Thursday, September 13, 2007

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

Tuesday, September 4, 2007

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, 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