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
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