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.

Get that tube outta my nose

Daisy continues to work to maintain her oxygen saturation levels while asleep at ambient oxygen levels.  She seems to do just fine when awake.... But when she is snoozing she will drop just below the 88% threshold....making her warning alarms ding periodically.  Her anti-seizure and methadone (sedation step down) make her awfully sleepy.  When she is awake she is just a happy little girl.  She is quickly becoming a favorite in the NICU.  She is one of the largest kids in the NICU at 10 lbs 8.6 ounces.

I had some fun giving her a bath this evening... The little pink tubs they have here are tight for our 10 pounder but with our nurses help we made it work.

Daisy loves to grab her monitoring wires and her oxygen tube... She must not like it in her nose as she has pulled it out a half dozen times.

Our little fighter

A nice calm day today for Daisy... she continues to work hard at getting off the limited oxygen support she is on and weening down on the meds that she will need to ween off of.  She got another EKG for the cardiac team tonight... they are trying to be darn sure that it was the PICC that was causing the SVT issues I talked about earlier.  Since the PICC was pulled back 1cm we have not had the problem recur.  The PICC has since been removed.

She really has made remarkable progress since this all began.  After the cardiac and respiratory arrest Daisy was unable to maintain a large portion of her vital functions on her own.  She needed machines, or meds to just maintain life.  She has received fresh platelets several times, a blood transfusion, several dozen meds to make her body and systems work properly and heal.  She also received meds to medically paralyze her and strong narcotics to sedate her.  One of our Pediatrician's at the hospital and I were tracing back over the last three weeks today.  She is quite pleased and surprised at the rate of her progress.  We will have years before we know the full impact of this nightmare Christina and I could not be more proud of how hard she is fighting and seemingly winning :-)

Noisy night.... Peaceful Daisy

Daisy was released from isolation yesterday as her flu test came back negative.  This means Christina and I can finally touch Daisy skin to skin.  I know it seems like a small thing.... But when you have not had any skin to skin contact with your child for 18 days it is like nothing else.....magical.  It also means that we will no longer have to wear masks, gowns, and gloves.  She slept very well despite a noisy room last night.

She is continuing to be stepped down from her sedative using methadone... She is tolerating the slow weening of methadone well.  She remains on 2 heart meds as a precaution.  She is also still on a diuretic and her seizure prevention meds.

Her oxygen support has been turned down to 21% which is the same oxygen concentration as the air around us.  She remain at a 1/2 liter of flow support.

The doc seems quite pleased with her progress.

Dare I say we are getting a little normal back

Christina finally got to nurse our sweet Daisy early this morning.  Momma and baby thoroughly enjoyed this.  We are both very glad to be able to once again have skin to skin contact with our baby.  Daisy enjoyed a nice sponge bath this morning.

Nice day in the NICU

We have had a nice uneventful day here in the NICU.  Daisy is just rock solid on her stats.  She is no longer on high flow oxygen just normal oxygen at 1/2 liter, 75% oxygen (down from 100%).  SVTs have not returned since they pulled the PICC line back 1cm.  We believe that the PICC line was tickling the heart.  We just moved from our fancy PICU bed to a NICU crib.  Daisy is being cared for by the Pediatric docs and no longer the NICU docs.  This is good news.  It seems we are going to stay located in the NICU at this point...this is also a good thing.  The NICU is much more calm with very limited traffic...the pediatric floor is a lot busier.

Daisy really seems back to her normal self today.  She is eating like a champ at 90ml on demand.  It feels great to do every feed while I hold her.  She is also producing regular super dirty and super wet diapers.

MRI results and our big move

Earlier today we received Daisy's MRI results.  The results are not perfect but are very good considering she was down 30 minutes before she was brought back in the ER.  We are seeing 5-6 small areas of "abnormality" at various places within her brain.  The areas of abnormality look similar to brain tissue damaged in a stroke.  We are also looking closer at one particular item on the MRI which was called a clot by one radiologist and not a clot by a second radiologist.  They did an ultrasound today to look further at this.  So what does this all mean...well no one knows.  There is a chance that as she develops the damaged areas will simply remap their functions to other areas of the brain.  There is also a chance that she could have some developmental issues as she grows.  We will simply need to set our developmental goals and track her to them.  It is a wait and see situation.  Right now she does not seem to have any deficiencies... She is our same Daisy grunts and all :-).  I talked with our PICU nurses and they mentioned that this was one of the cleanest MRI's they had seen in a patient who was down as long as she had been.  These ladies unfortunately see this stuff all the time.

This evening we were also moved from the PICU to the NICU.  This means we have improved enough to decrease our level of care just a little.  Miss Daisy and I packed our bags and have now settled into the cozy NICU.

She was increased on feeds from 20 ml to 60ml then to 90ml and she is gulping down the breast milk as quickly as she can.  Atta girl.

More progress

All of Daisy's IV drips have been turned off just before noon today.  We will see how she does off sedation.  Her feeds which were started again last night as breast milk bottle fed have been going very well.  They are increasing her feeds from 20ML to 60 ML per hour.  Daisy was not terribly happy with the bottle at first.... but has grown happier over night.  We have not seen an episode of SVT in 36+ hours.  I am hoping this trend continues and it was simply the PICC line tickling the heart and causing the SVT.

Bye Bye Ventilator :-)

Our little girl was taken off the ventilator this afternoon.    We are quite proud of the progress our little girl has made in the breathing department.  She is just doing great puffing her own air.  She has been stable and active since the tube was removed.  So stable in fact that she was able to hang out in Daddy's airs for an hour this evening.  This is the first time I have been able to hold her in 15 days.  The feeling is incredible and like nothing else.  In preparation for extubation her breast milk feeds were stopped before we went into the MRI and her nutrients were once again delivered via IV.  She will be cleared for feeds again once she gets some hours under her belt off the ventilator and they can be sure she will not need to intubated again.  Items in her stomach could be spit up during the tube removal or insert and go into her lungs.  Her Momma is anxiously awaiting the word from the doc about feedings at rounds tonight.  The PICC line that had been established a few days back was back off 1cm today.  It may have been tickling the heart and causing our SVT's..... or it could have nothing to do with it.  Daisy has not had an episode since the wee hours this morning.  We are hoping this trend continues.  We are hoping to hear MRI results at some point tomorrow.

Miss Daisy is now out of the MRI

She did well in the MRI.  They did have to use additional sedative and give a paralytic to prevent movement (a bad thing for a MRI).  She was not very happy when the paralytic wore off and got her blood pressure a little high.  They have given a little extra sedation and she seems to be settling now.... With her blood pressure going down.  We have had quite a busy morning....

Miss Daisy is in the MRI

Our little miss Daisy has just been taken into the MRI.  You would not believe what they packed for the trip down to the MRI.  A mini pharmacy... Ventilator a mini version of our in room monitor.  The only problem is they cannot pack Dad.  I have to stay out of the MRI room...  The last 1.5 hours have been spent preparing to move her.  She should be out in an hour or so.

Daisy passed her ERT!!

Our little girl has passed her ERT (Extubation Readiness Test).  This means she should be ready to breathe for herself.  This also means that we may get our MRI today.
She did have two SVT episodes last night.  Otherwise we had a decent night.

The path to recovery is a rough one

Our poor Daisy had 2 high heart rate episodes today.  The episodes are caused by a condition called SVT (Supraventricular tachycardia).  They believe she will grow out of it.... but boy is it scary.  They also believe that it is likely inherited.  Daisy's care team was not able to lower her heart rate with the ice this morning (dive reaction) it took a couple shots of meds to get it back into acceptable levels.  You can read more about SVT here if you are interested http://en.wikipedia.org/wiki/Supraventricular_tachycardia

Her care team is also having a heck of a time getting an IV in today.  Since we lost the arterial line we have lost the ability to get blood for lab work without poking the poor girl every time.  They tried the head, left hand, and neck today without success.  Little babies have tiny little veins and arteries and it makes them a very hard stick.  We pray that they are able to find a suitable place for an IV soon.  Our poor sweetheart was so upset and it kills us to watch her in pain.

At rounds this morning the docs are happy with Daisy's overall progress and believe we are heading in the right direction.  They are going to work to get even more fluid off of her as they believe this is one of the main contributors to her failing her ERT (extubation readiness test).  Once she is cleared to get off the ventilator we can get the MRI of her brain done (she still needs to be on the ventilator during the MRI).

Your continued thoughts and prayers are truly appreciated, thank you.

Resting again

After a pretty crazy morning our sweet Daisy Jean has been resting quite peacefully this afternoon.  The meds to prevent a fast heart rate seem to be working nicely.  She has not passed her  ERT (Extubation readiness test) in the weee hours of the morning but we are willing to give her all the time she needs.  I am a little bummed as I was going to get the chance to hold her this morning before the craziness broke loose.  I am looking forward to holding her soon.

Quiet night followed by a scary morning

We had a nice relaxed quiet evening followed by a scary morning.  Daisy was just as relaxed as could be all night long.  It was great to see her resting peacefully.  This morning out of the blue her heart rate jumped to 223.... Then back down.... A small time later it jumped from 170 to 275.  Finally we had one more 15 second episode of greater than 220 heart rate.  The doc put her on a drug to control high heart rate.  The time when she was at 275 was for a bit of time and the doc got her to reset by putting ice on her forehead.  When she did that her heart rate dropped 90-95 in 20 seconds.  Apparently the ice causes the child to bear down and kind of resets their heart rate a little.  The heart was not on my worry list and now it is.  It may very well be that this is related to the flu which still seems to be hanging around.

Night night everybody

Thank you everyone!!

Christina and I have received so much support, thoughts, prayers, and some of the nicest comments from our family, friends, and co-workers.  We sincerely thank each and everyone.  You have sent a flood of goodness to Daisy which is exactly what's she needs right now.  I want to say more than thank you but I cannot find the words.

We have a PICC line

Daisy got a PICC line in today to replace her central line which was degrading.  The PICC procedure took over 2 hours  The central line was removed just this evening.  She seems nice and peaceful tonight for which I am thankful.  She had a blood transfusion today as she was a little dry from the extensive labs which are drawn everyday.  She seemed to like the extra blood as the heart rate and respiratory rate are back into more comfortable levels.  She has not passed her extubation readiness test yet but we are on settings that force her to exercise her lungs more/force her to take more breaths.  Daisy ventilator tube had to be repositioned today which also took sometime.  The good news is that we should be in a better position to not induce as much coughing

Daisy is almost back down to her intake/dry weight... She looks a lot more like my little girl again.  Woohhoo.

Stay the course

Daisy's central line continues to give her some problems.  They are going to establish a PICC tomorrow morning to replace the central line as the primary med delivery IV.  Central lines are apparently good for about 2 weeks.  We are at 11-12 days.  They have discontinued the use of the central line for all but the minimal to keep it open.  Her ventilator settings continue to be very stable on very low settings, this is great news.  I met with both the PICU doc and Neurology docs today regarding a MRI, both docs were helpful in providing the information I required in order to have meaningful conversations with my beautiful wife.  The MRI will help us see any smaller brain bleeds not seen in the ultrasound, see any areas that could potentially cause seizures, and will allow us to identify any damage to the brain.  The location of the damage (if any) will give us a quicker path to therapy.  Her neurology serial exams (in person) look pretty positive so far.

Right now we continue to work to get all the water weight off little Daisy (she has made some major strides here).  We are working to rid her of any lingering flu and any new infections.  We are working to get her off the ventilator as soon as her body is ready to do all her own breathing.

Christina and I are enjoying gazing into her eyes during periods of alertness, it almost seems as though she is trying to speak to use through her eyes and facial expressions.

Isolation

Daisy is currently in isolation due to the h1n1 virus.  This means that Christina and I (as well as any of the Dr's, techs, nurses, etc) have to have a gown, gloves and face mask on while in the room.  A couple of folks had asked :-)

Rough night for a tough little girl

Our tough little girl was quite restless and a uncomfortable last night.  Her heart rate has been high right along with her breathing rate.  Her left leg has been a little swollen and they worked last night to determine if it was some clotting around the central line.  We are also see evidence of some potential infection which they are treating with a broad range anti biotic.  We had ultrasounds done on both the central line and the arterial line.    Her first test to see if she is ready to be off the ventilator failed.  We will keep working towards getting her to breathing on her own.
We are having conversations with the PICU docs and Neurology docs about next steps for assessing her brain.

Some days are less eventful than others

Daisy has continued to be more active and more awake today.  She has been weened down on her sedative.  Unfortunately with this we get to see when she is more uncomfortable.  We have also see some rises I her heart rate and respiratory rate which is giving us a little anxiety.  We are seeing a little more swelling in the left leg.... This is the side with the central line.  An ultrasound has been ordered to ensure no clotting issues.  Her temp continues to ride just under fever so it seems like that flu is still trying to hold on a bit.  Her Momma and I are happy to see her beautiful blue eyes.  Her feeds were just increased to 20ml/hr which is hitting our goal. 

Christina gets to hold Daisy

Today saw Daisy peeing off that water weight like a rockstar.  Her ventilator settings were also moved in a positive direction 2 times today and she tolerated it well. I can see her initiating breaths on the ventilator monitor.... more good small steps.  The most exciting news came when our nurse let Christina hold Daisy for a couple of minutes.  This is no small feat and required about 10 min of tube, line, wire, IV, adjustments just to land Daisy on Christina's lap safely.

This is the first time either of us has been able to hold her in over a week.

Hi Everybody!!!!

I am feeling much more awake today.

A pic of where we have been med wise

This bucket has been emptied a time or two since we have been here.  Lots of meds.  The bucket is about 2ft tall.

Cute little movements

The paralytic meds seem to have worn off and our Daisy is giving us some movements.  Goals for today are to continue to loose the water weight.  Start weening towards being off the ventilator.  This will likely not happen for days.  They just increased her breastmilk input to 10ml/hr.  We are watching the breathing tube to see if the air leakage becomes a problem (the tube that she has does not have the balloon mechanism that prevents air leakage).  We started a conversation about the MRI risk/benefit....and there will be more conversations to come.

We have output!

More poop talk.  Daisy Jean just provided us with her first poop in quite sometime.  Great note to go to bed on.  :-)

Pretty blue eyes

Daisy is doing well on the standard ventilator.  The wackiness in her blood pressure earlier in the day seems to have calmed down this evening.  We are working to drop more water weight and ultimately our next goal is to get off the ventilator altogether.  This could be days or weeks.  Little Daisy got a sponge bath tonight.  I think she appreciated it as she moved around a little (she is off the paralytic meds) and opened her pretty blue eyes a couple of times.  I am going to ensure I snore loud tonight so she knows I am here :-)

I forgot to mention we are also looking for a poop now that someone is getting 5ml/hr of mommas milk.  I know....not the nicest thing to talk about...but the parents out there will get it.

....2 large fries.... 1 large Dr Pepper and a standard ventilator please.

Christina calls me this morning... Daisy has shed some of the water overnight (docs are happy... that means I am happy).... and they are going to try a change to the standard ventilator @ 10:30AM.  The standard ventilator is not as heavy duty and has a natural breathing motion.  Getting to move to this ventilator would be good news.  It opens many other doors for us that we are anxious to open.  We are not able to get an MRI to see what if any damage was done to my baby girls brain during the period of low oxygen.  It will also allow them to relax the paralytic meds and allow her to move around some... this would be just awesome.  Christina and I are both feeling anxious about the change... but we hope she tolerates it.

Waaaaahooo..... we have made the switch.... and Daisy seems be doing just fine on the standard ventilator.  We have high hopes that this will continue.  We have remained off the meds for blood pressure, etc.  These are more baby steps in the right direction and we are so very thankful.  Daisy continues to take in that magic which is momma's milk.  I am so very proud of her right now.

Sunday.... a little Momma's Milk

We began to see a tiny bit of the water weigh fall off.... they are looking to increase the frequency of the diuretic t increase output.  We will not be able to try a ventilator switch as there is too much water weight and the doc believes it is put too much pressure on her in addition to the extra work she'll need to do on the smaller standard ventilator.  Good news comes that we can begin feeding her a tiny (1ml/hour) bit of breastmilk.  Christina has done a fantastic job of pumping and keeping up her supply over the last week.  We have a good amount of milk stored and they begin moving the milk into her stomach via her feeding tube.  She has not had anything but acid controllers in her stomach for a week.  She seems to be doing great with the milk.... I am overjoyed.  Now we need to to continue to shed this water.  This time it is Pee Daisy Pee..... :-)

Saturday, We are turning the first of many corners

We are 6 days in and Daisy seems to want to kick some booty today.  She spent the day weening down on all of her meds... in fact when I made it to the hospital in the evening she was off everything except for the sedative and the paralytic (continuous meds).  The still need to give her periodic electrolytes, and various nutrients as bloodwork calls for them.  She is maintaining her own blood pressure..... and maintaining everything that is not breathing on her own.  She has gained a ton.... a ton of water weight.... and that is what we are working on now.  They are starting her on a diuretic to get the water weight off..... the problem is that this can also make your blood pressure dip.... so their is a fine line to be walked.  Maybe we can move to the smaller ventilator tomorrow.... wow that would sure top off a great weekend.

Go Daisy Go!!!

Wednesday, Thursday, Friday

Daisy remained largely the same Wednesday, Thursday, an Friday.  We would have periods where we could come down on meds only to go back up a couple hours or even a day later.  We would be able to come down on ventilator pressures.... only to go back up... at times higher than we were when we were able to get down.  We celebrated the small steps forward even if they were followed by small steps backward.  Each morning when Christina and I attend rounds there is talk of moving her from the heavier duty oscillator ventilator to the standard ventilator.  Unfortunately there always seems to be something in the way.... blood pressure, too much fluid retention, etc.  By Friday Daisy has put on greater than 6lbs of water/fluid due to the meds, the oscillator, and the fact that she has been medically paralyzed (moving around help you get rid of excess water on the body).  The poor girl resembles a sumo wrestler at this point.  She is super puffy and we loves every inch of her puffiness.  Her mother and I could not be more proud of the small steps forward she has taken.  Overall she has been able to ween down on some meds at this point.

Jeremiah was released from the hospital late Wednesday evening.  I would happy to have him home where he can get some uninterrupted sleep.  All of the noise and goings-on in the hospital is much different than our quiet home and he has been sleeping very poorly.  Tamiflu, albuterol, and inhaled steroids are the orders.

Tuesday, admit one more to UCD Childrens Hospital

Boy... did sleeping on the hospital couch feel great.  Late Monday night was the first time I had slept since I got up to rock Daisy in our recliner between 4-5AM Sunday morning.  I was happy to be near my baby girl and I was happy to snooze a little.  When I left our house the night before.... Jeremiah Jr's temp had ticked up a couple of tenths.... Christina was going to take him to the pediatrician first thing in the morning.  She took him.... they prescribed tamiflu (as UCD Children now knew it was the flu) and some good things (albuteral, and a steroid) for the nebulizer.  Christina continued onto urgent care to get some meds for herself... as she was feeling very poorly and our doc was out of the office.  While waiting at urgent care Jeremiah's temp shot up very quickly.  Christina left urgent care and back to the pediatricians office.  The pediatrician was quite concerned with his rapid progression and sent my wife and son to the emergency room with one of her staff holding a bottle of oxygen for that was being given to Jeremiah in our van.  Jeremiah was now admitted to Mercy Folsom.  Shortly thereafter, Christina was admitted to Mercy Folsom.  For those who are counting 3 of 4 of my immediate family was now very sick in the hospital.  The good news is that my wife was finally going to get the meds she needed as would my son.  A couple of hours later my wife was discharged with prescriptions.... and my son was being transferred to yes... you guessed it UCD Children hospital.  Christina and Jeremiah arrived @ UCD about 10:30PM via ambulance.  I now had a kiddo on the 10th floor & 7th floor @ UCD.

Daisy spent the day taking one step forward followed by one step back.  Adjustments to ventilator pressures were sometimes tolerated and sometimes not.....  re-positioning of her body at different angles would cause oxygen saturation levels to drop below our 92% goal.  Adjustments to blood pressure meds had to be made regularly.  She was showing us she was willing to fight.... it just seems like we could not get her part to all sing the same song.  Mom or Dad are by her side 24/7.  We cannot over stimulate her as it is not good... but we talk, sing, humm, touch periodically so she knows that we are there for her constantly.

Monday

It was about 6AM Monday when our little girl seemed to take a small step away from the edge.  She seemed stable enough and in really good hands.  Christina and I both wanted one of us to be home before our son Jeremiah woke up.  I left for home and arrived just in time for my son to wake.  The first thing out of his mouth destroyed me...... he said he did not hear his sissy cry.  He then set out to find her... looking in her bassinet... her crib, her room.  I explained to him that sissy was very sick and in the hospital.  I was overjoyed and sad at the same time.  My son had grown to love his sister dearly in just 1 short month...... and he gained reassurance that sissy was there from her cries in the night.

Christina spent the first day with Daisy in the hospital.  My hope was that Christina would be able to be very close to our Daisy and possibly get a little rest during the day (something not possible with a 2.5 year old at home).  She needed rest badly as she was very sick both with the flu and with sadness.  I think we were all settling into our new reality, Daisy was going to be in the hospital for a good stretch.  We had a very long, rough road ahead of us.  Daisy was sedated and paralyzed with drugs so that she would not try and fight the very odd mechanics of the oscillator type ventilator which was doing the breathing for her.  He "med pole", a 6 f.5 ft tall pole that held all the IV meds and pumps was absolutely full of pumps and fluids front and back.... she had meds to maintain blood pressure, meds to opens veins and arteries, meds to stop an seizures from occurring, meds waiting at the ready to shock her heart back should she start to crash again, meds to sedate her, meds to paralyze her.... and several more which I did not have time to learn what they did.  Her lung x-ray looked terrible.... almost all of both lungs was "closed" due to the virus.  The end of the day brought our first bit of good news.  They did an ultrasound of her brain, kidneys, liver, gal bladder, stomach, and bowels.  When you go into a respiratory and cardiac arrest the time spent trying to revive you is a low oxygen condition for your body.  The body begins to divert oxygen from less important stuff (stomach, etc) to more important stuff (brain, heart, etc).  The ultrasound showed that the liver and kidneys looked ok considering what Daisy just went through.  The gal bladder has some sludge that she should be able to work through... the stomach and the bowels had some dead layers due to the low oxygen condition.  The layers should sluff off and be passed by the body.  The bad part is that her stomach was terribly swollen.  The best news of all is that the brain had no major bleeds detectable by ultrasound.  Daisy was not longer receiving her momma's milk rather the necessary nutrients to sustain her are put directly into her blood stream.  Her stomach needs to heal before feeding via feeding tube can begin.  At this point our baby girl is not breathing for herself, unable to maintain her own blood pressure, is being regulated temp wise to manage the terrible flu that got her here and needs an awful lot of meds to keep her moving.  She is alive and we are thankful for that.

Daddy's first night in the hospital with Daisy is Monday night and he is looking forward to seeing his baby girl again.

How did all this happen?

In my previous post I described the first 12 hours of our ordeal.  How the heck does this happen..what caused it?  Well the short answer is Daisy suffered from Sepsis resulting from influenza type A sub type H1N1.  Yes what the media calls swine flu.  Basically when little ones as small as her get sick they fall septic very easily and quickly.  When they are this little it is very easy for them to quit breathing when sick... And that is what happened.

A fever that turns into the worst nightmare

It has been nearly a week now and as I start to think back to last Sunday, in order to write this post, I am overcome with similar feelings of fear and sadness that I felt on that night. 

Christina and I had caught heck of a cold (or so we thought) right around Christmas.  The kids were fine but we knew despite our best efforts we knew there was a high likelihood they may also fall ill especially our sweet Daisy being so young.  We checked temps, felt foreheads, looked for any sign of the kiddos feeling poorly.  Nothing until Sunday... Daisy's temp had ticked up a little.  We immediately called our pediatricians on call cell phone.  We had a couple of conversations about how she was acting, temp, etc with the pediatrician.  We were reminded that if she reached fever stage, 100.4, we were to administer Tylenol and take her to the ER.  Just before dinner Daisy had a temp of 100.2.  That was close enough for us.  Christina hopped in the Van with Daisy and headed for Mercy Folsom.  I stayed behind to finish dinner with Jr, get him bathed, and to bed.  I redirected my inbound mother in law to the hospital to be with the girls.  Dinner done...bath done...Jr in bed.  I began making a sandwich for my poor wife who missed dinner, was terribly ill, and gets up to feed our now one month old every 2 hours.  Sandwich made, chips and grapes packed.  I make the switch with my MIL she was now watching Jr sleep.  I am heading to the hospital to be with my girls.  Half way there I get a call from my wife.  Our daughter has stopped breathing................................................................................our sweet as honey baby girl had stopped breathing.  She went in with a fever and was now fighting for her life.  I stomped on the gas and got to the hospital and sat helplessly beside my wife watching about 20 people try and save my babies life.  Watching your child, lifeless on a bed, having CPR performed on them and you cannot do a damn thing to help is the worst thing I have ever experienced.  It is 10x worst than I imagined the worst could be.  CPR had gone on long enough that I began to loose hope that she was going to make it.  I felt dead inside....  After approx 30 min of CPR... she regained a pulse.

My little girl is alive.... They are breathing for her with a ventilator bag... Her stats seem to be all over the place but her heart is beating.  I begin to wonder what is next.... Respiratory and cardiac arrest is super serious when it happens to anyone...  Even more so when the little one is only 1 month old.

We are now at the point where we need far more tools and capability than Mercy Folsom has to offer so they contacted UC Davis Children's hospital and asked for their critical care team to be sent.  UCD has specialized teams that come to you to transfer critical condition patients to their hospital.  These folks are simply amazing.... They are just loaded with gear to ensure my little girl gets from Folsom to UCD Children's with no issues.  It takes them a little over an hour to get her stable enough to transport... Not great just stable enough.  They then take off for UCD children's.  Christina is in the transport with them.  I am following behind.

We get to the hospital a huge team of nurses, respiratory therapists, Doctors, and surgeons descend upon my little girl.  Her blood sugar is crazy high.... Oxygen saturation is low....heartbeat and blood pressure are all over the place.  The team is working to stabilize Daisy.  The docs are looking to establish a central line in a vein from her groin... To near her heart.  The central line enables them to deliver a ton of meds very quickly.  They also establish a second arterial line to obtain real time arterial blood pressure.... And enable them to obtain blood quickly for labs.

The doc attempts the first line on the right side but is unable to get it in.  As they are moving the sterile tables around to try on the left side Daisy's stats plummet.... Heart rate goes from 135 to under 40 in just a few seconds....blood pressure is almost not there.... I think at this point we may loose our little girl again.  It feels like 10 years but I am sure it is only 20 seconds.  The care team pulls out this large syringe full of some magic fluid and her levels recover almost as quickly as they fell.  I don't know if Christina and I can take another episode like this....  We are only 6 feet away but we cannot help her.  I have never had a night where I have felt so helpless and ineffective to my family.

Massive instability seemingly over.... The doc tries to get the central line into the left side and is successful.  Now meds can go a lot quicker... As her small arm based IVs were just not allowing meds to flow quick enough.  The standard ventilator does not seem to be enough for my lite girl.... So they bring in an oscillator to do her breathing.  Is it a crazy way to breath.... It puffs the lungs full of air... The oscillates 480 times per minute.  This thing is able to finally bring her oxygen saturation above 92%.  Finally we are seeing better stability.  My girl is in super critical condition.... But I feel as though we are no longer on the edge of the cliff and about to fall off.