Sweet Baby Klara

Looking forward

noreply@blogger.com (Baby K Daddy) — Mon, 07 Mar 2011 01:34:00 +0000

Many of you have followed this blog over the past year. We have not always been great at updating it - in fact we have been pretty bad. This is an important post for you all to read. First, for those who aren't up to date - Klara is doing great. She just had her 3rd surgery to get ear tubes and it was the easiest thing we have been through. She has really come so far. But as most of you know there is no cure or treatment for her muscle disorder. So, I am asking you to take a few minutes to read the following:

I have been a runner for longer than I can remember; it is part of who I am. Now, I run for a different purpose, my beautiful daughter Klara. Klara was born with a rare congenital muscle myopathy – Central Core Disease. She carries it recessively which is even rarer and less is known about it. Her neurologist cannot tell us if she will ever walk or even stand, if she will need support breathing later in life. We do know that Klara has a more severe form of this disease because it presented so strongly at birth. When Klara was born she did not have strong movements, she had a very weak cry, a weak swallow and no gag or any other reflexes. She was taken to the NICU and after a few days she was transferred to the Children’s Hospital of Philadelphia. A hospital that had the specialists she needed. She spent 77 days there and had more procedures then I care to remember, but unfortunately will never forget. When Klara was 5 months old we got a phone call from her neurologist telling us her diagnosis. Instead of celebrating babie’s firsts, Klara’s first year was filled with multiple hospital admissions, doctors appointments, surgeries, physical and speech therapy sessions, and the constant fear of what the next day would bring. Klara recently turned 1 and she has shown so many improvements. She has gone from not being able to hold her head up when she was held, or even breathing on her own to sitting all by herself and playing with her favorite toys. She is beginning to put weight on her legs for a few seconds and is able to reach for toys, but every movement is a challenge, yet she does it over and over again with a smile on her face. Though she is only 14 ½ pounds she has the heart and courage of a lion. On a daily basis she endures painful and scary events like suctioning and retching but she always looks at you when it is over with a smile.

I am joining Team Cure CMD and running The Long Branch half marathon with the hope of raising money and awareness for Klara’s disease, hoping that a treatment or cure will be found. The distance will be easy for me, but the life long battle to raise awareness for this disease is just beginning. Klara needs your help. Click on the link below and consider donating to Cure CMD. $5, $10, $25, everything helps. Every donation will bring us a little bit closer to finding a cure for my daughter and so many other children around the world who were born with muscle disease.

I had an emergency C-section and do not clearly remember seeing Klara right after she was born. However, after my recovery I was taken into the NICU to see my baby. I immediately reached into her incubator and she squeezed my finger. I knew at that moment she was going to have the strength and courage she would need to conquer anything.

Please click on the following link and look for my picture. There are several people raising money for Klara so feel free to support any one of us!
Thank you for you continued thoughts and prayers!!!
Emily

http://curecmd.org/events/njmarathon2011

A look back....A look forward....

noreply@blogger.com (Baby K Daddy) — Mon, 26 Jul 2010 03:18:00 +0000

So it has been a LONG time since we have updated the blog. We have just been living and enjoying life with everyone at home. So a look back....June was great. We really started to adjust to Klara and her equipment. We joined a swim club, Emily got comfortable driving the girls around by herself, and Klara really grew both physically and developmentally. Her Drs were always happy with her progress. She is alert and attentive. She is rolling to her sides, grasping toys, babbling, laughing and she loves her big sister Lily and Lily loves her. Emily resigned from Weisman's after 8 years. We decided with all of the uncertainty, Emily should be at home. Trust me - no tears were shed with that decision. We also received the call from our neurologist with a diagnosis. Klara has a rare, congenital muscular myopathy called Central Core Disease. Her Neurologist decided to test her for this after her admission in May for Rhino Virus. He performed another ultrasound on her muscles during that admission and he found cores. He then went back to her muscle biopsy and was able to confirm the cores there as well. He then ran a blood test to confirm the diagnosis and we got those results at the end of June. We are still learning about this disease. But what we have learned is that there are not many people with it and it seems to effect everyone differently. Klara's results came back showing it was passed genetically - recessively. This means that we are both carriers. We are doing bloodwork to confirm this and we are having Lily tested as well to find out if she is a carrier.
June was a busy month.
July has been busier - but not as good. July brought with it a lot of changes. Klara transitioned from breastmilk to formula, she got a new ND tube and we were working hard to get her food volume up to help her grow - catch up. It caught up with her. The first week of July Klara required more suctioning then normal - normally we don't suction her so any amount was weird. The second week we were suctioning her for hours in the morning - every morning. Definitely not normal. Finally, we found ourselved in the ER July 15 at 5:30AM. We ended up being in the hospital for over a week. It was probably one of the most difficult weeks as we didn't know what was wrong. We just knew that Klara wasn't handling her feeds anymore. She was tested for viruses, infections, we looked at formula, at the tube, reflux (stomach acids) and finally volume. As it turned out we increased her food too much too soon. Klara is picky about things - we should have known. So we found a level she was happy with. However, it wasn't enough for her to continue to grow so we had to increase the calories and hope that she handles that. So far so good. We came home from the hospital yesterday and enjoyed a nice day together as a family. Klara had a few issues in the late morning but we messed with her tube placement a little bit and she seems happy.
A look forward -
During our admission, we discussed our options for Klara. It is believed that Klara will be able to eat by mouth - eventually. Her Drs want to get her through these next 2 winters as easily as possible. So her Neurologist, Pulmonologist and other Docs feel that she would benifit from a Gtube (feeding tube directly in her stomach) and a nissan or toupet (rubber band at top of stomach to prevent reflux). We will meet with the surgeon soon and set up a date for that surgery in August or Sept. Again, neither are permanent and her Drs do not feel she will need it forever as her muscle disorder is not one that will get worse. She is expected to get stronger....to a point.

That is enough to take in on a Monday morning. We will try to do a little better at keeping you updated.
Hope you are enjoying your summer!
The Pedersens

Establishing our new "NORMAL"

noreply@blogger.com (Baby K Daddy) — Tue, 01 Jun 2010 03:22:00 +0000

We are home and slowing reemerging into the real world. Mom and Klara didn't leave the house for the first 10 days after Klara came home. Finally, Emily decided she had enough and took a trip to Target with Lily and Klara - Just the 3 of them. She packed up all of Klara's equipment and loaded the kids into the car and off she went. If you can imagine - Emily pushing Klara's stroller with one hand, holding Lily in the other arm and holding a target basket. All for the price of sanity. It was worth it.
We have been home for a little over 2 weeks and everyone is doing great. Klara is continueing to gain weight -she weighs in at approximately 8 pounds. We find out exactly how much tomorrow. She is finally getting too big for her newborn clothes. She is smiling and cooing, kicking her legs, and rolling to her sides. We are still trying to get her to lift her head up off of the floor when she is on her tummy - but she prefers to scream. She isn't a fan of tummy time.
We had a follow up at CHOP and her docs were very happy with how her lungs sound and how much weight she had gained. She recovered very well from the rhinovirus and pneumonia. We have our next appt mid July and they will evaluate her and plan her next admission for NG trials.
We are still waiting for results from the most recent tests being done by her neurologist. We should hopefully hear something in the next 2 weeks.
Lily loves having her baby sister home. She loves to sing her songs and read her stories. Life is finally becoming normal.

Home Sweet Home....Again!

noreply@blogger.com (Baby K Daddy) — Sun, 16 May 2010 03:39:00 +0000

So, after a 16 day admission, our sweet Klara is finally home...again.
Klara did a great job with the rhinovirus/pneumonia. The docs kept expecting her to get worse but our little fighter proved them wrong. After a week at the NICU, the docs felt that she should transition to ICS (integrated care services - its like inpatient hospital for babies/kids) and trial food in her stomach again. Klara couldn't decide if she liked it or not and eventually decided it was overrated. So the docs pushed her tube back into her duodenum (middle chamber of stomach) and sent her home.

so as of 8:07 PM Klara was ours again. Discharing was a fiasco since we found out today at noon she was discharging tonight.  So we had minimal time to prepare. Remember, Klara comes with parafanalia.  Feeding pump, apnea monitor, and suction machine. So upon arrival to pick her up, we realized we forgot feeding pump stuff, and electrodes for the monitor. so we had my brother bring up the stuff we forgot..once we had it, the monitor wasnt working right....Talk about stress.

Anyhow, a long story short, Klara is sleeping in her bed right now (11:33pm) and IM DRINKING after that STRESSFULL discharge.

Lets hope things go back to the way they were, and if your sick, DO NOT COME OVER.  The Dr.s tell us the virus season is almost over...and there was a big influx of severe Rhinovirus outbreak this year. they saw a lot of babies alot stronger than Klara, do a lot worse...so i guess that was good news.

After this small bump in the road, we have been talking to her neruologist about the primary diagnosis. The last thing he tested for was negative..but we are on another track right now...and the test will take about 4 weeks for part 1 of a 2 part test. So...once again we wait.

The Blog You Don't Want To Write

noreply@blogger.com (Baby K Daddy) — Fri, 30 Apr 2010 01:22:00 +0000

Ok...so that title has got you saying what!!!!???

lets reccap the last 13 days. Klara came home as you know and things were going better than we expected. She has been moving quite a bit more, suctioning her VERY little, and things were starting to normalize. Life was what it should have been (minus the feeding pump, apnea monitor, and suctioning machine {but life's not perfect})

So what changed..well last night (wednesday) klara started showing signs of increased suctioning and a slight cough. All of that increased through the night, so we decided we needed to take her to the Dr. He did not like what he was seeing and hearing, so we were sent to CHOP's ER.

While sitting in the ER, (the timespan of a couple of hours) we actually saw Klara get worse..her numbers were dropping and her color was fading. REALLY...CAN;T SHE GET A BREAK.

They decided they wanted to admit her to the NICU.
So here I sit in CHOP's NICU East Room 72 - only 13 days and 2.5 hours from the time we left CHOP's NICU East ROOM 72. That's right...they actually kicked the other baby out of this room and gave it back to Klara...i guess she's got some pull around here.

What we know so far is she has rhinovirus. (at least they found a cause for this). And from what they tell use things get worse before they get better..how worse..dont know..but for a normal infant (under 3 months) it can get bad...for Klara...who the hell knows.

I will do my best to keep you updated...its easier to find the time when im sitting in a NICU...as opposed to trying to keep Lily from stepping on Klara at home...

talk to you soon.

WAIT TILL YOU READ THIS!!!

noreply@blogger.com (Baby K Daddy) — Mon, 19 Apr 2010 04:04:00 +0000

I know...i know...ITS BEEN FOREVER since the last post. So whats going on.

Well first i want to explain myself...why we havn't posted anything since ____

Frankly b/c we got tired of posting some good news and then having to retract it a day or so later....that seemed to be the case...so the last we left it was.......

Klara was on NG feeds (feeding tube to stomach) and they were attempting to compress her feeds to 30 minutes b/c per our doc...THEY NEVER send a child home on continuous ND feeds....

A day or so after that post, Klara was fighting to keep her food down. Had an increase in reflux and that led to an increase in suctioning. THINGS WERE NOT LOOKING GOOD.

So where were we to go then. The minute they pushed her feeding tube back into her ND (below the stomach) she was doing great. NO refulux, Not much suctioning. But like the docs said...they will not send a child home with an ND tube (very high risk if it were to get pulled out accidentally). So where were we to go now..our hearts once again sunk...

All we wanted to do was get her home to grow and get stronger, since she was clearly showing signs of getting stonger...Moving her hands, feet and moving them purposefully too...to kick toys..etc. So they what they wanted to do was to discharge her from the NICU to inpatient and let her grow...well THAT SUX we said. She will get almost NO attention and we just cant live there...we got a LILY J at home...

As Klara begain to stabalize on continuous ND feeds, they were contemplating on sending her home per our constant badgering....so they began testing us. Emily has been there EVERYDAY and while she is there pretty much handles all Klara's care. So the nurses were like "i dont see why you cant take her home to grow..." Long story short, through advocation, interviews, and training, the Docs agreed to let her come home...REALLY..CAN IT BE TRUE..

So in order to prepare her to come home, fearing the ND tube could get pulled back into the stomach, they decided to push the tube further into the next chamber and make it an NJ tube. This would provide us with a little safety net incase the tube moved.

A wise man once told me, IF IT AIN'T BROKE DONT FIX IT. Once this was done, Klara began to fall apart. She was refluxing stomach bile and they didn't know why so now there was no way we could take her home. ONCE AGAIN OUR HEARTS SANK.

After listening to the problems and putting ALL the pieces of the puzzle together, WE (mom and dad) convinced a nurse to talk to the Dr.'s about the timing of everything. The docs took another film of her stomach and they decided the tube was pushed too low and it was putting too much pressure on her intestines.

The decided to back out the tube 10cm's....and it was still in her jejutem (NJ tube)...NOTHING ON KLARA IS 10 CM...let alone her jejutem (third chamber of her stomach)...

Quickly Klara became very complacent and suctioning dropped considerably...and things were again normal....

So to recap...
Friday...Klara was coming home...pushed tube furthere.
Saturday..klara is not doing good..
Monday...Klara is not coming home
Tuesday..they looked her tube and backed it out Tuesday Night..
Wednesday..Klara is coming home Friday
Thursday...we need to get trained on Klara's equpment
Friday...Klara is discharging mid afternoon..

HOLY ROLLERCOASTER OF EMOTIONS AND ....

So that's it...Klara is HOME...and.....so far doing well. A bit scarey sometimes...but hasnt needed much..she is on a feeding pump, and we do have a suctioning machine (which we are barely using). She sleeps soundly and LILY annoys the bejeezus out of her when she's up...

Lily is such a big sister...loves to help and always wants to do what she can. Couldnt do it w/o her...

Klara has been home for over 48 hours and we have all survived...the Plan, lets get her stronger and then we will be going back to CHOP to once again try NG tube feeds...thats the next step..Until then...we just enjoy having our BEATIFUL daughter HOME. (both of them together)....

The light at the end of the tunnel....we hope.

noreply@blogger.com (Baby K Daddy) — Sat, 03 Apr 2010 03:22:00 +0000

So, a lot has happened since the last post. Lets see if we can recap.

Lily celebrated her 2nd birthday. We had a party for Lily. It was a lot of fun but also heartbreaking not having Klara there with us. Hopefully we won't have too many more holidays or family events without her home with us.

Klara has continued to get stronger and BIGGER. Little KD bug weighs 6lbs 3oz! She is finally gaining weight consistently and filling out her newborn clothes. She has also weaned off of her oxygen. She did transition to an OG tube - so it is back in her stomach and has been for over a week. They started her on continues feeds and they have been slowly condensing it. They were able to condense a 3 hr feed to an 1 1/2. Unfortunately they had to bump it back up to 2 hrs because she spit up a little too much last night. She is still showing signs of refluxing but she isn't desatting or dropping her heart rate. Our little trooper is doing a great job. The docs plan to decrease it again tomorrow.

What we are looking forward to-
If Klara continues to handle her feeds condensing her speech therapist is going to introduce bottle feeding next week. Cross your finger. We have been doing passy dips and Klara loves it.
Also, IF Klara can handle her 3hr feeds over a 30 min time span then we will be able to bring her home. Klara has impressed the docs over the past couple of weeks and they are excited about her continued progress.

The diagnosis continues to be unattainable. All of her tests continue to come back normal. The only thing that has come back abnormal is her muscle biopsy however they have yet to be alb e to find out why that is. Her neurologist has recently ordered a new batch of genetic testing. It could take up to 8 weeks to get these results back. Her neurologists is also sending her files to a specialist at Oxford in England. Who knew our little peanut would cause so many people to scratch their heads!?!

We did find out that she was the topic of a recent presentation at CHOP and even with all of the doctors and specialists....still no answers.

On a good note...her physical therapist is continuing to see progress. Our Klara is getting stronger. She is moving a little more. She can swipe at toys with support at her elbo, she is beginning to coo and occasionally we see a little smile. She is doing amazing. She is amazing and we are finding our strength in her. And Lily.
We are also preparing Lily for her little sister coming home. She was nice enough to pick out bottles the other day at the store and insist on carrying them around with her saying - Klara bottles....maybe someday they will be.

Thank you again for all of your prayers and support. Hope you all have a Happy Easter!

THE PAST, PRESENT, & LOOKING FORWARD

noreply@blogger.com (Baby K Daddy) — Sun, 21 Mar 2010 03:51:00 +0000

So where did we leave off. I actually had to read the last blog post to see where we left everyone....So what has happened in the past 11 days...well where do we begin...

On a non scientific note, nurses who have not had Klara in 2 weeks or so, come in and immediately say "WOW, this is not the same baby i left 2 weeks ago." Klara is showing signs of real improvement. She is starting to move her arms and legs quite a bit more. Even her head....she held her head off of my chest the other day..even though i was leaning trying to make her head fall. the Little champion held her head off of myh chest. That really felt good to see.

so on the scientific note: The EMG did finally happen.   Not as quickly as we thought it would, but it did happen. It was a painful procedure (so we here) but Klara did great. Mom laid next to her throughout the prcedure (the first time mom has been able to lay next to her). So the RESULTS: well, her nerves or carrying the signal (nerve conductivity) as expected. Good one might say..YES,but that brings us back to the muscles.
So back to the muscles....the last we left them we were wating for the results of the muscle biopsy. And we still are. No definitive results ..... yet.

And back to the NON Scientific updates: Lily J has become a regular staple there at the NICU East Pod 72. "Hold Me Klary.." is all we hear. Its so cute..and hysterical. She has made many nurse friends recently, due to her willingness to help and carry supplies from one bed to another....

SO LOOKING AHEAD:   Her speech therapist, has noticed a pattern with Klara's sucking. She is developing a suck, suck swallow pattern and has ordered paci dips (dipping the pacifier in breast milk and giving it to her to see what she does {she loves it})

Feeds: her feeding is still an issue. She currenlty has an OD tube (in short, she cant come home with one) and next week due to her showing an increase of strenght in her peripheral muscles, they have to assume she has increase her muscle strength internally as well (including her stomach muscles). So they will begin experimenting with feeding tube placement on monday and try to get her to an NG tube (a feeding tube she can come home on) . CROSS YOUR FINGERS.

Oxygen: right now she is on 1/4 liter of 100% oxgen. That means, she is on pretty much nothing. Its something she can come home with. In fact the docs dont really understand why she needs it. They dont things its doing much for her.....

So looking at the long cuvey, mountainous, foggy, road ahead; which can go on for miles.....still alot of unknowns, but our Klara is fighting what she has with everything she has. Please CONTINUE to keep her in your thoughts and prayers as she / we appreciate more than you can know.

KEEP LOOKING FORWARD..............

Still Going Strong

noreply@blogger.com (Baby K Daddy) — Wed, 10 Mar 2010 03:43:00 +0000

So this past week Klara has really done a great job. She was extabated last Tuesday and has continued to wean from the flow. Klara has never really needed oxygen, but she needs the air she is breathing to be pushed into her lungs = flow. She is down to 3/4 liter of flow and doing well. The Docs actually gave her a test of being off of the nasal canula for a day and Klara lasted about 10 hrs then she was showing signs of struggling by desating and high respiration rate so the docs put her back on the flow.
Tomorrow they have an EMG study scheduled. Hopefully this will give them some answers. The muscle biopsy has yet to give the docs anything definitive.
So Klara is continueing to get stronger, she is awake for longer periods and is showing some real signs of getting stronger. The docs really want to get her feeding and breathing stable so she can come home. Of course the diagnosis is important but unfortunately that may not happen before we go home.
As always we appreciate all of the support you have given us along the way. Thank you!

Take a deep breath....

noreply@blogger.com (Baby K Daddy) — Wed, 03 Mar 2010 02:45:00 +0000

Cause thats what Klara did today...

Finally some news and something (I want) to blog about...

Today Klara was Extubated and she did good. She started breathing on her own fairly quickly w/ minimal support. They (nurses) were impressed. Since then (its been about 10 hours) she has had a few Desaturations but thats really all. Now, Klara has thrown a few curveballs at us before so, we just need to keep the good vibes going her way so that she continues on this path and that she doesnt get tired again. Not a pessimist, just trying to stay grounded. She still has alot of HUGE obstacles but this is a BIG step for LITTLE k.

Additionally her bones are showing some promising signs, so much so the Ortho Doc removed her Pavlic harnes (we call it the paratrooper suit). So hopefully that rules out Major Bone disorders.

On her primary diagnosis...well they have done a BUNCH of testing but still no definitive results. They have started to remove some things off the table, but right now still nothing is for sure.

They are planning to do an EMG test and a 3rd muscle ultra sound. We are also still waiting for the results of the muscle biopsy.

She is fighting every step of the way..she's a stubborn pedersen (wonder where she gets that from).

Our Little Trooper.

noreply@blogger.com (Baby K Daddy) — Sat, 27 Feb 2010 02:47:00 +0000

Klara's surgery was scheduled for 12:15ish...apparently at CHOP that means 9:00 AM. Unfortunately we weren't at the hospital when she left for surgery, which was very difficult for us, however, it was a quick procedure and when we arrived at 9:45 we only had to wait 10 min until we heard that her surgery was over and she would be back in her room by 10:30. Thankfully, everything went well and Klara did great! She was moving and opening her eyes when they brought her back to the room. They had opted to bump her vent settings up a little bit post surgery to give her a little bit of a break and a couple hours later they were able lower them back down to her original settings. She slept most of the day and true to Klara's fashion, she woke up right as we were planning to leave. We did get to enjoy seeing her awake for a while before we headed home. Her Doc stopped by and told us that the testing on her muscle could take up to a week or so for all of the results to be in...more waiting. However, her nuerologist feels that we will get some answers from what he saw when he took a look her muscle.
The docs will continue to wean her vent settings as long as she can tolerate it. They also plan to reintroduce breast milk this week and begin to wean her off of her IV fluids.
Thankfully this week is over - it has been a stressful one for us. Lets pray that next week is a better one!
Thank you for all of your warm thoughts and prayers.

Just another day....

noreply@blogger.com (Baby K Daddy) — Fri, 26 Feb 2010 03:43:00 +0000

Just a quick update...Klara is still on the vent and she is resting easy and her stats are great. If you recall in the previous post we were hoping she had infection which would explain why she had the event on Tuesday. Unfortunately they have not found any infection, so we have to assume that she was just not able her hold her own respiration. She is doing well on the vent, and they are constantly lowering her level of support...so maybe she was just tired. We can expect her to be on the vent for a couple weeks more...

Because she is on the vent they decided to perform surgery and do a muscle biopsy. This muscle biopsy is cricital in confirming or denying the neurologist's beliefs to her primary diagnosis. Will it be 100% definitive..NO...could it be..possibly..

So we were expecting to have this surgery next week. Today we got notice that it was happening tommorrow afternoon, this evening we were told it would happen in the morning then our nurse called to tell us it was scheduled for noon..WOW.....

Thank god for Cousin Lila...She came up from B'more to hang with Lily tonight so we can head up to the hospital first thing in a.m.

Whats the risk w/ this surgery? the surgery nothing..the anesthesia..well some. There is a risk w/ anesthesia for anyone...for klara...a little bit more...

Ill post tommorrow to let everyone know how it goes..but tommorrow morning...please keep her in your thoughts.

Klara Danielle..................................

noreply@blogger.com (Baby K Daddy) — Wed, 24 Feb 2010 02:56:00 +0000

Blog: (a contraction of the term "web log")[1] is a type of website, usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video. Entries are commonly displayed in reverse-chronological order. "Blog" can also be used as a verb, meaning to maintain or add content to a blog.

I have to once again apologize for not keeping you up to date, but the days just started to seem routine (lets use routine LOOSELY). Klara was having a few "episodes" every day but nothing she didnt bounce back from. Her feeding was hit or miss, so they pushed an ND tube vs. her NG tube and things seemed ok. (i apologize for the clinical terms). I promised to deliver news to everyone (good or bad) and i was waiting for some news. For a while I was under the inpression that it was going to be GOOD news that we were talking with the docs about taking her home assuming we got her O2 and feeding in good order. Then...

Lets just go back to yesterday. At ~4pm 2/22 we had a meeting with all her docs and her neuro specialist. We found out we were still w/o primary diagnosis but they were starting to eliminate some diags. Taking her home was at least 3 weeks away due to her current instability (and we thought this was bad when we left)

So we went home had our usual crazy fun w/ Lily J. Woke up the next day and did our routine. Lily's friends kate and megan came down to play for the day and off we went. Pulled into CHOP's parking garage ~9:45. Got to the NICU entrance at ~10. We were told we cannot go back and we were redirected to a conference room.(can this ever be good????) Our Dr. came in and had some BAD NEWS. We were told

- "Klara had an episode that she could not recover from herself. We had to stimulate her and Bag her. She stopped breathing and now we are concerned about her respiration. We are currently intebating her."

In layman's terms, she is now on mechanical ventilation. They are concerned with her being able to breath for herself. ............ Im sure you just said WHY????

Here are options as to what/why..

- Whatever she has is progressive: meaning if she has a muscular myopathy is now weakening her breathing muscles (diaphram/lungs) so much so she cannot sustain her own breathing. I choose not to mention the prognosis if this was the case

- She has a blood infeciton that she recently caught in the hospital: they have tested her for sepsis. We hope this is what caused the issue w/ her breating. At least with this there is hope she can recover her respiration strength. Does this mean she is cured...NO. It means she can hopefully one day breath on her own. And right now that would be a victory to us.

Where we go now..is up to Klara...She is not giving up so we can't either. I know everyone has been sending her love and prayers, but she needs a little bit more...more now than ever.

I apologize for the grimm news but this is our way to communicate with you. I dont want to end on bad news...so i wont...

Lily once agan terrorized the NICU this past sunday. She got to hold Klara for the first time and LOVED IT. We couldnt get her out of her hands. Additionally we had our first family portrait (minus our dog carmen - the NICU wouldnt let her in).

Please continue the prayers and support..we would be LOST w/o friends and family.

Pics ....

noreply@blogger.com (Baby K Daddy) — Tue, 16 Feb 2010 16:52:00 +0000

Right now not much happening... so here is some of the latest pics ...

Round and round we go....

noreply@blogger.com (Baby K Daddy) — Mon, 15 Feb 2010 19:36:00 +0000

ADMINISTRATIVE NOTE: I apologize, but the email subscription link DID NOT work up until now. So if you want to be emailed any new posts, please go ahead and fill out the link to the left AGAIN if you did so before today (2/15). This will work this time..i promise...And it will prevent you from constantly having to check the blog for updates..it will tell you.

Some news:
BONES: her femurs are beginning to heal...very early signs of healing but that is good. they also did a full skeletal scan and there ARE NO MORE broken bones. However they did see some brittleness so they are now calling in a skeletal specialist to begin his analysis on her bones...that information i got while i was typing this blog...so we just went backwards on the bones' status..

RESPIRATORY: Klara was up and down when it comes to that. B/c of her reflux she is having "episodes" and Breathing fast, dropping her heart rate and Desatting. Very scarey when it happens. We have spoken to the nutritionist and made some recommendations so we are going to try and do a few things to help with this.

REFLUX: See above...but also, she is in pain when it happens. you can see it...so not fun to watch. Hopefully the changes we came up with today will help.

DIAGNOSIS: Still completely up in the air...can be 1 weeks to 2 months away from all the test to come back...

FUN STUFF: Lily came up again this past weekend and terrorized the place. (thats always fun for DAD). Mom and Dad are transferring her in and out of bed at will now. We are starting to feel "comfortable" with all the connecitons and hoses. and of course since her legs are starting to heal she is tolerating moving much better.

2 Steps forward....1 Step Back.

noreply@blogger.com (Baby K Daddy) — Fri, 12 Feb 2010 02:55:00 +0000

Clothes....have you ever thought that wearing clothes would be such a big deal...well Klara has spent the first 2 weeks of her life NAKED...and now, SHE IS ABLE TO WEAR SHIRTS/TOPS...that means they feel she is stable enough for them to move her around as she is tolerating movement well. More so MOM can now dress her and bundle her...

Additionally, she had an MRI of her brain and the results came back positive....

Also, when we arrived today, SHE WAS IN A NORMAL CRIB. Thats right, no more incubator. She is holding her temperature herself.

All this good news, but there are some caveats. She has developed some acid reflux...you can see it when it happens cause ..her respiratory rate increases and heart rate decreases..so it looks like she is in some pain....So They have slowed her feeds down to go in over 1 hour vs. 1/2 hour. so we are hoping that helps.

Some other news, mom changed her diaper today and not 30 seconds after the new one was on, she pooped again. The reason why thats really funny is it takes about 7+ minutes to change her diaper b/c of the leg braces.

Also, Oxygen is down from 35% (3 liter of flow) to about 25% (2.5 liters of flow). We are hoping that stays despite her reflux. She is having an x ray tommorrow on her legs so we should get some follow up on that....CROSS YOUR FINGERS.

Big Sis Lily swung by the NICU again today...She said hi and helped with the daiper change..she narrated while emily changed her...u know....(EEEEEEEWWWWWWW)

Just hagin on till we get some solid news. The Dr.'s have told us to expect a diagnosis in 2+ weeks or at least a direction on her condition. They are doing Genetic and Neurological testing. Getting the blood from her was a bit crazy. They drew it from her umbilical cord and they took SOO MUCH she was borderline needing a blood transfusion. Luckily so far her numbers have gone up so no tranfusion yet, but we are not out of the woods on that just yet.

We are just hoping she continues her respiratory progress and can come home w/o oxygen or respiratory assistance. Please keep the thoughts/prayers coming....

Klara ... Meet Your Big Sister

noreply@blogger.com (Baby K Daddy) — Mon, 08 Feb 2010 03:01:00 +0000

A quick administrative note: i have added a subcription option the left. Enter your email address and get any new posts emailed to you, so you dont have to constantly keep checking back. It will notify you.

Just to recap yesterday (saturday) we were unable to get to the hospital due to the 30 inches of snow we got here. So that was VERY hard for us, but I guess what could have been a better reason...So we constantly called the nurse and annoyed her to get updates on our Klara, and everything seemed to be going ok. She had a big day too; she had more blood taken, went for an MRI, and had Orthopedics brace her legs....so a very long and painful day w/o mom and dad to comfort her...tough for all.

So sunday came and the snow was melted enuf (didnt matter if it was or not, cause we were GOING). We arrived and found our Little Klara with BIG braces on her legs....looks kinda of silly but they definitely minimize her pain when her diaper is changed. They have also begun lowering her O2 blend (From 60% to 30%)...and her stats have been gradually getting better....

But enough statistics....TODAY KLARA MET HER BIG SISTER LILY. It was very cute to see lily point and say BABY KEYERA. And when we told her we were going to change her diaper she let out a Loud EEEWWWWW (and the whole NICU let out a laugh). And in good big sister fashion, Lily felt the need to steal Klara's pacifier...We got a bunch of good FAMILY pics (see below) and spent and good hour or so as a family for the first time. Klara tolerated being held by both mom and dad well, and her stats were PERFECT while being held (she loves it).

Klara also met both Grandmas for the first time today and her Papa John. All in all a good day. I have put a few pics below but check out this link for a full album...(CLICK HERE FOR ALBUM)

And Now We Wait.....

noreply@blogger.com (Baby K Daddy) — Sat, 06 Feb 2010 02:45:00 +0000

Sorry for the lack of posts...but its been nutz...we wake up in the A.M. and kiss our Lily goodbye and head off to CHOP. The hours fly by and before we know it, it's time to go back home to our Lily J. Its bitter sweet both ways...

So lets recap the past day or two....

Klara: she has been poked, prodded, and pricked...very sad, but necessary. She had the worlds best neurologist and geneticist (thank you charlie) at her bedside and they have begun their testing. It will take 2 weeks or so for any definitive results...so now we wait. In general, her O2 Sat has dropped a bit and some apnic events have begun. The Dr.s seem to relate these events to her imiturity so lets hop that is true. They have increased her oxygen flow and saturation just to keep her comfy...they dont want her working hard to have to breathe.

Its scarey NOT to have any answers, and at the same time to be so afraid of the answers...so i think this has to be the worst time...where our minds run rampid hoping for the best, but thinking of the worst.

On other notes, Lily J has been keeping Grandma Bev on her toes around our house. And her friends took her to an indoor play area today (more to give grandma a break..lol) We are hoping to take Lily Monster to see her little sister tommorow (saturday) but the snow may effect that (great luck we have). So maybe Sunday.

Mom and Dad are tired, look terrible but are doing our best to keep it together. The best medicine we have is our Lily when we get home. Again...Bitter Sweet...

Im going to throw this out there again...WE CANNOT BE THANKFUL ENOUGH FOR ALL THE SUPPORT OF FRIENDS, FAMILY AND EVEN NEIGHBORS. We could not go through something like is w/o everyones support and help. So thank you again. People we dont even know (yet) are offering to help...I could never even have imagined this...Even a vendor of mine...SO THANK YOU EVERYONE.

I will always try to post everyday as i know alot of you are relying on this blog..so i will do better...I promise...now we wait, so ill try to post everyday while bedside...

We've Arrived....

noreply@blogger.com (Baby K Daddy) — Wed, 03 Feb 2010 20:14:00 +0000

The last 24 hours have been a whirlwind. We left Klara yesterday around 4:30 pm after a GOOD day of visiting. Held her alot, she was eating great, secrections were at a minimum, and they were planning on removing her IV later that night. Around 10 p.m. we recieved a called from the NICU Dr. (thats never good). Turns out they noticed Klara showing signs of discomfort in her legs, so they took a X-Ray of her Femurs. They have both been broken. This alarmed the Dr. so a full body xray was ordered. NO other bones were found to be broken. But what does this mean....more than likely something to do with her bone structure or development. But NO diagnosis was given.

We arrived to the NICU this morning and have been with her since. Unfortunatley we were not able to hold her b/c of her legs..so that was tough. We then were told that CHOP was full and we have no transport date. (great..what else can go wrong). Then after lunch we recieved a little bit of good news...a bed opened up at CHOP and the team would be here in a half hour.

So here we are (3:12PM).....waiting at CHOP for our BEAUTIFUL, LITTLE, Daughter KLARA DANIELLE.

It was hard to see her being transferred, as no parent should have to endure that. And as i sit here i think that a place like CHOP should NOT HAVE to exist, but i am so thankfull it does. Once she is here and tucked in, I think we can give a little sigh of relief, as she will be in the hands of the BEST in the world.

So, one chapter has just ended, however, the story has just begun...HOPING FOR THE BEST..

Good Days and Bad...

noreply@blogger.com (Baby K Daddy) — Tue, 02 Feb 2010 17:30:00 +0000

Hard to describe whats a good day or a bad day and right now every day is both...

Yesterday: Before discharging mom, we spend the day with Klara. If you remember the previous night we had her out for 4+ hours and she tolerated well, and we even bathed her. I guess that took a lot out of her, cause she was not happy yesterday when we had her out of her isolette. She continually desatted...so we couldnt hold her much. We left the hospital (which was incredibly tough) but was very nice for Mom to come home...Lily went nutz!!!! Was so happy to be home with mom and dad.

Today (Tuesday, February 2, 2010): We called the NICU in the morning to find that Klara did not have that good of a night. Her Desats continued along with a drop in heart rate requiring her to go back on oxygen. They do not fear any issues with her respiratory or cardiac organs, but are relating it to her inability to manage her secretions. As i type this, mom is holding her next to me while she is getting 21 cc's of food (remember, she started at 1 cc 4 days ago). Hopefully by the days end they will be removing her IV b/c she is doing so well with her food.

Update on the transport to CHOP: apparently b/c this is a non emergent transport, this can happen at any time. The CHOP transport team runs 24/7 and we may not even know when they are in route...so we are flying by the seat of our pants until we get her there.

In case emily or I ever forget to say thank you, we want to do it now. We couldnt do this w/o all of the love and support we are receiving from our Friends and Famly.

It's The LITTLE Things

noreply@blogger.com (Baby K Daddy) — Mon, 01 Feb 2010 06:16:00 +0000

Sorry its been a few days since we've been able to update you, however the minutes seems like hours, hours seem like days and the days seem like seconds... Unfortunatey again we dont have much in terms of information, so lets talk about the LITTLE things.

Klara was put on a low level of oxygen just to give her a little support but that was removed 20 hours later as she was doing fine. We got the results back from her head ultrasound, and those findings were normal...

We have had several amazing visits with Klara. Emily was able to put her to her breast and though she cannot swallow therefore cannot eat, she did suck and "play" non nutritively. (We got pictures but I'm keeping them private) It was a great bonding experience for all of us and it was wonderful to see her so so alert and active.

As far as food goes, she has gone from 1 to 2, to.....9 cc's and is tolerating it well. They plan on increasing regularly and slowly backing off the IV fluids.

As far as the near future, we have deiced that Klara will be heading to CHOP (Children's Hospital of PA). She needs specialists and there is where she can get the help she needs, and we can hopefully get some answers. Its looking like Wednesday we will make that move.

So for now, Emily will be coming home monday, and having a FUN evening with Lily. Tuesday we'll spend another day at virtua preparing for the transport on Wednesday.

Ohh yeah, we gave her a bath tonight...SHE PEE'D ALL OVER THE NURSE...some retaliation. (Thats my girl)

As far as Lily, (my little BIG girl) is coping well. She has as been spending alot of time at grandma's and with cousin Lila. She is so mature for an almost 2 year old, and is very cooperative and is ok being on the move. She had a fun day in the hospital room with mom today and they enjoyed an afternoon nap together.

ONE LAST NOTE, IF YOU HAVE KIDS GO HUG THEM...DOESNT MATTER WHAT TIME IT IS WHEN YOU READ THIS....

Just Some Pics

noreply@blogger.com (Baby K Daddy) — Fri, 29 Jan 2010 17:25:00 +0000

Things are things today....Baby K is now 36 hours old as of this post. She had an ultrasound of her head so hopefully some new soon. Right now our information is all theories...so i apologize for the lack of details in her condition, but when we know something for REAL, i will pass it on.

We spent about 1.5 hours with her this morning. had a good visit. She tolerated it well. Even stuck out her tongue at us a few times. Hopefully well get some news soon and pass it on...for now, just some BEAUTIFUL pics.

ALSO, MOM IS DOING WELL...SHES UP AND WALKING AROUND...

Baby K Peds - K is for Klara

noreply@blogger.com (Baby K Daddy) — Thu, 28 Jan 2010 16:33:00 +0000

First off i apologize for the radio silence, however Emily and I have not been up much for talking.

Lets recap yesterday (36 weeks):

3PM - went into the hospital cause we "THOUGHT" she broke her water.

4:30PM - turns out she didn't so we were being dischared

during the discharge process, Emily's water broke...(better in the hospital than my car)

so it was on....at around 12:30 am, Baby K wasnt doing well so mom and baby were rushed into emergency C Section.

1:05 AM - And out she came....all 3lbs 14 oz of her. (yes thats right, we were expecting a 6 pounder)

So where does that leave us and her...

Baby K (Klara Danielle)

breathing on her own and vitals look good.

concerns....Yes, plenty...which i am not choosing to list here as it VERY early. so lets just say she will be resident of the Virtua Voorhees NICU for the next several weeks.

Mom & Dad

a mess = yes..but dealing as best we can.

Mom - doing well, recovering from what would be called a routine C Section.

I apologize for not wanting to talk to anyone but we will soon.

What Baby K needs

PRAYERS.....and lots of 'em.

Check back or subscribe to the blog...i will post as often as i can. All that aside...she is so damn cute....