Good news. Clara and I came in this morning and Josephine was in her Big Girl bed and not in what we jokingly refer to as the sand blasting tank. It was so good to see her in regular baby clothes i. e. onesy, sleeper, nit hat, and blankets. I couldn't wait any longer I dropped the bags, scrubbed my hands and grabbed the baby. Besides Clara had a date in the pumping room. They also had taken out her IV and she is no longer hooked up to the blood oxygen sensor. She does still have the og tube for feeding and her heart and respiration monitors as well as blood pressure monitors.
The next big piece of news is that we may be coming home as soon as Wednesday!!! She has been up and down on her weight but that's to be expected. Now Mom and especially Dad have to learn to be her total care providers. Most of it is stuff we already know like love her and change her and hold her, but how to administer medication and feeding is new to me. I told the nurses that I would try my hardest for delicacy. The other day as I was holding her I started stroking her cheek. She did not like it at all! My hands are so rough and calloused that I can not feel her soft skin, but for her it must be like having a wood rasp rubbed across her face. I don't stroke her any more. A gentle rocking motion is better.
We have also talked with the social worker about accomodations for Josephine, and someone from Hospice should be getting together with us to talk about some services they could help us with. We are happy to be taking her home, because she will be with her big Sister and Brother. We want Marian and James to bond with Josephine and form lasting memories with her. Tuesday we will be rooming over with Josephine. It kind of sounds like a big sleep over, and it kind of is. We will move into the nicu's rooms for a night so we can try taking care of Josephine all on our own. The thought of taking a baby home from the Nicu and being their total care providers is rather overwhelming for some. But like my mother-in-law says "It ain't no hill for no high stepper."
The doctors did tell us this morning that Josephine's heart murmur has gotten louder and her breathing is a little more labored. With that in mind they have prescribed some medications that will help with reducing any fluid around her heart and generally help with palpitation. There are three major heart defects associated with Edward's syndrome and little Josephine has the trifecta. This is OK.
A good friend of ours is an OB GYN here at the hospital and we will be meeting him and his wife and kids for dinner tonight. I had not seen Clark in over 10 years when I saw him in the lunch line. He has spent a lot of time with us here in the NICU and has been able to translate much of the "Doctoresse" for us. Being so far from Clara's OBGYN it was a comfort to have someone so close to go to for answers to questions. He even wrote her a prescription for some headaches she has been having which were related to her spinal. This is just another way Lord has seen fit to give us exactly what we have needed most exactly when we have needed it most. I want all of you who have helpped us to know that you have let your lights shine and have let us see the Glory of the Father. I only hope that when my light is needed, I can let it shine as well as you have.
I was talking to my sister-in-law Lee Udall Bennion this morning and she really summed up the feeling here. We are in the eye of the hurricane right now. There is a sence of peace and comfort here that eminates from the Holy Spirit. I am reminded of what the Lord told his diciples before he left them,
John 14:27 Peace I leave with you, my bpeace I give unto you: not as the world giveth, give I unto you. Let not your heart be ctroubled, neither let it be afraid.
28 Ye have heard how I said unto you, I go away, and come again unto you. If ye loved me, ye would rejoice, because I said, I ago unto the Father: for my bFather is greater than I.
29 And now I have told you before it come to pass, that, when it is come to pass, ye might abelieve.
Friends and Family, Let your hearts be at peace He who sees the sparrows knows our little girl and knows how best to care for her. When Josephine was born she would not breathe. As I stood there watching the pediatritian and grim faced ob nurses pump oxygen into my little girl I prayed and prayed as the fear and panic mounted begging God to make everything all right. I finnaly realized and said to Him in humility, "Not my will, but Thine be done." As Clara and I have striven to submit our wills to His our faith has grown beyond our understanding.
I have frequently thought back seven and a half years to when Clara and I were sealed in marriage not just to each other but also to our children for time and all eternity. Regardless of what happens to Josephine, as long as Clara and I are faithful to our Temple covenants we will be a family forever.
Thank you for your thoughts and concerns
Jonathan Bennion
The next big piece of news is that we may be coming home as soon as Wednesday!!! She has been up and down on her weight but that's to be expected. Now Mom and especially Dad have to learn to be her total care providers. Most of it is stuff we already know like love her and change her and hold her, but how to administer medication and feeding is new to me. I told the nurses that I would try my hardest for delicacy. The other day as I was holding her I started stroking her cheek. She did not like it at all! My hands are so rough and calloused that I can not feel her soft skin, but for her it must be like having a wood rasp rubbed across her face. I don't stroke her any more. A gentle rocking motion is better.
We have also talked with the social worker about accomodations for Josephine, and someone from Hospice should be getting together with us to talk about some services they could help us with. We are happy to be taking her home, because she will be with her big Sister and Brother. We want Marian and James to bond with Josephine and form lasting memories with her. Tuesday we will be rooming over with Josephine. It kind of sounds like a big sleep over, and it kind of is. We will move into the nicu's rooms for a night so we can try taking care of Josephine all on our own. The thought of taking a baby home from the Nicu and being their total care providers is rather overwhelming for some. But like my mother-in-law says "It ain't no hill for no high stepper."
The doctors did tell us this morning that Josephine's heart murmur has gotten louder and her breathing is a little more labored. With that in mind they have prescribed some medications that will help with reducing any fluid around her heart and generally help with palpitation. There are three major heart defects associated with Edward's syndrome and little Josephine has the trifecta. This is OK.
A good friend of ours is an OB GYN here at the hospital and we will be meeting him and his wife and kids for dinner tonight. I had not seen Clark in over 10 years when I saw him in the lunch line. He has spent a lot of time with us here in the NICU and has been able to translate much of the "Doctoresse" for us. Being so far from Clara's OBGYN it was a comfort to have someone so close to go to for answers to questions. He even wrote her a prescription for some headaches she has been having which were related to her spinal. This is just another way Lord has seen fit to give us exactly what we have needed most exactly when we have needed it most. I want all of you who have helpped us to know that you have let your lights shine and have let us see the Glory of the Father. I only hope that when my light is needed, I can let it shine as well as you have.
I was talking to my sister-in-law Lee Udall Bennion this morning and she really summed up the feeling here. We are in the eye of the hurricane right now. There is a sence of peace and comfort here that eminates from the Holy Spirit. I am reminded of what the Lord told his diciples before he left them,
John 14:27 Peace I leave with you, my bpeace I give unto you: not as the world giveth, give I unto you. Let not your heart be ctroubled, neither let it be afraid.
28 Ye have heard how I said unto you, I go away, and come again unto you. If ye loved me, ye would rejoice, because I said, I ago unto the Father: for my bFather is greater than I.
29 And now I have told you before it come to pass, that, when it is come to pass, ye might abelieve.
Friends and Family, Let your hearts be at peace He who sees the sparrows knows our little girl and knows how best to care for her. When Josephine was born she would not breathe. As I stood there watching the pediatritian and grim faced ob nurses pump oxygen into my little girl I prayed and prayed as the fear and panic mounted begging God to make everything all right. I finnaly realized and said to Him in humility, "Not my will, but Thine be done." As Clara and I have striven to submit our wills to His our faith has grown beyond our understanding.
I have frequently thought back seven and a half years to when Clara and I were sealed in marriage not just to each other but also to our children for time and all eternity. Regardless of what happens to Josephine, as long as Clara and I are faithful to our Temple covenants we will be a family forever.
Thank you for your thoughts and concerns
Jonathan Bennion
8 comments:
Whooohoo! What a strong little girl you 2 have! I am keeping you in my prayers. If you 2 need anything let me know.
In all the comotion I didnt get to say congrats on such a beautifull little angel! I am so happy that you guys are going to be coming home soon. If you need anything at all we are just a street away and would love any chance to help!!!! We are praying for a miracle!!
Hi family, This is Jamie (Thoerig) Wrye. I was a childhood friend of Clara. I am so happy that your little girl is doing better. We will pray for you all.
Love, The Wrye Family
Thanks for taking the time to share your thoughts and testimony, John. It helps me to feel the spirit and peace too. It's strengthening all of us. What a special girl and a special family you are. Love you guys so much!
the Hueys
Clara & John,
What amazing strength you both have. Know that the Lord is with your family and especially little Josephine. One of the major things I learned while in the NICU with our daughter was that the Lord is so much closer to us than we even realize. When I thought things were too hard to handle I would ask for a Priesthood blessing and my burden was lifted and somehow I was given just enough to go a little longer. In those blessings He always told me things that I needed to know and hear, and things I needed to have faith in.
We all have special experiences to bring us closer to the Lord and to help us realize how much we need his love and mercy, and He does not leave us to bear it alone. Of all the experiences in my life I have never felt the arms of the Lord wrap around me as I did when Alexa was born, as I know He has for you at this time. He is most definetly a God of Miracles!
I appolgize for the lengthy post. Your family is in our prayers.
Love, Melissa
Thanks Jon, for such a great post. You are amazing in you strength and testimony! You and your family are in our prayers. What a special little life to celebrate.
Clara and John,
The two of you comfort US with your faith and love. Clara, I have known you so long and I want to tell you that I am very proud of you and your family. You know how to reach me if you need me. Thanks for the blogs.
Love,
Connie G.
Clara and Family
Thank you for the updates. I love to hear about your and your little girl I have thought about you all so much in the past days. You and your family are a true inspiration. Thank you for taking the time to keep up on your posts. I know we are far away, but if you need anything please let us know. I also let my mom know about your little girl so if you need anything at the Lake Hospital just call. I will e-mail with the numbers.
Best wishes and you are in my thoughts.
Jennifer Wolfe and family
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