Daddy helping....& update 12-31-2011

Dad got to attempt to hold her pacifier in so that she could work on her suck reflex while she was getting fed at the same time through her oral-gastric tube. She has a strong suck! YAY Bella!
We had another conversation/update on plan of care with the Dr today. They are going to monitor the ventricles with the next head US scheduled for Wednesday. She is doing amazing with her feedings, pooping, & still moving all arms & legs very well. (we would worry she would get stiff muscles related to the complications from the head bleed, something called PVL for short-u can look it up if you want). But she is moving things well & her head circumference is growing at a normal rate.
It's harder now to see that breathing tube in as Bella got a roommate today & that roommate actually cries! We so want to hear Bella cry! So we keep hoping & praying & reminding ourselves of the peaceful feelings we had during her blessings that all will be well!
Oh & mom got to hold her again today! Go mom!

12-31-2011

Bella's blood gas this am best it's been: 7.36, CO2 of 49, O2 30, Bicarb: 28.2. That's very good news! She's also tolerating her food very well & will be receiving increased calories. YAY! Now we wait & hope the possible hydrocephalus clears! One ventricle had increased in size so we wait. Thank you again for all the support & prayers!

Awww 12-30-2011 1pm

Look at what mama got to do again. It's so important for both of them! YAY!

Bella back on vent 12-29-2011 8pm

This is a typical thing but she did tolerate almost 12 hrs of the SiPaP machine (just a large humidified nasal cannula with some special settings). NNP attempted to place a larger ET tube to assist with better gas exchange at the alveoli level. So she needs some more time to help those lungs grow! Tonite she is cruising at 88-90% O2 sat with 35% FiO2 on the ventilator(almost the lowest it can get). Minor set back they say. We r expecting at least 4 wks total on the vent. So here's the picture back on the ventilator tonight. Thank you for your continued prayers & faith. They really mean so much to us! She will heal. She will grow.

Update Bella. 12pm 12-29-2011

She tolerated extubation maintaining her O2 Sats just fine. However her CO2 level on last gas check was 70(too high). So another gas will be done at 5:30 tonite so we can track that. High possibility she will have to be reintubated & put back on the vent. Shoot. But she's still fighting. Go Bella!

Look what Becky got to do again!

She looks so comfy!

Update 12/28/2011

Bella had a decent night tolerating the feeds much better. She's had a recent rough episode of low O2 sat related to some extra gunk in mouth & ET tube. Suctioned & O2 sat back up to 95%! So we will keep praying she will not develop infection with this. Last feeding had residual of 5cc which we don't like because she had such a great night with feedings. No more bumps please! Only smooth roads right!

Bella update 12/27/2011 7pm

Well she tolerated her most recent feeding better so taking out the fortifier did help, for now. Her temp dropped a wee bit the last time her cares were done so please please pray for no new infection. We worry about the recent vomiting as when you throw up with a tube in your airway u cannot ignore the fact that some emesis could have potentially leaked into the lungs, however her FiO2 is at the lowest it can be on the vent currently. Hope. Faith.

Bella update 12/27/2011 1:30pm

Bella appears not to be tolerating the milk fortifier very well. They add that to the breast milk to increase her calories to help her grow. Bella was saying no way as she had 3 bouts of puking today. So they will continue the feeds w/o the fortifier. She has tolerated a couple small adjustment weans on the ventilator but more than likely looks like a more restful day. She was a little agitated this am with her cares do they had to give her a dose of Ativan to help calm her. She tolerates that ok now. We'll keep praying she can grow & heal & keep the faith & continue to foster HOPE!

Update 12/26/2011

Bella continues on short improvements to help her be ready for extubation. I have limited my expectations so that I am not disappointed when we have set backs. She's such a beautiful little fighter! U go girl! Good night sweet Bella. We love you! She's gonna be so smart. Check it out: the #2 pencil. & it's in her LEFT hand!

Bella back under the Bili lights

Bella continues stable. No big changes expected today, however she will have another echo of her heart today. So we will continue to pray for good news & hope she continues to tolerate further weans on the vent. It's so quiet in her room now. But, if another baby is admitted, Bella could have a roommate! I don't think mama likes the idea of sharing our nurse throughout the shift! But Yay! She is stable & hopefully getting stronger!

Bella update 3:30pm Merry Christmas

Got my fingers in my mouth & my hair all clean & now you can see how much hair I have, since I am half baby monkey & baby wee-bird. Bella doing so well from weans they attempted a trial on c-pap but she didn't like it so well so she decided to barf, be bagged, then put back on ventilator. So she is resting well & enjoying it as witnessed by the pictures.

Merry Christmas Bella! 12-25-11

Merry Christmas to our little Christmas miracle! We all love you so much Bella!

Bella improving little by little! 12-24-2011

Bella was converted over to a conventional vent because she is tolerating the wean well. She is maintaining Sats as the high dose steroids do their magic on her little wee-lungs. Be reminded this is her honeymoon stage so we may experience set backs in the near future, but we continue to take the goods & progress towards the better! A big thanks to all involved in her care & the many prayers on her behalf! Bella got some tummy time. Love u all & merry Christmas!

Awwww....

Look at what mama got to do for lunch today! Merry Christmas mama!

Update on Bella 12-23-2011

We continue praying she will get strong enough to wean off of current ventilator & get to other ventilator. I captured video footage of her initiating her own breaths which looks odd but is seriously awesome! But unfortunately unable to upload on this blog. Mama was able to help with Bella's cares today. She tolerated them very well. Mama was a bit scared though. Thank you for your faith & prayers.

New pics of Bella

She's doing a little bit better each day. Head US showed no new growth in ventricles. Hematoma or clot is stable looking more like a "cyst" so we will continue to monitor it. Belly remains soft & she had another poo today so many positives continue. Thanks to Heavenly Father & all of your prayers & faith! Thanks so much to the Docs & staff in the NICU! You all are so appreciated!

12/22/2011 8pm update

Bella has had a good day & we will take it & thank Heavenly Father for it! Only minor set-backs included a loss of an IV site & unplanned extubation during a position change. She tolerated the re-intubation well, took a few mins to regain her Sats & currently at 94% while cruisin on FiO2 of 50% on the ventilator. We are feeling a little less anxiety. There was mention of some green snotty looking aspirate from her OG tube after checking a residual from feeding. NEC was mentioned but they will just monitor for any other symptoms. Bella's HR & BP remain very stable & she is a little fighter! Oh & 1 other thing to mention is that she had another poo-poo! Yay!

Her 1st poop! 12-22-2011

Bella had a poop today! Yay!

12-21-2011 9 pm update

Bella is coming right along taking her own sweet time. The Doc & RNs thought they might have attempted to wean her too fast from the ventilator so she is back on a little more support pressure wise but the FiO2 (oxygen being delivered by vent) is down to around 50%. Her oxygen saturation is maintaining around 90%. Heart rate still strong at 150s range. BP is stable. So we shall continue to pray specifically for her lungs to grow/heal & build a reserve! We love u Bella. Hers a pic with Becky's ring & my ring so u can gauge how big (or little) she is. Wt was up to over 2#s last night. Keep praying!

In NICU w/Bella

Sitting in NICU W/Bella right now. The UAC & UVC lined were removed. She received a radial art line. Has tolerated a few more ventilator weans. Current O2 sat is 91% on FiO2 of 65%. Last cuff BP pressure was 69/39, MAP hovering around mid 20's. HR strong at 150's.
Pic below showing off her Bili shades again. "I am so cool"

Bella better this am 12-21-2011

Bella able to wean FiO2 throughout night so bounced back with help of Pavulon med. Steroids started so continue to pray that she does not have any infection cause the steroids will make infections worse. We are grateful to Heavenly Father for all the blessings he has given to Bella & our family. & thank you for all of your prayers. We love you all & appreciate everything all of you are doing.

Bella 12-20-2011 9 pm

Well, it seems a bit surprising to find the NICU code team in the room when we arrived tonight to visit Bella. We were escorted to another room while the team worked on her. Within several minutes while we were coming to grips that this was the last day of her life a nurse came back in letting us know that Bella had received a paralytic to help calm her enough to bag her & put her back on the ventilator. Her Sats had returned to normal range as we walked into the room, essentially to say our goodbyes. We held her hand, touched her head & face, & even stroked her head of hair. Within a few minutes she was opening her eyelids to get a glimpse of mama as she sang little Bella songs & spoke to her ever so softly. Her Sats continued to improve & the nurse continued to wean down the FiO2 from 100% to 60% on the ventilator. Of course our hopes began to rise that she will still make it through this. The doctor is going to begin the higher dose steroids tonite with hopes that they will help her wee-lungs enough to wean off the vent. The night was capped off with a visit from our Bishop to help us thru this trying moment & the visit was very inspiring & helpful. We left Bella with a priesthood blessing & a bedside family prayer. We are home now admiring our other children & counting the numerous blessings that our Heavenly Father has given us. We are truly truly blessed. Thank you for your continuous prayers for Bella & our family!

12-20-2011 04:30am update

Bella has had a status quo night as they have been unable to wean any vent settings. Her last ABG appears to have improved but when u r on the highest FiO2 setting...She really just did not like being messed with so much after the PICC placement & x-ray to verify it's position. Dog-gone it! Just when we thought up & up....Common girl. Sodium level climbing so fluids changed again. BGs stable. Urinating a lot. I think it's time for the higher dose steroids & time to get her off the vent over to baby bi-pap. Breathe girl Breathe!

Just when u think...update 12-19-11 9pm

Bella was having a great day, then when they placed the PICC line she decided she didn't like that too much, her Sats took a dive, she had to be disconnected from the vent, and bagged to get her Sats back up. Wasn't very comforting but necessary as the umbilical lines will be due to come out soon. Our entire family was up there so in the vehicle before leaving we held a family prayer for Bella, thanking Heavenly Father for the positive progress she had made t/o the day & to continue to inspire the nurses & docs & NNPs to know how best to treat her. I really don't like this roller coaster. It's time to get off the scary ride & switch to a calmer one. I don't like to throw up anyways.

12-19-2011 Bella update

Bella has had a better day today! The active ventricle bleeding has stopped. She has tolerated some minor adjustment weans to the ventilator. Overall we will take the good news over the bad. She was scheduled to have a PICC line placed today. Still waiting on that news to see how she tolerated that procedure. She is off dopamine gtt. BP's are hanging in there. Will continue to pray for only good news from here on out. Thanks so much for everyone's support!
Check out today's picture. She is looking so comfortable.

Bellas weight 12-18-2011

This am's weight up to 1# 14oz from her birth weight of 1# 9oz. Just wanted to give that little update.

12-18-2011 7pm

Bella has had a better afternoon. We will take every little improvement that we can at this point. The nurses & Docs were able to wean o2 again, they believe improvements are related to the improved cortisol levels. They started new meds & continue antibiotics & anti-fungal meds. The one negatory is that they are still suctioning small amounts of blood from her ET tube, maybe related to open PDA. Another positive is that my sister, Bella's aunt Heather just showed up. Also wanted to thank everyone for the FAST today. Don't forget to give fast offerings to make it complete. We love all of you!
-MP-

12-17-2011 2100hrs

12-17-2011 2100hrs
As we contemplate the worst case scenario for our little angel Bella, our hearts are so heavy again. During the visit tonite the neonatal nurse practitioner mentioned the fact that they are running out of options for treatment. That little Bella is so sick and tiny right now. Those words weighed heavy in our hearts as our most wonderful Allison was asked to bless the food in prayer tonite. As a family we all broke down contemplating if we will ever get to bring Bella home. It was a spiritual moment of tears as we asked HF to allow His will to be accomplished. We will not give up hope on her but we are so weak right now. A family & friend fast to be held tomorrow on Bella's behalf.

12-18-2011 0500am update

Bella had an average night. Hct is 44 which is great. Night shift nurse able to wean Fio2 to 80%. It appears little. Bella enjoys being on her right side as opposed to her left. Hoping that her bilirubin level decreases more so they can wrap her up to establish boundaries in order to help her not be such a squirmy little wee-bird. Bella continues on dopamine for a little BP help. She is also on Fentanyl gtt to help w/calming and/or pain. We are in continuous prayer for her. Mama is still wiped out but able to rest in between pumping. Well back to bed to rest my weary stomach ulcers!

Answers?

This is really hard. We look for answers everywhere we are & everywhere we go. We study our Lord's words, pray with such emotion of heart & continue to hope that Bella will heal. We wonder why a little child must go through this, why we must go through this as a family. Is it a test of our faith? A trial that we must learn from?
Becky & I have come to the conclusion that is completely in the Lord's hands. We are not giving up on Bella, no never. But how much long-suffering can one take?
We will be headed back up to NICU tonight we humility in our hearts.

12-17-2011 1:30 pm Update

Bella has been started back on antibiotics, anti fungal medicine, & chest x-ray looked worse this am. Echocardiogram this afternoon is scheduled to check her PDA. Possibly bleeding in lung area r/t the PDA. WE r in NICU. Things are not looking too swell right now. We r scared & praying fervently.

12-17-2011 04:30am update

Just checked in on Bella. She has had a good night with overall weaning of the FiO2 on the ventilator & her HCT is holding at 36 for last check. She continues overall calm thanks to the Fentanyl drip. Just wanna put a huge THANK YOU out to the NICU staff @ St Marys: we appreciate the care you give our little miracle Bella Grace! She has also been tolerating the increased feeding times of mama's booby milk so we are overall pleased. We thank all of you for your prayers & love :~) @ our biggest THANKS goes out in continuous fashion to Heavenly Father for this sweet, sweet blessing.

Newest picture from tonite

Here's a pic from tonite. Thanks for all your prayers & support!

UPDATE from Matt

Becky is home now. It was a struggle to come home w/o a baby do we are trying to adjust. Girls just got home from school & excited to have mama home. Just a great word of appreciation for all who helped on the house today: Heidi! Keri! Jen! My mom Peggy! Becca! THANK YOU!

UPDATE from Matt & Becky

Hello everyone: thank you all for what you are doing for us. update: Becky to be discharged home today. Bella had another rough night on ventilator. Her wee-lungs are not developing quick enough...so of course we are very inpatient human beings. Our thoughts and prayers and feelings are that she will be alright, but as we watch her struggle our eyes send us a different message. So please keep up the faith that this little miracle will continue to astonish the medical doctors as we know has already happened...by her actually being conceived in the 1st place! So please continue the prayers and be faithful! It's very hard to separate what we feel vs what we see. Once again thank you for all the wonderful support, love and kindness that you have sent our way! Matt, Becky & Bella

Bella Grace

Our little Bella has had a rough 1st three days of life. She was delivered via emergency c-section on 12/11 at 3:04am weighing in at a whopping 1lb 9 oz!
She continues on ventilator support as her wee lungs were not adequately developed. She has also had bleeding in the ventricles of the brain which has progressed over the last couple days. Now at grade 4 on both sides. We were & have been on an emotional roller coaster ride and have an increased faith that she will continue to fight to heal & get better!
Becky has also been struggling as we almost lost her in the OR. She received 5 units of blood & a lot if IV fluid to stay alive. She then stayed in ICU for 2days & now we've been on mother baby unit for our 2nd night. The care has been excellent! Becky received another blood transfusion today so now has received a total of 9 units. Tonight she developed a pain behind her left calf & knee that one would worry about a blood clot but WHEW the ultrasound/Doppler was negative. Now trying to get pain in control to get some rest! 12/14

- MP