Sisters

The girls got to visit Bella for just a moment last night. Very special.

Friday

• current weight 3.95 kg or 8.7 lb  
• o2 levels same as yesterday

Jason and I will trade positions tonight.  He will move into the hospital and I will move back home.  Sunday night we’ll trade again.

The doctors have rounded.  They are talking about scheduling again, but they have said that for the past 3 mornings.  Reading between the lines I think it’s convincing the surgeons and finding a time slot.  So we’ll see.  They are ordering a CBC  and a chest x-ray – just to make sure she is totally clear of any and every thing.  The cardiologist also wants to do a Ph probe to determine once and for all if she has reflux.  We’ll have to stop her reflux medication before that test.  I think that’s it – they don’t want her to go home because she “decomposes so quickly.”  I loved the imagery in that one!  :(

She is sweating and choking, but otherwise doing pretty well.  They do want her to be able to try at least one bottle a day so she doesn’t lose her ability to suck.  Have no fear – binky woman loves to suck.  So we’ll see how that goes.

The nurses changed out Bella’s NG tube and nasal canula.  She wasn’t pleased, but it’s done now and she is sleeping again.

About 4PM I noticed that Bella was pulling harder to breathe.  So I notified the nurse, who got the resident involved, who got the fellow involved.  Her IOs are off (that means she has taken in more than she has ….how to put this delicately……put out. ) That usually means, for Bella, that it’s collecting in her lungs or around them.   So we added a diuretic (not edecrin, Lynn).  At 7PM I have to say I think we caught it.  She has had an output of 56 cc’s since 4PM and her respiration is down to an acceptable level again.  Yeah Bella!

Date Night

The other night I got an earful from one of the night nurses.  She is a divorced mother of five.  We had talked about the kids – I always talk about my kids.  Then she asked about my husband – well, I see him in passing as we change shifts at the hospital.  So I got a lecture about keeping a marriage alive.  Something she said must have gotten through to me because I asked Jason out on a date to an exclusive location with fabulous entertainment and company.

You guessed it!  He came to the fabulous suite of TCH, West Tower, 15th floor, room 5.  We enjoyed take out Chinese food.  We had the complete view of Fannin Street from our window.  We watched TV.  But we were together.  Yes, we did some strategic planning for our family, but mostly we ate, talked politics, and enjoyed seeing each other again.  I have to admit that my heart skipped a beat when he walked into the room – was it love or just a familiar and safe face?  Maybe both.  :) 

In case you are curious, our fortune cookie said, “Your present plans are going to succeed.”

I’m sure it was a long night for him.  He still had to go to the grocery store after visiting with me last night.  Thanks Jas – I love you!  And thank you Marissa for staying with the kids!  I appreciate it!

Fun Body Parts

Since we are just sitting here waiting for surgery at this point, I have had some fun recording the little things I love about Bella’s body.  Funny how this is OK to do to a baby, but not anyone older. 

It’s kinda hard to see because I don’t have the best camera, but she has a tiny pigment mark  and a huge dimple in her knee.  Who said she was failure to thrive? :)

 

 

I’m hoping to get a better picture of this one.  Obviously, this is her chest.  Right down her midline, there is less pigment.  To me it looks like a flower that a child draws with a stem, (starts at her belly button)  leaf on the left side and the blossom on top.  Just fun!  Who drew on my baby?

 

 

I have posted her toes before – but I think they are adorable!

 

 

 

Her beautiful eyes – they are interesting to watch.  The blue and the brown battle it out daily.  I think they might be hazel with a blue rim when it’s all said and done.

 

 

Bella holding my finger – my favorite.

OT

First off, some housekeeping.  My Mom says that I have been hanging out with too many doctors and nurses lately and my blogging is reflecting that.  She will be reading along and then, WHAT?  What do those letters mean?  So, if I slip into medical-ese, please post it in comments and I will try to clarify.  :)

On to OT.  The doctors have ordered that the OT (Occupational Therapist) come round and look at Miss Bella.  It’s really quite pointless.  She sucks beautifully – her system just can’t tolerate breathing, circulating blood, and digesting if we add suck/swallow/breathe to the mix.  That’s why she has the NG tube and continuous feeds.  But she comes round and we talk.  She is delightful.  Becca had questions on nursing versus OT vs COTA vs special ed teacher when she grows up.  So the OT and I talked all about it.  I got the skinny on the advantages and disadvantages to nursing vs OT vs COTA.  Hospital vs non-hospital.  Pediatrics vs non-pediatrics.  Good stuff.  Remind me to actually tell YOU, Becca!

Today I showed the OT our serious head lag (a head lag is when you pull the baby arms forward and the head falls backwards  - not enough strength in the neck).  I know there’s not much we can do right now.  Tummy time is not an option.  Nor will it be for at least six weeks following surgery (think about the broken sternum – we don’t want her damaging that!).  So, she’ll be pretty delayed in that area.

After she left I thought back to what Joy and Miss Carolyn (our OT at home) worked on when she first came home – besides tummy time (which she HATED by the way).  We worked on tracking an object and then getting her to reach for objects.  I used the fun toy that Emily brought us and she tracks wonderfully!!!  I think I knew that because she is such a social little butterfly.  She always looks people right in the eye when they come and examine her – she may not like what they are doing, but she always looks.  We worked on reaching some today.  I would hold the toy right by her hand so any motion would trigger a response.  Very fun! See how intense she is?  :)

Random Pictures

Here are some random pictures of Miss Bella.

This is what Arabella’s PIC line looks like under the bandage.  It looks like a small white plastic airplane that has been sewn into her skin – three stitches to be exact and obviously the non-dissolving kind.   A tube goes about 11 cm’s from this point to right above her heart.

Every Wednesday the dressing gets changed.  They DON’T want the PIC line to get infected.  I love the PIC line!  Bella has labs every morning and has many IV medications.  Before the PIC line,  they came in every morning and cut her heel and squeezed blood drop by drop out of her.  At this point, you can’t even touch her feet without her getting upset.  Now, they draw it from the PIC line and there is NO pain at all!  With her IV meds, she obviously had to have an IV – but after about 2 days, the IV would go bad and they would have to restick her.  She is a terrible stick.  It took forever and involved lots of crying.  Now – no more of that!  What a blessing!  This is Arabella after her dressing had been changed.  She is now a princess!

More hair shots: before and after

 

Then this sweet picture.  She was swaddled up and snuggled close.  Her eyes look so happy.  I love this picture!

Bella at 4:30 AM – no flash because I didn’t want to encourage her being awake anyway.  Sleep is overrated, right?

It Could Be Worse

current weight 3.955 kg or 8.7 lb.  We continue on 1/8 a liter of O2 with sats in the 80’s, occasionally high 70’s, occasionally low 90’s.

The doctor has been here.  He and I are delighted that Bella is doing well.  He is going to stop the antibiotics – yeah.  They are IV infusions that take over an hour – which is a pain when she wants to be held all the time.  And he said they are going to talk to the surgeons again – I did cover her ears, lest she hear the s-word and decide to get sick again!

I have had a lot of time to think and ponder and then try to stop thinking and pondering.  Arabella’s surgery itself isn’t going to be that bad – other than they will cut her chest open, break her sternum, slice open her heart and very delicately repair holes that are mm’s wide, then put everything back together.  Compared to other heart surgeries, it could be so much worse.  I am confidant in the surgeons and their ability to complete this procedure.  I have TOTAL faith in the anesthesiologists here.  I love them.  Two times now Arabella has been put under and brought back to me.  They are competent and compassionate.  My first hug here was from a pediatric anesthesiologist.  I have faith in the perfusionists.  These are the ladies that will keep the heart/lung machine working for our baby during her surgery.  I have faith in the CVICU – where Bella will recover.  I think they will help our girl the very best they can.  And it is here in the CVICU that I think Bella has the highest chance of dying.  Don’t get me wrong – I am not sending my daughter off to surgery to die.  But there is a chance – there is always a chance.  I think Bella has good odds.  So do the doctors and surgeons otherwise we wouldn’t be doing this.

I have hesitated to post about it because so many people read this blog.  You don’t need to worry.  Her odds are good.  I am not upset or crying.  I am being realistic.  It is better to be prepared for all possibilities and accept them than to be blindsided and swept away.

Anyway, the point to my ramblings is TCH is a pretty sobering place.  There are very ill children here.  A patient died in the PICU when we were down there.  The ones that kill me are the cancer patients.  I ran into a mom whose son has DS and leukemia.  His particular treatment plan is three years long – makes my 2 month hospital stay look like one second.  I have made online friends whose babies are fighting cancer and been amazed at what their families are going through.   Then I heard today that a friend’s daughter is here.  Baby E. has cancer – just diagnosed.   My prayers are with you and your family and all that lies ahead!   Instead of just facing a small chance of death we could be fighting for Bella’s very life with horrible, painful chemicals.  Things could be worse.

So just a weird little blog entry.  Bella and I are fine.  They are talking about the s-word again.  Hopefully we’ll start toward a plan (again). 

Love and hope to all!

It is Wednesday Again

current weight 3.95 kg or 8.7 lbs.

Bella slept last night (the last 2 nights were a very different story)!  I would scream it from the top of the building if I could – she slept! she slept! (selfishly, I slept too!)  Her temp is down to 100 and she is SLEEPING again.  Yeah!  Yeah!  Yeah!  I am grateful that little immune system, though impaired, is working and fighting that virus.  Such a good thing for this mama to see her baby much more comfortable.

She is safely swaddled up and sleeping in my arms – exactly where she wants to be.

Her doctor came around this morning.  The rapid viral test came back negative.  Hmm……  We joked that she just doesn’t want to have surgery.  They schedule her, she gets sick.  Twice now.  Who can blame her?  It is going to be……..looking for a word………….huge.  Don’t ya love my extensive vocabulary?

In case you want to know, Sammi has decided on a name for the virus.  It is the “Screaming Fever.”  I think it’s an excellent and accurate term.

I really like today’s nurse.  She is the clone of Laura M. (one of the wonderful young women I work with at church) .  They share the same name, mannerisms, and calm presence.  It’s reassuring because I trust and love Laura M. so much that it unconsciously extends to nurse Laura.  It’s comforting.

Bella is back on oxygen, but only an 1/8 of a liter.  She just needs a little support.

The doctors have made rounds.  She is still pulling some, so we are getting an extra dose of lasix today.  And, assuming nothing starts growing on her cultures from a few days ago, they will see about scheduling again.  Earliest, beginning of next week.  We’ll see.  We can make all the plans in the world, but we all know this will go according to Arabella’s schedule and no one else’s!  :)

Bella’s Mascot

When we adopted Bella, my friend Krystal asked me what animal would represent Bella.  Joy is my ladybug.  Actually I call all of my girls my lady bugs, but Joy’s room is a ladybug room.  It’s so fun.  My Mom made her a ladybug quilt.  So what is Bella?  Krystal, Jessi, and I all came up with the same answer – a butterfly. 

Bella was a cute caterpillar, now during this hospital stay and her repair she is in her chrysalis (you should hear Jessi say it – too cute!) and once repaired and home, she will be transformed into a beautiful butterfly!

So once I get home and ready to decorate, I need to find some butterflies for the walls and some to add to the curtains.  They will have to work with red and black.  We’ll figure it out.  And hopefully we can find a good quilt or Mama will make Bella a butterfly quilt .  Nothing like begging, huh?!  :).

But keeping all that in mind, Joy – my lady bug, and Bella – my butterfly, imagine my delight when I saw this picture outside Bella’s new room.   I was feeling a little upset that we were going to be totally in the isolation room – not just everyone covered, gloved, and masked, but now all the way in isolation.  I was having bad memories of laying in St. Luke’s for 5 weeks waiting for Jessi to grow inside of me.  So this was my “tender mercy” from my loving Father in Heaven.  A picture of my girls.  :)

But Mama, You Said It Was Going To Be Good News………..

This was Sammi’s reaction to Bella’s latest development.

Let’s rewind a little.  On Sunday, I promised them that we would have good news on Monday.  Either they would schedule surgery and then this would all end or they would decide she needed to wait and we would go home.  Instead, Bella got sick, so neither happened.  Consequently, Sam was disappointed and I was made a liar.  I am sorry babe.

The kids are troopers.  I have been out of commission for 5 weeks total.  And they are keepin’ on.  Rachel White has been a god send!  They do their school in the morning and play in the afternoon.   She has taken them on bike rides and to the library.  Joy loves her.  Thank you Rachel!  I miss my kids!  Badly.  Terribly.  Horribly.  Crying.

Today has been a blessing, though.  My good friend, Krystal, called me.  We talk about Bella.  She offers help.  We talk about church and responsibilities there.  I love it.

My good friend, Lynn, called me.  My good friend Lynn is dying, so she doesn’t waste words.  She says what she means and means what she says.  She reminded me that Heavenly Father is personally aware of everything we are going through right now.  She reassured me that angels are guarding my children right now.  She told me that we will get through this –they will not be permanently scarred.  And when things are terrible, to remember that Christ descended below it all.  He paid for our sins, but He also knows how we feel.  When things are bad, reach out to him.  She also reminded me that my girls are growing in Christ right now.  She used Sammi as an example.  Sammi stood and bore her testimony in Sacrament Meeting (our main meeting at Church) about Arabella, about prayer and fasting, and about priesthood blessings.

Then my new friend, Emily Kikuchi, fellow heart Mama, had a cardiology appointment today and brought me up a package.  shampoo!  conditioner!  food!  yummy!  cute things for Bella!  I am living off the things my Mom bought for me and now the things Emily supplemented me with.  Thank you!

I am grateful for friends.  I am grateful that our Father in Heaven can work through others to lift and support us.  My gratitude has no words.  Thank you ladies!

I gave Bella a spit bath today.  She is still at 103 with medication, so we were hoping besides being clean, the bath would help her temp.  I am sorry, but I had to take that picture!  :)  It’s a mother’s prerogative!  :)  Not to worry, I did her hair after the picture.  :)

Because she doesn’t feel well, Bella wants to be with me, and be held by me, and to whine.  Here she is, that khaki thing is my leg.  Not to worry, I have added a pillow under her since the picture was taken to keep her head elevated.

For Lynn and Gwynn

Edecrin – 4 mg per time

administrated at 5 pm, 1 am, and 9am

current weight 8.5 lb

To My Friend Claudia

The night shift arranged her bed just as you described.

A Message for Michele and William

Michele and William,

Everyone tells me that they love the name Arabella. One nurse told me that if she has a girl, she will name her Arabella. Everyone also tells me how cute she is. I answer both of these comments with a "thank you." But since I had nothing to do with how cute she is or how adorable her name is, I thought I would pass along the compliments. :)

Good News and Bad News

Good news - Arabella was presented today. Everyone agrees she needs surgery and soon.

Bad news - Arabella has a fever. 102.3. She didn't sleep all night. She hasn't slept all day. She is pretty miserable. Here CBC came back with elevated white blood cells. Her urinalysis came back negative for a UTI. It'll be a few days till they can tell me exactly what she has. This of course stops the surgery. The team agreed she can't go home till after her surgery. So I asked about duration. (Actually, I told them I was going to sell my house and move in with my 5 other children!) She gets a virus, she gets healthy, she gets something else. So is this an "oh my gosh, she's healthy, let's take her now!" situation or a 4-6 week delay situation? The cardiologist said it's the former (wonderful!), but he told me to remember that there were 15 kids presented today. She continues to be NPO. They are also starting a new diuretic that should help with her electrolytes. They ordered a chest x-ray.

So - please pray that our baby gets healthy. Even without the surgery looming, she is pretty miserable. Asia, I think she has what Aurora had. Her fever ranges from 101 to 103 and she is miserable. Now I'm not a doctor, just a Mama with experience.

We have been moved. Masks, gloves, and plastic coverings evidentally weren't sufficient. So they decided to move us. We are in a corner room with an ante-chamber. They keep calling it isolation - and I feel isolated.

The Guard Has Changed

Jason is back home with the kids and I am back at the hospital with Bella.

Her respiration rate is in the 80s or 90s and she keeps dipping into the 70s for oxygen saturation. She looks worn out. She is paler than when I was here on Friday. She continues to be NPO for the night.

She will be receiving more edecrin at 9PM to hopefully pull more fluid off of her lungs.

The cardiologist just left (9PM). He came to make sure he had the whole picture of Arabella because he will be presenting to the surgeons tomorrow morning. We reviewed her NICU stay at Saddleback, her time at home, and then her time here. I was able to get some questions answered. I have been puzzled because her anatomy and her current medical condition don't match. She is behaving like she has a massive VSD, when in fact she actually has quite a small VSD. I was able to show him my drawings of the heart and he showed me how her heart is actually formed - where each of her holes are. People keep telling me she is a mystery. We talked about her PVR and her PHT. We talked about how difficult her recovery is actually going to be. It's very scary. He is pretty sure that she is aspirating. He thinks that is the choking that I keep asking people about and no one can give me an answer for. He said that the ENT felt that she was aspirating - funny how the ENT didn't mention that to me. He is concerned about her feedings. They may stop all feedings by mouth and just do continuous feedings through the NG tube, rather than the bolus every three hours - less likely to aspirate that way. He feels these periodic drops in O2 saturation when she is just laying there asleep are aspirations.

They are very concerned about taking her to the OR. Her recovery is going to be so rocky, they don't want her dealing with anything else at the moment. On the other hand, they don't want to wait so long that the PVR becomes permanent. He said with where she is medically, he doesn't think they'll send her home before the surgery. A team of people - cardiologists, surgeons, nurses, anesthesiologists - a large group will be meeting tomorrow to decide when is the best time to operate on Arabella. I told him it sounded worse than rounds. He smiled and said, yes, a lot worse. He said it's pretty intense. Today my family and I fasted for sweet baby Arabella. I was praying for Arabella, but also for the surgeons that they would know when the right time for surgery would be for her. She has one good day, then she dips again. We play musical floors. I want what's best for her. I worry about delaying things too long. She seems so weak and fighting so hard. I pray they will make the best decision possible for our sweet girl.

A nurse just came in and Bella gets no food at 9PM - she is breathing too fast and they are afraid of aspiration. I hope she can sleep through it. :)

2 Weeks at TCH

It has now been two weeks since we came to Texas Children's Hospital.  We came in because she was breathing fast,  looked pale, and was more lethargic .  We started on the 15th floor and soon made our way down to the PICU.  A couple of days ago we made it back to the 15th floor.  There is less c0verage on 15 but it generally means the child is doing better.

Well Miss Bella is charting her own course through the system here.  The doctors have plans and her parents have plans but Bella seems to want to chart her own course.

Miss Bella is breathing faster again,  not nearly as fast as two weeks ago but fast enough that they have done another chest x-ray.  We should hear back soon on that and then we will know if they will do some extra diuretics or if she may have to go back down to the PICU so she can have more attention from the medical staff here.

Bella, Bella, Bella!

You need to get better so y0u can have your surgery and get healthy to stay out of these Hospitals.

Update:

They are going to give her a new diuretic.  it is called Edecrin.  It is supposed to be a little more powerful.  The doctor says that she seems to not respond real well to diuretics.   That makes sense to me as she was on diuretics when at home and they just were not working real well for her.

Miss Bella is also going back to ng tube feedings as she has been regurgitating a couple of times today.

On a positive note he was comparing the chest x-ray from today with one from the 16th of Feb.  The x-ray on the 16th showed a spot of pneumonia in the right lung.  The x-ray from today shows that has cleared.  Yay, Bella!

We still plan to have the surgical team start working on a plan starting tomorrow and we will see where she goes from there.

Bella’s View of the Medical Center in Houston

 

here are two panoramas from Bella’s room.

sunrise:

daytime:

Every doctor has an opinion

Jason is on hospital duty this weekend. His observations:

I have found through many years of experience with babies in the hospital that every doctor has an opinion on what to do for your baby. While the general consensus of their opinions are the same the specifics always seem different and in motion.

All week I have heard about how Bella will have to wait 4 to 6 weeks for surgery. Today the doctor is more noncommittal. He said it is up to the surgical team. it could be next week or it may be weeks. He did feel they will move quickly though once the virus has resolved. We did get rid of one IV line and may get rid of the NG tube tomorrow. we will see how she does on her feedings tonight

Friday

The cardiologist has ordered another echo.  Her right ventricle is enlarged and the left ventricle is kinda squashed.  They felt this was different from her echos in California.  So they want to do another one and see if that was because she was sick or if that is where she is now.

Last night Bella had to be put back on flow.  She is not on oxygen.  She is on room air, but it is pushed through her nasal cannula – very similar to Jason’s c-pap machine.  This keeps her at an acceptable level of saturation.  They have asked an ENT to come and look and make sure there are no obstructions in her airway just as a precaution.

She will be presented to the surgeons on Monday.  Then hopefully she will be assigned to a surgeon and get a surgical date.

They really want to get an understanding of her pulmonary hypertension.  It will make her recovery so much harder.  So they want to understand it.  The exact word they are using to describe her predicted recovery is “rocky.”  Encouraging, huh?

The ENT has come and gone.  She is not obstructed.  She does have some swelling that is indicative of reflux.  So he’s recommending some reflux medication.

And on a selfish note, a coffee cart came down the hall.  I got a sandwich – yeah!

Arabella has had a busy hour.  She had an evaluation with the OT as she ate all 60 cc’s of her dinner.  The OT left  and the mobile echo came to see us.  They came to us because we are currently quarantined with droplet and coverlet protection.  That is nicer than having to go to them.  As soon as the Radiology tech was set up and ready to go, Bella decided to choke and vomit.  I cleaned all that up and we had our echo.  Results as I get them…….

And for those interested.  Arabella is 3 months 2 weeks old today and weighs 8.5 pounds!

Another Day, Another Doctor

We are now on the 15th floor which means I now live in room 19 of the West Tower at Texas Children’s Hospital.  It’s set up so parents have to stay with their children.

Being on a new floor, we now have a new set of doctors.  I love that Texas Children’s Hospital is able to help Arabella.  What I don’t like is that TCH is a teaching hospital which means I have to deal with many different doctors every day.  Oh well, so long as we get her well.

The new cardiologist is starting Arabella on Viagra.  Remember that the main reason Viagra is marketed to the world is actually just a side effect of the real reason it was created for.  It actually reduces the pressures in the pulmonary arteries – perfect for our princess.  This should help her overall pulmonary function which will hopefully get us off of the oxygen!  I have wondered why she wasn’t on any meds before, but now she will be.

The cardiologist said she is going to talk to scheduling about re-scheduling Miss Bella’s surgery.  She is hoping it can be before the 4 to 6 weeks that the other cardiologist told me.  I expressed my concerns about taking her home and keeping her healthy for that period of time – not that I want to stay here!  Another one of the doctors, a cardiologist fellow (maybe?), said that keeping her here in a hospital environment isn’t necessarily good for protecting her from viruses either.  I agree.  So, we’ll see what the surgeons say.  The attending said that since this is an elective surgery (!!! elective to who?) they want her as healthy as possible.  I have had time to think through the “elective surgery” comment.  It is elective in that she isn’t going in as an emergency, but we are choosing when to have this done. 

They have stopped her TPN.  She is going to be able to start nippling her feeds today.  They want her to take 45 to 75 cc’s.  Anything she doesn’t take in 15 minutes will be put down her NG tube.  When she was eating, we were lucky to get 60 cc’s into her.  We’ll see how she does.  She has wanted to eat for a couple of days now, so I’m hopeful she’ll take to it again.

There is nothing as constant as change!  :)  We are stopping her Viagra.  They looked at it and decided that she is over circulating enough, they don’t need to add insult to injury.

In other news, she ate 55 cc’s in 10 minutes!  And no vomiting!  Good news!

2nd feeding – 40, 5 down the tube.

They just turned off her oxygen.  So far, so good.

3rd feeding – 35, 10 down the tube.  She was tired and gasping.

Nothing is Easy for Arabella

Poor Arabella.  This morning we went and got her PIC line.  They used anesthesia, but she didn’t need the breathing tube – I am so grateful!

The PIC line is a long term IV.  Bella is a hard stick and loses her IVs every couple of days.  So this is a better solution for her.  You can read more about one here.

The team dropped us off and headed back off to the 1st floor to their next project.  The nurse came in to look at the line and it wouldn’t flush.  It was already blocked.  Nothing is easy for this poor kid!  They called them back.  We’ll see what happens.

They removed some of the dressing around the line and it flushed, so maybe it was just kinked or something.

Now on to the rest of the day….

We are leaving the ICU.  Bella is doing so much better.  But where to put her?  They would like a step down from ICU, but not all the way to a floor bed.  So we’ll see what’s available.  Turns out not much is available.  15th floor’s step down is full.  The ICU is almost full.  We’ll see where we end up.  Looks like we are going to the 7th floor.  Change of plans – it’s up to 15.

I just spoke with the cardiologist.  The surgery has been delayed four to six weeks – ugh.  All because of a virus.  Amazing.  He explained that the heart-lung bypass machine tends to suppress the immune system.  So if she had something floating around in there, life could be very bad.  So we wait.  Of course, my next question is – where do we wait?  It looks like we are working on heading home.  He said they have sent kids home on oxygen and ng tubes before, but they don’t like to.  We’ll see what the next couple of days bring.

Tuesday

Arabella is doing well.  She still has ick that she is working on getting out of her chest, but she is comfortable and alert.  She is breathing well with her nasal canula.  They are re-starting her on formula.  She will receive 5 cc’s an hour (30 cc’s in an ounce), so not a lot.  But we’ll see if she can tolerate it without vomiting. 

I keep hearing “stable” and “15th floor” being tossed around.  So we’ll see what happens.  Arabella likes to do things at her own pace.  One cardiologist said we need to look at re-scheduling, don’t know when that would happen.  She is supposed to get a PIC line today, but we have to wait on CV (cardio-vascular) anesthesia for that.  Pretty much it’s a waiting game at this point.

Beautiful Bella

Monday

Last night Jason and Brother McIntosh were able to come and give Arabella a priesthood blessing. So this morning when I arrived, I was pleased to see her respiration rate is down, not normal, but anything is better than 80 to 100 of yesterday.

So what's the plan now? I don't know. It all depends on Bella. She is here in the ICU for another day or two. Then they'll see how she does. She is about to start TPN - IV fluids that take care of all of her nutritional needs. She is going to get a PIC line probably tomorrow - that is a more permanent IV. She is still on the nasal cappula. She isn't receiving any oxygen at this point, just room air, but she needs it pushed into her airways. She is fighting strep, staph, and some virus in the flu family. Her surgery is delayed until she is better. She could be here till then or she could get better, go home, and then come back for her surgery. She is more alert and not too happy that she can't eat, but she tends to vomit whenever she nipple feeds. She is doing better, but she is delicate. Time will tell with Miss Bella.

Sunday

A setback.  In Bella’s secretions from her tube, they found Group A strep, but they have just come back and said she also had a virus growing in there.  So…her surgery is being postponed.  I don’t know  to when.  She has to get better.  She has to be strong before that massive undertaking.

Today her breathing is more labored, and she continues to cough a horrible croupy cough.  The cough is good.  It means she is moving stuff out.  But I don’t like her breathing.

Jason keeps telling me the good news is that she is where she needs to be.  They will take the best care possible of her here.  Yesterday I had finally gotten consistent child care set up for the girls, but it unfortunately had an end date of March 1st.  We have a friend that is an RN and is between contracts, so this worked out perfectly.  She is going to watch the kids.  The girls, especially Joy, will have a consistent routine and face.  I figured that was long enough – it included a 12 day recovery period.  That was when she was scheduled for Wednesday.   Everything will work out somehow.  They are talking about a couple of week delay.  Sigh.  Jason sent this to me:

We love you Bella.  Get better soon!

Valentines for Arabella

Jason is at the hospital today, while I spend time with the other girls before the big day.

Jason writes:

Well Bella has received a few valentines from her sisters, so we are proudly displaying them for her to look at.

She looks good today and is fairly awake. She is still taking her Augmenten for the strep and is fed through the ng tube for all current feedings. Of course she gets all her diaretics and digoxin. It looks like right now they are making sure her Oxygen saturation and her respiratory rate are the things being most watched as we wait for the surgery that is tentatively scheduled for Wednesday.

Be Strong Bella!

We Love Ya.

(oh and have a great Valentines Day)

Friday

Friday - Today's goals: extubate and schedule surgery The results came back from the yuck they were suctioning out of her breathing tube. There are no viral indicators or RSV, but there is something growing down there, group A Strep. They are going to start her on augmentin (love it when I know a drug they are talking about).



Today's Outcomes: extubated and scheduled


She is now extubated. She is back on the nasal something. It looks like a c-pap. She is breathing a little rapidly(her norm), but staying at good saturation levels. She is scheduled tentatively for Wednesday. The best and the worst news - our daughter's heart will be repaired! Our daughter will undergo major open heart surgery and she will have to fight (again) to heal. But then, hopefully, she'll go home. She'll get to really meet her family and they can really meet her. And she can learn what life is like OUTSIDE of the hospital.

In other news, the kidney doctor came by. I learned that she'll be on dialysis for a couple days post-op. It is done differently than for adults. There are going to be so many tubes in this sweet girl. I was able to show them the discharge summary about her kidneys while in the NICU. So now they know and we'll probably do a renal ultrasound pretty soon. Good, because we were supposed to follow that clinically, but it hasn't been a priority.

Cardiologist's Visit

Just talked with the cardiologist. We went over the cath results again - the high pressures in the lungs and pulmonary arteries and the overcirculation of blood. She is in a higher rate of heart failure than she should be. Her hypertension is reactive which means it responded to oxygen and nitrix oxide. (I'm sure I spelled that wrong)

So, surgery next week (assuming that she's healthy). With the cath, there is increased fluids and pressure, so they want that to settle down. They also want her to get off the ventilator if possible. (me too!) They want her as healthy and strong as possible before surgery. The cardiologist is going to sit down with the surgeons and scheduling tomorrow. And we'll see when. Not Monday - it's Asia's birthday (and President's Day), but some other day next week. I asked and she confirmed that the recovery will not be 5-7 days. It will probably be longer. Her first day or two will really let us know what to expect.

Long term, since hers is a reactive pulmonary hypertension coupled with lung disease from the ventilators, her lungs should improve over time. We will still have to be cautious about viruses, particularly RSV. I am concerned about the school environment, but we'll cross that bridge when we get to it. I want her to go to school if at all possible.

Thursday - Bella continues on the ventilator. She has some edema for which she is receiving steriods. They tested her thyroid and she's a little low, so they are starting her on thyroid medication. They need that at a good level for her surgery. She has a fever 100.6. (!!) In good news, the surgeons did decide to operate. I told the doctor I was going to kiss him. He said he would settle for a handshake. :) They still have to schedule it, but it looks like next week. I am so glad. I hate watching her like this. BUT..... Everyone keeps trying to tell me that her recovery may be a little bit rockier and harder than the average AV Canal DS baby. She has so much else going on right now. She is a weak, sick little girl. Update on her fever. They are checking to see what is causing the fever - they will check again for RSV and flu, as well as culture the secretions they are pulling out of her breathing tube. If she is sick, there is no surgery.

More Info on the Hospital Stay Thus Far

Oh Bella! Where to begin? On Friday I took Becca to the doctor. While I was there I asked him at what point should I call cardiology about Arabella's respiration rate? She had been breathing faster and harder. I think it's because they took her off the aldactazide. He said if she was constantly 80 to give them a call. Well, Sunday (of course a weekend) came and her respiration rate was 80 at resting and higher with any activity. So we went over to Dr. Geddie's house. He is our friend, but also a neonatologist. He looked and listened, then called his friend, a pediatric cardiologist. They decided she needed to come down to the ER of Texas Children's Hospital.

We went home and called my sister, Asia. She graciously dropped everything and ran over. Thank you so much Asia. We really appreciate it.

We drove to Texas Children's - what a long drive when you are scared. By the time we made it into triage her O2 saturation was at 60%. We immediately were given a room. She was given oxygen right away. They did a chest x-ray and drew tons of blood. They put 2 IVs in. They gave her lots of good lasix. Color and life flowed back in and beautiful Bella came back to us. They admitted us to the 15th floor - cardiology.

The next day she had a echocardiogram and continued to do well. She only had one blue spell. I was hopeful we could go home.

Tuesday after asserting the fact that I really wanted to go home and couldn't she just go home on oxygen, Bella decided to show me that she wasn't quite ready to leave the hospital setting. She proceeded to go back into respiratory distress, dispite her oxygen and all her meds. Her altactazide was re-started on Tuesday as well. She continued her downward spiral to the point where she couldn't tolerate any feeds (her O2 dropped to 69 even on oxygen and it took her almost an hour to recover). The doctors decided she needed more care and moved us down to ICU. Jason and Becca were able to come see me - which was WONDERFUL! We got down to ICU and realized that there was no where for me to stay overnight. There is one chair in the room. It was suggested that I go home and sleep (something I hadn't done since Saturday). The nurse was very attentive so I decided to go home for the night. When I called in at 2AM, Bella was doing well.

Wednesday - Lizzy's 6th birthday. I had to see Lizzy. Guilt either way - go see Arabella or go see Lizzy. I drove up to my Mom's (where Lizzy was staying) and was able to spend a little time with the kids and open presents with Lizzy. (Her Daddy is going to get her and take her to dinner tonight.) This morning they were able to work Arabella into the schedule to have a cath done. This measured the pressures in her heart, lungs, and the blood vessels to her lungs.  You can read more about it here.   They wanted to have this done before her heart surgery. Because her lungs are in such bad shape, they wanted to know as much as they could, so they would be prepared. As expected she is over-circulating her blood and her pressures are high. The cardiologists will take those results to the surgeons. I personally am hoping for an earlier surgery date. She is currently intubated and sedated. Poor, sweet baby. She has to go through so much.

Oh Bella!

Just a quick note.  Arabella was admitted to the hospital on Sunday.  She is currently in ICU.  She was on oxygen and unable to tolerate her feeds.  When her O2 is in a good range, she seems quite comfortable in the hospital.  I realized she is more used to being in the hospital than in a home. (85 days in CA + 4 days here compared to 11 days at home)  And she is safer for right now in the hospital.  She will look OK, then drop very quickly.

Please pray for her and our family.

We love you Arabella!

Joy loves her little sister!  The girls were talking to Arabella while I prepared her bottle – too cute to miss.

Thanks! (A Million Times)

I need to thank a few wonderful people!  Krystal Brown, Kathy Patty, and Kristin Baker have brought us dinner these last four nights (thanks to Kathy – twice!).  I become the walking dead at 6PM, so dinner has been so appreciated!  Truly – thank you!

Krystal and Rachel White have watched my kids while I have gone to long doctor’s appointments.  My thanks ladies - words cannot express.

And a wonderful nurse and doctor looked up for me how long Arabella was on the ventilator – 32 long days and nights.  Thank you, that is invaluable knowledge.

How do people have babies without support?  I am grateful I don’t know.  :)

Cardiology and Life

The day for the all important Cardiology appointment finally came yesterday.  He is thinking to do the repair when she is about 4 months old (she’s 3 months old on Friday!).  Her weight isn’t as important as her age he said.  That is consistent with what the Cardiologist said in California, so I was comfortable with that.  They did 2 chest x-rays and an ECG (or EKG – I can’t ever keep those two straight).  Jason had dropped off all of her previous echoes and x-rays on Monday.  Her x-rays looked good – kinda.  Her heart is enlarged, but not too bad yet.  There is no more fluid in her chest area.  But her lungs look yucky – even I could see that.  He asked how long she had been on the ventilator.  I don’t know.  I hate that.  I wish I did.  I have been going through her medical record – all 3546 pages of it, but it’s slow going when you have to look up every other word on Google!  I’ll just have to keep at it so I can answer these kind of questions.  The Cardiologist wasn’t someone I would invite over to dinner, but he did seem very knowledgeable.  He and his team come highly recommended, so I’ll put aside the personality and pray that he can help heal our sweet girl.  He took her off one of her diuretics and sodium.  We are going to test her electrolytes on Monday to make sure all is well there.  We go back in two weeks.  They will do a sedated echo.  We will talk with a nutritionist.  He will talk about Bella during cardiology rounds (where they all get together and discuss the patients).  They said the next appointment should be 4 to 5 hours long. Sigh.

  I decided to play with Bella’s hair and give her a really good bath this morning.  She is such a cute little baby.  She continues her choking/vomiting episodes.  It amazed me today.  It was like I was watching myself as I had this experience – Bella choked, then vomited.  We had to suction out her nose, and clean out her mouth.  She got a little dusty.  I worked with her till her color came back.  Then I finished what I was doing with Joy, then started a load of wash.  Thank goodness for the training from the nurses – no panic, just taking care of my sweet baby.  This is a picture of sweet Bella a little after this morning’s choking fit.  She’s a bit pale and she’s exhausted, but she is beautiful and we love her.

To quote a book I was reading in California, “Philippines 4:13, for goodness sakes!”

Meeting my other Grandma

 

Grandma Ball, Nathan, and Mandy were finally feeling well enough to visit and meet Miss Arabella.

 

 

 

Arabella hanging out in her swing.

Lovely Video

If you follow both Arabella and Joy’s blogs, this is a double post.

Enjoy!  God Doesn’t Make Mistakes.  I love my two beautiful girls who have been blessed with a little something extra! ;)

The Turpin Pharmacy

Thought ya might want to see what I prepare every evening – I don’t want to make any mistakes at 3AM!