Thursday, May 31, 2007

Peter - Carepages - May 31st, 2007

I don't know what to say....the last couple of days have been very emotional. Peter had a great weekend, but for the last couple of days seems to be on to his next challenge. His creatinine stayed at 1.4 today, and his sodium continues to improve. I think his kidneys are healing which is something huge to be thankful for! Now Peter seems to be struggling to keep his oxygen saturation levels, and we don't know why. We were moved from the NICU to the ICC yet again yesterday. I just cried when they told me. I expressed my concern with his sat levels until I was blue in the face. His chest x-ray showed no change and as of yet I'm waiting for a doctor to at least give me a theory on why this is happening. They don't want to put him back on oxygen so they keep lowering the threshold of acceptable saturation levels. He has been dropping low way too frequently and re-positioning him or stimulating him doesn't work as well as it did days earlier. I admit this latest challenge is really getting to me emotionally. I am praying - ok, begging - for further healing of my little man. Having him turn blue in my arms over and over and over again is extremely hard. Watching him turn dusky and then seeing his mouth and nose turn blue is trying. I feel guilty leaving him for a few minutes to go eat or get a drink - fearful of what happens when I am there, but more fearful of what happens when I am not there. Fearful to leave and come back to no Peter. Every time he gets blue I experience the fear I felt in the Springs all over again. The fear of loosing my little man. I have to hold on to the faith that all will be ok and one day he will come home a healthy little boy - but my faith in this is being tested lately. Please keep praying for Peter's healing and for a miracle! Anyway, sorry to be a downer today. Hope to have better news in my next update. Love to all! catherine

Wednesday, May 30, 2007

Peter - Carepages - May 30th, 2007

Peter is 3 weeks old today! When I left the house in labor, little did I know I would be away this long. It is getting hard being gone for so long - I so miss being at home with the family! Each day is a day closer to being home again, but it would be nice if we just knew when that would be. It's also hard knowing that we will need to be gone again during Peter's heart surgery (assuming we come home first). John has been busy at work in the house this week, and no doubt when I come home I will feel like I'm going home to a new house. Oh I look forward to it!! Peter seems to be remaining stable and on a good track. His creatinine (thanks Aunt Dodie for the spelling) was down to 1.4 today - so close to the 0.9 or less we are shooting for. They continue to up the amount of fluid intake, and he is having a bit of trouble keeping up with it. He is still doing a great job bottle feeding, but we are having to put some through the feeding tube. Overall he is eating well, and no doubt just a matter of time before his energy level catches up with his feeding requirements. Would help too if he napped! Yesterday he was up for 4 hours before finally giving in and allowing himself to rest. All this activity he doesn't want to miss out on....not to mention a little drama here and there. Sometimes you hear just a little too much in the old NICU - and sometimes not enough as you don't know if the drama is resolved or not, and it would not be right to go up and ask a stranger for a update ;-) Peter seems to be loosing his saturation rates a little more often lately, so I need to get the doctor's perspective on it. Usually some repositioning or stimulus takes care of the issue. It's scary because he appears to be resting so well and his coloring is deceptful. I expect we will get through this before we get home. I've become so used to alarms going off on computers to tell me if he is breathing too fast, too slow, not maintaining his oxygen, etc. I'm scared of what it will be like when we are home without all the machines. While it will be a relief to get rid of the alarms - which I hear in my sleep - but scared I am going to be watching his every breath 24/7 instead. Anyway. Library is closing early today and I wanted to make sure I got an update out. The nurse is holding Peter out for me to get up for his 3pm feeding. Must run snuggle little man!! I can't say this enough - thank you! Thank you for all your prayers and support. Please continue to keep little Peter in your prayers as we know that is healing him. My prayers are so full of thanksgiving, that I forget to ask for a miracle on Peter's heart. Please keep his heart and all his little organs in your prayers. Hugs and love! Catherine & John

Monday, May 28, 2007

Peter - Carepages - May 29th, 2007

Hope y'all had a wonderful Memorial Day weekend...Peter did! Prayers are being answered daily as Peter continues to take steps in the right direction. His kidneys are getting healthy, with his creatanin (sp?) level dropping to 1.7 today. We need to be under 0.9, but we are much closer than the 3.5 he was at a few days ago. His sodium is almost normal and his other levels all are on track. Peter's biggest win this weekend was bottle feeding! He went for 3 straight days of taking all his feedings from a bottle instead of a feeding tube. We are soooo proud of our little man as that is a huge step in the right direction. He pooped himself out last night and they unfortunately had to put the feeding tube back in. We are confident that this is just a bump in the road as he continues to be successful with the bottle. He has gone from 25ml of fortified breastmilk to 51 ml's in less than two days. I think he needs to get used to eating so much more. The plan from here forward is to continue to increase his feedings till he gets the calories he needs to be getting. They will continue to monitor his blood daily and adjust his sodium supplement as necessary. The key will be checking his lungs to determine when to start him back on diuretics. In essence finding that perfect balance with which he can stay healthy and gain weight before his heart surgery. At this time the surgery could be as little as 2-3 weeks away, or as long as 2-4 months away depending on how he thrives. Peter will continue to be in charge! And speaking of taking charge....Peter is taking charge of the NICU. Every day endearing himself to more and more of the nurses. In the evenings they can't wait till I'm gone so that they can take turns taking him for walks around the NICU, cuddling and just letting him be plain charming. I think it is his California beach boy good looks! The blonde hair, blue eyes and dreamy look have the nurses going wild!! Peter is so enjoying his role as top dog that he is keeping himself awake darn near the whole day....doesn't want to miss out on the NICU activity. I remind him that if he slept he would have more energy to eat - but I get a little grin, a 5 minute power nap and then he is ready to have more fun!! John is having a great time in the Springs with Alexandra, Michael, Jack and Tommy....and staying busy working on the house. They had a great time at the pool yesterday. I look forward to seeing the pictures! No camera up here until later this which time I promise to get more pictures out. Big hugs of thanksgiving for all your prayers and support - keep it coming as God is good and answering them daily. Each day we are a day closer to coming home! Love, John & Catherine

Friday, May 25, 2007

Peter - Carepages - May 25th, 2007

Sorry this is a day late! Can we say "Dancing with Peter"??!! Mr. Peter Bear is dancing the waltz to his own music....some steps forward, some steps back and some graceful steps to the side. The doctors are still trying to figure out what music he's dancing to so that they can make him better. As I mentioned the big wins so far are he seems to be past his pulmonary hypertension and is no longer on oxygen! yeah!! Yesterday we were moved back to the NICU because Peter is having a little kidney failure. His sodium levels are off, and he has a high level of creatanin (sp?). While he should be at 0.9 or less, he has been climbing since he got here and this morning was at 3.5. The doctors are optimistic at this time that the kidney damage is temporary and reversible. While his levels have been increasing since we got to Childrens - and it is believed to be because of the diuretic treatments - there is good signs to this being temporary. His kidneys showed no sign of damage when he was in the Springs and his level was 0.7 upon arrival on 5/16. An ultrasound was performed on Monday of this week and there were no indications of lesions or damaged we pray this is just a temporary situation with no long term effects on Peter. To treat the situation they are continuing to cut back on his fluids which as a parent is very scary to see your child eating less and less and continuing to loose weight. Despite loosing some of his baby fat in his face, and having skinny little chicken legs, I think Peter is noticing some of the cute young nurses around here. He is getting more charming and cute each day. Sorry no pictures to proove it - I sent the camera home with John so that he can capture memories of the kids first visit to the pool for this season. John is home again, and will be in the Springs till the latter part of next week. Besides caring for 4 VERY active kids - he is painting the basement (in case there are any volunteers to help him out), getting pieces and parts ordered and getting things in order over all. What a champ! I am so lucky to have John!! He is so capable and willing to doing everything that needs to be done so that I can spend my days cuddling little Peter. The library is closing early today and will be closed until Tuesday due to Memorial Day. We aren't sure yet when we will get our next update out. But please know that we continue to thank God every day for each and every one of you! Please continue to pray for Peter and for the doctors figuring out how to dance with our little man. Hope you all have a wonderful weekend. Lots of HUGS! God bless, Catherine & John

Wednesday, May 23, 2007

Peter - Carepages - May 23rd, 2007

Peter is 2 weeks today! It seems hard to believe - on one hand Peter is so new into our crazy world, but on the flip side we have gone through so much that it feels like a lifetime. We miss our kids terribly and John is torn about going home tomorrow for a week. He will have a great time taking the kids to the pool - and maybe trying to get the older kids over to see "Pirates of the Carribean". We are so greatful that John's parents and niece April have been able to watch the older 4 and keep them in their normal routines during this crazy time. Rollercoaster Peter is on a new adventure now! Today is his first day off of oxygen and he is maintaining his oxygen levels higher than they were wanting. He looks great and has been so much more active today - crying, playing, taking in the strange world around him. As I mentioned yesterday, we are starting to see the effects of his heart condition (VSD).....however, in true form - he is doing it all his own way. The lab results are showing abnormal product from his kidneys as well as some enzymes levels. He continues to loose weight due to the diuretics. The doctors are working closely together to figure out this little mystery named Peter. Because there are so many pieces factoring in to get him stable it feels like trying to fine tune a motor. They've decided to cut back on his fluid intake but adding formula to the breast milk to increase his caloric intake. We hope all these little adjustments will help us find the right approach to get Peter home. However, they will continue to monitor him to ensure we are headed in the right direction. As with any bodily function - at this time Peter should be able to recover from these set backs - but we need to ensure they are resolved so as to avoid long term effects to his brain, organs, etc. Please pray hard for this little man! If the doctors are unable to get the results they need, then there is a possibility of moving his heart surgery up so as to fix the root cause of all these problems. Holding our little boy in our arms, it seems hard to believe he is big enough to have his little heart fixed. But, on the other side, we so look forward to the day it is mended and we can put this time behind us. Thank you for all your prayers and support. Please spread the word that little Peter needs even more prayers for his healing, and wisdom for the medical professionals caring for him - we trust God is listening and answering our prayers in ways we may not understand and that one day this will be just a memory, a small part of our life journey. Love and blessings! John & Catherine


Tuesday, May 22, 2007

Peter - Carepages - May 22nd, 2007

Time for a daily update on Mr Peter...PAK-Man...Peter-Bear....Peter, Peter, pumpkin eater! All in all Peter had a good day. He continues to remain stable - meaning no surprises which is great! He is barely on any oxygen at all and they are trying to get him to none. He has been on and off oxygen through out the day, and the doctors are confident that he will come home without oxygen needs. Due to the VSD they actually want his oxygen saturation levels on the lower end to protect his lungs. We expect that he will develop a slightly blueish tone (does that make him Peter Smurf?! myself aren't I?). He continues to improve his respiratory rate although still on the higher side. We are thankful that we are headed in the right direction - thank you God for answered prayers! Peter and I had a lot of snuggle time today - time I will never again take for granted. Please continue to pray for little Peter's recovery, his heart and also his little ears. Peter failed his hearing test - but no one seems too concerned at this time. He responded to conversation level noise, but did not to levels just above whispers. He will need to be retested at a future date. John will be heading back to the Springs on Thursday as John's parents will be headed out for a week. We are so thankful that they have been available to care for Alexandra, Michael, Jack and Tom-Tom. Peter and I will miss having John here, but know that each day is a day closer to being back in the Springs as a family. We are so thankful for all the love, prayers and support!! We are so blessed!! Love, John & Catherine

Check out the mohawk!

This was a rare moment of Peter playing with the early weeks Peter conserved his energy by sleeping a lot.

Monday, May 21, 2007

Peter - Carepage - May 21st, 2007

Being with Peter is like being on a rollercoaster ride. I have strict instructions to keep my updates brief - but you all know how wordy I can get - but will give it a try! :-) Saturday Peter remained stable although we were concerned with his respiratory rate as it seems to be climbing. Despite our concerns, we were moved from the NICU to the ICC (Infant Care Center) due to some urgent needs with sicker babies (may God bless them and their families with healing!). Immediately after the move the new nurse was not happy with the respiratory rate either so finally a good look was given. He was placed on diuretics again with the hope of getting some fluid away from his lungs. The change was stressful for me - but we are over the anxiety of the change now. Sunday was a very relaxing day and Peter was very stable. Dr. Laura Brown came by several times and spent a long time letting me talk through what I felt was going on. I know she was very busy, but it was nice to feel like her only patient. All in all Peter looked well. His changes in oxygen and breathing patterns indicate he is getting over the pulmonary hypertension (PPHN)and as a result his heart condition (VSD) is kicking in. He has increased fluids to his lungs with the diuretics should help with. His enzyme tests came back abnormal on two indicators - so further review of his kidneys and liver were ordered. The ultrasound was done today and the results were good - so no need to worry there! Yeah!! Today Jacinto stopped by and that is always very comforting. He agreed that we are now trying to find the right balance between oxygen and diuretics to get Peter as healthy as possible. One step at a time! The encouraging news is that we may be able to take him home without oxygen. Yeah! The next step after getting the right balance for the VSD is to ensure he can eat and gain weight. John is the master of the bottle and Peter's biggest cheerleader in getting him to eat orally. I continue to pump like crazy - so it is a true team effort! The goal is to have Peter eating orally - but if that proves to take too long, they will evaluate sending him home with a feeding tube. We have no ETA for going home - but could be days to weeks....Mr. Peter will be dictating next steps and seems to be taking one challenge at a time. We are sooooo thankful for the healing God is bestowing on our little angel, and ask that you continue to pray for his healing. Although we are taking baby steps - each is a step closer to being home. We pray for his ongoing healing, and for a miracle to his little heart of gold. Thank you again for all your love, encouragement and support. We thank God daily for you all. Love, John & Catherine

Friday, May 18, 2007

Peter - Carepage - May 18th, 2007

Welcome to the adventures of Peter Alistair Krause! This is going to be a quick first update as the library closes soon and won't be open again till Monday. Peter rushed into the world 10 days early - arriving at 1:03pm (mountain)on Wednesday 5/9/07. As most of you know, Peter was determined to have Down Syndrome and a heart condition during the pregnancy. Originally diagnosed with Transpostion of the Great Arteries, we felt our prayers were answered when the diagnosis was reversed to be Pink Tetrology of Fillot (sp?). The prayers around the world were further answered when at birth the condition was reversed once again and replaced with Ventricular Septor Defect (VSD) - a much more common and easier to repair condition. We have been told that while the possibility is slight, there is the chance that it will heal itself. However, based on the size they believe it will require surgery between 3 to 6 months. Please pray for another miracle to Peter's little heart! At birth Peter showed trouble breathing and maintaining his oxygen saturation levels. He was placed under an oxygen hood for what was believed originally to be a short period of time. While heart breaking to not be able to hold our child, we were hopeful it was for just a short period of time. Minutes turned to hours, and hours to days. I (Catherine) stayed with him at Penrose hospital praying for a speedy recovery. I will always be thankful to the wonderful health care providers at Penrose that watched and cared for Peter day and night while in the NICU. Peter had ups and downs and appeared to be moving in the right direction. Tuesday 5/15/07 Peter gave us a scare as his saturation levels dropped into the 40%'s and he turned blue. The nurses and doctor got him stabilized but it was concerning to all. That night his oxygen requirements continued to increase getting us close to the point where treatment options at Penrose would be exhausted. At 6am on 5/16/07 I was told he needed to be immediately transported to Children's hospital in Denver before it was too late. There are no words to express the primal fear I felt at the thought of loosing my child - and harder yet that I might loose him without ever holding him in my arms, looking into his eyes and letting him know how loved he is by all. Thanks to John and some fast acting friends Father Steve made it to the hospital to baptize Peter before the transport began. Close to 9am the "Flight for Life" crew arrived and prepared Peter for land transport. The confidence with which the three ladies handled him gave John and I the reassurance we needed that we would make it to Denver. I rode in the ambulance while John followed shortly behind. We arrived to Denver around 11am where the crew was ready to run all the tests on him and get him stabilized. We are incredibly thankful that my parents were able to reach their friends Pam & Jacinto Hernandez. Pam is a nurse and Jacinto a top neonatologist - formerly running Children's newborn/NICU. The day was long and exhausting...and a roller coaster of emotions beyond what words can express. Before the day was over Peter was in our arms and we were finally able to hold him, kiss him, touch his beautiful soft blonde hair and see his beautiful face that had been masked by a steamed up hood for the first 7 days of life. Now that he was finally in our arms it was hard to let him go! Coming so close to a loss beyond words, we have been reminded how fragile human life is and how much time we loose getting caught up in stuff instead of focusing on what really matters. This pregnancy has been teaching us little by little, and Wednesday was a test. John and I both just wanted to hold our 5 beautiful children in our arms at one time letting them know how much we love them and letting God know how thankful we are for the blessings he has bestowed on us. The last couple of days Peter seems to be headed in the right direction. He continues to struggle with "persistent pulmonary hyper-tension". His oxygen requirements seem lower and he has been trying (unsuccessfully till now) to breastfeed. He has taken some breastmilk through the bottle as well as through a feeding tube. He seems much more content with some food and was able to come off the IV yesterday. Early this morning he gave the nurses a scare with another episode like the one he had in the Springs. We know at this time he will be in the hospital for another 5 days at least as they want him to go for that amount of time without an episode. Their preference is also that he accept his feedings orally, but will consider discharging him if he needs part of his nutrition via a tube. We will play that one by ear. He will definitely be on oxygen for the next several months - we assume until the surgery and possibly for a period of time after that. There is still so much up in the air, that there are many questions we just can't answer yet. I did want to take the time to say THANK YOU! All you - our friends, family, friends of friends and family of friends for your prayers and support. We know that our little Peter is a gift from God given to us to care for....and as our wise pediatrician Dr. McCaffery always says - he will teach us the virtues of patience and humility - and he is already! Coming so close to loosing our little gift, we know he is still in our lives due to all the prayers raising up to heaven. THANK YOU! All we ask is that you continue to pray for Peter to recover, a miracle for his heart and thanksgiving for all the wonderful caregivers we have taking care of him. We ask that you keep our other children in your prayers. And, selfishly, ask that you continue to pray for John and I to have the wisdom and serenity to be good parents through these difficult times and beyond! One day I know Peter will give me the firsts I dream of - first smile, first step, first "mama" and so much more. I dream of taking him to the beach and seeing the look on his face as he feels the sand between his toes for the first time. I dream of watching him play in the back yard with Jack and Tommy who of course will constantly be saying "come on Peter!" I know these first will come in time thanks to God who is answering all our prayers. God bless you all! We will update you further next week. Love, John & Catherine

Peter in the NICU at Penrose St. Francis - Colorado Springs