Daisy's Development

Daisy has turned 4 months old and has now been home from the hospital for 2 month.... woohoo!  Christina took her in for her 4 month check up (and shots....sshhhh don't tell the kids) a couple of days ago.  She is progressing nicely in her growth.  At her 2 month check she was in the 20th percentile for weigh and 50% for height.  She is now in the 80th percentile for height and weight.... what a difference a couple of months make!!  Her head size is on the small end of things.... I am glad to know she does not seem to have my giant bulbous head :-).

We have passed 50% wean on the Keppra (seizure medication) and we received the OK from her neurologist to continue weaning down to ZERO.  It will take us 5 more weeks from today.  She has not had any issues nor seizures during the wean period (or any other period for that matter).  As we have weaned her down on this medication we have found a very happy baby that cannot, at times, put her gummy smile away.  She loves to coo, laugh, giggle, and make baby talk.

We have been meeting with the Alta regional center in our home to assist us in tracking Daisy's development.  The initial visit brought four folks on our care team into our home (Case manager, Nurse, Special Ed teacher x2).  We met with the team for 2.5 hours and developed a great plan to help assess and track Daisy's development over time.  I should back up and explain what the Regional center is.... The regional center is a service of the California Department of Development Services.  They exist to help children in California who have or have the potential (this is us) for development issues.  They provide a pretty broad spectrum of specialists, therapists, and educators to track Daisy to her developmental goals and provide assistance should we find development items which are trending behind.  We have also had our first follow up/on going appointment with the nurse and occupational therapist and Daisy's development is tracking quite well.  We have a couple of small areas where she is trending a little behind.  This is remarkable as she lost an entire month of opportunity to develop while in the hospital.  Our support team from the regional center has been great and we are looking forward to our second on going appointment this week.

We have weaned off of all heart medications with no issues.  Daisy was fitted with a halter monitor for 24 hours several days after we have been off the heart meds to ensure that there is nothing unusual with the heart.  We are awaiting to hear the results of the monitor.  We do not anticipate any issues.

We have began to slow venture out to play dates, the park, and even an occasional bite to eat.  Daisy has become very aware of her surrounds and seems to be very curious of everything just like her big brother.  In addition to her coo's, giggles, laughs, and baby talk she loves to try and consume both hands at the same time, roll over on her side, and "boot scoot" across her play mats.  I have a feeling that we will have a little girl motoring about the house very soon.

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.

Discharged

We were discharged late this evening and we are home.  We are excited to all be home and to have our sweet Daisy home as well.  To say we are a little nervous would be quite an understatement.  More to come tomorrow.

For now our hearts are full

Sleeps like Daddy

This kiddo sleeps like her Daddy :-)

Maybe another day...

Well it seems our little one is having a few more withdrawal symptoms this morning and will not come home today.  While I am bummed... I want her to come home when she is truly ready.  We are close....I can feel it.

Christina came home for just a little bit this morning for a cookie date with Jeremiah and I.  It is the first time we have seen one another in 5 days.  It was fantastic.

Could it be.....

Daisy has tolerated being off methadone today fairly well.  It looks like she is a drug free little baby now... awesome!  Unfortunately we don't have many options when it comes to the seizure med (it is one of the safest and least likely for crazy side effects)  One of our favorite nurses showed Christina a technique that works much better... so we will see how we do.

Today we received some exciting news.... we may be able to come home tomorrow.  I do not want to get my hopes up too high but Daisy has been rock solid on all of her stats and metrics for some time now.  We will find out more tomorrow.... but I am hopeful we will once again be together as a family very soon.

Christina picked up all of Daisy's meds that she will remain on when she comes home today from the hospital pharmacy.  This is another great sign that a home coming is near.  Woohoo.

I have been busy at home steam disinfecting everything.  While we have done this a couple of times since she has been in the hospital... I am doing it again to ensure our little Daisy does not walk into another sickness... as we have had colds after flu.  Now that we all seem to be past it or on the tail end of things... it is time to disinfect again.  Hooray for really hot steam!

When speaking with the cardiologist the other day he recommended that I take one of the disposable stethoscopes that the hospital has to have at home.  I am never one to want to take anything but my family home from the hospital (and the germs that come with it) and how good can a disposable stethoscope possibly be.  I researched the stethoscope to have and came up with 3M Littmann.  My friends at Amazon quickly shipped out a beautiful Master Cardiology stethoscope.  I never imagined I would own this type of thing... nor did I think I would be excited to get it.  Jeremiah and I had a blast listening to our heartbeats today.  He requested that we "listen heart" right before he crawled into bed.  He is amazed at the thump-thump coming from his and my chest.

Hi Everyone!

I like to smile occasionally in my sleep.

Keppra tastes terrible....

Daisy received her last dose of methadone @ 8PM tonight.  We are hopeful that she will do well without anything further.  Her Keppra (anti-seizure) has been very challenging.  There is something in there that my little girl just does not like.  With a single drop mixed with Cherry syrup she will throw up.  When she is gagging and throwing up her heart rate dips a bit... I guess this is expected behavior but certainly not easy on her parents.  We continue to look for more effective ways to get this down the hatch 2x per day.  Unfortunately this med comes in pill, oral solution, and IV drip.  I was hoping to find suppository on the list.... sigh.

Christina followed up with the cardiology team today and we will continue her heart meds until we meet with an outside cardiologist 2 weeks from when we get home.  EKG and all other items look great heart wise.

Daisy continues to nurse well.... and have great output which are all very good things.

We have been in the hospital now for 26 days which is a lot harder than it sounds.  My wife has been simply amazing in helping me care for our family and provide each kiddo with equal Mommy and Daddy time.  In order to accomplish this Christina and I only see one another a couple of hours each week.  While this is a sacrifice we gladly make it does start to wear on both of us after a while.  This entire week Christina has been at the hospital as I try and shake this cold.  She is an amazingly strong woman and has been managing Daisy's care like no other.  I am a lucky man to be married to woman of this caliber.

Working the details

Daisy continues to do quite well.  We are working to have her completely weened off of the methadone within the next few days.  We will be speaking to cardiology about the true need to continue the heart medications that Daisy is on.  She was put on the meds as a result of the SVT's that she experienced but once the PICC was moved back the SVT's have not happened again.  We would like to eliminate all not essential meds if possible.  We are working to make the seizure medication a little more tolerable taste wise.... as our little princess really does not care for it.  We are also aligning the timing of the meds to give our little girl the most rest possible.  Daisy will be getting another ultrasound on her left leg as it is still a bit firmer than the right.  It has improved considerably but we want to ensure it is just a slow heal.... not a problem that we missed.

Nice day and a cold.

Daisy had a great day today.  No episodes like last night.  The docs think it was aggression due to withdrawal symptoms.  I was relieved to hear this as I was worried we were seeing some type of seizure.  We are actively working with the docs to find the right level of ween on the methadone.

She is maintaining great oxygen saturation levels with no oxygen or breathing support what so ever.

She is no longer taking any diuretic as of today which is great news.  She last weighed in at 10.75lbs.  Momma's milk is beginning to work its magic and put some weight on our little girl.

As if being down with H1N1 flu was not enough Jeremiah is fighting off the last few days of a cold that he has had for the last 5 days.  Christina has spent the last couple of days straight in the hospital with Daisy as I have not been feeling 100% and we simply cannot risk giving anything to Daisy.  Hopefully overnight I will shake off whatever is ailing me and I can go hang out next to my girls crib.

Hi Everyone

:-)

Look Ma... No O2

Last night Daisy came completely off her last little bit of oxygen support.  It has been a long road of respiratory support.  She was not on much but it is nice to see her doing it all herself.

She is continuing to be slowly weened from the methadone.  She had a couple of strange episodes last night that the docs believe to be withdrawal symptoms.  We will continue to watch her very closely on this.

Daisy is at 10.75lbs and seems to be gaining weight daily.  Her momma and I are very proud!

Apparently Daddy did not comb my hair after bath last night

Gimme my baby...bb..baby...bbb..baby breast milk

Daisy continues her upward trend... She is eating nicely and sleeping good periods in between feedings (likely helped by a couple of meds she is taking).  She got rid of her feeding tube a couple of days back but I forgot to mention that (doh!).  She had a great night and has spend a leisurely Sunday morning sleeping in.  She has been eating quite well at 70-120ml per feeding (2.3-4 ounces for those of us in the US and outside of a hospital room).  That is on top of 20 ml of meds.  She is the quietest most patient baby in our NICU 4-plex.  She is still hanging out at or within a couple percent of ambient oxygen levels and this is where we will need to hang out for a little as she gets a little stronger.  We discontinued her H2 blocker this morning (Prilosec that was left over from ventilation days).

I am enjoying playing with her, feeding her, and watching her sleep.  She does not seem to mind my terrible singing and limited selection of memorized books.