Beautiful Vomit!

I have been so worried.  Bella’s respiration rate had increased with mild retractions.  I was so worried that we were headed back to the hospital.  But I kept watching her pulse which was really good, and her oxygen saturation was in the 90’s.  I kept going over her medications that keep her from getting fluid overloaded.  I kept thinking of her heart and lungs and how they had showed such improvement lately.  And then last night, she vomited all over me!  Wonderful!  I was so excited and relieved!  She wasn’t going into respiratory distress at all.  She just has the same bug that the other girls have.  Yeah for vomit.  I felt so much better.  Now all I have to worry about is keeping her hydrated, and with an NG tube, we are doing fine there.

We went to the pediatrician today.  He confirmed that she just has a little bug and she is doing really well.  He ordered me some more supplies through Apria.  I have felt so guilty with feeding her through the NG tube instead of forcing her to eat more.  He told me not to feel guilty, and to just give her time.  As she gains weight and time passes, she’ll get it.

We have our ECI evaluation scheduled for April 13th.  I wanted to get her working with the therapists as soon as possible.  We have global developmental delays, a serious head lag, and now we aren’t eating.  I found out that Miss Kari (one of Joy’s therapists) will be doing the eval.  That is great news!  She is a wonderful therapist.  I’m looking forward to that!

Pictures at Home

Bella at home!  

Right after we walked in, I had re-attached the oxygen, but not the NG tube yet.      

 

 

 

 

This is Bella’s new set-up, complete with oxygen, pulse-ox, and feeding pump.  Hopefully soon, this will all be a memory and she’ll be snug up in her crib in her room.

 

 

 

The official hospital band removal ceremony!

 

 

Holding our sister, Bella

 

 

Bella is starting to “talk” and smile.  I’ll try to capture one of those priceless smiles soon!

Welcome Home!

Wow – what a trip home!  Bella was fabulous for the first hour, then she decided she had had enough of her car seat.  Long and short of it, by the time we were home, the blanket that I had carefully positioned to keep her hands away from her face was moved, she had removed her nasal cannula, and half pulled her NG tube out.  Did I mention that the pulse-ox was beeping its warning for about half of the trip?  I had no tape to reposition everything, so I drove with one hand on the steering wheel and one hand holding her nasal cannula on her face (yes, she was in the back seat). 

So, instead of the warm, sweet welcome with the kids that we were all expecting, it was more of a strageic mission.  Becca, you get this.  You get that.  Open that box from Apria.  Find this.

In not too long of a time, we had Bella with a new NG tube (I wasn’t nervous at all this time – Lizzy, on the other hand, had eyes as big as dinner plates.  She was sure I had hurt her.  Poor kid) and a re-attached nasal cannula complete with derma skin.   Sigh.  Welcome home, Bella.  Hello, kids.  haha!  What a crazy experience.

It is wonderful to sleep in my own bed again!  It is wonderful to have someone to trade off feedings with!!!!  :)

Check back, once I find the camera cord I’ll post pictures of Bella’s new setup.

A Three Hour Tour (from Gilligan’s Island)

That’s how I feel about this hospital stay.  I honestly felt when we came to the ER on February 8th that we would be here a couple of hours, maybe a day, though I had been warned otherwise.  Nurse Ann and my friend Lynn had said that she might be admitted, but I didn’t think they had meant for this long!  Oh well.  It is finished – and I am so thankful. 

Her heart has been repaired.  The doctors are positive that with time she won’t need the oxygen or the feeding support.  They feel her pulmonary hypertension will improve.  What a blessing!  And in my quiet moments, I no longer plan her funeral, but think of her life and all the wonderful things she will do!

I am grateful for many things.  I am grateful I live in Houston.  I have meet many families who are from out of town.  They live in hotels or the Ronald McDonald House.  (They are my favorite charity right now!  They have 2 houses here in the hospital and then a big house down Holcombe.  I truly appreciate what they do for the families of sick children.)  I am grateful that Bella’s condition was correctable – I have seen so many very, very sick children here.  I have complained several times about this being a teaching hospital, but there are so many good people that work here.  I am grateful for their care of our baby.  I am grateful for my church family who have brought meals into my family for these seven weeks.  I am grateful that Asia and my Mom took the kids when we ran off to the ER in such a hurry.   I am grateful for Rachel who watched and loved my children.  I am grateful to Marissa for the weeks and weeks of babysitting.  How can I thank you enough?  I am grateful for those who snuck into my house and cleaned (how embarrassing!  ;)  ) – thank you for your kindness.  I am thankful for those of you that have encouraged me along the way, with food (Emily and Laura B.), visits (Krystal, Debbie and Linda), emails(so many new cyber friends), rides for my Becca to and from school and church, and things I’m sure happened that I don’t even know about.  Most of all I thank you for your prayers and kind thoughts.  Jason and I talked one night about how you hear people say that they can feel the prayers of others.  We know we have.   We know that without those prayers, we would never have made it through.  Thank you.  I am thankful for my husband and all of his support.  He has had to bear the brunt of the emergency bathroom remodel and life for our family.  He is a dear, kind man and I’m grateful to be his wife.  I am grateful for my kids.  They have been through a lot.  I am grateful that they just keep on going.   I am thankful for Bella’s birth parents for blessing us with this sweet, wonderful child.  She is a miracle child and we are so blessed to have her.  I am thankful for Bella.  She amazes me with her strength.  To have her stare into your eyes is magic!  I am thankful to my Heavenly Father.  I was struck by this phrase the other day, “having power given them to do all things by faith.” (2 Ne. 1:10)  We have felt that power – and what a wonderful gift. 

In my inadequate way, thank you everyone for everything!

We are being discharged!

More when we get HOME!!!!

Wonderful News!!

It looks like we are going home tomorrow after all!

I was so worried.  At 3AM, Bella had had no output in a while, she was pretty positive.  The nurses were worried enough to call the resident.  So from 3 AM until now, I have bounced between anger that they would take away her diuretics too quickly and despair that we would never leave here and guilt that Bella needs the very best in care and what was my problem. 

Couple that with the fact that I get maybe four hours of sleep a night here between feeding her, vitals, weighing her, and CPT every couple of hours.  Then there’s the fact that my intake is a little off.  In short I was becoming a mess.

The doctors just rounded.  The attending feels she is doing fine.  She is slightly dehydrated which would account for the reduced output.  The nurses had stopped me from using the NG tube because the doctors had written “ad lib” for her feeds.  During rounds I clarified that.  If she was slightly dehydrated shouldn’t I feed her all she can and then tube the rest to 75 cc’s (2.5 ounces)?  Yes – there had been a miscommunication.  He also explained that as someone is being weaned from diuretics (now lasix every 12 hours and aldectazide every 12 hours), the body can become slightly dehydrated.  He feels that everything will correct itself in time and that she is on the right course.

Today I placed my first NG tube.  It’s not that bad – but my hands were shaking!  Sweet baby.

All the supplies for her oxygen and feedings are at the house.  They just came and removed her PICC line.  We are going home (tomorrow)!!!

Thank you everyone who has commented from the last post.  Your comments have cheered me and helped me wait and wait for rounds.  I so needed that today.  Thank you for your support of our sweet girl.  It means the world to us to know that others are praying and thinking of us.

Thank you!!

On the Other Side of the Door

A while back Jason and I listened to a show  where the guest shared that the number of people waiting in the ER’s waiting room for the patient had a direct correlation to how the patient fared.

We figure that this blog is our door between the craziness here at the hospital and all of y’all so kindly supporting us out there in the waiting room of cyber space.

So today I have a strange request.  If you feel comfortable doing so, would you leave me a comment today?  Just your first name would be fine.  With everything going on right now, I’d love to know how many are out there waiting for Bella.

*In case you don’t know how to leave a comment, click on the word COMMENTS  just below here and next to the date and time of this post.  Write your comment in the box, then click on the little circle in front of the word Anonymous, then click the orange box that says Publish Your Comment.*

Thank you.

Still hoping for Friday…

4.635 kg or 10.2 pounds

We are still go for Friday!    Apria called.  We will have all of our O2 and feeding supplies delivered tomorrow.  Her formula will be delivered either Friday or Saturday, but we go home with enough for 3 days.

I have been receiving all of my NG training today.  I have to learn to put one in.  Ugh!  I hate that I will learn on my baby.  My poor sweet little guinea pig.  Hopefully, I’ll be a quick learner.

Oh – I am better!  It must have been a 24 hour bug.  Thank goodness!

Jason came up and we had dinner for his birthday.  I loved seeing him!

A New Hopefully

Sunday they told Jason Monday or Tuesday to go home.  My friend Emily told me she had 2 hopefullies before they finally allowed her to go home.  So at least I was prepared.  Today they gave us a new hopefully – Friday.

Yesterday’s x-rays showed improvement – hallelujah!  After all those treatments and all that time ( 3 weeks post-op today), I am so grateful!  So her IPVs have been DC’d (discontinued) and now we do CPT – kinda like how you burp a baby but on the front, side, and back of the chest.  She likes it much better.   That mask he is holding has been taped securely to many tongue depressors.  He pounds her with the mask.  If you click on the picture, you can see it’s cushioned.

Her echo was fine – there was no change from the two done in CVICU.  There is still a tiny VSD.  Dr. Salazaar had told me that he felt that would close on its own.  So no worries there.  Importantly, and what they were looking for, there was no fluid around the heart, so two more meds have been DC’d.

The doctor is messing with her diuretics again (ugh) – but hopefully they will get that to an acceptable place.  I asked and he is comfortable with her I &O’s.  Good, always something I worry about.

And most importantly, I asked quite directly if he was rotating off the floor before Friday.  No.  Good.  We don’t have to break in a new Attending.  This Friday discharge might actually happen.  Becca has a big church event this weekend that she really wants me there for.  Jason has to work all weekend, so if Bella were still here, I’d be here.  I can’t bear disappointing my kids any more.  We’ll do what’s best for Bella, of course, but I’m really hoping for Friday!

Selfishly, I am kinda OK that we will be here 3 more days.  My hope is that by then I will be better.  I have a terrible stomach bug.  I think it’s what was wrong with Bella over the weekend.   Isn’t she sweet to share with me?  Yes, I am washing my hands and being very careful and I am resting.  A nurse got me some Gatorade, because my I&O’s are VERY off!  :)   I do not want to bring this home and have to deal with 8 sick people and a new baby to adjust to.

Sadly, though, today is Jason’s birthday.  I miss you honey!  Happy Birthday!  I was really hoping that Bella would be her Daddy’s greatest birthday present today.  I guess this is one present that will arrive just a little late.

My neighbor Nancy told me something before we came to the hospital.  I thought it was really cute.  I wish I was clever and witty, but I’m usually not.  So I tend to remember the fun things people say.  Nancy told me that this baby came “some assembly required.”  I really liked that.  It was fun and sweet.  It expressed acknowledgement that she needed some help, but also, I felt, expressed hope for the future – that her heart wasn’t the end.  Obviously it has stuck with me for almost 2 months now, so I thought I would share.

Two pictures of Bella, one ready to eat and the other, blissfully slipping into sleep as the NG tube takes care of that second required ounce.

Monday

4.6 kg or 10.1 lbs

Bella is zonked out.  I had a really hard time trying to wake her to eat last night.  She is sleeping now – which is not normal for her.  She is the queen of the micro nap.

Sigh.  I should know better than to get excited when a doctor talks about discharge (or surgery or any of our other plans).  We have a new attending today who has a new idea of what is wrong with Bella.  Sigh.  Maybe a few more days.

Today Bella is having another echo done and another x-ray.  They will be messing with her formula and placing an NG tube.  They are going to lower her methadone again.  They are trying.  I understand and I appreciate it, but they are also guessing. At least it’s an educated guess.

She woke up at one point today, so I gave her a bath and got her dressed and hoped that would wake her up enough to eat.  She took an ounce and a half, not as much as I had hoped.

So for today I am hoping we get some good information from the tests and that we can get some good food into her belly. 

Sunday’s Visit

During the changing of the guard, the girls all got to come up and see Bella.  I think this is vital – very hard (I’ll explain later), but so important.  The last thing we want is for the girls to begin to resent Bella.  By being able to come and see Bella and hold Bella and love on Bella, they are falling in love with their little sister.  We need those good feelings.

Below are each of  the girls holding Bella.  Becca wanted to see her scars! 

Playing around in Bella’s room.  Joy loves the bouncer.  She crawled over to the door and knocked on it – I imagined she was saying, “Please, doctors, may my sister come home and play?”

My silly Sammi and Lizzy pretending that Lizzy was the baby and Sammi the devoted Mama.

 

   

 

Jessi and I adoring baby Bella.

 

 

 

I sincerely hope we are at the end of this long journey.  The drama and hysteria are increasing every time there is a changing of the guard ( Jason comes and I go home or vice versa).  I must have kissed Sammi good-bye a hundred times.   We had to convince Becca that no, she could not skip school and spend the day with me down here.   Lizzy totally lost it.  The Lord will not give us more than we are able to handle and He will increase our capacity to handle what we are asked to bear.  I know He has done this.  I really hope, for my family’s sake, that we aren’t ask to bear much more.

I talked to the night nurse.  Her PIC line is intermittently having problems with blood return.  Her eating has decreased.  She still requires some oxygen support.  They are concerned that the lining of her heart might be irritated.  There is an echo and a 2 view chest x-ray scheduled for tomorrow.  Based upon the results of those two tests, we’ll know how much longer we’ll be here.  They had mentioned to Jason being OK with sending her home on oxygen and an NG tube, but if she has to have IV antibiotics, that would keep her here.  We’ll know more tomorrow.

Weekends

It seems like the weekends are always slow.  not many decisions are made on a Saturday or Sunday.  The prevailing thought is generally to wait for Monday.

Although it being slow, our little Bella did not feel like eating as much yesterday.  She is doing fine just needs to eat more.  They are considering thinning down her formula so it is easier to eat but it would require her to eat more for the day.  The second option was to use a #2 nipple to increase flow to Bella.  They do not have size 2 nipples here and were quite flustered.  I told them that the # 2 really just means there is two holes in the nipple as opposed to 1.  We made our own #2 nipple and so far she is eating more without choking on the increased flow. 

--Jason

Saturday Update

Well rounds have now been done.  The doctor came in and said she looks like she is doing wonderful.  (Same thing the surgeon said earlier this morning).  Bella is now on 1/4 liter of oxygen and they have stopped the potassium.

They are trying to get everything in order so she can have oxygen when she goes home, but we are thinking she may wean herself off of it by then.

The doctors say she is progressing really well and we should be able to go home in a couple of days. (I asked what a couple of days means, and they said Monday or Tuesday). 

I also know this is all dependant on 2 unpredictable things:

1.  Bella's cooperation.

2.  The Attending Physician of the moment.

With that said,  we are doing great and looking to be home quickly!!!

--Jason

My Sweet Little Drug Addict

Withdrawal Update:  For the past 5 hours she has been pretty miserable and then she started sweating.  So the doctors convened and decided to up her methadone a little, since it’s by mouth now (less effective than IV), and give it twice a day.  Hopefully, she’ll be more comfortable.

Sweet baby.

Friday’s Report

9.7 pounds; 25% percentile for the DS Growth Chart

I honestly have no idea how she has grown during the fifteen days she was in ICU – she ate nothing.  TPN with lipids and IV fluids were maintenance, I thought.  But grow she did.  Bella, you are amazing!

 

Bella staring at her mobile.

 

 

 

 

I was determined that Bella was going to be bathed and dressed every day now.  We finally got all that old blood off of her and she is dressed again.  We are styling snap shirts so our doctors and nurses have access to her chest, but we are dressed like a normal human again!

 

The doctors said treat her like a normal baby, so I marched down the hallway to the child life support and asked for a bouncer.  Here she is having her blood pressure taken and being given IV medication in her bouncer.

 

 

I asked about Bella’s Ph probe done back on March 2nd.  Everyone had forgotten about it.  This little thing called open heart surgery came up.  She has faithfully been on Zantac every day.  That was officially discontinued today because the test was normal.  Yeah – one less med going into her tiny body.

The quest for the perfect diuretic balance continues.  She has been on a large volume of lasix.  They want to wean that somewhat – the goal long term would be to discontinue it altogether.  Yesterday they made it IV lasix every 8 hours.  Today they made it PO (by mouth) every 8 hours.  PO Lasix is less effective than IV lasix.  My concern, and I voiced it to the Attending (because I have learned that you can talk all day to the residents and the fellows, but the attending doctor is the one that really has the final word) is that I don’t want to take away all of her diuretics too quickly.  She has been diuretic dependent her whole life, and when she gets too positive (more in than out) it effects her lungs every time.  Dr. Santos was voicing the question of why was she on such high volumes of lasix for her size.  As no one knows, this is where Mama interrupts, because she doesn’t respond that well to lasix.  Many doctors have told me that by now.  They give her a dose, they expect this huge output and she doesn’t produce.  So they usually end up doubling up with another diuretic.   Ahh.  (OK – pet  peeve (one of several) of a Teaching Hospital.  New doctors constantly.  No one consistent person to see her steady progress and know these things about Bella.  That’s why you are there Shelly, I hear you say.  Yes, true – but only if they LISTEN to me.  Ugh.  Sorry…back to the story)

I explained that I was concerned about taking away her diuretics too quickly and her lousy response to lasix.  At that point I explained that the doctors in California had her on lasix three times a day and aldectazide twice a day.  I quickly explained that I knew that they didn’t normally use aldectazide (they call it aldectozone here  - weird) here at TCH (can you tell I’ve had this conversation a few times before?).  She looked at me and said that is exactly what she was thinking of doing – lasix 3 times a day and aldectozone 2 times a day  - all by mouth.   So I am comfortable with this plan.  Whenever the doctors say something that is what the doctors and nurses in CA said or did, I feel comfortable.  They knew her.  It will change again, I’m sure, but I’m content right now.

Withdraw symptoms thus far: yucky diapers and feeling icky.  She wants to be held A LOT!

Jason is coming for the weekend tonight.  I will be at home with the rest of my girls.

New Floor, New Plan

The doctors have rounded – interesting how my life hinges on that daily meeting.

They would like to see her get off of oxygen, but if her right ventricle would be more happy with O2, they are amiable to sending her home on it.

She is now in drug rehab.  She has had so much narcotics for so long that they have to wean her from them.  They tell me I’ll recognize withdraw if I see it.  From what they describe, it looks like heart failure, irritability, sweating, diarrhea.  Fun – this will be a long process that may continue at home.

She needs healthier lungs.  Today’s x-ray looks better than yesterday, but that is no promise that tomorrow’s will be another improvement (as much as I would like it to be).  The doctor told me that she has very sick lungs.  The IPV (breathing treatments) will continue. (poor Bella)  This is definitely something everyone can pray for – that her lungs stop filling up with fluid and collapsing.

They are going to change her lasix to PO (by mouth).  The goal is to get all of her meds to PO  since that’s how I would give them at home.  Since PO lasix is not as effective as IV lasix, we’ll have to watch her output.  The last thing we want is for her to have insufficient output and fill up her lungs again.

And….they want to start treating her like a 4 month old baby, instead of scheduling all of her feeds.  They want her to eat when she wants, how much she wants.  Ugh!  Good and bad news.  The good news is this is a step forward.  The bad is that Bella hates her formula.  I asked them if we could change it and was meet with a resounding NO.  They want to wait 6 weeks after her chylis was present before they take her off the envaport.  The problem with envaport is it tastes nasty (and it stinks!).  At first she was so excited to eat, the last 24 hours, she is eating, but turning up her nose at this formula.  (How do you know she doesn't like it, Shelly?  The scrunched up face and the tongue sticking out are a pretty good indication.)

As far as a timeline, MAYBE the end of next week.  Maybe.

Our New Address

If you need Bella or me, we will be at 1502 West Tower, Texas Children’s Hospital. 

This morning the doctors decided that Bella was well enough to move “down to the floor.”  Being a very efficient hospital, we just arrived – at 5:30 PM.  So if you have been waiting for today’s post, that’s why.  We have been waiting, like you, all day.Waiting and waiting

Bella continues to have the collapsed lung.  They are giving her breathing treatments every four hours.  She hates these.  They are bursts of positive pressure that carries medicine to her lungs to help and open them up.

I hate this!  Move it off my face!

She is eating like a champ.  Dr. Mott says this will really help us as eating is usually the last thing that babies master before going home.  It is a pleasure to feed her now.  She no longer sweats.  She eats and looks at me.  What a blessing!  Dr. Salazaar says if these are the changes we have seen after two weeks, imagine what we’ll see in six months. 

    Making our escape! Our new home away from home

Two Weeks Post-Op

This is Bella today:

 

 

 

 

 

 

They moved her into a crib.

 

 

 

As you can tell from the picture, equipment keeps leaving our room – yay!  They took away the Nitric Oxide today.  She doesn’t need it anymore.  She is on 2 liters of oxygen right now.

The results from her ultrasound were inconclusive, but clinically she looks good.

She is eating from the bottle for all of her feeds now.  This is good.  Two things that I have noticed: 1. she doesn’t sweat anymore when she eats.  2. she is able to go to the bathroom easier.   I know that sounds weird, but she used to cry when she had a bowel movement.  Today she just filled her pants and went on with her day.  That is good.

Least we have all good news, her chest x-ray looks worse.  We will not be leaving ICU with this much yuck in her chest.  She has breathing treatments (that she hates by the way) every four hours, but it doesn’t want to clear up.  We’ll see.  They did another x-ray this afternoon.  Half of her right lung is now collapsed.  Bad.  But to look at her you wouldn’t know it.  She is breathing fast, she is pulling every so slightly – but compared to how she used to look, she looks wonderful!  And she is comfortable.  One doctor said to her, “Bella, you are confusing us.”

Getting Free

Today Bell’s central line was removed.

After a while, they removed her last chest drain.

She is off her milrinone.

Yay!  Good progress.

They took off the tape off of her chest incision.  That looks really good.

I was able to hold her for one and a half hours!!  She and I liked that!  She ate her 50 cc’s in 9 minutes.  She wasn’t satisfied, but she was glad to eat!  Way to go big girl!

Bella just had an ultrasound of her upper right arm and chest.  They are trying to rule out a blood clot. 

They are hoping to wean the nitric oxide soon.  They are hoping to kick us out of ICU on Wednesday.

Something to keep my Attention

They found me a TOY!

Bad part is it is wind up and she likes it to keep going.

:)

-Jason

Hungry Bella!

The nurse said that they have started bottle feedings for Bella.  They are supposed to do half feeds and half IV.  She gave Bella 20cc of formula and she demanded more.  She got permission to do rest of bottle (40cc) and Bella ate it all up.

They are going to wait for tomorrow to take out the chest drain tube.  Two reasons,  They want to make sure there is no more chylis now that she is on formula again, and the are taking out the central line in her chest tomorrow and will do both at same time.

This will be good as Shelly will be able to hold Bella with those lines out.

-Jason

Extubated

Miss Bella was extubated at 2:15pm today.  She can now vocally tell us when she is upset.

Everything went well, and she now only has a nasal cannula to give her the NO.    The NO was set at 3 this morning with the ventilator still attached.  It is now at 5 because they don't know how much she will actually get with the nasal cannula.  She should be getting about same as before.

Congrats Bella on getting the breathing tube removed.

 

 

She looks tired here but is doing great, and we can see her beautiful face.

Getting Ready

Lat night they started doing volume supports.  She did well, so they increased them to 2 hours off, 4 hours on.  She is tolerating that very well.

Today they are getting her ready to be extubated tomorrow.  She is receiving more blood.  She is receiving some steroids because her throat will be swollen from the tube.  They went up a little on her sildenafil and down a little on her NO.  They went down a little on her PEEP (pressure at the end of the breathe).  She will be receiving a couple of breathing treatments (while still intubated) to really open up her lungs.

Goals to accomplish before we can leave ICU:

• must get off NO (I was incorrect about this.  I thought she had said we would go home on nasal cannula NO, but what she meant was we would extubate to NO)
• her line in her tummy must come out
• she must be off milrinone

Goals to go home:

• all the above
• get off oxygen
• eat and gain weight

The surgeon also felt that her last chest tube could probably come out tomorrow.  Jason is going to see a whole new kid.

Slowly Weaning

The vent has been turned down to 18 breathes per minute and she is doing little breathes on her own.  Wonderful to see.  Her PEEP is still at 7 and her NO is still 4.8.  Her lungs are still yucky.  So what does that mean?  They are lowering the frequency that the machine breathes for her, but each breathe is still very supported.   The PEEP is still high to try and inflate the lungs with each breath.  They have stopped the lasix drip and she now gets that every 8 hours.

I have been picking Nurse Nick’s brain today.  I want to understand the relationship between right heart failure and pulmonary hypertensive crisis.  I have drawn pictures.  He has corrected my pictures.  He tells me things and I repeat it back in different words.  The man is going to be exhausted when he goes home!  Seriously, I should have taken anatomy in college.

Our girl is doing well.  She is awake most of the time now.  She naps here and there.  She has a low grade fever.  I want to give her a bath and do her hair so badly.  :)  I would love to hold her again.  I think fairly soon.  I think they might try volume support in the next day or two.  (What is that?  Volume support is when they tell the ventilator to be back-up rather than primary in the breathing department.  She gets to try out breathing, but if she doesn’t do enough then the machine kicks in and helps her out.  So it’s like training wheels for remembering how to breathe.  It’s a good thing.)   I’m so grateful they have decided to do the nasal cannula of NO, otherwise I’m not sure when we would ever get off this machine!

Not Much Change Today

They turned the vent down to 25 breathes a minutes (from 28) and she is making up the difference to around 40.  She still doesn’t like it when they take away her NO.  She is waking up more and more and does not like that tube at the back of her throat.  :)  I, of course, explain to her that it’s simple to get rid of it.  Just get off the vent.  Easier said than done.

She is becoming more and more like herself  and staring at people ass they come to work on her.  Welcome back sweet girl!

I’ve talked with Dr Salazaar.  He is pleased with how her heart is doing right now.  She is taking a little longer than he expected, but she is improving.  I also found out that her left lung is collapsed, so they are working with that as well.

The doctors just rounded and it’s official.  Bella will extubate (eventually and when she’s ready) to nasal NO.  What does that mean, Shelly?  That means she will eventually, when she’s ready, get off of the ventilator and have those tubes that sit on her face and have little prongs that fit into her nose which will give her a steady flow of nitric oxide .  Then I can hold her again!  I’ve also wondered how we are going to teach Joy not to touch Bella’s tubing!  :)  A problem I will deal with later. (memories of Gone With The Wind anyone?)

One Week Post-Op

Look who is starting to wake up.   

 

 

 

 

 

 

She has stared at me and held my finger for the past hour.  Very nice!

 

 

 

 

 

 

She keeps spiking a fever, so they are running tests to figure that out.  She is on some “big guns” (Nurse Nick’s words) antibiotics.  We’ll see in the next day or two what is growing in there.

Last night our family talked about prayer.  We pray as a family, but last night we prayed specifically and with very real intent.  We prayed for two things in particular.  1- that the chalis would stop or in kid language since God understands us always, that the yellow stuff would stop coming out of her chest and 2- that her pressures would come down or in kid language again that her lungs would relax.  So I have to report to my family the results of our prayer.  The yellow stuff has stopped and the doctors are going to let Bella start eating again  - slowly, but it’s a step forward.  And how are her lungs?  I don’t know, but I do know that the ventilator has been changed so it’s only taking 28 breathes a minute, and she is taking breathes, albeit small ones, on her own.  Good girl, Bella!  I have to tell you that our prayer included another request.  We prayed for our miracles, and then said, “but if not, please sustain our family and Bella through this time.”  He knows all that Bella is going through.  He, the Creator and Master Physician, understands what our girl needs.  He’ll help us through whatever lies ahead. 

Thanks for all the prayers and support y’all!

The doctors were rounding, so I have new info.

We are now in right heart failure – better than complete heart failure!  As Nurse Nick explained it to me, her heart was completely open in the middle, so she had one pressure in her heart.  Now she has 4 chambers – so she has 4 pressures.  Before her heart just kinda did everything together, now each chamber has it’s own job.  And her body and brain have to figure this out.  Her right ventricle is still acting like it’s on the left side and using too much pressure to send the blood to the lungs.  He said with time and all the meds she is on, she’ll be OK.  Do they realize when they say that that I put all my faith in those words?

He did tell the doctors that when she is suctioned (they clean out the vent) or even just when they open the vent to remove the excessive water buildup that she does not tolerate being off the NO (nitric oxide) well.  She takes about 30 minutes to fully recovery.   Just Shelly now, but it looks like NO will be a part of Bella’s life for a bit.  Dr. Dickerson did tell me yesterday that they have sent kids home on NO nasal canulas before.  OK.

I found out what a pulmonary crisis is.  It’s what happened on Friday when she got all marbly, turned blue, and decided she didn’t like putting oxygen in her body very well.  They are really on top of it.  They stop a lot of those by sedating her.  At 3PM today, she was really marbly and her hands were going blue, so now she is sleeping.  It helps her to stop fighting her vent and get what she needs.

Afternoon

We have had an echo to check her right heart pressures.  They are high.  She now has a fever.  Happily, she is opening her eyes more and more.  I find I talk to her more with her eyes open.

Talked with the attending cardiologist and she says to expect to be here another month.  For those of you that have been here, what do you do with your other children?  How do you keep their lives going?  thank you for sharing with me.  I need it and I appreciate it.  There’s nothing quite like “I’ve been there.  You will survive.”

One Step Forward, Two Steps Back

Her chylo-thorax continues, so she is off all food.  She is back on TPN (food in a bag).  She didn’t like her vent (that is a ventilator, Cyndi – sorry I wasn’t clear) settings, so they are higher.  Her NO (nitric oxide) is back up to 5.  She is off versed, and on morphine and atavan.

For those who have been here, done that (Cammie, Heather, any others)  – I know each kid is different – but I need some parameters here.  How long were y’all on the vent?  How long till you were home (that mystical place we dream about)?  For reference, tomorrow is one week post-op and our pressures were 7 (moderate PH) and a transitional AV Canal.  She is 4 months old and been home 11 days.  update:  I asked one of the cardiology fellows and his prediction is another week up here in ICU.

To be positive, I love watching her breathe.  I love watching her chest rise and fall.  Slowly, easily, with no retractions.  She is breathing at 32 breathes a minute -  how beautiful!  A month ago it was 80-120 a minute.  She no longer looks like she just finished running a marathon.  Granted a machine is breathing for her, but it is a beautiful sight to watch her chest.

Volunteers brought her the cutest blanket.  It’s so cute.  I am grateful for all of these wonderful people who donate to Texas Children’s Hospital and the Ronald McDonald House.  These are such blessings to those of us here at the hospital.

Our Sweet Girl:

Pulmonary Hypertension

Last night Sister Rolfson brought us dinner and I expressed my confusion about everything going on.  She really encouraged me to seek more understanding, so I expressed my confusion to our nurse today about Bella.  She relayed my concerns.  When they talk about her they say, “trisomy 21, transitional AV canal, blah, blah, blah, pulmonary hypertension, blah, blah, blah.”  I get most of my information from eavesdropping (and interrupting) during rounds.  They tell me I know more than most parents, but honestly I have a kindergartener understanding of their graduate level knowledge.  So I research a lot and try to learn more and more.  But I couldn’t understand what Bella is doing right now. 

Her repair was last Tuesday and the surgeon came out and said (as you remember) that it was textbook. The holes weren’t that big.   So in my mind, OK, fabulous, we have solved the problem, we’ll get better now.  Not so fast.  We are still sitting here on Sunday on the vent.  She is still sedated.  She is still fighting the same battles.  I’m confused.  If the heart was the issue, why aren’t we better?  So my cardiology fellow (the same one that sat down with me before she was presented and answered my questions and then told me himself that she was scheduled for surgery) came in and talked with me today.

This is what we talked about.  I’m still trying to make heads and tails of it.  Why didn’t I take anatomy in college?  The heart and the lungs are so interconnected.

If all the problem with Bella was the heart, she would be on the 15th floor getting ready to go home already.  But she has pulmonary hypertension.  Yeah, but y’all said it wasn’t too bad.  Right.  What they meant was it wasn’t so bad that they wouldn’t do the repair.  Oh – glad I didn’t know that before.  Her pressures were a 7 when measured on the cath.  Normal is 1, maybe 2.  OK.  So is her PH mild or moderate (I’m not going to even say severe)?  Moderate.  Ahhh….So, all the drugs and support she is receiving at this point are for her lungs. 

He also explained about the NO (nitric oxide).  It’s pretty easy to come down on the NO till around 5 (a measuring level).  The cells in the pulmonary artery get saturated around 2, so coming down from 20 to 10 – easy.  Coming down from 10 to 5 – doable.  Going down from 5 to 2 and then 2 to nothing – much harder.  That’s when it’s actually happening.  Yesterday they tried to turn her down, and she decided that wasn’t a good idea.  She’s currently at 1.9 /2 and she’s happy.  They want to lose that today.  We’ll see.

He said that they are letting her guide them.  If they rush her, she will go into pulmonary crisis (not sure I want to know what that is) and so they are giving her time.  She could be here another week.  That being said, they are still hopeful that she can be off the vent (and the NO) in a day or 2.  She is on the sildenafil and they will continue to increase that till she is where she needs to it to be.

The chyalis is leaking from her chest cavity.  They said sometimes the thoratic duct gets nicked during surgery and then it’ll drain into the chest cavity.  This is a problem because it puts pressure on the lungs and then they can’t inflate properly.  That’s why the chest tube is in there – to pull the fluid out.  If it doesn’t get better, they can go in and remove the duct.  The doctor feels that it will resolve on its own, especially since she did this before when she was in the NICU.

I have more to learn about pulmonary hypertension, but at least I understand a little more what Bella is doing.

Who, What,Where?

Miss Bella had about 15 minutes of awake time.

<br/><a href="http://video.msn.com/video.aspx?vid=808b7df8-d894-4c0b-aefa-16e4dac98233" target="_new" title="bella">Video: bella</a>

Saturday

Saturday is Daddy’s day with his Bella.

I got here this morning just as they were doing rounds.  The first thing I hear is they are going to do a blood transfusion today.  They want to increase her hemoglobin levels to help oxygenate her better.  with all the labs and everything else they do it just continually draws down the hemoglobin levels so we are going to get her back up to where she needs to be. 

To me she is looking good today.

I cant wait till she is awake again with the way she watches everyone around her.

Afternoon update

Arabella started fighting against her vent, at least that’s what they think.  Her stats went down, she got all marbly, her face was ashen, and her hands were blue- and her Mama was worried.

They decided she needed to be more sedated and medicine came flying into this baby.  She has been given more morphine, versed, something that starts with an A for anxiety (asked them to give me some), and paralyzed her again. 

Her stats look better.

She is fluid overloaded.  She is –4.4 instead of –100, so they are going to work a little harder on that goal. (Remember that is output – so they want her to go a lot, but my diuretic dependent baby doesn’t like to do that so much!)

They also don’t like the looks of the drainage from her chest tube, so they are sending it away for testing – and plan on changing her formula to something easier on the lymph nodes.  Poor baby!  The testing hasn’t come back yet, but they are looking for chylous and if it’s there, they will change her to enfaport lipid.

Hang tough, little one!

Happy Birthday!

Bella is now 4 months old – and what a 4 month journey she has had.  May your next 4 months be wonderful and sweet my love!

The three babies around us are leaving the floor, we are not for a while.  Yesterday they were talking to extubate on Saturday, now it’s Sunday or Monday.

We are back to our familiar territory – oxygen saturation and dieresis.  Her lungs are wet.  Over night she kept de-sating, so they increased her PEEP – that’s the pressure that comes at the end of the breathe from the ventilator.  Seems to have helped.  They  have increased her lasix again and are using another diuretic.  They want her to be –100 today.  She is starting to get really puffy.  They are delicately decreasing her NO (nitric oxide) and increasing her sildenafil, since they do the same thing and they want her off the ventilator eventually.  They did take out one of her chest tubes since she’s not draining some much blood anymore.

So a small step backward, but hopefully she’ll drain a lot of this fluid and feel more comfortable soon.

Just pictures:

her ventilator and pain meds

 

 

 

 

Then her med tower – got pictures of both sides  - glad I don’t have to keep track of all of those

Closed

Bella is now closed. He also removed one of her chest tubes. Today will be a watching day to just let Bella get used to this new change.

A-line update: She does have a new line in. It is in her right foot. From the evidence on her body this morning, it took a while to get it, but at least it's in and she didn't feel it (thank goodness for sedation). My sister asked why do we need an A-line so badly. The A-line gives us very accurate blood pressure and pulse readings. Bella is still in danger and she could crash fast and hard. They want to be able to monitor her minutely and constantly. It's also another line if they need it.

As a Mama, I have to say she is doing really well. She is coming through this so much better than expected. I am so proud of you little one. Hang in there sweet baby.

Closing

The hospital just called (be still my heart). Thankfully, she is a good nurse - the first words out of her mouth were, "Arabella is OK." OK, I can breathe again.

Arabella was negative for the night (that means she is getting rid of all that extra fluid), so Dr. Salazaar is closing her chest this morning! It should take an hour.

A-line

This is what the doctors and nurses call the atrial line that Bella has.  I should say had.  She doesn’t like to keep IVs and an atrial line, while different from an IV, is no different  - Bella doesn’t like them either.  I warned them – Arabella is a hard stick.   One hour and two doctors later, we still have no A-line.  I am so grateful she is asleep through all of this!  I had to leave the room through a lot of the trying.

I did learn, though, that Bella is the sickest kid in the ICU here.  Oh.  Not sure I wanted to know that.

Dr Salazaar also said that he won’t close her chest until she gets rid of more fluid.  So my diuretic loving child may not be closed tomorrow after all.  We’ll see.  They have her on a lasix drip.  We can hope.  I am hoping with her repair that she will eventually learn to not be diuretic dependent.

Everyone is encouraged that she has been so stable today.  I expected her to be, they didn’t.  I’m glad no one told me.  I also learned that when they finally do close her chest she might take a step backwards, so we’ll have to wait and see about that too.  Lots of waiting. 

My sweet girl.

Recovery

Arabella is doing well.  They have turned her oxygen down from 100% to 60%.  They are just supporting her and pretty much letting her be.  Tomorrow Dr. Salazaar will close her chest. 

I learned something new today.  Surgery and steroids can be bad for your glucose levels.  Bella’s glucose was 500 during the night.  They put her on insulin and it’s down to 220 now.  Poor baby.  No, this doesn’t mean she’s diabetic, it’s a reaction to the surgery and the steroids.  Update: glucose 102, insulin stopping.

They are going to start TPN (food in a bag) soon.  She is no longer paralyzed, just sedated.

Her PIC line dressing was changed today.  This week’s princess sticker is Belle – very appropriate for our Miss Bella!  :)

Linda Mickle came and visited me today and brought me lunch.  Ladies at church are bringing in dinner.  How can I thank everyone for all of the support we have received?  We are blessed beyond measure.  I am so thankful!  I can’t express it well – Thank you everyone!  Truly!

Eavesdropping update:  I have been wondering how long we would be here in the CVICU.  A young boy had surgery at the same time as Bel and just left the CVICU, but the nurse on 15 warned me about that – that kids can turn around pretty quick.  The internet has relatively short recoveries – about a week, surgery to home with 1 to 2 days in the ICU.     Dr Dickerson prepped me that it would be longer for Bella.  I just overheard two people walking through and discussing room space – their words – this one will be here for a while.  So there you have it, a while.  Our nurse says that each kid sets their own course, there is no norm.  She would say maybe Monday to leave here.  We’ll see.  It sounds like a while.  :)

It Is Finished!

The surgery is over.  To re-cap what Dr. Salazaar said:

The repairs were text book.  Everything went wonderfully.  Her valves are not leaking at all – wonderful news.   (tremendous blessing in fact!)

They did NOT close her chest – because he is worried she might become unstable.  He didn’t want to close her chest and then have her heart swell.  This might lead to an arrest.  He will close her chest when he feels she is doing better – as soon as tomorrow, but we have to let Arabella tell us how she is doing.  It is strange to watch the yellowish plastic move in time to her heartbeat and realize that her heart is laying right there.

Her pressures in her pulmonary arteries are high.  She is on nitrix oxide and oxygen.   Her oxygen levels still are not where they should be.  She is on a ton of different medications to help her.  She is currently paralyzed from the medications to help her body have to work less.  She has pulmonary hypertension and sick lungs (his words), so they are really going to have to keep a close eye on her.  After talking with Dr. Mott in the CVICU (he’s on in there – which makes me feel wonderful) he showed us her chest x-ray.  Her lungs are heavy.  Dr. Salazaar reassured us that the nurses and doctors in the ICU are wonderful.  And he told us he lives 4 minutes away and left instructions for them to call him if needed.  Her lungs are healthier now then they were this morning, and will hopefully continue to improve with time.

He told us to get some rest, because Arabella is going to need us in a few days.

Debbie Hudson, my friend from church, came and stayed with us for the entire surgery.  I am so grateful.  She helped us so much.  Thanks Debbie!

I am grateful for the doctors and nurses  - the entire team.  We are so grateful to be able to take this next step to getting Bella healthy.  Thank you for your prayers and kind thoughts.  Our family thanks you all!  And we wish to express our gratitude to our Father in Heaven who oversees us all.  May He continue to bless our sweet girl.

before:

after:

Update 7PM

Another update – the nurse just called.  They have done the incision and dissected out the heart (sounds bad).  She is on the heart-lung bypass machine now.  They have started the repair.  So far, so good.

Update 6PM

The nurse just called with an update.  She is totally set up with all her lines and stuff.  She is doing fine   They are draping her and putting a probe down.  It will sit in her esophagus so they can get images from under her heart.

Thank you everyone for your support.  Your prayers mean so much.  I appreciate the comments that you leave.  Thank you for fasting Cyndi.  Thank you for taking care of the kids Marissa.  Thank you Debbie for coming up here and being with us and bringing dinner to Jason. 

I am a mess.  I am pacing (when I’m not blogging).  I do believe in the capacity of these doctors and nurses.  I am confident in their abilities.  It’s just that they are operating on my baby.  My sweet, strong, beautiful, very stubborn baby.  :)  I love you Arabella.

16:14 What the clock showed as they took her back

They just took her back. That was very hard. They promised they would take care of her. We had a little talk. Be strong little one.

It’ll be 9 or 10 before the surgery is done.

I’ll update as we learn more.

Waiting and Waiting

We are now in the “holding area” for surgery.  The surgery before ours is going a little long, so they said we should go back in about another hour.  So around 3 o’clock.  Anyone have some Pepcid?

We are “Go” for surgery!

This has been a busy room.  I have packed and Jason has stowed all of our belongings in our car.  I have been to meet with the financial people this morning.  We have meet Dr.  Salazaar.  He is quite confident that everything will go well.  We have seen two nurses from the various teams.  Surgery has been moved up to noon.  I’ll update as we learn new things.  We will no longer have cell phone access in the CVICU.  The ph probe is out.