Update!

Bella has been off of the vent since 11 am. She is requiring only 63 % oxygen right now (last time she required 88 - 100 %). Her sats are in the 80s-90s. She is doing really well as long as we keep her calm which has been the biggest challenge today.She is responding well to swaddling and big girl activities like keeping her isolette open. She had a great blood gas, even better than when she was on the vent. I said today that I missed being able to hear her cry, she made up for it...BUT being able to actually do something to soothe her is refreshing. I can't fix her lungs or heart but I can put her pacifier back in, hold her and swaddle her tight! Today I feel like a normal mother trying to care for her newborn, that is a feeling I hope to never take for granted again.

It is truly amazing to witness the many folks that take care of her, not only with their skills or their hands but also with their heart. Even the ones that are not there on a day like today send so much love, prayer and positive thoughts. And to have all of you reading this now thinking of her, praying for her and giving us your continuous support is truly a testament to the human spirit. We are blessed to be surrounded by so many people of faith. May we always strive to never take any of this for granted on the good days AND the bad...Tomorrow may be a bad day but we have today to carry us thru so thank you!

Much love to all
Telisha

Much love to you all
Telisha

Update!

Bella has been off of the vent since 11 am. She is requiring only 63 % oxygen right now (last time she required 88 - 100 %). Her sats are in the 80s-90s. She is doing really well as long as we keep her calm which has been the biggest challenge today.She is responding well to swaddling and big girl activities like keeping her isolette open. She had a great blood gas, even better than when she was on the vent. I said today that I missed being able to hear her cry, she made up for it...BUT being able to actually do something to soothe her is refreshing. I can't fix her lungs or heart but I can put her pacifier back in, hold her and swaddle her tight! Today I feel like a normal mother trying to care for her newborn, that is a feeling I hope to never take for granted again.

It is truly amazing to witness the many folks that take care of her, not only with their skills or their hands but also with their heart. Even the ones that are not there on a day like today send so much love, prayer and positive thoughts. And to have all of you reading this now thinking of her, praying for her and giving us your continuous support is truly a testament to the human spirit. We are blessed to be surrounded by so many people of faith. May we always strive to never take any of this for granted on the good days AND the bad...Tomorrow may be a bad day but we have today to carry us thru so thank you!

Much love to all
Telisha

Much love to you all
Telisha

Prayer Request!

They have decided it is time to take Bella off of the ventilator today!!! Please pray for her to remain strong and able as she takes this HUGE step again. Please pray that we remain patient and accepting of God's timetable & that His grace will be sufficient for us.
Thank you all again for the love and prayers. We can feel them daily!!!

Day 98

We all like to jokingly say that Bella has a sick sense of humor and often it is at the expense of my sanity and emotional well being...As I have mentioned previously we both really like our holding times. Once we get settled, all is well in our little world for that 30 minutes to an hour. AND THEN...I look at the monitor and her heart rate has dropped dangerously low, her sats hit 50's or 60's and she turns blue or grey. It has happened multiple times for various reasons- she pulls her breathing tube out, she has a bronchial spasm or like today there is a chunk of secretion blocking her tube. Everyone moves quickly and calmly to get her back into bed and evaluate the situation. I usually run to the lactation room for a quick breakdown or my heart races so hard it might beat out of my chest and it takes hours to bring me back to normal. But today, today I laughed at our little joke and calmly stood by until they got her situated...Maybe a sign that we have been in there so long that this has truly become our new normal, maybe I just know that everything is going to be alright or maybe I have finally lost my mind :) Whatever the reason it was good to laugh instead of cry. I think I will try it more often now...

Bella is still doing well and all treatment seems to be progressing. She is on a rate of 24 (we were at 50 on Friday), oxygen is in 50's - 60's and sats have been in high 80's and 90's. We are hoping that she is on her way to extabation soon, if we don't have a planned one I have a feeling she is going to do it for us anyways. She had another eye exam and Dr Wallace says that nothing has changed since the last one so that is good news as well.

AND she is wearing her first little outfit. She is finally big enough for clothes! We gave her a tub bath last night, dressed her and switched her to a new bed. She is also being swaddled with a blanket now and seems to love it. She is weighing in at 3 pounds and 6 ounces, which seems huge to us already.

We continue to pray and praise God for having a front row seat in witnessing one of his many great miracles.

Much love to you all
Telisha

"I am picking up the pieces, putting them where they go but where do they go Lord where do they go?"

This is a lyric to a song that I am listening to today as I clean my house. Here are rooms of my house before the boys left for the beach. In the past few days I have opened up cabinets, closets and looked at these various rooms overwhelmed and in shock that this is what our life has come to. See these rooms, these closets, these cabinets they symbolize our life for the past 4 years.

This could be lengthy as I get you up to speed on where we have been and how it came to this....

-The first year of dating I started a new business, Chris left a job and started his own business as well. We worked out of a one bedroom condo. We struggled with finances but we had a vision of where we were going....
-A year into our relationship we were blessed with the news that Dylan was on the way. He was a HUGE surprise and wasn't included in our big vision for the future at that time. So we quickly and not so prayerfully came up with a new plan. Chris would go out on the road for 6 weeks to do production for a tour to get the money to buy a house. I would get a full time job and keep my business going part time in the evenings and on the weekends. A month before Dylan came we bought a house and moved in quickly and hastily.
-The following year with Dylan was amazing. He changed us. He WAS part of the plan, a bigger, better plan than we could have ever come up with on our own. I continued working out of the house. Chris stayed home with Dylan for 3 months after I went back to work. He worked from the house and somehow managed throughout this to keep his business moving forward. I grew a bit resentful that he was getting to raise our child AND grow his business. I left my full time job and went back to work on my business full time.
-Marriage? Well this was the big question from many folks for a while. When were we going to get married. When we learned of Dylan we discussed it, we both wanted to do it for the right reasons and never question why we did it....After a year of raising Dylan we knew that we wanted to continue growing our family, we knew that our life together is secured and that we had found a life partner.
-The wedding planning came at a time when both of our businesses were thankfully growing and doing well. We were insanely busy with work and Dylan. We took every single client opportunity we came across. One or both of us worked most holidays - Easter, my first Mother's Day, Father's Day, 4th of July, New Year's Eve....Somehow luckily we still managed to eat dinner as a family, put Dylan to bed most nights and have occasional family days so we really thought we were on track, it would slow down soon. Looking back now I see how out of control our life had become when I think about the fact that we sold our honeymoon week to Wal-Mart...They bought out our honeymoon so that Chris could produce an event where he would be out of town for 2 weeks. He left the day after our wedding. No honeymoon or post-marital bliss, it was back to work for both of us. We did manage to reluctantly and not so willingly squeeze in 6 weeks of pre-marital counseling. I credit this partly to where we are today in our spiritual journey as a married couple although I didn't appreciate it at the time. I can recall every word today that our pastor said and now it all makes sense.
-We started right away trying to get pregnant again. It took 7 months, looking back now I laugh at the thought of us worrying why we weren't getting pregnant. We know the facts of life and it isn't going to happen when we only say hello in the morning and good night in the evening...A vacation during Christmas brought Bella.
-Time for a new plan. How would we make this work? How would we find the time and money to get it all done. After a few arguments about how I would not be a stay at home mom, I would not give up my career, we would make it work. We merged our businesses together and decided to grow them as one. We moved into a shared office space and started working to expand. I worked 6 days a week, sometimes 15 hour days on Saturdays. The pregnancy was going great and I would keep working at this rate until August, then I would take a long maternity leave to prepare.
-Well you know the rest of the story.....here we are today. OUR big plan not really working out as we had envisioned. I am a stay at home and hospital mom. I couldn't think of anything else I would rather be right now. In true form Chris is able to manage both his clients and mine, keeping both moving forward. Have I mentioned that my husband is pretty incredible? AND we have learned the power of prayer, we continue to learn about constant communication with God and we are finding answers in the silence. We are learning that we have to put Him first, above all else and everything else falls into place. It truly does....

So while the boys are at the beach, I am picking up the pieces, putting them where they go and asking the Lord along the way, "where do they go Lord, where do they go?" I won't get them all into place today or tomorrow but prayerfully our life and our house will come together at God speed...

Day 96

We have much to be thankful for this Sunday...Bella has been on 50% oxygen and lowered rates for a good part of the day today. She is responding to all forms of treatment. She has been diagnosed with moderate Pulmonary Hypertension which is still being treated with nitric oxide and there is a new string of bacteria in her breathing tube that is being treated with antibiotics. Most importantly she is responding to the steroids for lung improvement. We are uncertain which one of these exactly caused her to go downhill but treatment for all of it seems to be working now and we are moving forward. The timing for the care conference could not have been better, true to his word our Dr followed thru in a proactive fashion and we are so truly thankful for this. At the request of one of our incredible Primary Nurses he increased our holding schedule to 4 times a week and we have been able to snuggle for the past few days. It has been good for the heart and soul.
The boys are thankful for the sand between their toes, 2 hour naps and a boys trip to the beach without Mom's excessive planning. I am thankful that for a week I don't have to choose between children all day long, closet organization w/ no more wire hangers and for the reminder today at church that I am a child of God. Again we thank you for the continued prayers, we have a long road ahead of us but we are hopeful because when we are weak, He is strong....

Much love to you all
Telisha

Day 94

Well much has happened here in Bella's world since my last post.
I'll start with the fact that I had a small break down..., decided that I was tired of watching and waiting. I wanted someone to do something...unfortunately it was about 2:00 am and sending my husband to talk to a Dr at that time was not very productive. So our wonderful, incredible, amazing Primary nurses took control of my insanity and set up a care plan conference with the Dr. We were able to listen and ask many questions about where we are today. He gave us a gameplan which was dependent on some tests being done. However God decided we needed to expediate the plan and right after our meeting Bella took a turn for the worse. Her sats dropping into 60's for an hour and nothing could bring her up. So we have done the following:

-Bella started another course of steroids. Her lungs are not getting better on their own. She needs help and we really need to get her off of this vent.

-Although clinically she doesnt seem sick besides higher oxygen needs they have started some antibiotics. I have wanted this for days, for some reason I can't shake the thought of infection.They have done another blood culture to see if they can find anything.

- Her blood gases are getting worse again so she is up on her vent settings. Hopefully the steroids will help w this.

-And the one we have been waiting for is the Echo for the Pulminary Hypertension. The Dr already started her on nitric oxide which is the best treatment for the condition. The Echo was just done and the cardiologists confirmed that there are some signs but it is not at a dangerous level yet and we should just continue with the nitric oxide treatment. I will get more info from the Dr soon on this and what those results really mean.

She is stable, alert and beautiful...there are some scary challenges ahead but we are holding tight to our faith. More to come...

Much love to you all
Telisha