January 2007
Dear Family & Friends!
First of all, thank you to each and every one of you for the love, support and prayer you've sent our way. John and I feel an incredible amount of comfort knowing we have the most important support we need - spiritual! Second, for those of you who have worked with me at any time, you know how much I love technology yet technology does not embrace me back. I have had a series of laptop issues together with loosing both our computers at home. As a result I've been "re-built" multiple times leading me to loose my whole distribution list. I know I am missing more people than I am including as I no longer have their e-mail addresses. So I apologize for those who will get this more than once, but could you please forward this on as we would like to make sure as many people as possible get the update and can keep praying for Baby Bear.
With that said, John and I went in earlier this week for a follow up ultra-sound on Baby Bear. Encouragingly he seems to still be growing at a healthy pace. And, while he will be smaller in size than we are used to, he is still growing. We found out this time that the prior ultra-sound had noted a risk for a cleft palate. The physician felt that it was probably not the case this time around, but it is noted for additional follow up. The discouraging finding was Baby Bear's heart. It has been identified that he has "transposition of the great arteries" or TGA. For those who have known me since my early days in school, biology was not my strong suit! So I keep this at a simple level just because that is how I understand it. All our hearts have 4 chambers. Blood from the body comes in through the top right, drops to the bottom right chamber and is pumped out to the lungs to get oxygenated. The oxygenated blood re-enters the heart through the top left change, drops to the bottom left chamber that pumps it back out to the body - so one blood circulating system. Baby Bear's heart developed differently - he has two separate circulation systems per se. The blood coming in from the body is going right back out to the body. The blood coming in from the lungs is going right back out to the lungs. So two separate systems which prevent oxygen from getting to his brain or other organs. He is safe during the pregnancy but at birth this becomes a fatal condition. Most patients with this condition also have a hole in the heart that allows the oxygenated blood and non-oxygenated to mix - allowing some oxygen to reach other parts of the body. Baby Bear in true Mortimer/Krause form must do things his own way - and has perfectly healthy heart walls with no holes. This would have been the one time we would hope for a hole in heart!
Suffice to say this news was disappointing and alarming due to the severity. It took about a day to calm our fears and re-gain our focus on the future. As many of you have heard me say - at least we know! And for that we are truly thankful to God each and every day!! Now we know, and now we can prepare. We go back in mid February for a follow up ultrasound and to meet with Dr. Brames, a local pediatric cardiologist to determine our prognosis and treatment plan. While we know that Baby Bear will need open heart surgery, we don't know if they have options to keep him stable for a few days or weeks, or if the surgery will be immediate. We are also assuming we will need a c-section so as to have control over his treatment. Working at PacifiCare/UHC is allowing me to tap into resources I would not normally have access to so as to make sure we truly are getting the best treatment - be that in Colorado Springs or elsewhere. I ask that not only do you keep Baby Bear in your prayers, but also the medical staff that will be caring for him. Thank you!
To end on a more positive note, I wanted to share with you how playful Baby Bear is proving to be already! Every time they tried to zoom into his face to check out his upper lip he would bring his hand up to his mouth. When they wanted to see his nose, he would turn his head. When they wanted to check out his internal organs he would start doing flips as if saying "catch me if you can!". He finally moved his hand to show them his face and I could have sworn there was a smile on his face - as if he was having a pretty good laugh about how hard he was making everyone work. To all you mom's out there, you know during pregnancy how you get to know your baby even before they are born. In my heart I can already hear his laughter. No doubt he will be keeping us on our toes each day. We look forward to those days still to come with God's will......the first smile, the first clap, the first steps and the first true belly laugh. We know it will take longer than with our other children, but I so look forward to the day I can take him to the beach and see the expression on his face as he feels the sand squish between his toes. And if for some reason those days are not to come, we know that in his short life he has already touched so many lives and spread such love. He truly has blessed us so much more than we can imagine and for that too we are thankful!!
God bless all of you!!
catherine, john & family
( I am including my original e-mail as I heard in and out of work that not everyone got my original e-mail...sorry about that - I got tons of error messages when I sent it out over the size of my distribution list - so hope it goes through this time since I lost so many addresses)
PS. A mis amigas de San Silvestre - sorry mil veces por no haber respondido a todos los mensajes de amor y apoyo que me mandaron - prometo hacerlo pronto. Entre los dias de vacaciones, Navidad, y la locura del trabajo llego al fin del dia cansadisima. Kitty - thank you!; Sandra - si, si,si mil veces si - ya te mando mis datos y los de mis padres; Lala, Ginny, Patty y las otras profesoras - ya con tiempo estare buscando informacion sobre metodos de ensenansa, etc y si me podrian ayudar seria maravilloso - y Lala, si me puedes poner en contacto con alguien que me pueda ayudar entender las opciones de physical therapy que ofrece el estado de Colorado te lo agradeceria un monton - entiendo que se tiene que coordinar en el school district y mis hijos estan en colegio Catolico y no se nada de los school districts; Karen - thank you por el resumen de la fiesta - senti estar alli con todas ustedes - tanto asi que tuve que sacar mi musica de los 80's - y Ushi - gracias por acordarte de mi esa noche - no te imaginas cuanto me emociono!! Maga - gracias por la llamada. John a mi costado "talk to her in English, I want to hear it all!" y Alexandra con una foto de ti, cargandola de bebe, ensenandole a Michael que ella si te conoce! Gracias por todo chicas, de verdad que se pasaron con el apoyo y el amor y las oraciones - THANK YOU!! Besos...catherine
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December 2006
Dear family & friends!
For some of you this may be an update, and for some it may be breaking news. Please know that if this is your first update, it isn't because we didn't want to share, but rather because we needed to care for our family first before sharing the news. John and I are expecting Krause baby #5! Baby #5 - lovingly known as Baby Bear - is due in mid-May shortly before school is out. During what I thought was a routine ultra-sound it was very evident that Baby Bear was not developing "normally". An amniocentesis and several weeks later we have discovered that Baby Bear has Down Syndrome. While this is obviously not what we expected, we are holding on to our faith with as much strength as we can. We shared the news with our children last night during our Advent reflection and now feel that we can share it with our larger circle of friends and family. I want to share with you a bit of our family discussion so that you know our perspective a nd hop e for your support of us and our children through this life changing opportunity.
First, John and I view every life as a gift from God - and not a commodity we can chose to dispose of for any reason. Secondly, although we struggle with this sometimes in our day to day lives, we view each challenge as a gift from God. An invitation from God to take a short cut to get closer to Him. And while these challenges may sometimes feel bigger than we can handle, if we ask God for the graces we need He will shower us with the gifts of the Holy Spirit. When we talked with our children we started off explaining the medical and physical side of Down Syndrome - then accentuated that although there are some differences they will see with Baby Bear, that there are many more things that will be alike to them. We shared how lucky we are to have this news early so that as a family we can prepare the best home and family life for Baby Bear. We talked about making new friends through this. That we will meet many other families with child ren who have DS, and that through them we will continue to learn and grow, and one day we can help other new families. John talked about how some people don't understand what this is, and therefore can be mean or hurtful, that we need to stay strong and that we will make the world better by showing how to be loving instead of mean. We then focused on our faith in this situation. I told the kids that God loves and trusts our family very much to give us Baby Bear. That when He finds a home for His little souls that need extra care He looks for families where He knows there is a lot of love. I explained that while we are all imperfect we are usually imperfect in our hearts and need extra work to make them pure and loving, but that Baby Bear has different challenges, and that is why God gave him a pure and loving heart. So while we will help Baby Bear walk and read one day - he will help us to love unconditionally and enjoy the little things that we forget God gives us ever y day to remind us of His love. Although there is some fear, the kids are excited about what this means to our family, understand that things will change, but are looking forward to having Baby Bear join us. Now we are all praying for his heart and other physical parts that we still need to have checked out in the next ultra sound. Children with DS have a higher chance of health issues - some of which we will be able to tell through the ultra sound, and some that we won't. Regardless of your faith life (or you think we are just religious nuts! :-) ), we ask that you please keep Baby Bear in your thoughts or prayers so that he will continue to grow healthy. We ask that you please keep the rest of us in your thoughts or prayers - we know that while now we can prepare, as we get closer to Baby Bear's arrival there will be an increase in anxiety and fear - and that we will be relying on our friends and family to give us that extra lift when we might feel overwhelmed. I ask too that you keep John in your thoughts and prayers as he discerns God's calling for him - personally and professionally. I ask for your prayers and thoughts so that I too may be open to my calling in this situation and that I may continue to grow as a mother and wife to best care for my family. We thank you from the bottom of our hearts for your love and support.
catherine
