Baby J. - Days 15-17

I'm sure everyone is just sitting on the edge of their seats waiting for an update.  Ok maybe not.  There really hasn't been much to report.  I have been in Topeka since Sunday (well except a quick jaunt back to home today for a doctors appointment) and have held her everyday.   

Last night I got to see the most of her that I've seen while they took off her BCPAP to clean her face.

I kind of think with the nose thing she looks like she belongs in Dr. Seuss's Whoville.  :-)

Updates- Last night she weighed 2 lb 2.2 oz so she was back up again.
    - Brain scan on Monday showed no improvement and no worse- still has fluid on brain but it hasn't gotten worse
- Got another transfusion today.  Her numbers were ok, but since they want to take out a pic line they thought they should go ahead.   Give her an extra boost.
-They stopped her lipids (fats) the other day and have continued to increase her food.  She was up to 22calories  (something is added to the milk) and 14ml of food every three hours.  She is No food by mouth though till tomorrow cause of transfusion.
-I believe they are taking her off her iv fluids tomorrow as well- again held off due to transfusion.
-Her X-rays are looking good with her lungs and I'm not sure if I already reported her PDA (in her heart) is starting to close.
- Baby J is starting to be awake more- especially around meal time.   She gets a little fussy cause I think she's hungry, but I definitely am seeing open eyes much more.   She likes to suck on the tiniest pacifier in the world.
-Today is the last doses of her steroids so I'm a little worried about going backwards but hopefully we won't see that in the next couple of days.  

So the major health struggles currently are:
-Needs to continue to get stronger lungs
-Needs to put on weight
-Brain fluid needs to dissipate on it's own. (PLEASE)

Other major hurdle is getting her a real social security number and on SSI so she qualifies for medicaid as she can't go on my insurance yet and I definitely can't afford the hospital stay.  There seems to be lots of confusion from everyone and it's all messed up.  Hopefully that gets worked out quickly.

All snuggled in

In house selling news- I met with a maid service today and a carpet installer for estimates.   Hopefully those things will help sell the house.  

Getting her feeding tube re-taped.

I can't thank you enough for all your prayers and support.  It means a lot.

I know it's blurry.  It's my back camera from my phone.  I'm holding her here.

Baby J - Day 14- First sounds

 3 weeks 

2 lb 1 oz

I'm so happy to report I am back in Topeka for the majority of the rest of the summer and I'm very glad.   Baby J is on a Bubble CPAP machine which makes her face look a little odd but it's smaller and quieter and one less tube down her throat.

Here is her new machine.

The pink thing is her doll

She is also up to 11ml of food every 3 hrs and digesting it all.  I asked today when she gets to start bottles and they said not till after she was off her CPAP and they will not take her off of that until she is 1250grams.   However she does suck on things.  She has a pacifier- today she was on a little bit of a bigger one, but here is her first one

That's my pinky.

The EKG shows that her PDA has started to close on it's own.  YEA!!!   So now her two main problems are needing to gain weight and get stronger and her brain.   PLEASE pray that her brain heals itself.  It's actually been my biggest worry - she had fluid buildup but no extra bleeding when they checked it earlier in the week- so the fluid buildup needs to be soaked up in the proper places.   I know her weight will come.   She's been through a lot and now can start working on that.  

While sitting and reading today I suddenly heard a little noise from her isolate and thought I was hearing things.  It didn't click that the tube was out so she could make noise.   The nurse assured me that I would probably hear her loud and strong cry before I left (I did not) but she did make lots of noises and did semi cry as she wanted something.    That was awesome to hear.   SO the new thing today was hearing baby girl make noise and cry.   

I also held her for 90min.   She held her body heat (well covered with lots of blankets).  She likes to hold my finger. Oh and they are stopping her lipids (fats) that she has been getting via IV.  They think she is getting enough from her feedings - this does surprise me a little since she hasn't put on much weight lately.    

Today I got to see her with open eyes for a little bit as well since she is no longer under the bilirubin lights.   Tomorrow I go again to try to get a SS#.  Hopefully we have all the paperwork we need this time.    

Tiny Fingers

Here are some more pics.   Thanks for keeping up with our story.

Holding baby girl

Little itty bitty toes

Baby J - Day 12- No More Ventilator

Called today to check on Baby J.  She is no longer on ventilators!!!!  They moved her to a bubble CPAP yesterday and she's doing well.  Blood gases have stayed good and she's only using 21% oxygen -room level oxygen- so this means she is breathing all on her own.  The CPAP keeps her lungs open so they don't collapse- it does't breath for her.   She also is now getting 5ml of food every 3hrs and will be increased to 7ml tomorrow if she continues doing well.   They had to redo her EKG yesterday- I'm sure she was very unhappy about that.   I can't wait for Sunday when I go back and see her.   I'm so happy she's doing so well.   Not much else to report on Baby J today- but wanted to update that.

Spent the week with my nephews and loved every minute, but I'm anxious to get back to see Baby J.

In other news I don't think my house will ever sell.  It's not exactly a perfect house and needs some work.  I'm going to go check out carpet prices tomorrow even though I really wanted to try to sell the house as is.  Oh well.   Hope all is well with everyone else.  Thanks for keeping us in your prayers.

Baby J- Day 10- Awesome Day!

2weeks 3 days old.
Weight 2 lbs 1 oz - she has lost weight- but again she had a LOT of urine this weekend - including peeing through her bed on Saturday and Sunday so I think the weight loss is all water weight and could be due to the meds she is on.

It's a long post, but well worth the read.

Today my family and I went to Topeka to see baby Josephine.   My parents took my nephews (who I'm having so much fun seeing this week) to a local Children's museum type place and I went to do baby stuff.  First I met the KCSL people at the Social Security office.  it has been interesting trying to get Baby J a birth certificate and social security number.  We are trying to get her SSI so she qualifies for medicaid  She qualifies for SSI automatically because of her low birth weight.   It's been a complete mess.  They finally got a birth certificate and we thought we were going to get a SS # today.   We did not.  We are going on Monday when I'm back up there.   Such a mess.

However I then went to the hospital.   And so much has changed.  The first thing I noticed when I walked in is a different Ventilator

May not seem like a big deal- still a ventilator- but it's a big step down.  I was told that this morning Baby J basically made it very clear she was done with the other one.    The other one was breathing more for her and kind of made her vibrate.  They are working her off this one as well and they think if things keep going the way they are that she will be off ventilators by Friday.  The next step will be a CPAP (probably a bubble CPAP) which is just like what some adults use at night basically.   It will keep her lungs open so they can't collapse, but she will be breathing on her own really.   She is already down to room oxygen level which is 21%.   I guess she really isn't showing any signs of Apnea (when they stop breathing for a several seconds)  or Bradycardia (dropping of heart rate- happens with apnea) which is AWESOME.  Most premature babies this young are almost guarantee to have those, but she hasn't which is why she will probably get the bubble CPAP and not another kind.   I was so excited to see the other ventilator sitting in the corner and hopefully we can take it away and not have to go back to it.  She was on this ventilator before I met her and she just wasn't able to keep up.

Baby J's X-rays are also looking a lot better and improving everyday!!  They are also not really pulling up any new blood when they suction her, in fact they are getting less of everything now.

Sunday they increased Baby J's feedings to every 6 hrs and also went from 2ml to 4ml.  Today she is up to 5ml every 6 hrs.   She is still being fed through a tube, but that's ok.   If she continues to do ok with this amount they will increase it again on Thursday.

Today she was on her stomach when I got there and when they were getting ready to move her she almost rolled herself over twice.   While this was hilarious she is still connected to tubes in her mouth so it would have hurt her and not been very fun...though it was funny watching the nurse the 2nd time as the bed was open.   Oops.

Today she had an EKG to check her heart and the PDA again.  Keep your fingers crossed it went ahead and closed itself up.   Remember they only were able to give her one dose of the meds they could give her because of breeding on the brain.  I should find out more about that when I call tomorrow.

Monday the doctors looked at her brain.   Not all good news but not all bad news.  It appeared like the bleeds had not continued or spread any further  which is awesome news.   However they feel like they are breaking down and creating clots that are causing the cerebrospinal fluid  to get clogged.  This is causing her ventricles to grow.  Worst case scenario is they will have to shunt her brain to drain it.  They are going to continue to look at it weekly.  It's a wait and see game again.  What does this mean in the long run...who knows.  Lots of preemies still walk away from it unscathed.   But if it gets worse or it doesn't release the pressure and become unblocked it could be a cause of Cerebral Palsy which really could just mean some joint problems.   But Josephine is a fighter (literally at some points) and I'm hoping for the best.   Keep praying for her cause that seems to be helping tremendously.

SOOOOOOO the best part about today was a complete surprise to me.  I didn't think this would happen for another couple weeks and even at first was told it might happen towards the end of the week, but they decided Baby J was doing really well and I got to hold my baby for the first time.

 (please ignore the bra.)

I even held her for almost an hour.  Everything you read says you may only get to hold them for 10 min the first time.  The only reason they put her back in her bed was for the EKG.  She is so little and light.   But YEA.  And she did so well.  And now I wish I will be there before this weekend, but hopefully there will be many more leaps and bounds.

I also got her little outfits in today.

Those are sitting on my iPad if that helps imagine the size.

When I left, poor Baby J had just finished her EKG which was longer than expected and she was not happy.  She was moving all over the place and if she could make sound she would have been screaming.  You could tell she was crying.   Poor baby.  Oh the other plus to her improving is when they do 'torture' her she is receiving so much faster with her stats.  

So thank you everyone for your prayers.  They are working.  I know there will still probably be setbacks as there are with all preemies, but right now I'm enjoying our accomplishments.  Please continue to pray for Baby J because even though we appear to be moving in leaps and bounds, we are only moving forward.   She still has a long way to go.  Thanks for all you support.   Here is another bonus photo.

BABY J - Day 7- Moving up!

Look at all that hair.

Baby J.  2 weeks old today

Weight 2lbs 2oz 

Yea for the first time, mostly good news today.   My brother and I drove up for the day to spend time with Baby J.   Yesterday they started Baby J on steroids (again I know not always the best thing- but it was a necessity at this point) and already things are improving. She is down to the 20's most of the time in percent of oxygen supplement.  The ventilator is being slowly worked down to where they can move her off of this one.   She also seems more comfortable.  She relaxes faster after being moved around or messed with and her stats recover much more rapidly than they were.   Her blood gases came back better today and her X-ray's even looked pretty good today.  She is also handling the upping of her feedings which are all still being done through a tube that leads to her stomach, but the residuals from it show that she is digesting it pretty well.   Now she is being given 4ml every 6 hrs.    They even stopped her IV fluids for a little bit today to help bring down some numbers from that and she is producing very full diapers (even peed through most of her bed yesterday).  The nurse thought she was finally getting about done with passing her merconion (SP?) so they will send that off to double check for drug use by her birth mom.   Oh and they are getting less blood when they suction her out- in fact very little.

Please keep her in your prayers tomorrow as they are scheduled to do another brain scan and I'm hoping her brain bleeds resolved themselves.  This is an aspect of all of this that I'm very worried about.   

Please continue to share our fundraising site.  I would still very much like to have enough to cover the Ronald McDonald house during my stays while she is so far away.   

Rearranging Baby J.

Baby J- Day 6- Away from baby

Today I was not with Baby J.   And it affected it more than I thought it would already.   I left home without the numbers to call as I plan on going tomorrow to the hospital and knew there wouldn't be anything to report.  This was a mistake.  I wondered about her all day- thankfully got the number and called.    It bothered me way more than I expected.   I also had to much time to think and was around lots of people today and their families, which then of course sent me reeling into the what the heck am I doing....is this really what's best for her.   don't worry after some stern words from my father and getting over that, I know that this wouldn't be happening if it wasn't meant to be.    It just seems weird to think I have this little girl I'm now tied to that is in the hospital while I'm out doing other things.

The only update i have today is that they did start the steroids.  Her blood gases came back not as good again today and they had to take the machine back up.    However, her additional oxygen was down to 26% when I called tonight and that's the lowest it's been all week.  Hopefully the steroids will kick in and help improve Baby J's lungs.  Maybe I will see a little bit of improvement tomorrow when I'm there.  

Oh I did order online a couple outfits for Baby J.  I'm not sure when she will be able to wear clothes as she's still under the blue lights, but I thought it would be cool to have small enough clothes to someday show her the size she was.    And I'm sure soon she will be able to wear something.  All the clothes (a whole two outfits) are made for NICU.

Baby J. Day 5

Chilling out in the blue light- today she was very happy and calm on her tummy. (sorry I know it's not a very good pic)

Not a lot to update today.   Today though she had an X-ray that came back looking better than it has.  Poor Baby J has had a lot of bleeding in her lungs possibly caused by a PDA which they can't really do much about.  However when they were suctioning her today she did have less blood coming up with it.

Also her blood gases remain are better than yesterday which is awesome.   Her blood gas results and oxygen needs are part of what goes into deciding when to take her off the ventilator she is on now and taking her down a notch.   This weekend they will probably start her on a steroid treatment to help speed up her lungs.  Yes steroids come with possible long term effects (many of which she is already at risk for), but they out way the risks of continuing to be on this ventilator.    They really wanted to wait till she was about 2 weeks old which will be on Sunday.

The big movement forward is that today the doctor moved her feedings from every 12 hours to every 6 hrs.  She is only getting 2ml a feeding so it's not much - most of her nutrition is coming from liquid stuff.   That should help her grow even more.

I stayed at the hospital most of today but had to come back to the Wichita area (baby J is 2hrs away from me.)  I do feel guilty but I also know that it's going to happen some and it happens with all babies.    I am going back on Sunday but have things happening around here.   Hopefully I will have awesome or great news to report on Sunday evening.

Thanks for keeping up to date on us and sharing our story.   Hopefully now that she is growing and getting older we will start to see some improvements.  She's a very sick little girl as the doctor said so she has a ways to go.