Today at 7 pm, Miss Bella will have made her mark for 6 weeks. Happy birthday Bella...Brother Dylan and us are going to celebrate by going to see Toy Story 3 this evening. He loves your weekly birthday celebrations Bella...
Sweet girl is doing well today. Her blood gases are improving and she is getting full feedings of 12 cc's every 3 hours. That makes us happy! They tried starting her on some fortifiers for additional calories but we just noticed some swelling in her stomach so she may not be handling that well. They have stopped for now and may resume with smaller doses later.
This week we pray to see those lungs get better, regenerating new lung tissue and getting healthy...Dr says that this can be achieved with plenty of nourishment..
Still watching, waiting and continuously praying...Thank you God for these glorious 6 weeks, she is amazing...strong...beautiful...and brave ..
Tuesday, June 29, 2010
Thank you!!!
Wow, how do we begin to express the overwhelming amount of gratitude that we have to so many....we are in complete amazement at the generosity and kindness of everyone that contributed to Bella's benefit last night. There are no words....but thank you all from the deepest, sincerest part of our hearts...
I cannot even begin to name the names of all of you that contributed but you know who you are, so do we and so does God and may he bless you as he has so greatly blessed us.
It was all the sweeter that the things we love the most in life: God, Family, Friends and Music all gathered together in our time of need.
Much love to you all
Telisha
P.S..today's update on Bella to follow soon
I cannot even begin to name the names of all of you that contributed but you know who you are, so do we and so does God and may he bless you as he has so greatly blessed us.
It was all the sweeter that the things we love the most in life: God, Family, Friends and Music all gathered together in our time of need.
Much love to you all
Telisha
P.S..today's update on Bella to follow soon
Monday, June 28, 2010
Day 39
I'm sitting here at the nicu about to head over to exit/in for Bella's benefit show. Bella's blood gas just came back looking better than it has in days, which means the oscillator is working for her. She started eating again this morning, and we're all happy about that. She is still receiving some fluids via IV but that should stop once she's on full feeds again. Apparently this is what its like to have a baby with chronic lung disease. We HOPE its a long road. Overall, Bella is doing well and we are so thankful. This experience has taught us to be thankful and has made us recognize how much we have to be thankful for and how many people care about us and Bella. I'm looking forward to seeing everyone at Exit/In tonight. So many people have gone out of their way to make this event happen and I'm very appreciative. It really means a lot to me, Telisha, Dylan, and most of all Bella. Thank you all...
Sunday, June 27, 2010
Days 37 & 38
Well we are on the NICU roller coaster again...still thankful and blessed for her series of good days but unfortunately yesterday Bella's blood gases continued to get progressively worse. She was switched back to the oscilating ventilator end of day yesterday and spent a good portion of the evening getting use to it and needing 100 percent oxygen for a good while. The Doctor says that upon viewing her xrays that her left lung was getting hyperinflated and her lungs are very sick. They tell us that this machine is much easier on her lungs. Unfortunately it takes some getting use to for her. Her blood gases are slowly getting better but no great results thus far, just going to take some time. Doctor says that this is showing him that she has Chronic Lung Disease and will go home on oxygen, no great suprise there for us. All I heard there is that she could one day go home :)
Today is not a fun day for Bella. She needs more blood for respiratory purposes so is getting a blood transfusion today and tomorrow. This means that she is NPO (without food) until it is complete. She is much like Mom and Dad and loves to eat so feeling really bad for her today. She has an IV of fluids during this time and luckily Nurse Susan was able to start it on the first try...not an easy feat!
We are unable to hold Bella while on this ventilator. But we are looking at the long term here, if it is for her best interest and will help her improve over time we don't need instant gratification now...we are going to keep looking at the bigger picture where one day we will kiss her, hold her and hug her as much as we want.
We missed service and an intended Sunday School class this morning with everything going on but finding some comfort in scripture by her side now....We thank you all again for your continued prayers, we have a long road ahead but our faith just keeps getting stronger...
Much love to each of you
Telisha
Today is not a fun day for Bella. She needs more blood for respiratory purposes so is getting a blood transfusion today and tomorrow. This means that she is NPO (without food) until it is complete. She is much like Mom and Dad and loves to eat so feeling really bad for her today. She has an IV of fluids during this time and luckily Nurse Susan was able to start it on the first try...not an easy feat!
We are unable to hold Bella while on this ventilator. But we are looking at the long term here, if it is for her best interest and will help her improve over time we don't need instant gratification now...we are going to keep looking at the bigger picture where one day we will kiss her, hold her and hug her as much as we want.
We missed service and an intended Sunday School class this morning with everything going on but finding some comfort in scripture by her side now....We thank you all again for your continued prayers, we have a long road ahead but our faith just keeps getting stronger...
Much love to each of you
Telisha
Saturday, June 26, 2010
Life in the NICU
Luckily we have very little to report with Miss Bella this week. Eat, sleep, heal and grow...A series of uneventful days is a huge blessing.
I wanted to take the time to talk about our life in NICU. Some of you are very familiar with it and the rest of you we pray will never have to experience it....We received some wise advice in the very beginning from my dear father in law who told us that we just have to find a new normal. Here is our new normal for now:
Our days include several visits to Bella throughout the day. Upon each visit we sign in, scrub for 3 minutes from the elbows down and put on a hospital gown. Many of you have asked about visiting her. Unfortunately for her safety and the safety of the other babies we were only given 6 visiting spots and a spot for clergy member from our church. This reduces the risk of sickness and such being brought in. During her stay at NICU these are the only folks that are allowed to visit. Of course these spots were filled with immediate family members, unfortunately most all of these family members are not local so Miss Bella does not get a whole lot of visitors besides mom and dad. Another unfortunate is that siblings must be 4 years of age to visit so Dylan has not and probably will not see his little sister for quite some time.
Bella gets her milk and assessment every 3 hours and the isolette is left closed otherwise unless she starts acting up and they have to check on her. If we are there during the assessment then we get to do things like change diaper, take temperature, sometimes assist with medicines and tuck her in. She seems to respond best to minimal stimulation so we hold her hand or rest our finger against the bottom of her foot and speak soothing words to her. Our visits with the isolette open last only as long as Bella will allow, she is the boss and boy I tell you she is a girl that will let you know what she wants (I like to think she gets that from me ;))
The remainder of our time visiting is spent getting information from our nurses on orders for the day or next day, discussing their thoughts and opinions and on some days they act as our therapists listening to all aspects of our life and feeding us their wisdom. Have we mentioned yet just how incredible these Nurses and Respirational Therapists are??? We have found the NICU to be incredibly peaceful so Chris sometimes finds it a great time to take a cat nap. We spend much time in prayer and meditation there as well. We have several books that have been wonderful resources and inspiration for our spiritual journey that we read daily. One of course is Bella's bible in which we read and highlight scripture that some day we plan to teach her and another is a book called Jesus Calling which is daily devotionals that always seem to hit home.
Oh yes I should mention that we are not allowed to take calls by her bed....SO if you have called one of us and we have not answered that is possibly why....Text or email is best for now unless you don't mind waiting on a returned call.
We have come to cherish our time there, it is not the scary and cold place that most hospitals can be. It is warm, friendly and these babies are surrounded by more love than most of us each day. It definitely makes the long journey ahead not so bad.
We have learned that mainly life in the NICU is just one big balancing act. A balancing act for the medical staff to keep all organs and her amazing body working together.... A balancing act between visits with Bella, spending enough time with Dylan and managing to keep all other aspects of our life moving forward.... A balancing act between sleeping enough to fight off exhaustion and staying awake long enough to make the last sentence possible (obviously I am still working on this one since I am posting this at 5:00 am on a Saturday morning).... A balancing act of accepting all of the incredible help from family, friends and even strangers to get us through this time.... A balancing act of finances and career to ensure a future for both of our kids without sacrificing the time we have today.... A balancing act of our spiritual journey and growth along the way....One big balancing act..And I am incredibly happy to report that with much prayer, assistance from all of you and a cautiously optimistic hope for Bella's future, most days are for the most part: balanced.
Thank you all again for the continued prayers, thoughts and support.
Much love to each of you
Telisha
I wanted to take the time to talk about our life in NICU. Some of you are very familiar with it and the rest of you we pray will never have to experience it....We received some wise advice in the very beginning from my dear father in law who told us that we just have to find a new normal. Here is our new normal for now:
Our days include several visits to Bella throughout the day. Upon each visit we sign in, scrub for 3 minutes from the elbows down and put on a hospital gown. Many of you have asked about visiting her. Unfortunately for her safety and the safety of the other babies we were only given 6 visiting spots and a spot for clergy member from our church. This reduces the risk of sickness and such being brought in. During her stay at NICU these are the only folks that are allowed to visit. Of course these spots were filled with immediate family members, unfortunately most all of these family members are not local so Miss Bella does not get a whole lot of visitors besides mom and dad. Another unfortunate is that siblings must be 4 years of age to visit so Dylan has not and probably will not see his little sister for quite some time.
Bella gets her milk and assessment every 3 hours and the isolette is left closed otherwise unless she starts acting up and they have to check on her. If we are there during the assessment then we get to do things like change diaper, take temperature, sometimes assist with medicines and tuck her in. She seems to respond best to minimal stimulation so we hold her hand or rest our finger against the bottom of her foot and speak soothing words to her. Our visits with the isolette open last only as long as Bella will allow, she is the boss and boy I tell you she is a girl that will let you know what she wants (I like to think she gets that from me ;))
The remainder of our time visiting is spent getting information from our nurses on orders for the day or next day, discussing their thoughts and opinions and on some days they act as our therapists listening to all aspects of our life and feeding us their wisdom. Have we mentioned yet just how incredible these Nurses and Respirational Therapists are??? We have found the NICU to be incredibly peaceful so Chris sometimes finds it a great time to take a cat nap. We spend much time in prayer and meditation there as well. We have several books that have been wonderful resources and inspiration for our spiritual journey that we read daily. One of course is Bella's bible in which we read and highlight scripture that some day we plan to teach her and another is a book called Jesus Calling which is daily devotionals that always seem to hit home.
Oh yes I should mention that we are not allowed to take calls by her bed....SO if you have called one of us and we have not answered that is possibly why....Text or email is best for now unless you don't mind waiting on a returned call.
We have come to cherish our time there, it is not the scary and cold place that most hospitals can be. It is warm, friendly and these babies are surrounded by more love than most of us each day. It definitely makes the long journey ahead not so bad.
We have learned that mainly life in the NICU is just one big balancing act. A balancing act for the medical staff to keep all organs and her amazing body working together.... A balancing act between visits with Bella, spending enough time with Dylan and managing to keep all other aspects of our life moving forward.... A balancing act between sleeping enough to fight off exhaustion and staying awake long enough to make the last sentence possible (obviously I am still working on this one since I am posting this at 5:00 am on a Saturday morning).... A balancing act of accepting all of the incredible help from family, friends and even strangers to get us through this time.... A balancing act of finances and career to ensure a future for both of our kids without sacrificing the time we have today.... A balancing act of our spiritual journey and growth along the way....One big balancing act..And I am incredibly happy to report that with much prayer, assistance from all of you and a cautiously optimistic hope for Bella's future, most days are for the most part: balanced.
Thank you all again for the continued prayers, thoughts and support.
Much love to each of you
Telisha
Thursday, June 24, 2010
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