Saturday, June 30, 2007

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

Tuesday, June 26, 2007

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

Monday, June 25, 2007

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

Wednesday, June 20, 2007

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

Thursday, June 14, 2007

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

Tuesday, June 12, 2007

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

Monday, June 11, 2007

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

Saturday, June 9, 2007

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

Friday, June 8, 2007

Peter - Carepages - June 8th, 2007

Not much to report today....other than how darn cute Peter is, but I'm sure you're getting tired of that! Peter continues to do well. They are holding off on lab work till Monday. So Monday really is the next big day - lab work, x-ray and hopefully a decision on what the next steps are for Peter. He gained a bit of weight yesterday, but is about an ounce less than his birth weight. His saturation rates continued to be on the higher side, so they've moved him over to a "blender". Not the type to make Frappucino's...but rather a method of blending oxygen and room air so as to be able to give less than 100% oxygen - no matter how slow the flow. The cardiologists came by today and were happy with Peter. His liver was positioned correctly which they took as a sign that the single dosage of diuretics a day is doing the trick. yeah! On a lighter note, the nurses and I have decided that Peter should have a blue mohawk for surgery. A little hair mousse and food coloring maybe. But, if anyone has some blue hair dye from Halloween or something - let us know. I'll probably chicken out with the "do"...but you never know! For all you American Idol fans out there - Peter plans on giving Sanjaya a run for his money!! Tonight is spa night in the ICC and I've been given a tip for creating a curly loop on the top of Peter's hopefully it will work and I can get some photos posted with it. Hope all is well with all of you. Thank you for tracking Peter's progress. I ask for increased prayers for the medical professionals caring for Peter - may they continue to be guided by wisdom and compassion. Hugs to all of you near and far - thank you for everything! catherine

Thursday, June 7, 2007

Peter - Carepages - June 7th, 2007

Hard to believe that on Saturday little Mr. Peter Bear will turn one month already! Feels like he's been with us for ever, but at the same time one month is such a mile stone!! He gets more cute by the day...look out world! He is becoming more and more popular with the nurses, and I often get stopped in the hall by nurses from the NICU wanting to know how Peter is doing. We are starting to get some more regulars which is nice for Peter and me. We are waiting for the official lab results, but preliminary results would indicate Peter stayed at all the same levels as on Tuesday. While we hope the creatinine drops further, he is still so much better than before and (knock on wood)nothing new seems to be emerging. He took a dip in his weight again last night - so it seems he continues to hover right around his birth weight. Late yesterday his fortification was increased in calories, so hope to see that kick in over the next day or so. One last change, as if I needed more! Every time I get a routine, things change. They want to let Peter graduate to a more self-regulated feeding schedule. Right now he's fed every three hours, and while he will probably stay close to that, they want to start responding to his initiative as opposed to waking to feed him. I am told it is important as part of his neurological development. I am mentally adjusting to this. All in a days work! Although it is a bit stressful making a change when you think things are working well, I realize this will get him closer to not needing a feeding tube. Rather than monitoring each ml feeding by feeding, they will look at his collective input over a 12 and 24 hour period. He tends to do better in the afternoon and then again around midnight, so if we let him do his own thing we may find that he can make up in one feeding what he left in the prior feeding, etc. Fingers crossed! Sorry no new pics right now. I will try to get some posted again later today or tomorrow. Peter has a mohawk again! The cardiologist was amused when she checked him out today. I did let her know that his hairstyle changes based on what is happening that day - and that for surgery he will be going in with a full attitude mohawk. Now I'm wondering if there is a way to color his little hair - maybe food coloring? I know you all think my Starbucks and sleep deprivation is catching up to me....but would the doctors not really take note of this little angel if he showed up for surgery with a blue mohawk??!! He has made such an impression with folks being the only blonde baby here that I'm thinking he can make a real statement with his "do"...everyone will know Peter soon! Anyway, going to run hang with my man before he realizes I snuck out for lunch. Last night he made me feel so guilty for leaving...even though it was 10:30pm. He followed me with his eyes and when I was out of sight he started crying. The nurse laughed to see how he has me tied around his little finger! Thank you for all your prayers!! Blessings, catherine

Wednesday, June 6, 2007

Peter - Carepages - June 6th, 2007

As I warned you all - no update yesterday. John and the kids got here mid morning and it was all go all day! It was so wonderful to see the kids again. Tommy seemed a little hesitant for about the first 30 seconds - as if saying "is that really you?". Then it was non-stop snuggle from there. He looks so big and has grown up so much in the past 3 weeks...his talking, taking charging, pushing around those in his way...hmmm...sounds familiar. Jack seems to have even more energy than ever - just bouncing off the walls with his endless zest for life. Michael looked so handsome with his 1st Communion haircut and was ready to be a big brother - taking turns holding and rocking Peter. Then Alexandra - can you really grow that fast? At 12.1/2 yrs she appears to be a smidge over 5'5"...almost looking me straight in the eye. She of course got some Peter time too! The nurses loaded Peter up in a stroller with oxygen in tow, and allowed us to go for a family walk around the hospital. Of course Peter pooped in his pants which made the trip a bit shorter than we had hoped. And, getting a family of seven, plus stroller, plus oxygen tank into an elevator was a challenge....had to wait for one empty enough we could all fit in it! All in all we had a great time. The hospital has a neat exhibit with balls on different tracks that loop around, bounce, knock and make bells ring, etc. No easy way to describe it but suffice to say the Mortimer engineering genes are running strong as all of them were entertained figuring it out for almost 2 hours! Peter saw less of me yesterday as the kids and I were out and about. It is as if he knew he was missing out on something because when he'd hear my voice he'd cry - as if saying "where have you been??!" After the family headed back down to the Springs I went back to snuggle little Peter. He rested his head on my chest, reached up his little arm and put it around my neck as if giving me a little hug. Talk about making your heart melt in 2 seconds flat! Peter continues to respond well to the oxygen. He is on so little he might as well be on room air, but that little wiff he's getting has kept his saturation rates higher and more stable. He got a reprieve from lab work today, so tomorrow we will know if his creatanine continued to drop. His weight isn't progressing quite as well, so today they are increasing the calories in the fortification of the breast milk. It is just such a relief to not have alarms going off every minute. To once again be able to just hold and hug my little man, and know that he is getting better. At this time can't predict what next week will bring, so more on that after the meeting on Monday. Next Wednesday I'm meeting with a group of folks to come up with a development plan for Peter from a therapy perspective so that we will have it to follow here and when we get home. It's all go! Must run get back to Peter! Thank you for all your great messages - keep them coming! They will be going down in history as I plan to include them all in Peter's baby book once I get home. :-) HUGS! catherine

Monday, June 4, 2007

Peter - Carepages - June 4th, 2007

Post #1: Peter and I are sooo excited - John and the kids are planning to visit tomorrow. I haven't seen the kids in three or more weeks so the anticipation has me giddy! The weekend was a rough weekend. As I mentioned we were moved to the ICC last week. Peter had a rough day on Thursday but seemed to be pulling through it on Friday and into Saturday. Yesterday was like taking steps back in time as he continued to be quite unstable with his oxygen saturation. The nurses we had felt very passionate about Peter's care which led to a bit of a confrontation with the cardiologists. As a parent my frustration peaked last night after the change in shift from one cardiologist to another when the treatment plan did a complete 180 and Peter was put on oxygen again. I think my frustration and request to talk to the doctors came through loud and clear - and appears to have been documented. When I arrived today Peter was back off oxygen. While he still takes plunges in his saturation rates, it isn't as often or as severe. To lighten the mood a bit he decided to squirt me while I changed his diaper....fortunately I was fast enough after the first signs to get the diaper on before the threatening rumbles developed into a storm of brown. And little man just had a little grin on his face the whole time! The new Neonatologist on call came by to talk to me today, as did the two nurse practioners in our unit. On a side note, I have to say I am realizing through this experience how important body language is in communication. Give me a doctor who will sit next to me and help me feel like my child is his only patient any day! We had a nice long chat about my concerns, my frustration and the lack of a "plan". (gasp...yes, I hear all my co-workers gasping in surprise that Catherine would want a plan!) I have requested a "care conference" in which we can sit with all the doctors involved in Peter's care. The doctor was very much in favor of coming up with a plan recognizing it may need to change/update, but something that puts everyone on the same page with care and treatment. It will probably be a couple of days to pull this all together, but it is such a relief knowing that we will have an opportunity to talk to the physicians at one time as opposed to going blue in the face telling Peter's story over and over and over again. I am also hoping we can get some continuity with the doctors and nurses as more times that not each day we have someone new who will acknowledge not knowing the whole case. Being with Peter every day, I feel empowered to be his best advocate as I can paint a full picture (from a parent's perspective) and hopefully be a part of his care plan. Anyway, thank you once again for your kind words of encouragement during the last several days - they were emotionally quite difficult. I hope to continue to have good news and updates each day as we get closer and closer to Peter coming home...when ever that may be. As usual I ask you to continue to pray for Peter and his recovery. I ask you also to please pray for my friend Terri who experienced a very difficult loss last week. Thank you!! Hugs & blessings! catherine

Post #2: ok....going for two in a day! John and the kids will be up tomorrow, so we may be having too much fun to get an update out. I apologize for the medical mumbo-jumbo....and even more so to those of you with medical backgrounds who probably cringe at my spelling and over simplification! I'm just a mom taking a crash course to keep up with Peter's needs!! So, I ended up having an impromptu meeting with all the doctors caring for Peter this week today. The cardiologist who will be handling Peter this week and next week came to see him today. She had met John when we first got here, but this was my first time meeting her and she was a no nonsense kind of person. I liked her. While she was here with her team, I requested the Neonatal team come down so that we were all hearing the same things at the same time. Crowded around Peter's bedside and had a good chat. Rather than bore you with all the details - in a nutshell we finally have a plan! The cardiologist today indicated that while Peter is not following the norms for babies with a VSD, he is actually following a norm for babies with a VSD and Downs. That his saturation issues are not related to his persistent pulmonary hypertension (PPHN) or because of VSD shunting (blood flow back and forth between the ventricles due to the hole in his heart). Rather, babies with Downs tend to have higher pulmonary pressures than other babies, and can display spontaneous contraction of the pulmonary vessels for no reason (ie. stimulus, feedings, sleeping, etc). It made a lot of sense when she explained it as his episodes followed no real pattern. At this time he has been put back on oxygen so as to keep him stable - less ups and downs due to his pulmonary pressures changing. The amount of oxygen is as low as you can go, but seems to be doing the trick. They are keeping his oxygen saturation levels higher than the last 10 days, but still not quite normal. Over the next week they will track the progress on his kidneys healing (he was at 1.1 today and we are trying to get to 0.7) and his ability to gain weight. Last night he was finally at his birth weight, but appears to have lost 3oz today which makes no sense. If by next Monday he is gaining weight and his kidneys are normal, we will work with the doctors to get him home for weeks or months depending on his continued progress. If by next Monday he isn't achieving these goals, then he will likely have his surgery to correct the VSD next week. The expectation is that correcting the VSD is the first step to his lungs following suit, but there is a remote possibility that he would continue to have elevated pulmonary pressures. They didn't want to cross that bridge unless we get there - so I can't tell you what that situation would dictate as next steps. The cardiologist said that was unusual, and I think she didn't want me worry about an unknown at this time. The Neonatologists were pleased with the plan, so we are all on the same page now. Thank you again for everything!! One way or another we are closer to being home. If I skip tomorrow, expect an update the following day. Thank you for taking the time to follow Peter's progress and for your words of encouragement is my lifeline to the outside world! Love & blessings, catherine

Saturday, June 2, 2007

Peter - Carepages - June 2nd, 2007

It's a beautiful day in Denver and Peter seems to be doing better. He has not had any major spells. When we got here this morning his saturation rates were dropping, but he was bringing them back up on his own. He did that on and off for a couple of hours, but has since been fine. If anything he is swinging the other way and breathing too fast again. My father always said life is like a pendulum....well, Peter is a living testament to that! The cardiologist just stopped by to see Peter. They took the canula off him as it no longer seems he needs that "wiff" of room air. They are also reviewing a single dosage of diuretics as the fast breathing would indicate possible pulmonary edema. Keeping us on our toes! We are hoping after talking to the cardiologist that we can (soon) get some idea of the plan for Peter - is there a point in time where the decision will be made to send him home vs. move forward with the surgery? We've been blessed that John's parents have been able to take care of Alexandra, Michael, Jack and Tommy for us - but we know too that they need to get home. I try to not make these too long for you all to read, but I did want to say a big huge thank you for all the wonderful notes y'all have posted on the message board. They've made me laugh, made me cry and everything in between. I wish I could answer each one of you to let you know how much your messages mean, so I'm sorry I haven't done that yet. Please know that your notes mean the world to John and I, and keep me connected to the world outside of the hospital. We hear God whispering in our ears through your words of encouragement and love. THANK YOU! Hugs! John & Catherine

Friday, June 1, 2007

Peter - Carepages - June 1st, 2007

Apologize for being so down yesterday, and wanted to make sure I got a new update out today. John got here around lunch time so I will take some photos and post them shortly too. Peter seems to be having a much better day today - thank you God! He is still struggling with his oxygen saturation rates, but no where close to yesterday. Yesterday he was constantly turning blue and really making everyone quite nervous. I got here around 9am today, and he has only had two "spells" so far. While it takes a bit to get him out of them, it is also not as long as 2 hours like his worse spell yesterday. He has also done pretty well with his feedings. While they have opted to not put Peter back on oxygen, he is back on a canula (nose tube) where they are blasting "wiffs" of room air to stimulate his breathing. At this time they feel his challenge is due to the fact that he is breathing too shallow. His chest x-ray shows not change in his lungs - therefore ruling out pulmonary edema. His echocardiogram shows no change in his heart condition. In addition to the wiffs of air they are putting him on caffeine to see if that keeps him stimulated while his body gets stronger and matures. Of course, I offered to just drink caffeinated Starbucks and pump it fresh for Peter, but they didn't take me up on the offer :-) At this time they are confident that this situation is temporary, as has been all the challenges Peter has had till now. If the caffeine doesn't work then we will need to re-evaluate. As alarming as this has been for me, all I need to do is look around at the other children here and realize how fortunate we are and how much we have to be thankful for each day. We continue to pray that Peter will get better and remember that this too shall pass and one day Peter will be home. Thank you for all your loving support! Big hugs! catherine & john