Peter - Carepage - December 31st, 2007

Just a quick note to share some great news! Peter went in for a weight check today and gained 3 ounces since Wednesday! YEAH!!!!!!!! Could not end 2007 on a better note!! We are hoping he contines to improve and gain weight so that we never have to use the feeding tube again. The news was too good to not share. May 2008 bring Peter even better health... Wishing you and your loved ones a healthy and happy 2008!! The Krauses

Peter - Carepage - December 25th, 2007 (Family Christmas Letter)

MERRY CHRISTMAS!! Earth to Krause Family!....Krause Family here!!

As we look back on the last year we have so many joys and a few regrets. So I am getting the biggest regret out of the way – we have done a lousy job keeping in touch! Despite writing a letter last Christmas, many of you never got it. Some of you may have via e-mail. Many of you have offered us support during this year and we have failed in getting out our THANK YOU’s…..so, please accept this sincere apology and gratitude for all you – our family and friends – who have been in our hearts, our thoughts, and our prayers of thanksgiving. And yes, we realize that Christmas day was upon us faster than we could say “Merry” – so we are thankful we have the 12 days of Christmas to still wish you a Merry Christmas – and of course a wonderful 2008 full of good health, love, laughter, family and faith!! Now, on to the updates! A year ago John had his dream job at The International – a golf tournament he was passionate about since inception while he was in high school. We were all devastated when it closed down in February leaving John without his dream. After much consideration, we decided to have John stay home again – for a little bit at least. This allowed John to work with his parents as they gutted and re-finished our basement. This project gave us a guest bedroom which was inaugurated by our parents and subsequently many house guests – whom we love having! It also gave us an office space which I (Catherine ) have been able to use as I continue to telecommute for UnitedHealth. What a blessing to be so close to home after commuting to Denver for 8 years in rain, snow and sun! Alexandra – she’s a teenager!! Can you believe it??! Neither of us feels quite old enough to have a teenager yet. At 13 she is tall, beautiful, smart, funny, faithful, curious and all around pretty amazing young lady. At 5 ft 6.1/4” she will no doubt be towering over her mother in no time at all. Alexandra is in 7th grade and still doing quite well academically - school is getting tougher though. She has developed a strong group of friends in and out of school. We are grateful for that as for many years it brought Alexandra heart ache and tears. Her circle of friends are all a wonderful group of girls from home schooling families, other schools in town and even a buddy up in Castle Rock whom she writes to on a regular basis. Alexandra played Volleyball again this year and has come such a long way from 5th grade – the best part was watching her just have fun. She opted out of some of the other sports activities as she felt they would detract from her academics. Alexandra dreams of growing up and being a family doctor and actress – don’t we all remember those days? She wants a house in the country, a wonderful husband and lots of children – biological and adopted. I look forward to meeting the lucky man that will marry Alexandra one day and together have their dreams come true as they make their mark in this world and leave it a better place than they found it.
Michael is on the verge of becoming a double digit young man as he turns 10 in January. Still handsome as ever, Michael is now in 4th grade. School has had its ups and downs this year – but Michael continues to be a walking book of general knowledge. His fascination with facts has not subsided. He still dreams of growing up to be a Marine Biologist and study sharks….a passion he is sharing with his younger brothers as he shares facts, pictures and interesting shark stories with them. Michael played basketball again this year – and WOW – what a leap! Last year Michael hovered around the activity waiting for the right time to get into the action. This year Michael was the action. As his coach said (in a complimentary way) he is “scrappy”. He just has a way of getting in there. And while he is not the “runner” on the team he is great at rebounds, stealing the ball and getting basket after basket after basket. He really was the top scorer by far! The highlight being when he scored the last basket as the buzzer rung at the last game! Michael is now preparing to head down to Peru as Alexandra did in 4th grade – and we are so thankful that my parents are still there to give him the opportunity to experience a world so different from Colorado Springs. Jack the man! Phew….Jack started pre-k this year and has yet to slow down. I know I’ve shared in the past how passionate Jack is about everything – his intensity level is off the scale – as his energy, his laughter, yes – his voice, but also his compassion, his love, affection, and joy for life. Nothing is mediocre with Jack. You can see it in the sparkle in his eyes, the excitement with which he tells a story, and the way a smile spreads across his face when he runs…or when he tells you he is “sad” about something. Jack will no doubt live life to the fullest! Despite being one of the youngest in his pre-k class he has a lot of friends, is doing great academically, and is in a committed relationship with a beautiful young girl named Elizabeth. She has stolen his heart as he blushes when he talks about her, prays for her every night and plans all the wonderful gifts he wants to bestow on her. His feelings are reciprocated as they have discussed their life together – but have not yet agreed on whether they will have 7 or 8 kids. Should be fun to see how this develops over their school years together! Tommy…Tommy-Tommy-Tom-Tom! He’s two!! Where does the time go? It seems like yesterday that I was all stressed out with his feeding issue that now seem so insignificant. He is the size of a little Viking – so all that worrying for nothing. Tommy began to stay home with John this fall and has been much healthier since leaving daycare. He is a mysterious little boy who can leave you pondering life. I jokingly say he has a streak of obsessive compulsive disorder – to which my pediatrician (after almost laughing himself of the chair) said “where do you think he gets that from Catherine?!”….yeah – I get the point! But, I think Tommy is a budding genius. He is curious but very analytical. He is very repetitive in his learning until he masters the skill. He can be very quiet one minute and in a fit of laughter the next. He can look at you with a serious look one minute, and wrap his arms around your neck the next as he gives you kisses and says “Me love you soooo much!” His verbal skills took off right after he turned two – and now can be very chatty…about the same thing – over and over again! I so enjoy when he keeps me company in the morning to drop the kids off at school….quiet while the others are rambunctious, he will then talk my ear off the whole way home!
Last but not least at all is Peter - Mr Peter Bear…..and where to start? Well, rather than give you a blow by blow on all little Peter has gone through - we invite you all to join our blog if you haven’t already. Simply go to www.carepages.com – you will need to register your name and e-mail address (take about a minute) and then access our page called PeterAlistairKrause (you need to type it in exactly that way). We have lots of pictures and updates there which we hope you will enjoy. Peter had a pre-natal diagnosis of Down Syndrome and a heart condition. As a family we prepared for Peter’s arrival by praying, reading, researching, signing up with agencies and meeting other children with Downs. Peter rushed into the world 10 days early on May 9th. He developed Pulmonary Hypertension which required he be in the NICU. After a week he exhausted his options in Colorado Springs and gave us quite a fright. He was transported by the Flight-for-Life ground team up to Children’s Hospital in Denver where he spent 5 weeks – between kidney failure, breathing issues, feeding issues and too many scares as his oxygen levels dropped dramatically – he came home for a few weeks in July. We enjoyed time at the pool together as a family before we had to head back up to Denver for Peter’s open heart surgery. He came out of the surgery like a champion and was home in 8 days. Peter has not slowed down since then as he continues to amaze us with his gentle nature, his wonderful disposition, his patience and his persistence. We have learned that so many things we take for granted really can be hard to learn – holding your head straight, getting neck control, rolling over or even breathing and eating. But Peter inspires us all to be little fighters as he keeps trying and trying and trying until he succeeds - then he moves onto the next challenge. It would take a book to share all we have experienced over the last 7 months with Peter – so I’ll try my best to summarize it. We have learned life is short but precious; we have learned that sometimes no matter how hard you try you can’t make things better – but you should never stop trying; we have learned to accept our inabilities and fill in those gaps with love and faith; we have learned that different really means VERY SPECIAL, and that when you think you aren’t capable of loving any more than you already do – along comes the next day and you are surprised to find your heart just got bigger. We’ve also learned that sometimes you just don’t know the right words to say to someone going through something you can’t even imagine – but that a smile, a hug or a simple “I’ve been thinking of you” can go a long way. We have learned that we truly are the luckiest and most blessed family – and for that we are thankful. So here we are, at the end of another year. We are tired – actually EXHAUSTED to be honest – we dream of simpler days and more sleep….but when push comes to shove – there is only one thing we would want to change. We wish we had the power of healing so that Peter could eat properly and have his Pulmonary Hypertension healed. But, until then we will keep praying for healing and hope that one day we can look back and say it wasn’t such a big deal. For now we will still have a bit of fear and a lot of love in our hearts as we watch all of our kids – beautiful and special in their own way – play together, grow together and love together. We wish you all a very Merry Christmas and a blessed 2008!! Love, John, Catherine, Alexandra, Michael, Jack, Tommy & Peter (and a big WOOF WOOF from Angel).

Peter - Carepage - December 11th, 2007

The last six weeks have been full of joy and turmoil. Peter decided from one day to the next to stop eating. Words can not capture the stress and emotions of struggling feed after feed while trying to balance work, a new job, kids activities and everything else it takes to keep the family moving forward. John and I are just so exhausted! For 4 straight weeks we struggled, hoping that somehow he was still gaining weight and being disappointed with each weight check. Peter continued to hover a little under 15lbs but fortunately did not loose weight. We started fortifying the breast milk again and introduced solids - but the challenge continued as he refused to latch on to anything. Friday he suddenly decided to start drinking again, and we are hoping is on an upwards trend. At today's visit he gained weight and is now 15lb 3.5oz - yeah Peter! The question now is whether we need to move forward with surgery to insert a G-tube straight into his tummy to assist with feeding. Dr. McCaffery is going to check with our cardiologist Dr. Duster and we should know more later this week. Since Peter has pulmonary hypertension there is significant risk with anesthesia. Please pray for the continued wisdom of these doctors as they consider the best course of treatment for Peter. I am trying to keep this to one page - so here are the highlights on Peter: * Halloween - he wore the same pumpkin outfit Alexandra wore as a baby but it was too cold to go out - so he helped hand out candy instead! * Before turning 6 months Peter was rolling back to tummy, and tummy to back - several months ahead of average for kids with Downs! At times he keeps on rolling until he is complete wound up in his O2 tube!! * Working on sitting with the help of a Bumbo chair - which has really helped with head control too! * Continuing to make choices during music therapy with Cathy - this really is Peter's favorite therapy. * Going from bearing no weight on his legs to figuring out how to push into the standing position while you hold his hands....now this is his favorite position and is guaranteed to bring smiles! * Hitting or surpassing all but one goal for 6 months in PT/OT sessions! * Saying a sad goodbye to nurse Felicity and physical therapist Sarah....but a warm welcome to physical therapist Kerry whom we LOVE!! She is doing such a great job with Peter!! She is also Sarah's sister-in-law so we can stay up to date on Sarah's adventures in the Ukraine. * Thanksgiving and getting to meet Godparents Bob & Sharon, and cousin Kristen...so much to be thankful for! * Putting up the Christmas tree and realizing how much has happened in the twelve months since decorating the tree last year when saying "next year Baby Bear will be with us!" * Moving from the craddle to a big boy crib - and loving it!! Things always seem busy in the Krause house, but I cherish the times in the evening when I can just snuggle up with Peter. It gives me time to reflect and remind Peter that he still has so much to teach me! I think about how much I love each of my kids...and while I have always told them I love them all the same amount but in different ways - how deeply truthful that is with Peter. While I spend my time preparing Alexandra, Michael, Jack and Tommy for the world - I find myself preparing the world for Peter. And watch out world because here comes someone amazing!! I've also learned that sometimes it doesn't matter how hard we try, we just can't do things. I am thankful that at the times I've been humbled into accepting my inabilities, that I have had my faith to catch me. I am thankful that God picks me up, wipes me tears, brushes the dirt off me, kisses my scraped knee and sends me back out into the world to learn something else. I'm thankful for answered prayers - even if they aren't the way I want them answered. With much love! catherine

Peter - Carepage - October 30th, 2007

Sorry, sorry, sorry - I can't believe how much time has gone by since the last update. Every weekend I keep saying "I need to update the carepage" and then Monday would arrive and another crazy week managing schedules, work and the house! It is amazing how time flies!! I am going to start off with the not-good but not-bad news. Peter had his follow up echocardiogram yesterday. The purpose being solely to check his pulmonary hypertension. While the results are what I expected, I was still disappointed. Peter's pulmonary pressures continue to be elevated and worsen when he is off of oxygen. We would like his pressures to be in the 20's - with 30 being the upper end of OK. Based on his prior echo we know he's in the mid 30's on oxygen but off of oxygen his O2 saturation drops from around 96% to 89% and his pressures jump to 46 within an hour. This is significantly better than before surgery, but no better or worse than what they were 2 weeks after surgery. I keep praying for a miracle. As I mentioned in the past, the hypertension scares me more than anything else Peter has gone through. In the back of my mind knowing that any day could be the day it becomes "fixed" and fatal. I pray to God that Peter heal and one day this too will become a distant memory as his heart surgery already is to me! Dr. Duster acknowledges that the risk is there for it to become "fixed" but remains optimistic that Peter is going to recover....he's just taking the slow road. He continues to believe Peter will continue his current oxygen needs till he is 12 to 24 months, and after that hopefully move to oxygen just at night and eventually nothing. Only time will tell.... On to some other news - Peter is AMAZING!! I hear it already - "Tell me more!!". I am sure you all think I repeat myself till I am blue in the face, but the fact is every day I believe this more and more even though I think that is not possible. Peter truly is amazing! He is grace under fire. Peter has the most pleasant and loving disposition of any child I have met. When he smiles, I melt. And when he just stares at me, I want him to see the best me I could ever be...if I could become a saint I would do it for him! His affection, his tenderness and his innocent vulnerability make me want to hold him tight and never let go! But, if I don't let go he can't accomplish what his little determined self wants to accomplish. It is amazing to see him get stronger and stronger every day. To see him learn from his different therapies and apply himself to them. His persistence is paying off! It seems like just yesterday that I worried he'd never keep his head midline. Now he does that easily, he brings his hands together in what looks like a prayer of thanksgiving. He smiles, and coos, and laughs. He answers you in babbles when you talk to him. He has <....drumroll....> figured out how to roll over from his back to his tummy and almost back. He is working on his arm strength to push himself up. His favorite game is having you hold his hands so that he can tighten and curl his body up to get into the sitting position. His reward being to chew on your finger till it is bruised (thank God there are no teeth yet!). And when he is tired he will curl is body back up and keep his head perfectly as he leans back down into a laying postion. He could spend hours going up and down from the floor to the sitting position. He has just this last week started bearing more weight on his legs. Where before he needed to be leaning against your body to push up and down, now if you hold him under his arms he is starting to bear weight and enjoy it. He loves it if you "eskimo" kiss him or let him try to kiss you back. We are soooo thrilled with how he has progressed with his physical therapy and were really bummed to have his therapist Sarah move away. She's done such a great job with him!
So Peter takes after John with his love of music. Give him a 'maraca' and some good music and he is in heaven! His eyes light up like the midnight sky over new years and you can see his little mind racing. No doubt one day he will be working his charms on the dance floor! His great music therapist Cathy has done wonders with him and is working on choices and sign language. Peter will actually look at flash cards and choose which song he wants next - he will sometimes pick the card on the right and sometimes the card on the left - after some serious checking them out. He appears to be signing "mother"....and while it may just be a failed attempt to get his thumb in his mouth - I chose to believe that I was his first signed word!! :-) Another highlight this month is having my parents here to visit. My mother was able to come after my brother's wedding in Spain (all together - CONGRATS ROGER & MONTSE!!). She has helped juggling the family schedule, kids activities and keep us regular with laundry. She has driven kids here, there and everywhere and done so with a smile. My father was able to recently come up from Peru which in itself is an answer to many prayers. After a very long and difficult recovery from surgery earlier this year, he was given the clear to travel recently. He's taken over driving the kids to school in the morning and steps in on a moments notice to play a game, find a child missing in action or just hold Peter so that I can take a shower! I just wish they didn't have to go home soon!! So here we are, almost halloween and so many of Peter's challenges seem so far away. And while the hypertension is still scary, I think I have found a balance that keeps me going. While I enjoy every moment with Peter as if it where the last, we sometimes just sit together where we can dream of the future. I won't ignore the risks, but I refuse to have them take away my dreams. Without dreams of tomorrow I would be depriving Peter of hope. So, between sleepless nights, long days, challenges at work and piles of laundry - I still dream of taking him to the pool next summer, his first steps, watching him run after Jack and Tommy, watching him grow and reach so many firsts still to come. And even better than the first will be the seconds and the thirds that will follow as he persists in mastering what challenges are to come his way. And yes, one day I think my Peter will be an Olympian. My loving husband thinks I've lost my mind, but on my to-do list is researching the sports and the special Olympics so that Peter and I can start talking about what he wants to do. I remember watching a show about the Special Olympics on TV back in 1995 when Alexandra was Peter's age. I remember watching it and having a feeling deep down inside that one day I would be there like those parents on TV. Now I feel closer to that odd feeling so many years ago....so with that said, it is late (I am sure I am almost out of space) and it is time to go dream of the amazing future waiting for our family - each of our children in their uniqueness and wonderfulness with which God made them - each special, and loved and such a part of the blessed life I've been gifted. Good night everyone!! Love, catherine

Peter - Carepage - September 13th, 2007

Just a quick update on Mr. Peter Bear. On Sunday Peter turned 4 months - it's amazing!! He seems to be making such progress lately that it is so exciting to watch. He loves to sit on our laps and blows bubbles. Well, sometimes he just down right spits on you. But hey, when you're a baby that is cute. He smiles a ton and when he's really into it, he will lift his head towards you and say "gggghhh". Sarah, Peter's physical therapist, was thrilled to see what progress he has made as he seems to be picking up momentum. His head control has come such a long way, he keeps midline so easily, he brings his hands together and holds on to toys. His tracking is not perfect, but he is doing so well at it - he really took huge strides after we received the swing with the mobile. He loves watching the animals go around and talks to them! He reacts to sounds and will follow voices. He is so well tempered and has adjusted to being part of a loud family. And....drum roll.....the most exciting part of our update is that his feeding has improved!! Yeah Peter!! Oh my goodness are we grateful. It felt like we had hit a plateau there for a while. He was consistently in the 400ml's per day range and on a bad day dropping to the upper 300's. He is supposed to be at 720ml's per day. Well, we have consistently been in the 500's for about a week now - and one day even hit 610ml's. The light at the end of the tunnel is getting brighter. Now, teething appears to be cramping our style a bit, but Peter is still trying to work through it - pretty much taking all of his feedings during the day. Leaving just the 11pm and 3am as one's we struggle with. I am hoping we can talk to Dr. McCaffery about increasing how much we give him during the day so that it is ok if he takes less at night - thus still getting his caloric intake. If we could get rid of the tube it would be sooooo exciting!! What I have realized in my very, very, very weary state is that Peter is teaching me faith. He is teaching me in a very real way that we don't give up, we trust in what we can't see and that our prayers get answered - just not always in our time frame. But, when pure of heart like Peter, then we smile knowing that God is taking care of us. Doesn't it take babies to teach us how to really trust?....I think of how much they trust us - to feed them, change them, cuddle them, and catch them when they decide to fling themselves in whatever direction. They've never really met us before, they don't have a plan B just in case -- they love us and trust us unconditionally without proof that we are worthy of this. If only we could keep this faith as we grow and become weathered by things of this world. Anyway....I ramble yet again! I hope y'all are doing great and enjoying the last days of summer. Thank you for journeying with us. And just in case you missed my very long ramble last time - my update did go over two pages. So read the bottom one first. I know some of you wondered why I started in mid thought and ended oddly. Hopefully if you read the first page the second will make more sense. And if not, please forgive me, I can't think of the last time I got a good night rest. One day! HUGS!! catherine

Peter - Carepage - September 4th, 2008

I apologize for the delay in this update...I know I promised one for this time last week. In my good old sorority tradition I will do the pro-con-pro approach to updates. First - the Buddy Walk was GREAT! Thank you to all who supported us, and especially our friend Mindy who despite being quite pregnant not only walked the 5k, but helped round up the Krause Kids! The event was a success and we all had a great time. The day ended with Peter winning the contest for the youngest participant with DS at the walk - so that was great. Of course I'd be dishonest if I said that was all there was to it - but the minute I heard there was a contest I was determined to get Peter in. After stalking several of the organizers it was finally time for the contest (after the walk). Well, my back was sore from carrying Peter in a sling and the oxygen tank for the 5k. But, when the time came I scooped Peter out of John's arms and ran towards the stage. Nice organizers in yellow shirts on either side begging me to not run, to not drop the child - but the panic in their faces was not going to slow me down from getting Peter to his first competition. Once on stage I thought Peter a sure winner as no one else was in sight. Then, out of the left came a baby that looked smaller than Peter. You don't want to know what my competitive mind was thinking. But, when they introduced their little boy as 4 months old, Peter was declared the winner at just 3.1/2 months old! Yeah Peter!! He has broken the 12lb mark, and so was looking big and chunky. Suffice to say "Roots" had nothing on me as I lifted my child with pride, made him wave his little arms and I grinned from ear to ear. John still laughs at the thought of Peter and I strutting our stuff....well, ok....me strutting my stuff and Peter along for the ride. With all the smiles he gives us, I'd say he had fun! :-) Onto the con update...Peter had his echo last Monday. His pulmonary pressures - while drastically improved from pre-surgery - are still elevated indicating that he continues to have pulmonary hypertension. After John brought him home and gave me the news, I sat rocking Peter for two hours and cried and cried and cried. I was so convinced Peter was healed of it. So confident he would be coming off the oxygen. So sure that we were over the worse and headed for a long and healthy life together. My confidence was broken at that time, and the panic of losing my child rushed forth again. I questioned God and told Him it was not fair that a little one like Peter have such burdens. He answered me through Peter's nurse Felicity - she pointed out that Peter is not in pain, he is happy and showers us with smiles. Then I realized that Peter is the only member of our family that could go through so much and still be full of love, smiles and hope. The rest of us would be complaining and quite dramatic. Maybe because he is so innocent, determined and full of energy he is the right one to endure such challenge. But as a mother it is humbling and very hard to not be able to take this on for him, or kiss it away. I talked to the doctor on Thursday wanting to know the prognosis as the fear of watching Peter die a slow and painful death was more than I could handle. He however remains optimistic that while Peter continues to have reactive pulmonary hyper tension, that it will be controlled through oxygen and hopefully improve. While it may never go away, he said Peter will need to be on oxygen until he is 12 or 18 months. Then may need O2 at night after that...only time will tell. Peter is the worse case of hypertension he has ever seen in a new born, and therefore believes it will take Peter longer than 99% of his other patients to recover. After many tears and prayers full of anger, frustration, begging and acceptance I am once again optimistic that Peter will continue to get better. The more I pray for Peter and just be with him the more hope fills my soul! So, I ask that you please continue to pray for Peter and his health. He is making small steps in the right direction with his feeding and I am hopeful will continue to make strides in the right direction with his pulmonary hypertension. His next echo is on October 29th. I am so thankful we have a great cardiologist who really knows his patients, goes to bat for his patients - and let's be honest - takes phone calls from hysterical, controlling mothers who ask 1001 questions (yep - me!). So ending on a high note - and the legend for the new photos - Peter had his first toe dip in the pool yesterday. Being that the pool was closing for the season, we didn't want to miss the opportunity. As a family we headed down to the pool with a couple of the neighborhood kids. Peter and I sat on the edge of the baby pool as Jack played in the water and Tommy circled the pool. Yep, Tommy will spend hours in the tub, but has refused all summer to get in the pool. Sigh...there is always next year! Well, Peter and I were enjoying sitting there working on his head control when we decided to take the plunge. John ready to capture the moment on digital disk (just doesn't have the same ring as saying on film - does it??) Anyway...I ramble again. Peter had was too busy chewing at his fist to listen to me explain what was coming. As he dangled over the water all his physical therapy paid off....he showed how well he can curl up his body as he kept his knees pretty close to his tummy. When he finally unfolded and dipped his feet into the water, he felt something new and wild. His legs spread out faster than you can say "splash" and then he was back on my lap chewing at his fist. And...thanks to modern technology...we have record of the first split second pool dip. Can't wait till next year!! Love to all, catherine

Peter - Carepage - August 22nd, 2007

Just a quick update to let you know Peter continues to do great! Monday is our appointment with the Cardiologist - so extra prayers for a successful echo would be great. We are very hopeful that we can start weaning the oxygen. Peter spends so much time pulling the canula out of his nose that I am not sure how much oxygen he actually is getting. He's doing great with his therapy - and while delayed compared to other kids his age, has come such a long way in the last month. We are still working on head control knowing that once he gets that a lot of the other things he is trying to do will come easier. Feedings are getting better - but we still have quite a way to go. We are encouraged that he is improving, so at his own pace he is headed in the right direction. Peter will no doubt teach us over and over and over again that he will do things - at his own pace! He has started sucking his thumb recently - and of course likes to pull the canula or NG tube out of his nose in the process! We still have to work him to get smiles - but they are so rewarding when we get them. I must have been working extra hard today for smiles because not only did I get a bunch of them - but I got the first couple of laughs too!! Just a reminder that our Buddy Walk is this Saturday - we would love to have more friends join us in the walk. If you have any questions on it please do not hesitate to give us a call at home (719-593-9503). There is a registration fee of $12 for adults, $3 for children. This fee covers a continental breakfast, T-shirt for all registered walkers, lunch and a chance to win some great prizes. The weather looks like it will be great - so hope we see you there. And if you can join us - don't forget we are team "BABY BEAR"!! Thank you to all who are supporting us in this effort. Next week I'll let you all know how the walk went and the results of the echo. Please keep praying for our little man so that he can continue to be blessed with all the miracles he needs....at His pace! God and Peter are definitely working together to remind me patience!! Hugs to all! catherine

Peter - Carepage - August 10th, 2007

COLORADO SPRINGS BUDDY WALK: On Saturday, August 25, the Krause Family will be walking in the Colorado Springs Down Syndrome Assn Buddy Walk to show our support for Peter and the more than 350,000 individuals with Down syndrome in the United States. I have signed up to be a team captain and want to do my part to make sure that each individual is given every opportunity to reach his or her full potential. Every step I take, every dollar I raise, will help ensure that each individual with Down syndrome in the United States will be able to do just that. Last year alone, over $6.5 million dollars was raised nationwide for local and national education, research and advocacy programs. I am asking you to - physically or virtually :-) - Buddy Walk with me to make a difference for Peter and all people with Down syndrome in our community. I know some of you are way too far away, but for those close by, I hope to see you at Buddy Walk 2007! Follow This Link to visit my personal web page and help me in my efforts to support Colorado Springs Down Syndrome Association through learning about DS, sponsoring our team, or joining our walking team! ****************************************************************************** Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser: http://buddywalk.kintera.org/faf/r.asp?t=4&i=235058&u=235058-185467992&e=1203001142 ******************************************************************************

PETER UPDATE: Peter continues to grow, and yesterday he turned 3 months!! It is amazing to think of all he has gone through! He broke the 11lb mark this week making 11lb 3oz on Tuesday. He is becoming more conversational each day - and we love hearing all he has to say! All the Krause kids are chatty - but I think Peter might just have us all beat! Peter is still struggling with his feedings, but we are seeing some improvements...yeah Peter. The Speech Pathologist is coming on Thursday at 7:20am (way early!) to further evaluate Peter, help us with his feedings, and get him prepared for solids. We are very excited to have her help! HUGS to all! catherine

Peter - Carepage - August 6th, 2007

Just a quick update on Mr. Peter Bear....what an amazing little boy! He had his first week being at home with John while I was at work. They bonded over physical therapy exercises and feeding times! Peter weighed in at 10lb 12.5oz on Tuesday - a whooping 8oz gain over the prior week. We are sure he will break 11lb before our next appointment tomorrow. Peter is now up to 4.5oz of milk every 4 hours and not yet keeping up with it. While it is great to see him grow, I am still a bit stressed about his feeding skills. He will consume about 50% of his milk orally, and the rest we have to put through the pump. We are trying to get a feeding/speech therapist in on a weekly basis to help Peter. We had a lady come out and do an evaluation. She gave us some exercises and massages to help strengthen his facial/jaw muscles. From what we are told, she is the best of the best - but as a result she is very booked up. We are hoping to hear from her this week and have her help getting Peter through this and ready for solids in a couple of months. Peter continues to work very hard at his physical development. I am so inspired watching my little man. He will prevail on pure perseverance! His head is getting stronger and stronger. He is doing much better on his tummy, and at times will scoot his legs under his tummy working towards a crawling position. He's working on his upper body strength, and is doing great at getting his head midline and keeping it there. Still not so good on tracking toys - but hey - why track toys when there is a whole world out there to explore. Believe it or not, he is teething already. As a result he is bringing his hands to his mouth and munching on his fists. Until Peter I didn't realize what an accomplishment this was....so unlike my other kids who still hear "keep your dirty fingers out of your mouth", Peter hears "Way to go big guy!". Alexandra filed a grievance with the fact that Peter can put his dirty fingers in his mouth and the rest of them can't! :-) If she gives up on her dream to be a doctor - she will no doubt make a great lawyer!! Please continue to pray for Peter's health. We are fighting a cold around the house, so praying for Peter to not get the brunt of it. And, as usual, for his continued recovery and feeding skills. HUGS! catherine

Peter - Carepage - July 31st, 2007

Buddy Walk Information: The Buddy Walk is an event that promotes awareness on Down Syndrome in the community, while raising funds for the local Down Syndrome Association chapter. John and I are still getting information on the Colorado Springs one, however, our friend Aileen is sponsoring a team in the Denver (Mile High) Buddy Walk coming up. You can visit www.mhdsa.org to get additional information. If you are interested in joining or sponsoring the team, the team is "Rachel's Runners". Rachel is Jack's age and has Down Syndrome. If you have a chance to browse the site, about half way down the home page you will see an article called "How My Child Inspires Me; by Aileen Schwarz". This is Rachel's mom and she shares her story. Good luck Aileen! If and when John and I get information on the Springs buddy walk I will share it through an update for you local folks. Thanks! catherine

Peter - Carepage - July 29th, 2007

Sorry for the delay in an update. I went back to work this week and still trying to get organized and into a routine! Peter had a very good week. On Monday - at exactly 2.1/2 months Peter gave us his first smile, then second, third and one more. We were so excited to see his little eyes scruch up and a smile form on his lips. We've been working him hard to get more out - but have only been worthy of a few more. We are hoping they will become more and more frequent!! The cardiologist visit went fine - Dr. Duster is tickled with Peter's progress. I had hoped we would start the oxygen weaning soon, but Dr. Duster decided to wait till the end of August for the next echo. Peter's scar is healing beautifully. It is amazing how resilient little ones are - so soon after his surgery and you would not know he had major surgery but for the line up and down his chest. We saw our pediatrician Dr. McCaffery on Tuesday. He is thrilled with how active Peter is, and says it is a good indication of his potential and IQ. Once again Peter just about wiggled off the table, and wacked Dr. McCaffery as he tried to peer down his throat. The throat has healed and all else looked and sounded great. Peter broke the ten pound mark by gaining an amazing 6.5 ounces in a week - making it to 10lb 4.5oz! Yeah Peter!! We still need the feeding tube which is a bummer, but Dr. McCaffery continues to help us make progress in the right direction. Peter has moved from eating 2.1/2 ounces every 3 hours, to eating 4 ounces every 4 hours. Spreading out the feedings should give him time to digest and get hungry, and the larger amount should expand his tummy a bit to also help him feel hungry and feed better. We've seen some improvement in his eating - but not good enough to get rid of the tube. We ask for continued prayers for Peter and this skill....we really don't want to have to get a G-tube! Being the wacky mama that I am, I will just about feed him upside down if I have to in order to have him eat. I have often got him to eat the whole feeding through the bottle - so there is a light at the end of the tunnel. Having the longer gap between feedings has also been a real blessing for our family - giving us an opportunity to do more together as a family. We were so excited to all go to church together today - also Peter's first Mass....and he slept right through it! Lastly, Peter continues to make progress with his physical therapy and we are so excited. We recently saw other kids his age, and realize where he is delayed. However, week over week we see him achieve more and more. I get so excited when he brings his knees up to his tummy, hands together or keeps his head in the mid-line. It has taken Peter to show us how to appreciate the little things....life is more often full of little accomplishments that build into something amazing, than just one big one. Some days it is easy to get busy and forget to be thankful. Then I'll see Peter do something we normally would take for granted - and my world stops spinning for that split second so that I can truly get excited and chalk up one more on life's board of blessings!! I've posted a couple of new pictures. Hope you enjoy them! The plan at this time is to try and post and update on each weekend until Peter is off oxygen and feeding tube. Thank you for reading each of his updates, and giving us encouragement during this awesome adventure we've been on. I look forward one day to sitting with Peter, reading these updates to him and explaining to him how special each and every one of you is that has stood along the road and cheered us on during the journey. Peter really has an amazing cheerleading squad - thank you!! Hugs! catherine

Peter - Carepage - July 17th, 2007

Peter will be 10 weeks tomorrow! I will be going back to work some time next week. It's amazing to think of all that has transpired in such a short period of time. I just wanted to send out a quick update on The Man. Yesterday he visited Dr. Duster - our cardiologist - whom was tickled with how well Peter is recovering. His wounds are healing nicely, he scored well on his oxygen saturation rates both on and off of oxygen, great EKG and a great echocardiogram. The echo showed that Peter's pulmonary hypertension is close to gone - yeah!! The pulmonary pressures were slightly above the higher end of normal, but the doctor seemed pretty convinced that Peter is doing great. He cut Peter down to a single dosage of diuretics and is going to leave him on oxygen for a little longer. He wants to give the lungs some time to heal after all they have gone through. I am hopefully Peter will be off oxygen in the next 3-4 weeks. Today Peter had a visit with our awesome pediatrician - Dr. McCaffery. He weighed in at 9lb 14oz, so about a 6oz weight gain since leaving the hospital a week ago. Amazing! And we don't need to fortify the breastmilk any more....we just need to keep an eye on his weight. His right lung sounded good so he continues to or has recovered from the collapsed lung. All is else was good and Peter just about threw himself off the exam table. He has learned to arch his back and push with his feet to turn around. The only set back we seem to have experienced since Peter came home was his feedings. As most of you know, the topic of feedings has been stressful for me with other kids - and I was loosing strength running into this with Peter. He had slowly been increasing the amount he was taking orally until this last weekend when he took a huge turn for the worse - barely taking anything orally. It became quite stressful as I was convinced I had "broken" Peter by pushing him too hard to take more orally. He was pushing everything out of his mouth and quite mad at it. I started working with the pacifier and he did great with that - just not the bottle. I have spent a small fortune on different nipples - just to have it work once and then be rejected after that. John and I had been concerned with Peter's throat while we were at the hospital, but cardiologists just don't check that out no matter how many times you express the desire to have it checked out!! :-) We assumed things were getting better, so unsure on the rejection of the bottle. Dr. McCaffery spotted that Peter's throat seemed quite red, and has given us some medicine to help him heal it. He concurs that Peter has what it takes to eat well, we just need to help him get there. Peter has shown some improvement this afternoon, and I hope that with the medicine he will continue to improve. It would be great to be off the feeding tube as I am sure it is no fun having a tube dangling down your throat. I ask that you continue to pray for Peter and in thanksgiving for the miracles of healing he continues to receive. I continue to pray for this too, and have felt the need to pray for Peter to be strong against the threat of leukemia (sp?). Children with Downs are at a 15 to 20 times greater risk than typical kids, and it is something that has bothered me since we received Peter's diagnosis. Peter's Godfather Bob received a miracle of healing from this same illness. I pray that Bob carried this burden for the family and that Peter will be spared challenge. Thank you to all again for all your many gifts and blessings!! Love, The Krauses.

Peter - Carepages - July 10th, 2007

Dropping you all an update from Colorado Springs! Yep, I got to the hospital this morning to find out we were being discharged. After running around to pack up, clean the room at the Ronald McDonald House and get John up to Denver - we boogied on out of there and home in time for dinner (thank you Kristen Z!). Peter continues to do well, and improving with his feedings. I am confident that as he continues to heal from being on a ventilator, he will do better and better. It is amazing to think 8 days ago he was having open heart surgery and tonight he is asleep upstairs! We will be setting up follow up appointments with his pediatrician and cardiologist so as to baseline him post-surgery in Colorado Springs. It is so exciting to get started with his therapy again and watch him take little or big steps forward. It will take us a few days to get back into the routine, and John is not excited to be sleep deprived again. We hope one day Peter can actually nurse so that it will be easier on all of us! Thank you again for all your support, prayers and encouragement. I will try posting some photos in the next couple of days, and will continue to post updates through out Peter's recovery. I will likely go back to a weekly schedule. Now I'm going to go stare at my beautiful and wonderful little sleeping angel. HUGS! catherine

Peter - Carepages - July 9th, 2007

Just a quick update to let you know that Peter continues to take more steps forward than back...and we are hopeful these steps will get us home in the next couple of days! It sure would be nice to spend some of my maternity leave at home!! Peter's digestive system seems to be on track and the poop keeps coming! Yippee!! We had noticed Peter appeared to be in some discomfort - especially in his throat. As a result he really didn't want to drink from the bottle, and would grimace when swallowing. Yesterday they put him on scheduled Tylenol (as opposed to on demand), but it didn't do the trick. After talking to the docs again today, they put him back on Tylenol with codine - and it seems to be working. He is resting better and during his last feed sucked from the bottle like a champ. Yeah Peter! He was almost off oxygen completely, but the cardiologist wants to leave him on some oxygen for a period of time to ensure the pulmonary hypertension continues to improve (go away). The echocardiagram this morning showed there still is moderate pulmonary hypertension - but they are optimistic it will continue to improve. We will need to work with the cardiologist in Colorado Springs to determine the amount of oxygen and when he can come off of it. We are hopeful no more than 6-8 weeks. Today was a special day as Peter turned two months. It feels like such a long time since he blessed us with his arrival, but it is exciting to know we still have so many more days, weeks, months and years to marvel in the blessing that he is to all of us. John and I marvel at how Peter engages, and is present to those around him - and he is working on moving from little grins and smiles to a full fledged giant smile! You really sense by the way that he looks at you that he is in full relationship with you for that period of time. No doubt God made him very special!! Hugs to all! catherine

Peter - Carepages - July 7th, 2007

Peter graduated today! This morning he was moved out of the CICU and up to the step-down unit (CPCU) in preparation to go home. He was a bit fussy this morning as he tried to get a poop out...he was very happy after he accomplished his big goal. He has been much more his normal self today - periods of playfulness and periods of sleep, and once again very able to just focus in on you as you talk to him, follow a color he likes, or turn to find the face of a new voice. He is free of all his lines, but a peripheral line they are keeping in his foot just in case they need to access it. He is off almost all drugs - taking only Tylenol and a diuretic orally. He is still on the high-flow oxygen/air blend, but they are starting to wean him down. He is doing so awesome! God is good!! From what I can tell he has a few goals to accomplish in order to go home - wean down on the oxygen although he will most likely go home with some, and start to eat orally and have regular bowl movements. I gave him a try on the bottle tonight. It was a bit of a strain for him but he took some of it. The little look on his face would lead me to believe his throat is still sore from being intubated (on the ventilator). All in all, Peter had another great day. It is hard to believe 5 days ago he had major surgery and today he was almost back to his pre-surgery self except more pink! His breathing has been doing so well, it is just great to see him! Just wanted to give you a quick update. John will be back with us tomorrow, so I know Peter is looking forward to seeing John as much as I am. The kids will be headed back down from Sout Dakota on Monday - so I am hopeful we will all be together for John's birthday on Saturday. Big hugs! catherine

Peter - Carepages - July 6th, 2007

Peter had a great day today! All steps forward!! When I came in this morning, Peter was already off the CPAP and back on high flow oxygen/air blend. He is down to 30% oxygen and holding his own. His saturation rates, blood work and respiratory rate were all great. He had two "lines" removed today leaving him just two IV lines - the one in his wrist and a new one in his foot. He continues to wean from drugs, and we believe by tomorrow morning the big one in his wrist will be out. If Peter continues to do well, I have a feeling we will be moving down to the step-down unit soon. They are trying to jump start his digestive system. They are starting to feed him again very small amounts of breastmilk through the feeding tube. I am hoping we can try bottlefeeding within the next couple of days. Peter was quite restful today and showed no signs of discomfort. This afternoon he decided it was time to wake up and play. His eyes were all over the place as he moved his arms and legs wildly. He also has a funny thing going with his tongue where he loves pushing it in and out, curling it, stretching it, etc. Suffice to say the tongue was getting quite a work out too. Because he was so awake he was given a treat, and allowed to hang out in a swing for a bit - he loved it - it swings back and forth as well as sideways, has a colorful fish mobile that turns too. Needless to say - quite stimulating and Peter was enjoying every second of the ride. I know what we will be picking up after Peter comes home! Thank you again for all our support and prayers - when I look at Peter I know his healing is a miracle! Love, catherine

Peter - Carepages - July 5th, 2007

As with any recovery - it is two steps forward and one step back. All in all Peter is doing really well. He continues to move forward with having tubes removed and drugs reduced. This morning John and I were surprised to find Peter off the ventilator and on high flow oxygen. While Peter did a good job maintaining his saturation levels, this afternoon he was breathing very shallow and fast. The latest x-ray showed some lung deterioration - especially in the area of the right lung that had collapsed. In order to help his lungs inflate properly and encourage him to breath deeply he was moved to a CPAP (continuous positive airway pressure) - basically a mask over his nose that pushes enough air to keep the lungs inflated with out breathing for you like a ventilator. It looks like an infant version of the mask folks use for sleep apnea. Within minutes of being on it he showed improvement. They will be taking another x-ray in the morning to determine next steps. We are confident that this is just another step in Peter's recovery and that he will continue to move forward. We were very excited to get to hold Peter today. While we will now need to wait until he is off the CPAP, we can rejoice in the time he was in our arms. I even took a little nap with my little man this afternoon. Another positive is that so far he has not shown signs of pulmonary hypertension so we are encouraged that the surgery really was the necessary step to help him heal. On a different note, we were able to get back into the Ronald McDonald house - yeah!! John headed back to the Springs today, but hopes to be back sometime this weekend. We are extremely grateful for all the blessings we have received. Hugs! catherine

Peter - Carepages - July 4th, 2007

Today is not just July 4th....today Peter is 8 weeks old!! In his short life he has gone through more than most of us will in a lifetime. A 7 day facial treatment in the Springs (the oxygen mask), a couple of days and nights under disco lights (jaundice treatment), a therapeudic ambulance ride with three hot babes, messing with doctors by going blue and trying out kidney failure, keeping Papa and Mama up day and night at home, and showing off (literally) his heart for all to see. Peter is being forced to slow down for a bit and rest :-). Yesterday Peter did the two things they wanted him to do - show improvements with the third of his right lung that collapsed, and pee. Although he is still healing, the x-ray taken last night showed a drastic improvement from the one earlier in the day. The right diuretic cocktail and the pee keeps flowing. Way to go Mr. Peter Bear!! Today they tried for a second time to take Peter off the ventilator, but not successful. While he is breathing on his own, he still has some pulmonary edema (fluid around the lungs) that makes him need the ventilator to keep his oxygen saturation rates. They are going to keep treating the edema and give him periods of time to 'practice' being off the ventilator. They are hoping that maybe tomorrow he can come off of it. Our friends from the NICU/ICC area said it is actually good to have him still on the ventilator as it allows him to be more sedated to manage his pain. Having your chest bone cut open, spread apart and then closed up with stainless steel 'stitches' is painful for anyone to go through. Because Peter has been doing well, a lot of the other tubes were removed today. The two 'drainage' tubes were removed as well as the pace maker wires. The bandage was taken off the incision and I was very impressed with what a nice job they did. I was expecting him to look like he had a zipper down his chest - it is actually not much more than a pencil mark with the stitches on the inside. Peter is starting to loose some of the swelling and look more like himself. He has periods of extreme rest and some of wakefulness where it looks like he is dancing the can-can as his legs kick up and down sending his blankets flying. His heart rate and respiratory rate would indicate that most of the time he is comfortable, which as parents is very reassuring. We are so proud of our little man and all he continues to accomplish. We look forward to holding him in our arms again soon!! Thank you again for all the wonderful support you have given us....and especially to April, Ben, Chris and Tita whom made surgery day so enjoyable and shared in our joy of seeing Peter after his surgery. Love to all, catherine & john

Peter - Carepages - July 2nd, 2007

Green represents life - grass, plants, trees. Peter went into surgery at 8:30am with a green mohawk. Around 3pm John and I were taken back to the CICU (cardiac intensive care unit) to see our little man starting a whole new phase of his long life!! Peter did great! He is resting right now, and no doubt dreaming of going home soon - yeah! John and I got to Denver around 7am. We were greeted by Peter's primary nurse in the ICC - Kodi. She gave us support and Peter a big kiss for a successful day. After checking in we moved to pre-op. We gave Peter his green mohawk while the nurses got him all ready for surgery. I was staying strong and doing great until they told me it was time to hand him over and watch them walk away with him. Peter was awake at the time and no doubt thinking "when will you quit kissing me mom?". We spent the next endless hours in the waiting room where we received regular updates through out the surgery. We were very blessed to have our friends Chris, April, Tita and Ben come to give us moral support. The time was filled with lots of laughter and I'm sure that energy reached Peter in the O.R. Around 3pm we were taken back to see Peter. Despite all the tubes and wires, Peter looked well to both John and I....his hair do intact! Peter is on a ventilator which is inserted through his nose. By early evening he was breathing on his own, so they are weaning him off the ventilator. We hope to have it removed within the next day or so. He has two tubes draining blood coming out of his abdomen - one drains blood from the cavity around the lungs, and the other the cavity around the heart. Both are draining little fluid which is great. He also has two sets of wires coming out in the same area - they are inserted to his heart and can be rapidly attached to a pace maker if necessary. He has an IV in his foot, a catheter, a line into his arm for easy withdrawl of blood dispensing of pain medication. He also has a line going in around his groin area where they get blood pressure readings from. Peter has some minor swelling, but is healthy and pink looking. It is still too early to tell the effect on the pulmonary hypertension, but the signs are positive. He did have a small portion of his right lung "collapse" but the doctors are positive he will recover from that. He has shown some signs of discomfort, so they are closely monitoring him and adjusting his pain medication. While I know there is still a recovery period to work through, as a mom I have this gut sense that he is doing great. When I sit next to him I feel the miracle of healing going on inside his little body - and I am in awe! The energy he radiates is so full of life!! We are sooooo thankful for this miracle, for the prayers that brought it on and can't wait till Peter can be in our arms again. Sorry this is short, my attention span is short due to NO sleep. John and I are going to spend some more time with Peter, and will be sleeping at the hospital tonight. Love to all! catherine

Peter - Carepages - June 30th, 2007

Just a quick update. Peter had his pre-op appointments on Friday - including x-rays, echocardiagram, and lab work. John and I met with several folks too. All in all, Peter did great and the surgery is planned for Monday. We need to be there by 7am, and surgery will begin at 8:30am. We no longer have Francois as the surgeon - which we are bummed about. We now have Dr. David Campbell whom we did not have a chance to meet. We hear he has 30 years of experience, so confident that he will also do a great job. Please keep him in your prayers! The surgery is scheduled for 4 hours, but we hear it could be 4 to 6 hours. There is a nurse that will come out after each phase of the surgery to let us know how it is going. John and I will be hanging out in the surgery waiting area for the duration of the surgery. If you are able to stop by and say hi, the waiting area is on the second floor. If you take the main elevators up to the second floor, exit to your right and that large room is the surgery waiting area. Thank you again for all your help and support! We will post an update on Monday letting you all know how the surgery went. Blessings, catherine

Peter - Carepages - June 26th, 2007

Just a quick update....Peter had an appointment with our very awesome Pediatrician today. He was up to 9lb 6.5oz...over a pound more than when we left the hospital less than 2 weeks ago. We do know that some of it is fluid in his lungs, but he still has done well gaining weight while at home. His oxygen level was increased Friday and by Sunday I knew there was an issue. We adjusted to O2 yesterday and gave him some extra diuretics. It helped, but today he showed he was still retaining quite a bit of fluid so we are increasing his diuretics to twice daily and a slightly higher dosage. He appears to be quite healthy otherwise, so we need to keep him that way until surgery. Friday we have pre-op appointments up in Denver. We need to be there before 8am which should be fun on a pre-holiday Friday! The appointments take up at least half a day, so we will be back in the evening. Unfortunately we can't meet the surgeon as he is out this week. Monday is his surgery at 8:30am and we need to be there much earlier. The surgeon is named Francois - and is known as the BEST pediatric cardiac surgeon in the WORLD....only the best for Peter! Please pray for Francois and the medical team that will be working on Peter. The documentation we have says the surgery is scheduled for 4 hours and is the first of the day. We could get bumped if there is an emergency, so we will be praying that is not the case. John and I will both be at the hospital before, during and after the surgery. If you are in the area and would like to stop by to say hi, share a hug or say a prayer during the surgery, please know that you are welcome! As to the younger kids - they are going on a road trip! God bless the family of saints I married into!! Greg & Brenda will be helping us here, and driving the kids up to South Dakota on Tuesday. They will be there for John's parents 50th Wedding Anniversary celebration...yes - 50 years - isn't that awesome?! Hopefully they will do well, and stay with Grandma and Grandpa until they come back down to Colorado. If the little ones get too homesick we will need to re-adjust the schedule and have John come home early to be with them. I am hopeful they will love being in SD, so that John can be with Peter during this very trying time. The reality of open heart surgery on such a little one is hard to swallow - I know Peter will need John, just as I will need him too. Will let you know if anything changes or any new information comes up. THANK YOU for all your prayers. We beg the Lord for healing of Peter - especially his little heart and lungs!! HUGS! catherine

Peter - Carepages - June 25th, 2007

Peter's heart surgery has been scheduled for next Monday (July 2nd) at 8:30am in Children's Hospital (Denver). We saw our Cardiologist Dr. Duster on Friday. He tested Peter as I mentioned, and the good news is Peter still appears to be very "reactive" - meaning his pulmonary hypertension responds to oxygen. This is good! However, as I mentioned previously, he is concerned about it becoming fixed (permanent) if not aggressively treated. This requires his heart to be repaired. In many cases the heart repair is all that is needed, in some cases intensive oxygen therapy is required. The reality of the situation is hitting me like a ton of bricks. I've wanted to have Peter's heart fixed, but honestly I am now scared. I know God has a plan for little Peter, and that whatever happens, he will be the loving arms of Christ. But, my heart aches at the thought of how physically hard this will be for Peter and the risks associated with the surgery and his recovery. I ask that you continue to pray for Peter - his heart, lungs, recovery, feeding and any other little part of him in need of a miracle. John and I have learned that miracles come in all shapes and sizes, and that Peter's miracle of healing may be at the hands of surgeons...God answers our prayers in His own way! Keeping this short for now, but will update as soon as we have more information. We now need to figure out what we are doing with the three boys at home, etc. Thank you again for all your prayers, words of encouragement, wonderful gifts and yummy meals! love, John & Catherine

Peter - Carepages - June 20th, 2007

We've been home for a week and Peter is 6 weeks old today! John and I are quite sleep deprived, but working well as a team to keep somewhat functional. Peter has enjoyed being home, and after a couple of days adjustment seems to be finding his groove again. He is a bit of a night owl, liking to stay up in the early and late evening to look around and socialize. He is such a wonderful little boy, and we love him more and more each minute! First week has been quite busy plus we had the challenge of a sick Tommy which was not good. We're praying hard for health in the family! We are getting our arms around the different nursing and therapy support we get from different organizations and will actually be starting Peter with 'music therapy' next week too. Peter visited Dr. McCaffery on Friday and was up to 8lb 8.5oz. We adjusted the diuretics he is on, and he seems to be responding well. Monday we saw the Cardiologist Dr. Duster. The examination showed he still has a large hole in his heart and continued pulmonary hypertension (I'll explain more below). He was however up to 8lb 12oz and did not appear to have excess fluid in the lungs - yeah! We are going back on Friday for additional tests to evaluate his pulmonary and cardiac condition as there is a risk it would become permanent. We sensed from Dr. Duster that unless he sees something different on Friday, he is going to be pushing to move forward with the surgery as opposed to waiting much longer. More to come, but we may be back up in Denver sooner than we had originally anticipated. Will update you again after we have more information. Now, for those of you who don't like detail or have great medical backgrounds - skip this section! Otherwise here is my attempt to explain in a little detail Peter's medical condition as I've had several questions with regards to what I've update over the weeks. Peter's Down Syndrome is an additional variable in this equation. When babies are born generally the first breath or cry 'turns on' the proper breathing mechanism and pulmonary pressures. Occassionally it will take the baby longer to transition into the world, but oxygen for a few hours or days will resolve this issue. Peter has in essence not transitioned fully - as a result he was diagnosed with "persistent pulmonary hypertension in a neonate" (PPHN). This means that his pulmonary vessels were clamped down and his pulmonary pressures were elevated - causing the heart to have to work harder to get blood to his lungs to become oxygenated. There are obviously long term risks associated with this condition - both to the heart and the lungs, as well as the rest of your body because it isn't functioning correctly. Often this pulmonary hypertension is as a result of a heart condition. Peter has a 'ventricular septal defect' (VSD) - meaning a hole between the bottom two chambers of his heart. One chamber is meant to pump blood to the lungs, while the other pumps blood to the body. In Peter's case the hole is large so the blood mixes. Normally with a VSD you can hear a murmur as the blood 'swooshes' between the two chambers and mixes. The concern with Peter's case is that they aren't hearing a murmur. This is because his pulmonary pressures are so elevated the heart is struggling to pump blood to his lungs. Thus his oxygenation levels are low and he is more gray/blue as opposed to pink in coloring. In most cases the repair of the VSD causes the pulmonary hypertension to resolve itself - or be treated with high levels of oxygen to get the pressures normal and get rid of the 'clamping' or 'twitchy' pulmonary vessels. This would be considered reversible. There are cases in which the pulmonary hypertension becomes "fixed" or permanent. While there are treatments to extend and provide quality of life, it is a fatal condition with a short life expectancy. As the doctors up in Denver heard me ask a million times - we want to ensure Peter is treated before anything becomes permanent. As I mentioned, the PPHN is putting additional pressure on Peter's heart. The Down Syndrome is an additional variable in the equation for his treatment. Because there are not extensive studies and medicine is not an exact science, there is no way to say "on day xx the pulmonary hypertension becomes permanent". So generally no one could answer our question as to when would we be nearing a danger zone, and remained optimistic that repairing the VSD would allow for the resolution or treatment of the PPHN. Dr. Duster, whom we saw earlier this week, has concerns based on Peter's case (and his response to treatments) and other experience with babies with Downs that the hypertension could become permanent sooner rather than later. The earliest he has seen is 3 months of age, but aware of a case (residing at sea level) where it occurred at 2 months of age. Although it gave us a fright, it was finally a possible timeline. When we go back on Friday they will be doing an echocardiogram and evaluate Peter at different oxygen levels to determine changes in his pulmonary pressures. His initial stance is Peter is a higher risk case and should be going into surgery- his preference having been to have it already have been done before we were discharged. His evaluation will be more accurate to our living conditions as the 1,000 ft difference between Denver and Colorado Springs can cause differences in symptoms and treatment. Geez....I hope that all made sense! On a different note, I did also mention that Peter had experienced kidney failure. It appears a combination of the antibiotics he was given in the Springs, the reduced fluid and the diuretics caused the failure. At time of discharge Peter's kidneys were operating normally - yeah! We continue to pray in thanksgiving for all the support we have received, as well as for wisdom and compassion to guide the medical staff caring for Peter. As parents we want Peter to have the greatest chance for a long, happy and healthy life. We ask that you join us in praying for these wonderful people, as well as for Peter so that he will be healed before any permanent damage is done to his body or neurological development. Give me a few minutes as I am going to try posting some new pictures of my very handsome young man. There is just something magical about him that makes me want to be a much better person, no matter how hard that is some days. Love to all! catherine & john

Peter - Carepages - June 14th, 2007

We are home! We got out late yesterday and were met by the oxygen suppliers when we got home. The poor guy didn't leave till almost 9pm so it was a late night all around. Peter has been a big trooper and going with the flow. I can't tell you how wonderful it was to be home! As nervous as I was, the NICU suddenly felt a million miles and years away. Our home seemed so small, cozy and welcoming after being in the big hospital. We have things all over the place as it was amazing how much we stuffed into the Honda for the ride home. We figure it will take a couple of days to get settled in, put things away, and get a decent routine going. John was a real trooper getting up with me at night so that I could pump and he could feed Peter. It definitely takes two! We are both tired but just so happy to be a family again!! The kids were thrilled to have us home and Tommy will not let me out of his sight. He is so big and heavy compared to Peter. Alexandra and Michael are so excited to hold Peter and help out. The next week is going to be crazy as we have or are setting up appointments with our pediatrician, cardiologist, physical therapy, nursing, occupational therapy, "early intervention", etc. Ahhh! Suffice to say things don't slow down, but I hope we have learned enough to try to be "present" and remember how wonderful it is to have a new life in the family and be together. I will continue to update the Care Pages to keep y'all updated - I just won't be doing it daily. As excited as we get about little things like Peter bringing his hands together or letting out a giant burp, we realize we all don't need another soap opera. I will most likely update weekly so that you know what progress has been made, or when we get to establishing a surgery date, etc. Promise to post pictures soon! Thank you once again for all your love, compassion and support during this challenging time. We are thrilled to have Peter home and keep telling him about all of you that helped get him here through your prayers and well wishes! hugs! catherine & John

Peter - Carepages - June 12th, 2007

Just a quick note for now. Things are crazy trying to get everything set up to come home. I have a huge list and feeling lonely as I haven't yet snuggled my little man today...sniff! John reminds me I have plenty of time to do that!! At this time John and I will be spending the night at the hospital to get a "trial run" in before going home. We may be going home tomorrow, if not it will be Thursday. I did want to let you know that Peter's interactions and exposure will be restricted. Due to his heart condition it is imperative that he be kept healthy. We need to figure out what that will mean with basic things like going to church and managing our other kids desires to hold and kiss him. The nurse managing Peter said we needed to be very careful. So while we look forward to having many of you come and visit after we get home, please understand if we are a bit picky on times, making sure hands are washed and avoid runny noses. :-) Not sure if I will get another update out today, but will try to get one out tomorrow early if we are staying, later if we are home. Thank you once again for all your love, support and prayers. I'm giddy today and typing a million miles an hour. Still prayerful for a miracle with Peter's heart - but knowing the miracle might mean an amazing doctor and a fast recovery. HUGS! catherine

Peter - Carepages - June 11th, 2007

WE ARE COMING HOME!! YEAH!! Sorry this is late, but what a day it has been. Cardiology came by today and were happy with Peter's progress. Despite not having gained weight over 7 days, they saw a drop and then a slow progress up hill back to what he was 7 days ago. The cardiologist says Peter did what she expected because his caloric intake was only enough to maintain weight, not gain. He has today been increased to 60ml's of fortified breast milk. Assuming all goes well over the next couple of days we will be home by the weekend. John and I have to learn how to insert his feeding tube down his nose. Enough to push anyone over the edge! After several tries tonight I got my first successful insert of the tube, and a very tired and red faced baby not enjoying the ride. I made a deal with him - if he starts taking it all orally we don't have to mess with it! The orders are in for the his feeding machine, oxygen, etc. We will be going through training for a variety of things including CPR, machine feeding, oxygen transfers, etc. Ahhh! Crash course in a lot. We will need to have him seen when we get home to ensure the oxygen is calibrated to the Springs as Denver is at a lower altitude. Before they will release him they need to do some fine-tuning but are optimistic. Now the nerves kick in of knowing we need to do it all on our own. No more nurses, doctors, monitors and bells to tell us if something is not right. We need to integrate all these new challenges into our day to day live - knowing that each of our children has his/her own needs and those can't be neglected. It's figuring out Peter's feeding schedule and my pumping schedule so that I can get some sleep. It will take a bit, but John and I will be learning how to become a better team as we will be leaning a lot on each other. Fingers crossed the kids will still have food on the table and clean underwear as we figure it all out. As a result of this direction I will likely be going back to work in 2-3 weeks so that I can have time saved up for Peter's heart surgery. It will be hard, but fingers crossed things will be quiet so that it is an easy transition back into the working world. I've been quite spoiled getting to just sit, snuggle and be present for Peter over the last (almost) 5 weeks. Anyway, I'm tired and want to spend a few moments with John as today is our anniversary so we have much to celebrate. Also a special wish to my Aunt Lizzie who celebrates her birthday today, and remembering my grandmother who would have celebrated a birthday yesterday. Suffice to say this will continue to be a days we will celebrate for more reasons as the years pass. Prayerfully hopeful things will continue to progress well and soon I will be updating you all from the comfort of my own home! Love to all, John & Catherine

Peter - Carepages - June 9th, 2007

Peter is ONE month old today!! I have so many mixed emotions hitting this milestone...fortunately my friend Linda got me out of the hospital for a few minutes to get a celebratory Starbucks!! Peter gave me a scare this morning as he dropped his saturation rates into the 40's for about half hour. I had complete flashback to 10 days ago - I felt my body tense and the tears well up in my eyes. Since then he has been all over the board, but seems more stable. Thank God! I could not have handled another day like "smurf Thursday"!! Peter did a great job eating today - taking all but 20ml's orally for me over 4 feedings. Two feedings he actually drank more than he needed...yeah Peter! Cardiology came by today and they were happy with him again. I swear he loves the cardiologists - especially now that he has women. He can sense when they are within 100 feet of the ICC because he perks up and becomes the perfect patient. What a charmer! Still planning on having our meeting on Monday. He didn't gain weight yesterday - but he didn't loose either. I looked at his growth chart and it is pretty flat. Neonatology said he sounded good this morning - so fingers crossed no more scares this weekend and we can just enjoy even more snuggle time. He really is a cuddly little snuggle boy! I can also say he likes the color blue. He stares at my blue shirt, and any time someone wearing blue walks by, he tracks them until they are out of sight. Hoping to have Grandma and Grandpa visit tomorrow, and then Papa (John) on Monday. If you are in the 'hood, please stop by and say hi! Hope you all are having a wonderful, blessed, and relaxing weekend. HUGS! catherine