Cardiologist Appointment #2

Daisy and I headed into her to see her cardiologist for the second time today.  We had weaned off digoxin after the first visit and there have been no issues.  We are now cleared to wean off the propranolol, woohoo!  We will be removing one of the 3 doses starting tonight.  We give her the propranolol at 8AM, 4PM, and Midnight.  I will give you one guess which one we will be removing first.. haha.  We will remove the next dose in 48 hours... then the final dose 48 hours after that.  Once we have weaned completely we will be headed back to the hospital to get a halter monitor for Daisy.  This neat device will record her heart for 24 hours to a little data recorder.  If her heart looks clean for 24 hours, we won't have to call the cardiologist anymore... :-)

We engaged with the Alta regional center to assist us in tracking Daisy's development.  Her case was reviewed by the regional center and she will be taken into the program.  We will have a team of 4 folks coming to the house soon to begin the process.  We are excited to begin working with these folks.  We have a family member and a friend who has worked with Alta regional centers before and had very positive things to say.

Daisy has been doing quite well.  She loves all the attention she can get from her Momma, her Brother, and of course her Daddy.  She has really found her smile over the last couple of weeks... which is just wonderful to see!  She loves to sleep in the arms of Momma or Daddy for daytime naps and has been sleeping pretty well in her bed at night.  She sleeps much better at night than her brother did at this age :-)  She weighed in at 12lbs 8 ounces today and is starting to chub up...exactly what we want to see.  She has become too long/tall for her bassinet and is now snoozing in her crib at night.  She last measured at 23.5 inches but I would guess that we have added to that since her last measurement.

We are slowly venturing out a tiny bit into the world with Miss Daisy.  We went to our first play date since this all occurred, we have been to target, and went on a walk around the neighborhood.  Yes I know we are sure daredevils, haha.

Our Keppra wean continues, we are about 3.5 weeks from being at the 50% level and another conversation with our neurologist.  We have also managed to finally get all the MRI and ultrasound imagining sent to our neurologist.  This is a much larger (unnecessarily) task than it would seem.  We are excited to hear what our Doc has to say after reviewing the material.  More to come.

Doing well

Our little Daisy is doing well.  Weaned her off digoxin and we have had no issues.  Christina and I have gotten pretty good at listening to her heart :-). We continue our slow wean on the Keppra.  In the last few days Daisy has become quite smiley.  The grins of approval & happiness (or possibly gas) make us feel great as she is feeling great.

Last week we got the last of her immunizations completed with no issues.  It feels good to have a stretch of time before our next scheduled pediatrician appointment.

She has began to fall into a decent sleep routine and seems to be well ahead of her brother when he was this age.

We are looking forward to our meeting next week with the cardiologist where we would like to begin weaning the propanolol.

The arms just wanna be up haha

The morning stretch then sleep

Our sweet Daisy

Hiya Everyone

Daisy had her cardiologist appointment yesterday and we began weening her off of one of her two heart meds.  Hooray!!!  Tomorrow morning will be her final dose of digoxin.  Did I say hooray yet!!  We will meet with the cardiologist again in 2 weeks and begin talking about weening the propranolol.  Christina and I are monitoring her closely to ensure that weening the meds do not result in further SVTs.  That cool stethoscope is really coming in handy :-).

I am working to have the MRI images and associated reports sent to our neurologist at UCSF.  The process is as cumbersome as you can imagine....sigh.

Daisy continues to show a little irritability at times due to the withdrawal symptoms.  We are trying keep her calm and cozy all hours of the day.  At her last Dr appointment she measured 23.25 inches tall and 11 lbs 4 ounces.

"She looks great"

Christina and I took Daisy to see a neurologist at UCSF yesterday.  The quote in the title of this post is his.  He did a full examination of Daisy and did not find any issues.  He did note that she is a little high strung but this is likely a result of coming off methadone and is one of the side effects of the Keppra seizure medication.  He believes that we can ween Daisy down to 50% of the original amount of seizure med over the next 7 weeks.  We will check in at that point and then look to ween her completely off the medication.  He does not believe in medicating for a condition that has not occurred.  Christina and I could not agree more.  We began the slow ween last night.  Christina and I could not be more happy with the neurologist we saw yesterday.  He is clearly at the top of the pediatric neurology world and we are very thankful to have Daisy in his care.  We are working to obtain the actual MRI imaging for him and look forward to his thoughts moving forward.  He also cleared us for the DTaP vaccination which we will be getting promptly next week.

It was a very long day yesterday with a trip to San Francisco and back.  The entire family was zonked out for an extended time last night... and we needed it.

Today Miss Daisy is taking a lazy Saturday.... and smiling in her sleep (I would smile to if I snoozed and ate all morning long).

What comes next....

We have been home with Daisy 48 hours now and it has been great having everyone at home.  She has spent 50% of her life in the hospital at this point so bringing her home was like bringing her home after birth all over again.  I took her for her after hospital check yesterday and 2 month appointment today (she did not care for her vaccinations).  She is now nearly 11 pounds.. and 22.5 inches long.  She was 7 pounds 6 ounces at birth and 19 inches long.  I do believe she will be a tall one just like her brother.  We are concentrating on getting her big, robust, and healthy.  We have two main areas that we are concentrating on going forward.

1.  The brain:  We are looking for a great pediatric neurologist and we think we may have found one at UC San Francisco.  We are anxious to meet and begin talking with him.  Our first order of business is to get cleared for the DTaP vaccine as our pediatrician wanted to get clearance from the neurologist before administering this preventative vaccine.  We are also excited to get started with the Alta regional center.  This will help us in finding the right providers, and therapies to track Daisy's development and assess the impact of the low oxygen damage on her development.  Huge thanks to a friend of mine for getting us way ahead of the game here, you rock sir!

2.  The heart:  We strongly believe that the SVT episodes were caused by a slightly deep PICC line tickling the heart.  The UCD cardiologist seems to agree with us but they wanted us to follow up with another cardiologist before we could look at discontinuing the medications.  We will be meeting with another UCD cardiologist very shortly to look at this.

Daisy is still feeling the effects of a good period on the sedative (which is a pretty heavy narcotic) and then being stepped off the sedative with methadone.  She is a little crabby at time which is likely to continue for the next 3-4 weeks.

Christina and I have really been enjoying her smiles since she got home.  She does seem to be much more at peace since arriving home.  Jeremiah is very happy to have his sister home... maybe a bit too excited :-)  We will likely be keeping to ourselves indoors for a bit.  We are almost all sickness free... and I would like to have an extended period of wellness for the 4 of us.