Friday, October 29, 2010

Day 165

Well... our first few full day at Vandy was ummmm... interesting. Bella was not on good behavior and I know just enough about her medical history & condition to be informative to some and annoying to others. We didn't make too many new friends today but did find great comfort in a wonderful social worker and inspiring pastor so mentally & spiritually we came out okay. Medically, we are still working on that...

Today reminded me again just how spoiled rotten all of us were with our nurses and respiratory therapists at Centennial. I am giving the benefit of the doubt that with time we will find great ones here too. However we did not today and the day was long. I came to the realization that my beautiful, sweet, tiny baby can be scary to some people. She may come across as pissed off and huge in comparison to the other babies. I also realized that at a teaching hospital they like for the residents & students to learn how to do things themselves, not by the mother of the baby telling them how the baby likes things to be done, doing things for them or diagnosing the baby for them....From my last blog you can tell that things went really, really well the first day so I have no doubt that we are in the right place, it is just going to present a new set of challenges and daily frustrations each day for everyone involved.

With all of the quick vent changes this week Bella's left lung has deflated. Her saturations have been horrible today. The good thing is I heard speculation on many different conditions that could be causing this and possible treatment plans instead of she just has really immature lungs. All of the testing and a definitive care plan are still in the works so I don't want to put too much information out here until they get back to us on many things. She has some definite issues that could be causing her worsened lung condition like the pulmonary hypertension. I do know that we are holding off on the trach surgery as the ENT team feels like she needs to stabilize more and also want to do some more testing to make sure she needs it. After today I think they are correct.

We are scouting the hospital for good primary nurses. I have been showing off Bella like a used car and cramming photos of her being adorable in many faces. We have 1 so far and she will start next week when her other baby gets discharged (THANK YOU MOLLIE!). We have a feeling she is going to be pretty terrific. Anyways I am praying that the Lord will send the right care team to us as He has in the past.
I met the pediatric pulmonologist (lung doctor). I hugged him and told him we were going to be best friends. May have scared him to0 as he informed me they would only be working with me when Bella got the trach and got closer to discharge. I told him that is what he thinks and that if he doesn't come by for regular visits I would stalk him down. It worked, he brought a team by today to answer questions and meet Miss Bella. He is very kind and promises regular return visits if only to answer my questions and prevent me stalking him in the hospital.

I am praying that today goes a bit more smoothly. I am praying that I have the right attitude as well to continue doing what is best for Bella- to know when to shut up and know when to speak up, it is a fine balance here. I am praying that she recovers quickly from this setback. I am praying that the right care team comes into place. I am praying that Chris & Dylan can keep on track even though I am not with them much now and they both know how much I love them. And as I pray I am reminded that even though I may not trust in those around me or even myself at times I can ALWAYS trust in the Lord and if I just stay in constant communication with Him all will be well. He and I will be having many conversations today...So here goes day 165 of our adventure!

Much love to all

Wednesday, October 27, 2010

Quick Update!

So just wanted to give a quick update to everyone. I will post again tomorrow once I have spoken with the Dr with more official information.
Bella actually transferred this morning around 9 am. They were not able to come get her yesterday. She had her first car ride (ambulance ride) and the transport went great. Upon arrival she has had a MASSIVE amount of tests and evaluations, which we love because that is why we are there. She has really handled it all beautifully so far.
Already we have dropped her vent rate from 60 to 45 and her pressures are on 25/7 which qualifies her for the trach (we may be holding off on this for more evaluation & to wean some more on vent but will know more tomorrow). For all of our medical friends her blood gas looked pretty good with pco2 at 65...
Our staff, Dr's and preemie moms at Centennial sure set us up for a warm welcome at Vanderbilt. We were greeted by SO many kind and caring folks who really made our transition as peaceful as possible. I really appreciate the fact that they are really listening to what has worked and hasn't worked for Bella in the past and not just starting over on the whole process. I got to really talk to the Dr's, nurses and nurse practitioners today about my knowledge and observation of her history and they really seemed to listen. Even if they were just doing it to make me feel better it worked :)
So big day again tomorrow getting reports back on all of this testing and seeing her care plan start to come together. One thing her Dr has said is that he does not want to keep her heavily sedated (which we thought would be coming...) he says that we will just give her the same comfort meds as she has received as needed. That makes me a happy mama!
God does not have a plan B. He has led us out of our "comfort zone" at Centennial and into the unknown. I can't help but think of Chris' grandmother who just passed that lived her entire life out of the "comfort zone" and telling people about Jesus. It has brought me so much confidence today to just walk in faith. I can feel her smiling down on us and it makes the day all the sweeter. More to come...

Much love to you all

Tuesday, October 26, 2010

The BIG move TODAY!

We just got word this morning that Bella will be moved to Vanderbilt today. Please keep us in your prayers for a safe transport and confidence as we move away from our home of 5 months at Centennial. We are excited and nervous for the next adventure BUT extremely sad to leave our Centennial family behind for now. We love them so much. We will keep you posted on details and such. Thank you Lord for answering prayers!

Much love to all

Friday, October 22, 2010

Day 157

Well things have seem to come full circle here at the NICU for all of us. It seems that after 5 months of being here we have arrived back to many of the emotions and circumstances that held true the first few weeks. The good days, the bad days, 1 step forward, 2 step backwards and me awake at 4 am staring at the ceiling while these words ache to get out...

The one thing that has changed is the fact that we are no longer dealing with a premature baby that is developing outside of the womb. We are dealing with a full term beautiful little girl that is very, very sick. That alone changes everything.

What I have come to accept in the past week is that there is no balancing life outside of the hospital right now. There is no "new normal" to stay on schedule and do everything that "needs" to be done. There is today. There is right now. She is here right now and she might not be tomorrow. That realization does not change the amount of faith and trust we are putting into her making a recovery from this, it just helps us to prioritize what really matters- spending as much time with her as we physically and possibly can. It has been very limited this week but that changes today. From here forward I will spend as much time with her as I possibly can without any guilt or pressures to take care of all of the things that can be taken care of when I may not be able to take care of her.

The past month has brought many, many emotions. Emotions more raw and intense than we have ever known....

Anger at a doctor for not telling us what we wanted to hear, anger at a doctor for reassuring us we were young and could have another baby, anger at a doctor for doing absolutely nothing for an entire week to at least try to help her, anger at ourselves for not holding her enough when we could, for not giving her those bottles at night when she was feeding, anger at each other for no reason at all just because we are angry and don't know who else to be angry at. And in all honesty at moments I have been angry with God. I have cried out to him " just take her Lord if you are going to take her" and in the next sentence" Please God just give me another day, just one more day." The anger is subsiding. Then came fear.

Fear...Fear that every time the phone rings it could be the NICU with bad news. Fear in walking away from her and having it be the last time. Fear that people have given up on her. Fear that our world is going to fall apart because of this. Fear that if we hold her we will actually cause more pain than comfort. Fear that she doesnt know how much we love her. Fear that our prayers are not enough. Fear that our love is not enough. Fear that we willl not make it thru. Then came sadness.

Sadness in watching her fight against the tube down her throat, fighting against the very thing that is saving her life. Sadness in her immobility because of the tube. Sadness in touching her, smelling her and kissing her knowing that some day I may not be able to do that. Sadness in hearing Dylan ask when are we going to bring home baby. Sadness in trying to figure out where her pain is coming from. Sadness in seeing the emotions on my husband face. Sadness in just seeing a new mom with her 3 year old and newborn. A sadness so heart breaking it is phyisically and horribly painful. The sadness is always there but today also brought peace.

Peace in feeling the hands of God on me again and easing my pain. Peace in knowing that those same hands are on Bella and easing her pain. Peace in knowing that I can love her while I have her. Peace in knowing that no doctor is going to convince me that my daughter is going to die anymore than I am going to convince them that my God is bigger than her lungs. Peace in knowing that I can give her a bath to comfort her. Peace in watching her delight in a toy mirror in her bed and when relaxed she is okay. Peace in knowing that there have been other families before us going thru what we are going thru right now and they are home with their beautiful child who's lungs were "incompatible with life." Peace in the love of her nurses and staff who give her their everything. Peace in the Dr this week who is doing everything he possibly knows to do to get her to wean on the vent. Peace that God's grace is sufficient.

Bella's status seems to change daily. It is hard for me to report the ups and downs. We have made improvements, we have worsened, we have made improvements again, we have worsened again. The important thing to know is that she is still here, she is still fighting. She still smiles on occassion and her eyes are still bright & full of life and fire. We are still here fighting with her and for her. Some wise words I heard today were: there would be no crown without a cross, there is no day without a night and there is no victory without a fight.
The only weapons we must carry is faith, trust and love.

Much love to you all

Wednesday, October 20, 2010

The Power of Prayer

We have much to update on Bella and much to say in regards to our situation. So sorry again for the delayed posts. Bella is holding tight and slowly improving. I have more to say on this but will be posting about it again today, want to get this out first.

During my morning prayer I started remembering all of the prayer requests and moments throughout these past five months that we know without a shadow of a doubt each and every prayer was answered. I feel moved to share with you today some of my memories.

-Even before she was born God started answering our prayers. When the Dr at Vanderbilt sent me home on Mother's Day refusing to prolong labor and told me there is nothing they could do, we prayed for guidance. The Lord sent us to Centennial where they immediately hospitalized me and kept Bella inside for 8 additional days.
-During my admittance into Centennial I met my "angel nurse" who came to me on every break and even on days off to share with me stories of God's will, who encouraged me to pray for acceptance of his will. For 8 beautiful days we prayed and I was given peace that no matter what happened the Lord has a plan. When Bella suddenly arrived although upsetting and scary we felt a peace deep down.
-After Bella's arrival they told us she would not make it 24 hours. Chris sent out requests for prayers and here we are 5 months later.
-The weeks after her birth brought infection in her blood stream that reached every part of her body. They told us she would not make it. Everyone prayed and here we are.
-During the battle with the infection the medicine caused her kidneys to stop working. Everyone prayed and she finally had the biggest, wettest diaper she had ever had on the exact day we sent the prayer requests.
-We all prayed her through the heart surgery where her saturations barely dropped and recovery went beautifully.
-We all prayed her through the eye surgery where miraculously she did not even need the assistance of the ventilator.
- We have prayed her from a mere 1 pound at birth to 6 pounds and 15 ounces today.
-Last week we prayed for answers and wisdom from our Dr's. We found some answers and hope that there are still some things that can be done to improve her condition even though some Dr's tell us other wise.

They tell us her 5% chance of survival has not changed. They tell us the medical facts are stacked against us. So today I ask each and everyone of you to help again in proving them wrong. Help us pray her through this time. Each and every prayer has brought us here, please help me to keep spreading the request for more. This week we are praying for continued improvements with her lung issues and that we are able to wean her pressures off the vent so that she can get to Vanderbilt for the trach surgery. It is going to bring her so much more comfort and quality of life if we can get this done.

Again we thank each of you for every single prayer and thought sent our way. We cannot express enough the many miracles we have witnessed from your faith.

"Only God can move mountains but through prayer and faith we can move God"

Much love to you all

Tuesday, October 12, 2010

"I Believe ( In Everything)- LIVE ON THE GREEN THIS THURSDAY

I believe in everything
from a river running backwards
to a bee when it stings
and I believe
in the voices out here
telling me to hold on
but let go of my fear

a childhood imagination
has been my salvation
one cloud at a time
lord I’m dreaming
let me look upon her
one more time
this beauty that I love – she’s why

I believe in everything, in everything I’m a believer
I believe in what I can’t change
in a hard lesson learned
and the strength from my pain
and I believe
in what I can’t prove
in the joy of not knowing
and the misunderstood

let go of my past
let go of my future
one cloud at a time
yes I’m dreaming
let me look upon her
one more time
this beauty that I love
before she’s gone, before she’s gone

I believe in everything, in everything I’m a believer
I believe in everything, in everything I’m a believer

the memory of one moment
is the beginning and the end of who I am

I believe in everything, in everything I’m a believer
I believe in everything, in everything I’m a believer
I believe in everything, in everything I’m a believer
I believe in everything, in everything I’m a believer

tell me about something tell me about something you believe in
tell me about something tell me about something you believe in
tell me about something tell me about something you believe in

This is the song that was playing on my ipod when I surprisingly gave birth to Bella at Centennial. The artist is JJ Grey, the album is Orange Blossoms. While I was in the hospital trying to avoid labor I would lay in bed and play this song to Bella. On the night she was born it was what I heard in the back ground. Hearing it now means more to me than you will ever know.

Chris has booked JJ Grey this Thursday for the Live on the Green concert series. It is a free event on the courthouse lawn and we are so proud of what it has become. I pray that he will play this song on Thursday and I hope that you come and will think of Bella if he does... If you can't make it pick up the album, it will move you.

Centennial NICU Reunion- We need your help!!!

Hey Friends,

This Sunday, October 17th, Centennial Hospital will be holding an annual reunion of all families that have spent time in the NICU. This will be a time to reconnect with their doctors, nurses, respiratory therapist and staff to celebrate the many miracles that have taken place in this hospital.
I know what they have come to mean to us so I can only imagine what a wonderful event this will be.

Chris and I will be volunteering for the event and are truly looking forward to being a part of this. They are still looking for volunteers so I am asking any of you that would like to be a part of a true celebration of life to join us. The event will be from 2-4 at Centennial. If you would like to be a part please email and let her know Telisha Cobb passed along the info.

In addition to volunteers we are looking for the following donated products or services:

-Videographer: This truly needs to be captured on film and you can use your God given talents to make it happen!

- Large pieces of satin or shiny material to cover a 10 x 10 pop up tent. The event is Aladdin themed.

-chocolate gold coins to fill a treasure chest a registration

-any other services that would go with the theme of this event and make this day truly special for the kids and families.

Please email me at if you have any questions or would like to help out. We hope and pray that one day we will not only be volunteering this event but that we will also be attending as one of the NICU graduates. Thanks to you all in advance!

Much love to you all


Sunday, October 10, 2010

Day 145

Well the remainder of last week brought us some possible answers and improvements from Miss Bella.

Our Dr informed us that she had spoken with an associate at Vanderbilt, he had so kindly presented Bella's situation at a department meeting to get feedback. He called back and said that some of the Dr's mentioned it sounded like she could be dealing with silent aspiration and may have aspirated (milk went into her lungs) while bottle feeding. Once the Dr mentioned this to us a light bulb went off in our heads and it began to make sense. She showed many symptoms the last few days before going back on the vent that lead us to believe this is what happened. It would cause respiratory distress, require higher oxygen needs and inflammation in the lungs; all things Bella is dealing with. We started her on anti-biotics early last week and she is definitely improving. It is hard for us to tell at this point how far back she went this time due to the fact that she has extremely premature lungs or if it was in fact the aspirating. We are hopeful that it is a bit of both. We have discontinued the steroids so hopefully once the inflammation clears up we can get a better picture of where we stand.

The Dr's did their care conference which did not bring any new ideas of treatments that have not been used so far. But we did learn that not all of her Dr's agree with the original statement that her lungs are lethally chronic. It is too early to tell. All of the Dr's did agree that Bella should go to Vanderbilt for a trach evaluation. We learned that she needs to have certain vent settings to be considered. Luckily this last week has brought us closer to meeting those requirements as we have been able to wean a great deal. Our hopes are to get her where she needs to be this week and work on the transfer the following if not before. We are at peace with the transfer to Vanderbilt. The Lord has sent many people into our lives with great information, advice and contacts to give us confidence in leaving our home here at Centennial. From what we understand the evaluation for the trach could take several weeks once we get there but will put Bella in front of many specialists that could have some new input for us. The trach will not help directly with the improvement of her lungs but it will allow her to have a quality of life while we patiently wait for her lungs to improve so that alone makes us very comfortable with the idea now.

We feel so incredibly blessed that the Lord did send some answers to us. In the silence I also hear "be patient" from Him so we will see what He has planned. We are hopeful, prayerful and ready to lean on the Lord to carry us thru what may come from here forward. It has been a long, hard road for all of us, the Lord knows our struggles, so we are working on not just turning over the big things to Him but every single detail of our life. I know that if we do we can make it thru this thing and come out better in the end.

Thank you all for the continued prayers. We are appreciative of every single one. She is a testament to the power.

Much love to you all

Wednesday, October 6, 2010

Day 141

The past few days have been relatively good for Miss Bella. Her sats have improved and her heart rate is not so high. Most importantly she is alert, spunky and showing us that infamous attitude that has assisted in bringing her this far. Her eyes are bright and she is comfortable. It seems like some rest and down time have been what she has needed. Not to mention some great care from our incredible primaries and staff at Centennial.

Today at 3 pm all of her Dr's are meeting to discuss a care plan. We have also been doing our homework so we will hear what they have to say and prayerfully decide where we go from here. We know there is hope no matter what we are told so all decisions will be made on that knowledge alone. We pray today that we are led to the path leading to the right answers. We pray that whomever handles her care from here forward sees those same bright eyes and hope for a quality of life. We feel strongly that she can feel the energy and attitudes of those caring for her and we cannot allow her to be taken care of by anyone that does not have the same faith in her that we do or that has given up. In the past few days we have reached out to many, hearing stories much like Bella's. All of the stories have something in common- the parents did not give up and they trusted in the Lord.

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged" (Deuteronomy 31:8)

Much love to you all

Monday, October 4, 2010

Bella, Dr Dylan, Nana, Yaya, Aunt Sissy and a few of our life saving, super hero care team celebrating at her due date party!!

Day 139

It was a long, hard weekend filled with many scary moments but yet we sit here today filled with peace, hope and determination. Our God is so good.

After going back on the vent on Friday Bella has been up and down. We have been reminded again that each and every day with her is truly a blessing and we should be grateful for every moment. Bella started showing signs of improvement on the vent with better saturations last night about midnight. Today she started nitric oxide for treatment for her chronic lung disease. The nitric oxide mixes with the 02 and carries blood to her lungs helping her to oxygenate. We saw her heart rate drop from 180's -190's to 150's- 160's and her sats go into the 80's-90's. We even saw her hit 100 a few times. We are hoping that this will help us wean her oxygen down, she has remained on 100% since going on the vent.

We are so appreciative to have our favorite Dr on board this week. This woman is brilliant, compassionate and has a true love for what she does. This weekend I had another Dr tell me that he thinks Bella has lethal chronic lungs and he does not see any hope for survival. While we appreciate the fact that he gives his honest opinion (which is never easy) we respectively chose to disagree and disregard. He agrees that Bella has proven him wrong many times. We were anxious to get our favorite Dr's opinion today as she seems to see the same Bella we see, full of life & hope. We asked her the question: does she agree with the last Dr's opinion? The summary of the answer is that if we look at the medical facts then yes the outlook is grim (it has been from the beginning) but if you look at Bella- how much she has overcome and the life she has shown so far then there is hope. She agrees that if she has come this far why should we give up now. We should leave no rocks left unturned.

So that is where we are today. They had to push our care conference back until Wednesday (we hope) where they will have the team of doctors together talking about any treatments that they know of or have heard of to treat her lungs. We are looking for any new clinical trials or treatments to treat Chronic Lung Disease and assist with the regeneration of new lung tissue. They will also be discussing a transfer to Vanderbilt for a trach evaluation. Our Dr has already contacted someone at Vanderbilt for insight to see if they have any ideas for treatments that are not being used at Centennial at this time. We are also looking for any hospitals in the U.S that is on the cutting edge for treatment options. We do not care how near or far we have to go, we will go the distance. We have faith that the Lord will lead us to the answers we need. If any of you have any experiences or medical contacts that may have any insight we would appreciate passing along this information and contacting me at with contact information. Again we are leaving no rocks left unturned.

Also if anyone has any experience or input on the following treatments again we would greatly appreciate your insight. These are treatments I have found thru research online. Our Dr is currently checking into them as well.
-TGF-beta (this is from an article written in 2007, at that time no clinical trials were being done) it is a protein that controls cellular functions. It supposedly improves lung development and decreases dysplasia.
-Sestrin- (this is from an article written in 2009, do not know if clinical trials are being done now) When inhibiting this antioxidant protein, it prevents the accelerated degradation of elastic fibers within the lungs. This is one of Bella's big problems with her lungs.

By no means do we think we know as much or more than our Dr's because we have internet access but we have seen that taking a proactive approach in her treatment can work wonders. We also have seen our blog and story spread across this country so we know how many people can be reached now by writing this.

We are not desperate, we are determined. We move forward with faith knowing that if there comes a time that we need to say goodbye to our sweet girl, if it is time to give her to the Lord,then he will let us know. We are not there so we will continue to fight with her and for her. We will continue to fill her with every bit of positive energy and every ounce of hope that we have, we will not give up or give in. We appreciate all of you more than you will know. We appreciate prayers for wisdom and knowledge as we search for the answers. We pray that some day we can tell her of your kindness and we know that she can feel your love.

Much love to you all

Saturday, October 2, 2010


Bella had to go back on vent about 1 am this morning. After a scary night of very low sats and sudden drops of her heart rate she is now stable for her condition. The Dr's are meeting on Tuesday to discuss our options however we have been told they are very limited at this point. We will see what they come back with and of course will be getting second opinions. She is still fighting so we are right here fighting with her. We have turned it over to God from the beginning so now is no different. We just now pray that we have acceptance of His will and peace with what may come. We know that no matter what the Dr's say He will have the final decision. We lift her up in prayer asking that she continues to be filled with light, love & life.

Much love to you all