So I just posted that I was praying for peace...The Lord works in wonderful ways. It came in the form of recalling a conversation at the playground today.
Dylan was at the indoor playground where he met a lively group of new friends. I overheard them chatting overhead where one introduced him to his sister. Dylan proudly stated that he has a baby sister as well and her name is Arabella. The kids looked down and said "where is she?" Without skipping a beat he nonchalantly answers "she is at the hospital"...A little boy asks " why, why is she at the hospital?" Again Dylan ever so calmly and confidently responds," her is getting big and strong so she can play..."
Tonight I am going to go with Dylan's diagnosis: " her is getting big and strong so she can play."
Thank you O Lord for letting me see my situation thru the eyes of a child. Thank you for the peace from this conversation that both Bella and Dylan are okay....Amen
Wednesday, August 18, 2010
Day 92
I wish I had good news on Miss Bella's 3 month birthday but unfortunately she is having some bad days...She has been at 95-100% oxygen for the past 24 hours straight with sats in the low 80's. She has required really high oxygen for the past week as well. They tell me clinically she looks fine but this is a new one for us so I am not fully convinced....She is showing no signs of infection but hoping (and asking every chance I get) that they will do more blood work tomorrow to rule it out (again). Just heard the term Pulminary Hypertension this evening, noone has officially mentioned this could be the case but after reading up on it and the symptoms I will be asking about it tomorrow as well. It could also be as simple as she is still recovering from the surgery or that she is growing faster than her lungs can keep up with at the moment. We just don't know now.
So I am reaching out to Him in faith, to give me peace, patience and acceptance of His will. I am reminded of Psalm 37:7, "Be still before the Lord and wait patiently for Him."
On the up side I got to hold Miss Bella yesterday for the first time since she had her surgery. It was amazing and SO needed. She loved it and confirms my belief even more that she knows when we are there: she knows our voice, our smell and our touch...I treasure that knowledge. I have heard various comments about the amount of time that I spend at the hospital but they are never from anyone that has gone thru a pregnancy and labor then gone home without a baby. Nor have they seen the monitors when she is right there on my chest, skin to skin. So I will hold fast to my belief that she needs me right there as often and as much as I can physically be there to encourage her, comfort her and believe in her. Our life truly depends on it....
Our celebration of the 3's continue, as we give praise and thanks for both of these beautiful children we have been so greatly blessed with.
Much love to you all
Telisha
So I am reaching out to Him in faith, to give me peace, patience and acceptance of His will. I am reminded of Psalm 37:7, "Be still before the Lord and wait patiently for Him."
On the up side I got to hold Miss Bella yesterday for the first time since she had her surgery. It was amazing and SO needed. She loved it and confirms my belief even more that she knows when we are there: she knows our voice, our smell and our touch...I treasure that knowledge. I have heard various comments about the amount of time that I spend at the hospital but they are never from anyone that has gone thru a pregnancy and labor then gone home without a baby. Nor have they seen the monitors when she is right there on my chest, skin to skin. So I will hold fast to my belief that she needs me right there as often and as much as I can physically be there to encourage her, comfort her and believe in her. Our life truly depends on it....
Our celebration of the 3's continue, as we give praise and thanks for both of these beautiful children we have been so greatly blessed with.
Much love to you all
Telisha
Monday, August 16, 2010
Day 90 (this is the right number FINALLY)
So I got completely side tracked on how many days we have been here... I checked her charts today to confirm. It is 90 days so back on blogging track..
Bella is getting another blood transfusion today. Luckily Nurse Lindsay was able to get her IV in on the first try. A true blessing for Bella! We are waiting on blood to arrive now. Note to self donate MUCH blood to blood bank to replace what we have taken...Once the transfusion starts she will be NPO (without food) during and 12 hours following. We are hoping the transfusion assists with helping her to oxygenate and her heart rate to come down a bit. She is still on 85 % oxygen and her sats are all over the place. One minute she is at 90 then the next moment she drops into the 60's... One of our favorite Dr's is on this week so it will be exciting to see what game plan he has for her. They were able to also drop her rate on the vent to 37 today, had a great blood gas as well.
Again we are celebrating the week of the 3's!!! Dylan turns 3 years, Bella turns 3 months AND weighs 3 pounds...
Much love to all
Telisha
Bella is getting another blood transfusion today. Luckily Nurse Lindsay was able to get her IV in on the first try. A true blessing for Bella! We are waiting on blood to arrive now. Note to self donate MUCH blood to blood bank to replace what we have taken...Once the transfusion starts she will be NPO (without food) during and 12 hours following. We are hoping the transfusion assists with helping her to oxygenate and her heart rate to come down a bit. She is still on 85 % oxygen and her sats are all over the place. One minute she is at 90 then the next moment she drops into the 60's... One of our favorite Dr's is on this week so it will be exciting to see what game plan he has for her. They were able to also drop her rate on the vent to 37 today, had a great blood gas as well.
Again we are celebrating the week of the 3's!!! Dylan turns 3 years, Bella turns 3 months AND weighs 3 pounds...
Much love to all
Telisha
The week of the 3's
On Friday Dylan turns 3 years old! It has been one of the most amazing gifts ever given to parent this child who is so incredibly bright, compassionate and alive. He can light up a room in a minute and says some of the funniest things I have ever heard in all my years. We have always done a big party for adults and children alike at our home. This year we have decided last minute to change it up a bit. He will be going to the beach with Dad for 4 days and having a boys week. We will do a small party before they leave at his favorite place Chuck E Cheese where we will indulge in his Star Wars obsession with (by request) a Darth Vader cake and gallactic decor. We lovingly joke that we are going to the dark side for this one....
On Wednesday Bella turns 3 months old. You have all journeyed this one with us and as you know it is truly a miracle that we are seeing this day. Complete and total divine intervention...This child has taught me more in 3 months than I have learned in my 30 plus years. She is sweet yet fiesty, tiny but with a HUGE spirit and to look into those huge beautiful eyes daily is to experience the wonderment and purity of an all-powerful, all-knowing God each time. To make this milestone even sweeter we also rejoice in the fact that she is officially 3 pounds!!
Wednesday also marks 3 months that we have been in NICU. 3 months of no days off, no escaping our reality and no getting away from it all. 3 months of splitting time between this energetic, alive 3 year old and this precious miracle that was given a 5% chance of life. 3 months of having our life turned completely upside down and inside out. 3 months of some days thriving and some days merely surviving. Yet somehow I can sit here today and tell you these are the most beautiful, most meaningful, most joyful 3 months of our entire life....We have learned in these 3 months to be a patient Christian, to live according to God's plan and timetable. We have learned the power of constant communication with Him. We have seen the kindness of strangers and continuous support of our loved ones. We have learned to not only talk to the Lord but most importantly to quiet ourselves and our lives so that we may also listen.
It is the week of the 3's, our spirit is renewed and our faith even stronger as we head into this week of celebration. This week of living each and every day in God's good grace. I couldn't mean it anymore when I say we are truly blessed...Thank you to each of you for the many different ways you have helped to bring us here today.
Much love to you all
Telisha
On Wednesday Bella turns 3 months old. You have all journeyed this one with us and as you know it is truly a miracle that we are seeing this day. Complete and total divine intervention...This child has taught me more in 3 months than I have learned in my 30 plus years. She is sweet yet fiesty, tiny but with a HUGE spirit and to look into those huge beautiful eyes daily is to experience the wonderment and purity of an all-powerful, all-knowing God each time. To make this milestone even sweeter we also rejoice in the fact that she is officially 3 pounds!!
Wednesday also marks 3 months that we have been in NICU. 3 months of no days off, no escaping our reality and no getting away from it all. 3 months of splitting time between this energetic, alive 3 year old and this precious miracle that was given a 5% chance of life. 3 months of having our life turned completely upside down and inside out. 3 months of some days thriving and some days merely surviving. Yet somehow I can sit here today and tell you these are the most beautiful, most meaningful, most joyful 3 months of our entire life....We have learned in these 3 months to be a patient Christian, to live according to God's plan and timetable. We have learned the power of constant communication with Him. We have seen the kindness of strangers and continuous support of our loved ones. We have learned to not only talk to the Lord but most importantly to quiet ourselves and our lives so that we may also listen.
It is the week of the 3's, our spirit is renewed and our faith even stronger as we head into this week of celebration. This week of living each and every day in God's good grace. I couldn't mean it anymore when I say we are truly blessed...Thank you to each of you for the many different ways you have helped to bring us here today.
Much love to you all
Telisha
Saturday, August 14, 2010
Day 81
What a week this one has been....
Gran passed on Wednesday. As she requested we celebrated her life instead of mourned her death yesterday. It was a beautiful day filled with many folks and it was a true testament to the massive number of people whoms life she impacted...
Miss Bella is doing things her way again and on her own time. She is not weaning as quickly as we had hoped for so far. She had to remain on almost 100 % oxygen yesterday for a good portion of the day. Finally after a HUGE diaper they were able to wean her down to 85 % and today she is on 75% oxygen. The Dr admitted today that he had been worried about an infection but so far her blood work and blood culture is showing no indication. They reminded me that with her chronic lungs we are just going to see good days and bad days...We are hopeful today is a good day. I FINALLY got to visit her again after being out for the week with sickness. I can't tell you the relief I felt from seeing her sweet face...she is weighing in at 2 pounds 15 ounces!!! She was very alert and I like to think really happy to see her mommy...
The Lord is teaching us much and despite the exhaustion of it all we are truly thankful for the wisdom and blessings...
Much love to you all
Telisha
Gran passed on Wednesday. As she requested we celebrated her life instead of mourned her death yesterday. It was a beautiful day filled with many folks and it was a true testament to the massive number of people whoms life she impacted...
Miss Bella is doing things her way again and on her own time. She is not weaning as quickly as we had hoped for so far. She had to remain on almost 100 % oxygen yesterday for a good portion of the day. Finally after a HUGE diaper they were able to wean her down to 85 % and today she is on 75% oxygen. The Dr admitted today that he had been worried about an infection but so far her blood work and blood culture is showing no indication. They reminded me that with her chronic lungs we are just going to see good days and bad days...We are hopeful today is a good day. I FINALLY got to visit her again after being out for the week with sickness. I can't tell you the relief I felt from seeing her sweet face...she is weighing in at 2 pounds 15 ounces!!! She was very alert and I like to think really happy to see her mommy...
The Lord is teaching us much and despite the exhaustion of it all we are truly thankful for the wisdom and blessings...
Much love to you all
Telisha
Tuesday, August 10, 2010
Day 77- (sorry we got off on our numbers)
Bella has been recovering from her surgery quite nicely. She is back on full feeds, the chest tube has been removed and she is back in her isolette. She pulled out her breathing tube again by herself on Saturday night. They decided to give her a try without it and put her on CPAP again. We all knew it was a bit too soon but she did make it 24 hours before going back on the vent. The Dr seems to think the surgery is showing some signs of helping with her lungs. Her blood gases have all been really good. We are so thankful and blessed for all of this. The plan now is to keep weaning her down on the ventilator and hopefully a planned extabation is in our near future. She weighs 2 pounds and 12 ounces now!
Chris, Dylan and I have all come down with a horrible cold. Thankfully God kept me well enough to get them somewhat better yesterday and now I have taken their place on the couch. Unfortunately we can't visit Bella for a few days until we are symptom free and without fever for 48 hours. I miss her terribly already and am craving to see her sweet face but I know she is in good hands. I am going to allow myself to rest and make a quick recovery.
Chris' grandmother was taken off of a breathing machine on Sunday. The family gathered to say their goodbyes and tell Gran stories. I have never seen someone so truly excited to go to heaven, she just loves Jesus so much and is ready to join him. He so far seems to have other plans and she is still here with us...she has lived an amazing life but we would be ecstatic if there were still some more years left but only time will tell. Thank you for the prayers...
It has been quite a load to carry. I would be lying if I told you we weren't worn and weary from it all. But sending up prayers that the Lord renews our spirit, keeps us gracious and thankful for these times that we have been able to turn to Him, and witness His daily miracles and the beauty of His love.
Much love to all
Telisha
Chris, Dylan and I have all come down with a horrible cold. Thankfully God kept me well enough to get them somewhat better yesterday and now I have taken their place on the couch. Unfortunately we can't visit Bella for a few days until we are symptom free and without fever for 48 hours. I miss her terribly already and am craving to see her sweet face but I know she is in good hands. I am going to allow myself to rest and make a quick recovery.
Chris' grandmother was taken off of a breathing machine on Sunday. The family gathered to say their goodbyes and tell Gran stories. I have never seen someone so truly excited to go to heaven, she just loves Jesus so much and is ready to join him. He so far seems to have other plans and she is still here with us...she has lived an amazing life but we would be ecstatic if there were still some more years left but only time will tell. Thank you for the prayers...
It has been quite a load to carry. I would be lying if I told you we weren't worn and weary from it all. But sending up prayers that the Lord renews our spirit, keeps us gracious and thankful for these times that we have been able to turn to Him, and witness His daily miracles and the beauty of His love.
Much love to all
Telisha
Friday, August 6, 2010
2nd Update Post Op
I wanted to give a quick update while I had a break during shift change. Bella Boo seems to be recovering nicely. She has had consistently great blood gases so her rates and pressures are all being brought down a little each time, they were really high from the surgery. She has been between 60-70 % oxygen all day. She is starting to barely come to and when she awakens a bit more they will start her on morphine. Her blood sugar is pretty high so they are going to monitor it tonight, they may change up IV fluids or give her some insulin if it doesn't come down soon.
Chris has teased me saying that I would love nothing more than to move into this hospital with Bella until she comes home. Well tonight I get my wish, we have a room on her floor tonight so that we can visit and be close by should any changes occur.
We are just living in God's good grace and Bella is amazing...will keep you posted! Thank you again for the support and continued prayers.
Chris has teased me saying that I would love nothing more than to move into this hospital with Bella until she comes home. Well tonight I get my wish, we have a room on her floor tonight so that we can visit and be close by should any changes occur.
We are just living in God's good grace and Bella is amazing...will keep you posted! Thank you again for the support and continued prayers.
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