Sunday, May 4, 2014
In celebration of Berlyns life we will be holding a viewing in the bear river city church on Tuesday May 6th from 6:00 pm- 7:30 pm. On Wednesday May 7th a viewing will be held from 9:30-1030 am. And will be followed by the funeral at 11:00 am. At the same location. Zach and I appreciate all the thoughts prayers love and support that has been shown to us.
Saturday, May 3, 2014
Our sweet Berlyn went up to heaven today while we got to hold her in both of our arms. With no machines or tubes or nurses. We got to hear her breathe on her own and she opened her heavenly eyes to say goodbye. I always have had a good feeling and now I know what that feeling meant. She is my guardian angel and I know I will get to be with her some day and we can paint our toenails and do each other's hair. We can run and skip and be perfect. She was way too perfect for this world. We got to give her a name and a blessing. Daddy read his book "Guess how much I love you" one last time. And we said our family prayer. I love my sweet Berlyn more than anything in the world. I will sleep with her bunnies every night. I know she is still with us and I can feel her beautiful spirit. I know she will never leave us. Daddy would always say prove the doctors wrong... And she did. I love you forever and always sweet Berlyn!
Thursday, May 1, 2014
I first off have to say a huge Thank You to the ladies I work with! They made an appointment for me down here to go get my hair done on them!! I am seriously so so grateful for them!! They are the most caring ladies I know! It was so nice to get away for awhile.
Miss Berlyn did not have a good night or day. They stopped her feedings too. I think they started feeding her way too fast. She had a lot of desats today. She had a couple where her heart rate would drop very low too. That is the most scariest thing in the entire world to watch. She never really cries and she cried a lot it literally broke my heart. I wish I knew what was wrong so I could take it away. They put another feeding tube in her mouth to try and see if that will help with the air in her stomach. I just hope they can figure out how to feed her and make it so she won't have anymore desats. I love this little girl with all my heart and I want nothing more than for her to be happy and comfortable.
Wednesday, April 30, 2014
Today was a really good day for miss Berlyn! The only time she desat was when someone was bugging her and moving her. She is now at 4.5mls of food and has been doing good. I am so relieved she is doing good. I hope it continues. She is also 3lbs 7oz now!!! Which is great she is gaining and we are so happy. We love our sweet Berlyn more than anything!
Tuesday, April 29, 2014
Well today started out pretty crappy. We woke up with Berlyn's surgery scheduled for later in the day. We were worried about the surgery. We always call first thing when we get up to see how the night went for Berlyn. Last night was rough again with her desats and cause of this they had to bag her a couple times to get her to breathe. When we called the nurse said the doctor and his team would like to sit down with us and have a "parent circle" aka meeting with the doctor, nurse practitioner, Berlyn's nurse, dietician, pharmacist, respiratory therapist, and social worker... A lot of people! During the circle they asked us what we want to do in surgery if they find things past what they could see yesterday. They said the only thing we could do was a tracheostomy and this is something she would have for years and most likely be unable to remove it. They also mentioned it would cause her to develope pulmonary hypertension and lead to heart failure in 3-6 months. Not the news we were hoping for :( they prepared us to accept the fact that she wasn't going to make it longer than that. We sobbed as they asked us if we wanted to give the nurses permission to not resuscitate her. Tears flowed again. We weren't ready for that. No parent is ready for that type of news. They left and we kneeled together and said a prayer to seek guidance from the best physician. We prayed and didn't feel anything. We waited and waited for guidance. It didn't come then. We both had an uneasy feeling about the surgery and with the help of our dear nurse talked to the ENT doctor about her surgery. The first thing he said was this surgery is going to be very hard on your daughter and she might not make it out of it alive. It she does the results will be minimal at best. 5 hours after meeting with the circle and not receiving any answer, this doctor was our answer. I asked him if her desats could be linked to her feedings because she didn't have a single episode today and because of her scheduled surgery they stopped feeding her. We held her, had her on all her sides, and no desats. The doctor was shocked she didn't have any episodes today. We asked if acid reflux can cause apnea. YES, it can and in her instance it sounds like the culprit. At this moment we knew our answer. It was NO, a big no! We talked and decided to try Prilosec with her feedings to see if that will help her. After deciding this we had the calmest feeling come over us that told us we were making the right choice! We are so happy that we both felt good about it too which made it easy to do. We are thankful for a loving Heavenly Father who always answers prayers and a lot of the times when we least expect it. We are grateful for the doctor for his willingness to try this non invasive step first. We are thankful for the power of prayer and the knowledge that God is in charge and will always do what's best for us.
Monday, April 28, 2014
Well last night wasn't very good for miss Berlyn. She had a lot of apnea spells and a couple that required them to bag her. The day was a lot better though. Vicki was our nurse today and she is so smart she knows her stuff and it is comforting to us that she is taking care of Berlyn. They did some labs in the morning and they came back high on white blood cells and platelets... Great we thought she had an infection. They put us in precautionary isolation and they made us wear gowns. They did a swab of her nose to see if they could get a positive match on what was wrong. The results came back negative! No infection just a high number of white blood cells and platelets from a stressful night. With the increase of her apnea spells (she had 24 in 24 hours) they were getting worried why she was having them more frequently. An ear, nose, and throat doctor was called to see what they thought. They were able to do a scope at the bedside to look into her larynx. They noticed she has laryngomalacia. They scheduled her for surgery tomorrow to look past her vocal cords at her trachea and bronchi. If it is only the first one they can cut the extra tissue she has around her vocal cords so they will no longer collapse and restrict her airway. Another surgery for this poor girl. We had a rough time with the other surgery and have to go through another one. We've decided we hate Tuesdays!! Only bad news comes then. But we are hoping this surgery will correct her apnea spells and we can jump over another hurdle! We love her so much!
Sunday, April 27, 2014
Today my great grandpa who is 100 years old came to meet Berlyn. It was such a neat experience. She opened her eyes wide for him. I know they understood each other. He talked to her and just sat and admired her. She absolutely loved him!