories by mouth at a year, they would require it.  We have the option to do it sooner and there could be some benefits. 
    1.  Vomiting will decrease
    2.   Irritation in her nose and throat will decrease
    3.   Eating by mouth could be more interesting
    4.   Her feedings can be done quicker
    5.  Medication can be administered through the tube.
    6.    NO TUBE TAPED TO HER FACE

Can you tell which one is most motivating to me?  I just want to see her whole face!!!!
On the downside, it is still surgery and another trip to the hospital. 

Stranger danger has clearly set in as well.  Just ask my sister, who got the joy of watching her and for almost the entire time Lucy cried.  Since we can't take her a lot of places we encourage visitors!  Just call to find out a good time and as long as you are not sick come on over.  We can .not guarantee she won't cry, but we will try really hard to get a smile out of her.


Her new favorite thing is to hold her feet in the air, getting those abs strong.

Tricking her into tummy time.

Her 8 month picture. Happy 8 month birthday miracle baby.  Yes, I forgot to take one earlier, so this is right at bedtime

 

Practicing sitting with some couch support