The journey continues....

Some of you folks reading this saw my post on Facebook yesterday as to our current situation at Vanderbilt. For those of you that did not I will start over but this time a bit more informed and not quite as mad and frustrated.

I will start at the beginning so this could take a while...For the past 2 weeks we had a Dr on that runs the follow up clinic at Vanderbilt where all of the NICU and preemie patients come after discharge. I will preface this by saying we have tried to learn to appreciate the good qualities in each Dr (we get a new one every 2 weeks). For this particular person she got Bella's gtube & nissen surgery in motion when it had been put on hold for an indefinite amount of time. For that we will always be grateful. However also she started pushing for hearing tests, eye tests, MRI's and various evaluations. These are all things we would appreciate however we have learned in our NICU experience you have to stay focused on the task at hand as well and at that time it was way more important to have Bella optimized for surgery than to know if she can see or hear. We expressed concerns for several, several days about the amount of fluid that Bella was retaining. At first we were told that she didn't look any bigger, after being weighed and they realized she had gained 700 grams in 4 days we were told that we needed to move her around more. After moving her around and she only continued to get bigger they intervened with some diuretics just the day before she went off to surgery... Now after surgery she has gained 1200 grams of pure fluid and is miserable. Also during this time they tried to tell us from their 5-15 minute evaluations that she is deaf, blind and possibly could never walk...(we know for a fact that she is not deaf or blind but it takes more than 15 minutes to realize that). Some have gone as far as to make the assumption that she will be a "vegetable". You have all seen the photos, some of you have met her and it is SO far from the truth that it really makes us question how these assumptions are made and it is very scary that her care could be centered around these thoughts.

Also during these 2 weeks she informed us of something we have never ever heard before in our journey. - "Scope of Care"- this means that they feel their expertise only extends to 1 year. After that time they would like for Bella to either go home or to a chronic care facility in another state. She informed us that in her expertise that Bella will not be ready to go home in May and she recommended a chronic care facility in Louisville or Atlanta. First of all our problem with this is that we think it is way too soon to determine whether Bella will be ready to come home in May. She just had 3 surgeries in 5 weeks....She did far better than anyone ever gave her credit and she has remained amazingly stable thru the process. So we hope that this is a mute point and we are ready for discharge around her first birthday. However we also know that things happen and she may not be ready to go and if we try to force it she could come home and die after fighting this long and hard to stay alive. Or we could sale our home in this economy (lose money), give up our business (which has taken 10 years to build), pull our child out of his school (the only stability we can provide him right now), give up our church that took us years to find and move away from the very family and friends that have helped us get thru this past year to take her to a "chronic care facility" that is equipped with fewer therapists, fewer specialists and are known for their high infection rates. A glorified baby nursing home if you will. OR we could stay at Vanderbilt with our team of nurses that have MUCH experience taking care of babies like Bella, a staff of doctors that are made up of leading experts in chronic lung disease, pulmonary hypertension and various areas that greatly benefit Bella's condition and keep our life on track and moving forward so that we may provide for her and have the support that we need to be there for her every day.

So my fury (absolutely furious!!!) lies in the fact that this Dr and probably some upcoming ones have and will try to convince us that the chronic care facility is in "Bella's best interest". Really do I look that dumb????

We are blessed this next 2 weeks with a Dr that sees the big picture for Bella. She understands that it is baby steps and that we cannot rush her or push her too hard. She is also not pushing the "chronic care facility" idea on us either. We freaked out thinking that her care was headed in the direction to "push us out the door" and we addressed it with this Dr and she assures us not on her watch. So for the next 2 weeks we are safe and free of this nonsense (we hope...) However we want all of you to be informed as this is where the road may take us and at some point we may have to fight to keep Bella there. We never ever in a million years would think we would have to fight to keep her in the hospital I tell you that...But we WILL NOT bring her home before she is ready just to lose her and we WILL NOT put her in one of these horrible places they tell us about.

What can we do to ensure Bella and babies on the same course as her get the care that they need for as long as they need at one of the most acknowledged children's hospital in the South? We turn one of the NICU wings into a chronic care wing for babies with extended care needs. We form a team of nurses and doctors whose calling is caring for these chronic babies to manage their care. It is very simple, they have every thing they need to get it done. And they have seen in the past few years a definite need for it. So if any of you out there have any contacts or know the powers that be this is what you can do to help us and all of those who follow in our footsteps. Tell them that Nashville wants/needs this to happen. Not 5 years from now but NOW! We need a chronic care wing that is overseen by a specialized team of doctors and nurses to give our babies every chance possible for the best outcome. If you know anyone making donations to Vanderbilt Children's Hospital please ask that they express their interest for this to happen.

Bella had a rough start to her week with all of the fluid but she is starting to get rid of some of it slowly. It could take 2-4 weeks to get her to her normal size again. I cannot even begin to express my frustration about this and if it had been taken care of 2 weeks ago when we expressed concern....BUT we are moving forward and blessed by an all powerful God that has His hand on her!

Thank you all SO much for each and every prayer, you are carrying us!!!

Much love to you all
Telisha