Day 212

Well I got a little ahead of myself on days but confirmed that this is day 212...Day 212 is filled with many blessings yet again. Bella LOVES her new trach. She has been awake and active for the past 2 days. I can't express how excited we are to have her back with the ability to move around without the fear of the ET tube coming out or her gagging on it. I just know she has to feel so much better!

Recovery from this surgery has been a success to say the least. Her oxygen requirements have gone down instead of up as we had been warned they may. She is on 47% oxygen today and still weaning. The tricky part now is weaning her off all of the sedation & pain meds she is on, this is a slow process. Even after her next surgery it could take several months to get her off of all of them. Our next step will be to get the upper GI testing done to see if she will in fact need a nissen in addition to a gtube. We are told this test should take place next week and hopefully the surgery for both if needed will be the following week. Both of these procedures will be how we feed Bella to deal with her reflux issues and avoid possible aspiration. As we know from past experience our plan here is dependant on her staying well and no other setbacks. We will approach this prayerfully and accepting yet again that God's timing is always perfect.

I haven't really had the chance to talk about what the trach actually means for Bella and for us. This is something that will be a part of her life and ours indefinitely. Some kids have it for 6 months, some for 2- 3 years and some for the rest of their life. There is no way of knowing where she will end up. What it means to us today is that Bella has a quality of life while being dependant on the vent. She is more mobile, can be held more easily and we can start to work on her needs developmentally. It means she can rest more comfortably and we pray start to grow and thrive. We had to accept that we will not hear her cry nor will she be able to fully talk with the trach in, it was a big pill to swallow but given the other options seems small in comparison. We will start working on our sign language now and gladly accept that this is another way we can grow & learn from our little angel. It also means that once she comes home that she will need to have 24 hour home health nursing at first. That is if Tenncare doesn't boot us when she gets home as they have so many others....that's another blog! It means that she CAN come home while still dependant on the vent, however with MUCH lower vent settings (this could also take a while...) No idea or talk of when she may able to come home, we don't ask questions they can't answer. We have been told that it would not be surprising if we remained a year. We are prepared for the long haul but hoping/praying for the best. A year out of our life seems like nothing when we look at the big picture that includes her!

I realized that along the way we have not fully updated anyone as to what any of this means long term for us as we have and still are only able to take it one day at a time. However I feel it is important for folks to know that what we consider "good" and "great news" now for Bella carries many special needs and even when we get home there is a long road ahead. I also think that it is important to know that we are completely at peace with where we are and for what is to come. She is as God has made her and that is perfect to us....We are only now starting to fill Dylan in on the details of what to expect with Baby Sister, we want him to be comfortable with everything before he sees her again. We are making a Baby Bella doll for him complete with a trach and later a gtube so he can see for himself.

Thanks again for your continued support. I say this often but it truly means alot to us to have so many folks that care so much. I get messages daily from folks that are not obligated to do so checking in on Bella and giving us encouragement. The Lord has truly surrounded us with the most wonderful people that we did not know that well going into this. It is a blessing!

Much love to you all
Telisha

Day 211

We couldn't be more excited to report a great weekend of recovery for Bella. There was some concern on Friday because her heart rate was running low. However after a few tests we found that her heart actually looks better than the last time we looked at it & her hypertension is showing signs of improvement. We believe (although many argued with us) that her sedation was a bit heavier than she needed but we got past it. We are so incredibly grateful to our primary nurses whom have pulled together to form Team Bella, insuring that she is getting great care to see her thru this recovery. They are amazing advocates for her & we really trust their expertise.
They are starting to cut back on some sedations & she actually woke up some this evening. Bless her heart she looked very confused but is handling it well so far. She remains on the same vent settings that she went into the surgery with which is amazing & we pray they keep improving from here.
She will remain on heavy sedation until Tuesday when we do her first trach change & can rest comfortably after that. We will start learning how to care for it soon after & are excited to get comfortable with all of her needs. This surgery & recovery were like those in the past where we truly felt every single prayer. Again we were impressed with all of the concern, support & thoughts sent our way from all of you...
I look forward to having time (don't know when that may be) to really sit down and blog again. Parenting two kids in two different locations has proven to be a challenge but Chris & I are doing the best we can to keep up! We have found that even though our world may be put on hold the rest of the world keeps going around us.But God has proven that He will never gives us anymore than we can handle as proven this weekend! So we continue our journey with a heart full of gratitude & a life filled with God's grace...Hope everyone is enjoying the beautiful snow & holiday cheer!

Much love to all
Telisha

Post Op Update

The good Lord has carried us thru once again! Bella made it thru surgery beautifully & so far so good for recovery. They tell us the next 48 hours could be rocky but she looks wonderful right now! She will be under heavy sedation for the next 4-5 days so that she heals properly. Tonight was the first time we have seen her without tubes & tape on her face in 2 months. We feel incredibly blessed tonight & eternally grateful for the overwhelming support & love from all of you. I am off now to stare at her beautiful little face & spend the evening praying for a successful recovery. More updates to follow soon...


Much love to all
Telisha

Update

Well folks it has been a blessed week since my last update. Bella responded beautifully to the steroids and prayers. We are going to surgery tomorrow at 3:30 for the trach!!!! We could not be more excited to get this done. Like with any surgery we are looking at possible risks but we trust that the Lord's timing is always perfect & He has led us to this day. We will trust & praise instead of worry & stress. Please keep Bella in your prayers as the next 4 days are crucial for a positive end result. I will update post op or before. Thank you all for the endless support, continued prayers & love.

Much love to you all
Telisha

Day 198

Well this was another horribly eventful weekend for Bella. She basically did the exact same thing as she did the weekend before starting on Friday, worsening (as in saturations dropped to 0) on Saturday and stabilizing on Sunday. The frustrating part from our end is that we had a totally new staff on board than the weekend before so no one is acknowledging the repeat. We are told it is her chronic lung disease and that is what we are seeing. However after really talking to our primary nurses and putting our heads together we feel like we are having some ongoing issues with her fluid retention. She has only been weighed on Monday nights so it seems to us that by Friday she has built up so much fluid around her lungs it leads to her worsened condition. We know this from the dramatic increase in her weight and her improved condition once receiving additional diuretics resulting in enormous urine output. So we have asked that she gets weighed on Mondays & Thursdays so that we can keep a closer eye on this. We are hoping to not have a repeat of last weekend again....

Bella was without food for 7 days, receiving all nutrients thru a pic line. We feel certain that she had been dealing with reflux issues and possibly aspirating. We were hoping to see an improvement in her condition by taking the food away. We did for the first few days however she was so upset with no feeds and everything else going on we didn't get a definitive answer. So the Dr started her back on full feeds today and we are monitoring closely for signs of reflux/aspiration. There is a test that can be done for this and will be eventually but she is not stable enough to do it now. She will also need surgery to get a Gtube and possibly a nissen for feedings. The ideal scenario would be to get these when she gets the trache as well but we have to see if she is stable enough to handle all of them at once.

Dr Walsh asked to start another round of steroids on her, possibly continuing at a small dose for extended amount of time. He tells us that in the studies they have done the side effects are limited for a baby Bella's age. He says that developmental delays and such are not a concern. The concern is that it will stunt her growth while on them so they will have to pay extra attention to nutrition and weight gain. The benefits outweight the negatives at this point. We started her on them early Sunday a.m. and seeing great results so far.

Today she has been between 55-65% oxygen with sats in 80-90s. We are praying to continue weaning her this week and keeping her this way. From our end we have a checklist of things that have happened in the past that have taken us backwards and we will be following up daily in regards to anything we may see. We are prayerful that some TLC, attention to detail and the Lord's guidance will get us to where we want to be.

Her primary nurses continue to amaze us with their skill, genuine love and experience. We just need to find more of them. We have had to ask that a few nurses not take care of Bella lately. She is very high maintenance and without the experience of dealing with a chronic baby like her many nurses are not a good fit. We are praying that the Lord sends a few more experienced and willing ones into our life.

If it is God's will then this will be a week of change! We continue with prayer and more love than we have ever known. We are embracing the holiday season and all that it means. We wish the same for all of you!

Much love to you all
Telisha

Day 190

Well the past 4 days have been the worst and best that we have had in a long, long time..maybe ever. This blog could be lengthy, I could give you the short version but it would not sum up the insanity of it all or the blessings.

It started with the phone call from the Dr at 9 pm on Friday night as I was driving with Dylan and my mother in law, telling us that her heart was showing signs of failure and things did not look good.
It proceeded with a long discussion with Dr on Saturday about possible outcome of the pulmonary hypertension. Where we go from here would depend on that night or next few days...
It worsened severely on Saturday night when Dylan started running a fever & throwing up, Chris was working and I was home with Dylan, then as the night proceeded Bella was dropping her saturations into the 20's, 30's, 40's, 50's and remaining in the 60's for quite some time.
Sunday was one of the worst days I have had possibly ever in NICU. The Dr's told me they felt Bella was VERY unstable and possibly would not make it thru the night. They closed the curtains to our pod, had me hold her and prepared me for the worst. The weird thing is that I only saw her saturations drop into the 70's the entire time I was there and by the time I left (MUCH later) she was in the 90's so it made the whole thing even more confusing. Added to the roller coaster of the weekend we had not one, not two but three discussions about continuing her care, what we want to do if she coded and also heard over, over and over the term "prolonging the inevitable."
Sunday night things started to change with the blessing of an incredible primary nurse with years of experience and an amazing gift for caring for chronic babies. She noticed that Bella had way too much "stuff" coming out of her OG tube that is used for venting her feeds (the vent helps to remove the air from her stomach). From what I understand this should not be happening with the placement of her feeding tube (NJ). The short of this says that she is probably aspirating (formula goes into the lungs) which would cause her much worsened pulmonary hypertension, lowered saturations and overall worsened condition. It shows she has severe reflux. We also discovered that the nurse that was on Saturday did not vent her the entire night and her stomach went from measuring in the 20's to 40, it was filled with air and reflux. This could credit the horrible night she had on Saturday.
Today we woke to find Bella had a decent night but still dropped her saturations into the 70's but mainly stayed in the 80's most of the night, on 100 % oxygen and 20 ppm nitric. Today also brought on a change of Dr's (they switch out every 2 weeks). Bella's original attending, Dr Walsh, was back today. He is the Chief of Staff for the NICU, the Dr we first spoke with before moving Bella to Vanderbilt and to be quite honest I have been scared to death of his very honest and direct bedside manner. He trained most of the Dr's at Centennial so I also know he is credited for being the most skilled and experienced Dr that we could have. We fully expected to come in and he would give us "the speech" yet again. My prayer this morning walking into NICU was "Please Lord I beg you, do not let me hear one time today that my daughter is going to die" I felt like I could not take hearing it one more time, even though I know not to listen. We walked in to find the Dr rounding and doing his evaluations. He tells us that he does not think that her heart is failing nor did he say that they are doing everything they can. Instead (thank you Lord for this) he says "these parents have been told over and over that Bella is going to die for the past 6 months so if she actually does I have a feeling it would be a big surprise as she has proven us wrong every time. She has made it thru so many struggles, she is here 6 months later and we owe it to her to rule out every possible scenrio." Thank you Jesus!!! He didn't give up or give us the worst case scenario! He didn't mention " prolonging the inevitable." I truly credit this to the Lord and Him giving the Dr wisdom. He worked out a careplan to observe the reflux which also shows he listened to our primary nurse (this shows he is brilliant after all ;), follow up with the Echo for her heart (which is showing mild to moderate hypertension now), and watch to see if her condition worsens then a slew of other order to address various things like the viral infection we have insisted she may have.
The remainder of the day brought few desaturations and an overall more stable condition. She had infant massage, a professional photoshoot and a nice warm bath. She handled each of these beautifully and every moment, by the grace of God, started to erase the horrible moments from the past few days. She even showed Auntie Bryn her big ole smile. For any of you new preemie mom's reading this I just want to say that there is something so therapeutic and bonding about bathing your child...We also discovered that when her feeding tube was disconnected during the bath and such she saturated in the high 90's and even hit 100 on occasion. The discussion now is possibly making Bella NPO (without feeds), feeding her via IV or PIC line with TPN'S and lipids (fluids) while we let her lungs/heart heal enough to get a surgery that would fix this problem for good. We got out 20 CC's of "stuff" in her vent in just a few hours. The incredible primary nurse is going to watch her tonight to see if it should take place immediately or if the Dr should make the call in the morning. Also we weighed her tonight, she went from 7 pds and 5 oz to 9 pounds and 5 oz in a week. While it is most wonderful that she increased her weight we have to be cautious that this could be due to adema (water retention verses healthy weight gain). This could also credit to her worsened conditioned.

So in 24 hours I have held my daughter for what was "possibly the last time" to holding her while we change her sheets. We have heard that we are "prolonging the inevitable" but are responding now that all of us are "prolonging the inevitable" but we still get out of bed in the morning, take our vitamins, go to the Dr when warranted and rule out every possible scenario before listening to an opinion that we are going to die soon...We are demanding the same for Bella and they are doing it...We have been reminded that the Lord will not give you any more than you can handle. We are reminded that He is the ultimate healer and advisor. We have been reminded to never take anything for granted, especially your family and friends- NOTHING matters more. We have learned yet again to go with your instinct and most importantly to not only talk to the Lord but really, really listen. More updates to come...

Much love to you all
Telisha

Day 188

We spoke with the Dr today that has been on call for the past 2 and a half weeks. We have grown rather fond of him and have a great respect for his skills and bed side manner. He is brilliant and realistic without losing his sense of compassion for the parents and patient.

He tells us that the Echo is showing severe pulmonary hypertension and the right side of the heart is much more strained than it was in her last echo that was taken 3 and a half weeks ago. He gave us the cold, hard facts and wanted to hear what we had to say in return. Of course we are ever optimistic, prayerful and continuing to fight with her. We are realistic as to what the medical facts and statistics are telling us but we are insistent that we are still here for a reason and only the Lord knows what that reason is and only He will tell us when it is time to let go. The Dr agrees that we should remain prayerful that with time and proper nutrition she may overcome this as well. He just wanted to make sure that we were aware of the medical facts and what could occur should she not show signs of responsiveness to the treatment over time.
We were disheartened to find her requiring 100% oxygen this morning. Basically she has gone from 65 % to 100% in a little over a day's time. The Dr has checked for infection as this is a rather sudden change in condition but nothing is showing up yet. He says that at this time he has to credit it to the nitric wean and her heart not tolerating. They have increased nitric back to 5 ppm now. Her saturations are good when she is calm, she has been in 80s to mid 90s. She just happens to drop down when she gets irritated and she is slow to come back up. Despite everything going on she looks good and all else is going well.

The news that came last night really shook me up because it is something that I have feared from the beginning but everyone including Vanderbilt in the beginning had told us the hypertension is moderate and not a factor in her frequent set backs. As a parent I feel like I should have pushed harder for further investigation and gone with my gut instinct on this one. I won't get too caught up in it as we are following the path the Lord has set before us and this is where it has taken us so I have to think every step along the way is part of a bigger plan. I only want to say that if there are any preemie mom's out there just going into this situation please, please be an advocate for your child. Do not be afraid to speak up, do not second guess your intuition as a mother and be persistent. Someone will eventually listen to you and if not then at least you know you have done everything you can to help.

We have come to love our new home at Vanderbilt, we have come to appreciate the staff and they have come to know and love Bella. She gets spoiled by her primary nurses (which we finally have a few exceptional ones!) and she has won the affection of the Dr's and nurse practitioners. We feel with all of our hearts that the Lord led us to the right place at the right time. Our family at Centennial has remained as wonderful of friends as they were caretakers with frequent visits and phone calls. We have made some life long friends in this journey and we are eternally grateful for that.

The Holy Spirit has comforted us today. Even after the cold, hard medical facts we are upbeat and ever hopeful. We pray for growth for Bella and responsiveness to the treatment for the hypertension. We are truly thankful for our God and being able to turn all of this over to Him....We continue to follow the path He has set before us with love, hope and prayer.

Much love to all
Telisha

Update

Well this blog is long overdue....I have few excuses for the lack of updates other than it has seemed to good to be true. Somehow my mother's instinct on this has unfortunately proven to be right once again.
Since transferring to Vanderbilt, Bella has done the best in many aspects that we have ever seen her do. Just a little over a week ago she was on 43-50% oxygen. The best we have ever seen. She seemed to be moving forward at a wonderful pace. They started weaning her pressures on the vent, weaning her nitric, weaning her pain medicine and working towards her trach surgery or possibly extabating her from the vent.
Tonight I got a call from the Dr, it is never good when a Dr calls you at 9 pm on Friday night. He is compassionate and a parent so knew that I would call to get a report from the nurse. He wanted to give me the news instead.
She had an Echo today. This shows what the heart looks like. He tells me the right side of her heart is showing extreme stress and is very concerning. It shows that her pulmonary hypertension is a major concern. He says that 50% of children outgrow this condition, the other 50% have more fatal outcomes and the right side of the heart gives out. He says that her gestational age and lung condition more than likely puts her in the 50% fatal outcome.
We are going in to meet with him tomorrow to discuss possible care plans from here. He says they need some time to discuss and figure out where to go. Tonight she is on 75% oxygen, gone up from 1 ppm nitric to 3 ppm and heart rate around 180. We have many, many questions that will be addressed tomorrow and even more so on Monday when we speak with the cardiologist.
I have had many, many talks with Dr's with very grim news. It should get easier but it doesn't...As optimistic, prayerful and hopeful we are,it is still very, very upsetting.
So tonight I pray for guidance for the medical staff as to her treatment. I pray for healing from our Lord that can provide divine intervention. I pray for peace and wisdom to ask the right questions and provide the right feedback to assist or motivate. I pray for trust that God does not have a plan B. I pray for peace. I pray for acceptance of His will and I pray for a gracious heart that appreciates we have been given 6 months that we should not have been. I pray that the Holy Spirit comforts me and takes away this hurt in my heart, this huge knot in my stomach that won't allow me to normally breathe , eat or rest and this overwhelming since of sadness that comes with the thought of losing her.
I'm sorry that I don't have more uplifting news or thoughts. I pray that tomorrow I will.

Much love to all
Telisha

Day 172

Well Miss Bella is having a series of good days this week. She is starting to adjust to her new surroundings and folks are starting to see the sweet, alert little angel we all love. Even the Dr admitted yesterday that he got to have a moment with her where she looked at him with those big ole eyes and was calm & alert.
We are very impressed so far with her care plan. They have really gotten to know her lungs and heart already. Their plan is to be proactive instead of reactive. She is currently on a short round of steroids because she was so sick and we needed to do something extreme to change the direction we were going. She is responding beautifully. She will also remain on inhaled antibiotics for an extended amount of time. They have been seeking counsel from the Cystic Fibrosis specialists as to treatments. She does not have CF but her lungs look very similar. Her response to the antibiotics and steroids are showng that inflammation & bacteria/infections could be the culprits of her many setbacks so at least we know what to focus on. The immediate plan is to get her vent settings down & get the trach surgery asap. We are getting closer. She is on 75-85 % oxygen and 10% nitric. They are also keeping her oxygen on the high side to treat the pulmonary hypertension as it is very important we keep her heart in good condition or we have a whole new set of major problems. They tell us the biggest factor in her outcome will be nutrition, nutrition, nutrition...she is still on continuous feeds and they are increasing feeds almost daily. We have always heard that if she could breathe as good as she eats then we would be home already so we are hopeful she will continue to gain weight & grow. She is 7 pounds and 5 ounces now!
As far as a long term outcome or diagnosis we have heard some pretty ugly things but again we have heard these before she was even born and we are still here. We look to the medical team for immediate care plans and we look to God for the rest. We feel strongly that He will guide the hands, hearts and minds of those that matter. Only time shall tell what His plans are for her, we are hopeful and prayerful they involve someday coming home to a family that loves her with all their hearts.

The adjustment away from our Centennial family continues. I have to remind myself daily that this is not about us, it is about Bella and making sure she is in the place that she needs to be. I have to not let myself get caught up in the little gripes that come with unfamiliar hands treating my child and trust that each one of them are in our life for a reason. Hopefully they will remember that I am just a Mother that wants the best and at times feels so out of control of my own daughters comfort level. So I pray for patience for myself and for all of her caregivers. I also realize that they might not be as scared of the "pissed off 7 pound baby" as they are of the crazy, demanding Mother so I will take some deep breaths and TRY to chill out :)

Our journey continues with prayer, love and hope...

Much love to you all
Telisha

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
Telisha

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
Telisha

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
Telisha

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
Telisha

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
Telisha

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

I BELIEVE (IN EVERYTHING)
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 ginnydenise@gmail.com 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 telishacobb@gmail.com 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

Telisha

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
Telisha

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
Telisha

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 telishacobb@gmail.com 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
Telisha

Update

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
Telisha

Day 134

I have attempted to update the blog several times over the past few days. I find myself at a loss for words or news on where we stand. Honestly we don't know. Bella is back on cpap, almost as soon as I typed the words in the last post saying that she was on high flow cannula for now we got the news they had to switch her back to cpap. She is still requiring 100% oxygen from that as well. She has been extremely tired and working hard to breathe over the last few days. Today she seems to be more alert and comfortable. We hope that continues. It seems that we are back to "watch and wait" and I am reminded again to turn it over to the Lord.

It also seems that we are in need of another care conference with our doctors to give us an idea of what our options may be from here. We have heard the term "trach" over the past few days for the first time regarding Bella. I have started research on this and feel like while we are not quite there yet, we should start prayerfully considering this option. Here is some info on this procedure:

"A tracheostomy is a procedure that creates an opening through the neck into the airway through which a tube is placed. The tube, called a tracheostomy tube, allows air to flow into the lungs and allows the airways to be suctioned.

In preemies, tracheostomies are usually performed when premature babies cannot breathe on their own for long periods of time. Tracheostomies allow patients to be mechanically ventilated without a tube in their mouth or nose, and allow mechanical ventilation to stop and start more easily. Tracheostomies may also be performed when babies are born with conditions that make breathing or clearing the airway difficult or impossible. "

This procedure would allow us to bring Bella home sooner. It could be removed once her condition (lungs) improves, which would hopefully be in a few years. Personally after doing my homework on it I am not as scared as when I first heard of it. It requires much more training on our part on how to take care of her and some homehealth nursing but I know God isn't going to ask us to do anything we are not capable of doing. I would do anything to see her breathe comfortably and continuously so if that means bringing a little portion of the NICU home with us to get her home then so be it. But like I said I don't think we are there yet however as soon as I finish writing this blog the news could change....Another struggle with the idea of the "trach" is that we would have to have Bella transfered to Vanderbilt Children's Hospital- the place that refused to try to keep me from going into labor, the place that gave me the option to abort her but no option to save her, the place that took 7 hours to get an ultrasound done when I had gone in thru the emergency room with preterm labor signs.... This is yet another step in our faith journey that we will have to take, we will have to walk forth in comfort that the Lord walks before us AND I will have to be there with her 24 hours a day while she is there. I know some wonderful people that work at Vanderbilt so I hate to "bash" that hospital but I am certain had they been in my position they would also be hesitant.

In preparation of a hypothetical move to Vanderbilt I am organizing medical information on Bella's history to date. I am reminded, amazed and completely gracious for how much she has overcome in the past four months. Looking at this list of everything she has been thru takes me back to the moments after her birth when we did not know she was even alive, to the weeks after that when we did not know if she would make it and it brings me back to now. Where I sit here today as a mother that has been given the blessing of holding, feeding, bathing and caring for this precious, beautiful girl that was given a 5 % chance of survival. We will continue down the path that God has set for us, we will continue to pray, we will continue to believe and she will continue to be the greatest gift we have ever recieved.

We are also still praying for my Aunt Daisy in Memphis, who is still on the ventilator and showing little improvement and for Maddie, who is still at Vanderbilt Children's Hospital fighting a bacterial infection in her blood stream and the many complications that come along with that. I pray that the families of both can close their eyes as I have my own and feel the powerful peace and warm embrace of a wonderful God.

Much love to you all

Telisha

Sending up prayers for many this Sunday...

We ask all of you to keep the following folks in your prayers.

My Aunt Daisy who is in critical condition in Memphis. One of her lungs has collapsed, she has been on the ventilator for 5 days and is showing no signs of improvement. We send our love & prayers for her, my Uncle Charlie and cousins Neal & Chad. My mom is there with her now as well. She is so very loved and we just pray to see her make a turn around here.

We also pray for a little girl named Maddie whom is at Vanderbilt Childrens Hospital. She was a former preemie at Centennial, has been in Vanderilt dealing with some preemie related issues and has contracted a bacterial infection in her pic line. The next 12-24 hours are crucial. We just pray for this little girl who has fought so hard to get so far. We pray for her amazing family that has stood beside her every step of the way.

Lastly we are praying for Bella...she has required 100 % oxygen for the past several days & seems to be working harder to breathe. She is still on the nasal cannula for now. We think we are seeing some rebound from the decrease in steroids. We should see the rebound peak here so we are praying that she doesn't regress too much more before this happens.

The power of prayer...we are living it and believing in it more than ever...

Much love to all
Telisha

Day 127

Well Miss Bella is officially 2 days old according to her original "due date" as of Monday. We have had many celebrations that have kept us from updating the blog since the last post.

On Saturday we celebrated the upcoming birth of Carson, one of my best friend's little one, that we will get to meet in November! We also celebrated the marriage of our good friend's Stephanie and John. I personally have had little interaction with anyone without medical training or over the age of 3 years old, so some time out with good friends was a welcome break.

On Sunday our INCREDIBLE staff at Centennial arranged a due date party for Bella where Dylan got to meet his little sister and assist with giving her a bottle. We had all of our family including both grandmothers and aunt under one roof and I have to tell you it did my heart and mind good! Nurse Susan snapped lots of photos for us which I will be uploading in a future post when I have more time. Watching Dylan & Bella interact for the first time will be a moment I remember forever. He is such a proud and compassionate big brother, I could not be more proud of him!

On Monday I finally got to meet up with a fellow preemie mom who has been a huge source of inspiration thru her blog and amazing 23 weeker preemie. An hour of chatting with her was amazing therapy and makes me realize the many rewards we will reap from our journey in the NICU.

Now on to our little rockstar! Bella is holding tight on the high flow nasal cannula. She is still bottle feeding. Today the order was written for her to bottle feed 6 times per day. We are going to take this as it comes and not push her too hard. Her saturations are a little rockier today so I want to make sure we aren't over doing it. She is also going to get hydrotherapy from Miss Tasha 3 times per week. She loves it! We practiced infant massage on her back today. I really believe in this therapy and can see vast improvements already. Bella is weighing in at 4 pounds and 12 ounces today. She has been moved to a big girl crib and I can hold her easier and more often now! They decided to continue on a small dosage of steroids this week so we still have to see what the rebound effects will be. We have no idea where we are in our journey here, how much longer we will be in the hospital SO we are just truly enjoying each day and moment as it comes and all that it holds. We will get there some day so we don't want to miss out on today trying to get to someday. God's grace is sufficient!!

Again thank you all for your continued prayers and support!

Much love to all
Telisha

Day 122

Well the past 2 days with Miss Bella have been very rewarding... She tried to bottle feed for the first time yesterday. Our expectations were low for the first time but she did it AND did it better than we could have hoped! She LOVES her bottle and more importantly her food. She had an evaluation today to make sure she was doing it correctly and to get the okay to continue. She finished the whole bottle today and did excellent! She can now bottle feed once during the day and once during the night. I had never really thought about how much it takes to eat and breathe but she can do both for now so that is huge!
Today Miss Bella also got to try hydrotherapy with Miss Tasha. It was spa day! She sat in a nice warm bath with bubbles and I got to give her infant massage. She was a little skeptical at first but she sure got use to it and again responded great! We will do this therapy twice a week on Mondays and Fridays. I can't wait to post the pictures of the progression of this! I have tons of new photos of our beauty but we have had to relocate for the past few weeks and I don't have the things I need to upload. The relocation story is a whole new blog...We will get back to that one :)
Tomorrow Bella begins to taper off of the steroids so the true test of her progress remains to be seen. However this time we go into it knowing the possibilities and carrying with us the experiences of the past few days. I hope to make it thru this "rebound" with full faith and trust in God's plan and with gratitude for the blessings that we have already received.

Much love to you all
Telisha

Day 120- Happy Neo-Natal Nurses' Day!

We learned early on that our nurses in the NICU are not there for a job or career, for most it is a calling. A calling to nurture, to heal and to support these families that are going through one of the hardest times in their life. Aside from our faith the staff at Centennial has come to be our rock. Our primary nurses who voluntarily signed up to care for Bella on good days and bad, not knowing what the outcome of our situation may be any more than we do but standing beside us each step of the way. The other nurses that stop by to check on her even when they don't have her as a patient. They have become our NICU family, our mentors, our friends and the most trusted baby sitters a person can find. We also learned early on that if you want to walk out of there each day and leave your child behind you must trust those providing her care, we are so blessed to say that we have found that. We can lay our heads on our pillows at night and sleep knowing that no matter what, Bella is getting the best care that is out there. So today I say thank you to each one of you that loves Bella as your own, that works 12 hour days, that lifts me when I am down, that gives us the honest truth no matter how good or how bad and that is using your God given gifts to better the lives of so many. Thank you from the bottom of our heart. Each of you have made me look at my career and ask am I fulfilling my calling. You have changed us and no matter what our future holds each of you will always hold a special place in our heart and memories. Happy Neo-Natal Nurses Day to each of you!

Bella is celebrating this day on the high flow nasal cannula and loving it. The Dr says lets ride the wave and see where it takes us so while she is on the upswing it is worth a shot. Again we don't know what the story will be when she starts to rebound from the steroids but we sure are enjoying what today brings. She is on 70% oxygen now and again if she can stay calm she does well. It is a good day surrounded by good people!

Much love to you all
Telisha

Day 119

Well the past few days have brought many blessings for us and Bella. They surprised us with an extabation of the vent on Sunday morning. Bella has been holding strong with assistance from the cpap machine since then. She is being weaned from her nitric oxide for the pulmonary hypertension. She will be off by morning and hopefully the medicine will be sufficient this time. She is on 70-78 % oxygen. She is receiving a low dosage of steroids every 24 hours now. The Dr on this week says she will discontinue those after 7-10 days as she has had such a quick response that she feels it is hasty to say that she will need chronic (continous) doses just yet. We feel much better about this plan. If she starts rebounding after they stop then we will just start the process over. As the Dr says we are on Bella time & she (I prefer to think God) is writing her own story. So only time will tell. We are ecstatic and hopeful yet we learned the hard way not to get our hopes up just yet. She weighs 4 pounds and 6 ounces now. She is absolutely the cutest thing you have ever seen in her little outfits. They have also written the order to move her to a crib once she is off the nitric and one is available. She will hopefully leave her little home in the isolette sometime soon. She is enjoying crib toys & music now as she needs more stimulation as we get closer to her due date which is September 20th. I will be bringing in a swing this week to try out as well.

So we continue to watch, wait, pray and enjoy this time while we have it. And we trust that no matter what tomorrow brings God doesn't have a Plan B...

Much love to you all
Telisha

Day 115

I have been praying all week for peace.

It came today.

It came suddenly and so purely that I am awake at 4:30 am ready to see what this day brings, ready to take my next step trusting in His plan (even though I don't fully understand it). His peace started filling me today while visiting Bella. I have said before to look into her eyes is to see the power of God's almighty hand. It held true today as she was bright eyed, alert and truly engaging all of us with her beauty.His peace came as I held her, bundled up tight, smelling like only newborn babies can smell. His peace came in the company of a mentor that told me "God does not have a plan B." His peace came on the ride home when I smiled, really really smiled for the first time in days. His peace came when I reached to turn up the radio & sing at the top of my lungs. And He made his grand finale when I pulled into the drive way to see a big beautiful rainbow over the top of the house. A symbol of hope, not hope that Bella is going to make a full recovery as I think she should but hope that no matter what, no matter what the plan may be He will never leave us or forsake us.

Bella is making some progress the past few days. She is now on 75 % oxygen instead if 100 %. Her blood gases are better. She is definitely feeling better over all. We have a ways to go as she is still needing some high pressure settings from the vent but we will get there.

Thank you all for the many many prayers. I can say confidently and without a doubt that we are truly truly blessed.

Much love to you all
Telisha

Day 114

Well I spent the entire day yesterday whispering "I trust you Jesus" By about 5 pm I actually meant it...it was the longest, hardest day I have had in a long time. I felt instant relief when I was finally able to turn it over to Him again and renew my faith.

Bella has been on 95-100 % since going on vent. She is very tired & resting lots. She seems like she is feeling better. We are backed into a corner for treatment options. There are no other tricks or standard things they can do to try to get her off of the vent. The only options are to use more steroids for an experimental trial (which means she stays on them for an extended amount of time til she is off). We are heavily cautioned about this as they are controversial & have some side effects like mental retardation, stunted growth & makes her more subsceptible to infections. The other option is to do nothing, wait on her to grow & hope that she regenerates enough lung tissue for them to function. This option is highly unlikely as the ventilator destroys any new tissue that is regenerated & her lungs are so bad that they would probably not catch up.
We prayerfully choose the steroids. We feel again that nothing else matters if she can't breathe. Nothing else matters except one day bringing her home to love. Love unconditionally. We went into this with no expectations of a "perfect" outcome, this is the path that God has chosen for us. I feel with all of my heart that He has brought her this far for a reason, that she is ours. I just don't know how long it will take or what special needs she will have when we get there nor do I care. I just want to get there...
She has started the steroids today so I will keep you posted on her hopeful progress.

Much love to you all
Telisha

Day 113

We got the call about 10 pm last night. Bella had to go back on the vent. They tried everything including a blood transfusion but could not get her to progress. The xray is showing that both of her lungs have collapsed so she was not able to make them work without the vent. Now all we can do is watch, wait & pray that they will heal & grow on their own, which will be a long long road ahead. I am heartbroken, scared & deflated. I am working on turning it over to Him, just not there yet...Bless her heart, she tried so hard & I am amazed at her will. I will find that same will in myself I sure hope to keep pushing on thru this. Thanks for your continued prayers, she needs them now just as much as she did 3 months ago.

Much love to all
Telisha

Day 111

Well things change fast in the NICU, that cautiously optimistic remark I made in the last post is holding true. Yesterday Bella's progress started going backwards until last night she ended up on the cpap machine again for assistance breathing and back on nitric oxide for the pulmonary hypertension. I held her for 4.5 hours straight yesterday, we thought that may help. While it did for a little while it was no fix for her problems but sure did make me feel better. Most probably what we are experiencing now is a "rebound" from the steroids. She has been off for 9 days now and we were warned there could be a rebound period. So we are hoping that she does not rebound back to the ventilator and can hold tight on the cpap. She is on 95% oxygen now and we really need to see her under 85%. She has also slowed down on urine output and is retaining fluids which doesn't help with the breathing.

We continue with prayer and pouring every ounce of positive energy and love into her. We continue to remind ourselves that God walks before us, there are no surprises for Him so we must choose to believe that we are experiencing His plan. They tell you the NICU is a roller coaster, we have experienced that. But I am going with another preemie mom's description now: it is more like Chinese water torcher....There are no holidays in NICU but this too shall pass and we will pray our way thru.

Much love to all
Telisha

Day 109

This is the first post that has come in the quiet of my home in front of an actual computer since the boys have returned. The quick updates this week have come from my blackberry while at the hospital with Bella or playground with Dylan. There is much to update!

Bella is amazing. Simply put....she continues to amaze us in so many different ways: spiritually, medically and parentally. The fact that she made it thru the eye surgery without going on the ventilator is an example. Her respiratory issues should have made it impossible for her to handle medications that slows down her breathing without needing some assistance from the vent. Her fiesty nature should have caused her to be her own worse enemy for this procedure, where it was necessary to be still. Yet the day of the procedure you could feel the hand of God on her early in the day (this is a quote that came from our nurse, not my mouth). She was relaxed, her saturations went up instead of down...there were no tantrums, there was no fighting. Not to take away from the hard work that our nurses put in to keep her this way throughout the procedure but it truly surpassed anything that any person or medicine could physically do to make this possible. I will forever remember the converstation with Dr. Wallace upon her completion. A man that has probably done hundreds if not thousands of these surgeries, smiled at us with complete and total satisfaction. A satisfaction only found when you are truly using your gifts from God to change lives. He had only realized how premature Bella was during the surgery, how incredible it was that she was even there at that moment. He told us of this and looked into our eyes and said "today is a good day...."
Since Wednesday we have had a series of good days. Bella is requiring less oxygen than before. Her eyes are healing fantastically. She is more relaxed and is gaining lots of weight. She is now 3 pounds and 14 ounces. She was 3 pounds and 6 ounces earlier in the week. She can regulate her own body temperature and (not surprisingly) has a tendency to run on the hot side. She is taking 30 cc's of food. She is being taken off of caffeine (that was initially used to keep her from having apnea spells) because there have been no spells. Her pulminary hypertension is being treated medicinally (with Viagra, go figure...) And she has been weaned from 6 liters of oxygen to 4.5 this week. Our next endeavors (hopefully this week) should include trying to bottle feed her, moving her to a crib and being moved out of the most critical section of the NICU. Our goals long term are to continue weaning her down on liters of oxygen needed. She should be at under 1 liter (like .01...) before she can go home. This could be the part that takes a while but she is Bella so who knows! Another advancement with Miss Bella is that she (and us on occassion) is working with Tasha. Tasha has been waiting to work with Bella for a while now and just needed her to be off of the vent. Tasha is doing physical therapy with Bella and infant massage. She is teaching us too. She is working with range of motion in her arms and legs. Bella is responding VERY well to it, she loves her massage. Except for the butt massage, she definitely did not like that and let everyone know it quickly. We think it may be post traumatic stress from the "silver bullet" (stool softener)...

So here we are...109 days. Some of the best and worst days we have ever known. But we are here. We are exhausted, exhilirated, ecstatic: all at once. AND we are cautiously optimistic not knowing how long that it will be, what other set backs we may face. But we are here. Loving one another more than we ever knew we could, loving all of you for standing beside us, witnessing the all powerful, all mighty hands of God working... trusting & believing that with His guidance we will have the strength, the health, the faith and the patience to one day (no matter when that may be) have our family...all 4 of us...under one roof. Thank you so very much for your love, prayers and faith...

Much love to you all
Telisha

Post Surgery!

Sorry for the late update! Bella made it thru the surgery beautifully, NO vent necessary. Another one of God's great miracles. We are incredibly thankful to Dr. Wallace, Nurse Susan & Nurse Mary for getting her thru it. It was a labor of love! Dr Wallace felt like it was great timing, aside from wearing glasses by preschool age we are hopeful that the surgery took care of the ROP. If this had happened over 20 years ago there is a big chance that Bella would have gone blind with the disease. Praise the Lord for modern medicine & miracles.
Today she is on 65 % oxygen and resting comfortably with tylenol to ease the pain. Her eyes are a bit swollen and red but a small price to pay...
Dylan & I are having a mommy/Dylan date today. We are headed to Huntsville to see the Treehouse exhibit at the Botanical Gardens. Twelve different treehouses (including an Star Wars Ewok Village...) to play in. We are excited to spend some quality time & get out for the day.

We hope that Bella has an uneventful day full of rest and recuperation. Thank you again for helping us pray thru it!!!

Much love to you all
Telisha

Prayer Request

We need your help praying thru another set back here with Bella. Today at 3:30 pm she will be having laser eye surgery for Retinopathy (sp?) Of Prematurity. The Dr has seen some development of the condition and wants to operate immediately. The surgery is standard for preemies however it is typically done while on the ventilator. Bella has remained off of the vent and on high flow cannula (oxygen) since our last post. She has been doing relatively well with it to date. They are going to attempt to do the surgery without putting her back on however there is a very good chance she will have to be reintabated during the procedure. Our fear there is that it could be another slow process getting her back off now that her steroids are completed. SO we are going to pray thru this like we have done all of the others, we are going to trust that our faith will see us thru and know His grace is sufficient.Thank you for your prayers!

Much love to all
Telisha

Day 102

We have big news! They decided to try Bella on the high flow nasal cannula, which is the next step down from CPAP, AND she has been on for 24 hours now! She LOVES it! It is a much more comfortable way to breathe. She has required only 50 - 60 % oxygen and as I write this her sats are at 98 so she can be weaned again!
There is SO much to share about this exciting time but I am limited so will continue later!!!

Thank you thank you thank you for your continued prayers!!!

Much love to 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

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...