2 lbs 12 ozs tonight!

Whew hew. Another good day. Weight is up. Unfortunate side is only 3 cc of fluid from the shunt/reservoir, but she tolerated the two pokes well. She's poohing & peeing.
She's beautiful. What else can we say but a big thanks to all for support & prayers. We are still batting ideas around on what to do with the basement after finding some mold growing from previous owners pool bursting in backyard several years ago.

We've included the picture of her with the darling sombrero that one of Bella's nurses brought back as a souvenir from Mexico. Mi hijita es muy bella tal como su padre es muy guapo!

Bella update

Up to 2 lbs 10 ozs! Yay. Keep going Bella. 3 days in a row of consistent weight gain!

On a different note Neonatologists are now going to have to "tap" the shunt/reservoir each day. The pocket area where the extra spinal fluid would normally shunt to has healed over. The doc was able to remove 10cc (2 tsp) today. Bella took it like a champ.

Her feedings are up to 24cc every 3 hrs and she's tolerating that well. Lucky for her that she gets to eat as her Uncle Josh(Jimmy) is having an urgent appendectomy right now(9 pm)
Prayers are with u Jimmy!

Update 1-29-2012

Daddy had another chance to hold baby Bella again today. What an amazing creation. She also topped 1lb wt gain! Up to 2lbs 9.6ozs! Awesome, way to go Bella!

Thinking Daddy & Bella could win a photo contest....obviously for Dad's handsomeness.....but really for Bella's beauty! ;~)

Bella holdin her own

Bella's nurse today is split between two pods & Bella is making her work!
Bella at times gets too comfy during & after feedings (possibly with just a full tummy) & her nurse has to chase Bella's O2 saturation by turning up or turning down the nasal cannula oxygen.
She can be such a little stinker sometimes! Kinda like her brother Dallin & of course the girls as well! Here are a few pics from today.

1st tubby bath today!

New pics after Bella's 1st tubby bath!

She's doing pretty well today. Mom got to hold her awhile & now she's resting back in her crib. Love u baby Bella!

Sweet beautiful Bella

Look what Daddy got to do on his lunch break today! Go Bella! She's going with 6 hrs of high flow cannula trial per day. She is doing very well.

Thanks again for all the prayers.

Isn't she just so beautiful?!

Thank you to all the nurses & NNPs & Drs who are caring for her! We love you all.

New pics of Bella in her outfit

Sweet baby Bella.

Update for Bella 1-25-2012

Bella had her first eye exam today to check her retinas & blood supply to them. There are some small abnormalities in both eyes, right one having more, but they are minimal right now. So the eye Doc will follow up next week. With what we have been able to research we find that most neonates will resolve without any treatment. So that is what we will pray for! Yay Bella!

She is still chugging right along on her Cpap down to 22-23% FiO2. Plan is to trial high flow cannula each day & see how she tolerates it. This am's co2 level at 53 so that is great! Keep it up Bella!
Once again: thank you everyone!

Trialing on high flow cannula!

Whew-hew!
It might only be for 3 hrs a day but a step in the right direction!
Way to go Bella!

Loving Bella

"I've got my eye on you".

Bella stuck at 2 lbs 5 ozs. She is up to full feeds again and oh boy do we have a stock-pile of breastmilk at home in the freezer!

As we continue to love her & pray that she grows our hope is that she'll dodge any other complications. We all know she's had plenty.

She's been back on oral sodium supplementation related to a medication similar to Lasix(aka "the water pill") called Aldactizide that should help keep extra fluid away from the PDA to help it closd itself faster.

She is also on oral caffeine (not Mt Dew) to help continued to stimulate (or remind) her central nervous system to tell her diaphragm to take breathes.

She continues on a tapering dose of decadron to help her lung tissue grow, so that she can stay off the ventilator.

Bella: there are a lot of folks who love you who have never met you plus those if us who have & that's a lot of LOVE! May our love help propel you forward & our positivity energize your soul!

1-22-2012

Bella still doing well today. We can tell that she doesn't enjoy the mask or headgear that much. We also think she is very tired of not being able to lay on the left side of her head where the shunt is, but Dr's orders for now. She's tolerating her feeds-- just trying to be patient with her gaining weight.
Thank you once again for all the support. We need it now more than ever!

1-21-2012 update

Bella continues on SiPap doing well. No big changes but we are continually thankful for her progress. We still have a long road ahead.
The mask & headgear still looks uncomfortable, but better than the ET tube.

Bella doing great! Keep it up!

Bella's tolerating SiPap well so far! Yay! Blood gases have been good. We will continue to pray she will keep it up!
Love you baby Bella!
Thank you everyone for the prayers! They are being answered. We know who we owe it all to.

Baby Bella

If all goes continually well for Bella at her current rate she could potentially be off ventilator tonight. Everyone pray she comes off & stays off, that she'll continue to grow her lungs & exchange the gasses correctly!

Go Bella!

She's smashing her nose into the "neo-bar"...it's the bluish-green plastic piece that her breathing tube is secured to. You should see the video I caught when Bella was having a "fit". It's too much data to try to upload to this blog, but if u wanna see it, come see me(Matt). It's pretty gnarly looking.

Update 1-18-2012

Overall a good day. Caffeine started again to help stimulate the CnS. Feeds down then back up again. She had not tolerated her full feeds yesterday so they are "gradually" increasing them. She received another blood transfusion today because her HCT was down to 28. Now back up to 44. Systemic steroids were started again today (smaller dose & course) as they are aggressively treating to get her off the ventilator.

All anesthesia seems to have worn off, as she is actively Kung-fu kicking & karate-chopping again. Be good for the nurses Bella!

The incision site looks very good. Shunt is doing its duty. We worry about increased chance of infection and other possible complications but for right now we are just so happy & thankful she has progressed well thus far. Biggest thanks to Heavenly Father & the Lord for answering prayers & lifting us up & giving is strength through this time.

Tuesday 1-17-2012

Just trucking along. She's stable & has a boggy occipital (back of head) region full of the shunting spinal fluid.

Feedings started again today, will be monitoring residuals & blood sugars.

The plan is to start lower dose steroids tomorrow to aggressively get baby Bella off the ventilator. That is are greatest wish/desire/prayer at this time.

Thank you again everyone for your support!

Back in the NICU

She tolerated procedure well, got her first haircut, head looks very abnormal but the shunt is working like it should! You can actually see the fluid collection pocket below her incision & shunt device. It's like a little fluid wave.

She is back in the NICU & just waiting for the anesthesia to wear off. She's just a bit sleepy. They allow her to rest, then start feeds tomorrow, then aggressive wean off of vent in next few days. They will start another round of steroids (different regimen) & continue with the pulmicort nebulizers.

Mama looks like she could use a massage or a Xanax or both. We are thankful she tolerated it well & pray no infections!

Thank you everyone for prayers & positivity!

Here's the post-op picture.

Waiting....impatiently

Yep it's 4 o'clock. Bella's nurse called to give us update at 3:15pm that they just got Bella positioned on the OR table & so we wait....impatiently of course, because we are humans & her parents & so we worry with hope & positivity.

1-16-2012 Bella all ready to go.

Here in NICU waiting for Bella to be escorted out to OR for her procedure. Everyone is anxious, mama more so than anyone. Praying for the Lord to guide the surgeons hands.

Had to include this picture from yesterday when Bella was white knuckling her breathing tube: we believe it's a sign that she wants that thing out ASAP!

We thank you all for prayers & thoughts! Will give updates as we know anything.

1-15-2012

We are sitting in NICU preparing ourselves for Bella's procedure scheduled for tomorrow. Bishop came by & we gave Bella a blessing. Today's sacrament meeting at church was amazing. It was almost as if they were speaking directly to us.

The consult with neurosurgeon went very well & she answered all our questions, so we feel confident in her abilities to place the reservoir/shunt.

Becky got to hold Bella again today & that means so much to both of them. See the pictures I've posted today.

Tomorrow around 1pm. Prayers & faith for Bella & Heavenly Father to guide the surgeon's hands.

Thank u everyone! We love all of you!

1-14-2012

Bella status quo today. Here's some new pics for today. Go Bella! She has gained a whole pound since birth!

Bella being good

So she's had a decent day. Mommy got to hold her again which makes them both feel oh so good.

She was able to tolerate a wean down on one part of her ventilator which is a good sign.

The Neurosurgeon did suggest that Bella receive the shunt to help reduce the hydrocephalus (which hasn't gotten worse per ultrasound but still significant to do something about it) and so that procedure is scheduled for Monday. The plan here is to get it done before trialing the next extubation (or removal of the breathing tube) and switching to a high powered humidified nasal cannula.

After talking with her nurse tonight, she says Bella has been a good girl so far for her and we hope and pray she continues to progress!

Once again, thank you all for the support, the prayers, the thoughts, and the meals. Everyone has been very kind. Thank you, thank you, thank you!

Pics from 1-13-2012

Here's an updated pic from Friday the 13th, which wasn't so scary. Bella sure doesn't like the flash of the camera!

Busy day for Bella 1-12-2012

Bella had a busy day & tolerated most things well. O2 continues up & down depending on her agitation or activity levels. Continues on vent.
Head US showed no new difference in size of ventricles but neuro-surgeon decided to try a ventricular puncture which netted an estimated 2 cc & came out fairly slowly proving Bella currently with not so much pressure in her head which is a good thing.
Echo was done today. Still awaiting results to see if medicine did any good to help close PDA.
Dad went to check on mom & Bella after the ventricular puncture & mom was still shaken up. But Dad got to hold Bella again! Yay!
She should also start on increased feedings tonight. She's up to 2 lbs 8ozs so go Bella!

1-11-2012

Calendar month birthday for Bella. Still status quo. No new significant news except they're adding a "neo-bar" to help secure her breathing tube.

Other than that, we continue to pray she grows & grows...except her hydrocephalus, that is.

Bella Feisty!

Bella did it once again to her same Nurse tonight: she extubated (unintentionally removed her breathing tube) herself during cares. Silly silly girl... We think she is just trying to tell the Docs, Nurse Practioners, and Nurses something: "get this thing outta my windpipe!"

Lets keep praying for the little angel, the power of prayer is amazing. And thank you all for those who fasted for her this last Sunday! We love you Isabelle Grace!

Bella 1-10-2012

Bella had another lumbar puncture today. Only yielded 1cc of CSF. Dr explained that she has "non-communicating hydrocephalus" meaning the spinal fluid that is not being absorbed as it should in the ventricles does not flow through all areas where CSF would flow, basically meaning that further LPs will not help her. The next head US is scheduled Thursday. Then they decide what further treatment would be best for her.

Bella is on day 3 out of 5 for the medication treatment that will possibly help close the duct (PDA). She will finish that treatment on Thursday and then have an echocardiogram (heart ultrasound) to evaluate if the PDA is closing. The Dr also started Bella on some very small feedings just to stimulate the guts a bit but not overdo it while she continues on the med for PDA. The feedings may be back to full amount by Friday or Saturday.

She will be finishing her current course of antibiotics around Thursday as well and some discussion was had regarding starting on an inhaled low dose steroid such as Pulmicort. The lungs are not quite even close to being developed enough to be able to exchange oxygen & carbon dioxide so we continue to pray for this to happen sooner than later so that she can tolerate more weaning & eventually be off the ventilator.
In the meantime of so many prayers for her, please remember to thank Him for the progress she has made thus far. Oh and here are a couple pics to enjoy also!

New pics for today

Bella update: January 9, 2012

Bella is having frequent Bronchospasms in regards to her being on the ventilator so long and developing chronic lung disease per the chest x-rays. So we are hoping to get her off the ventilator as soon as possible. But knowing she is only equivalent to 28 weeks gestational age, we know she has a long road and we pray for the best. They did start her on a bronchodilator (albuterol neb) to see if that would help these spasms.

A spot of good news came back today with results of head ultrasound showing no new growth in the ventricles which means we can breathe again in regards to any procedures for a few more days.

We think she might be a little hungry as well because they hold breastmilk feedings while she is receiving the Indomethacin treatment as it can slow down blood flow to the intestines, but can potentially assist in helping close the PDA.

So once again thank you for the prayers and love and support. WE REALLY DO THANK YOU!

Common Bella, keep fighting! But please quit bronchospasming!

Bella starting new medicine today!

Bella had a normal pooh! Yay!
She is also starting the medicine to help close the PDA, so let's pray she doesn't get too hungry! They have to hold her feedings for the time she receives the medicine, which is 5 days.
This will what we will continue to pray for so that she can wean completely off the ventilator! & dodge the ligation surgery.
They are still monitoring her head circumference, soft spot, & fontanels closely. Follow up head ultrasound tomorrow. It would be completely awesome to prevent the reservoir or shunt procedure, so stay positive! We love you so much Bella.
HAPPY 1 MONTH DAY BELLA!

Happy 1 month birthday Bella!

She is one month today and had come so far and yet has many more hills to climb. We will be there right beside you Bella. All of us! Psalms 37 is a pretty good chapter and we invite all to read!
Had to include some of these pics from Dallin getting to hold baby Bella's hand. He actually caught her spitting up this night so we could alert her nurse to suction her mouth.
She is having a status quo day. Doggone CO2 level is creeping up on her blood gasses. We would rather see that particular level going down. Patience & trust in the Lord & her care providers, right?!
Cannot believe its already been 1 month!