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.