hospital musings from a tired mom

So, what started as a routine sleep study and doctor appointments for my two babies at the childrens hospital four hours from home, I am now spending my 3rd night on a stiff cot so I can be close to Isaiah while he recovers. Many of you know that we have found other medical issues going on with the baby since he's been in America, but this one kind of caught us off guard. We were headed down to the clinic and appointments on Wednesday, with my mom and Nelly in the car and the two boys, when Isaiah projectile vomitted his entire feed and doused Nelly with the formula that came back up. We had been having a few episodes of this happening, and we kept trying to determine if it was related to how fast we fed him, or the type of formula, or the movements he made between feedings, or his position...basically, looking for a pattern that we could tell the doctor about, or even self- diagnose and correct. Unfortunately, this time was his 5th straight day of urping at least one complete feed every 24 hours. Getting just 30 ounces of feed a day is what is suppose to be beefing him up, so losing 6 or more ounces in that time frame was dangerous. I called the kind nurse at the clinic, and she immediately sent us to the emergency room. We were able to get Gb into his urology appointment to set up the date for his hypospadious repair, and were in the ER before an hour was up. He had been struggling to breathe and had been very loud with every breath, sounding more pinched and constricted each day. We made it to the entrance to the ER, they rushed us back and had an IV inserted before I had time to let mom and Nelly know what was happening. I figured it was serious when 7 professionals came quickly into the room with an "all hands on deck!" approach to our situation. He was going to be admitted, we found out within a half and hour of our arrival, and the plans began to form. To make a long story short, instead of having a night at the hotel with the babies, Mom and Nelly would be making their way back home just a few hours after we had reached town. And the night and following day, Isaiah was NPO (and starving!) while the tests came in. He went through a surgery last night to remove floppy tissue around his voice box, where they also noticed some narrowing of the passage, when I got a call from the doc in the OR. He was doing well, but his adenoids were soooo enlarged there was NO air getting through - the question: could I consent to tonsils and adenoids being removed too. SURE!! Out came a tiny boy, who must have felt like a MAC truck had climbed into his nostrils, looking every bit as pitiful as I have ever seen a baby before. He was on oxygen, pain meds and had a plastic "trumpet" coming out of his nose. (By the way, when the doctor removed it today, it looked to be at least 6 inches long, although he gagged as if it were 6 feet coming out!) He was declared to be on the mend, and the night of coughing and gagging and suctioning was completely normal for what he had gone through that evening. His blood pressure fluctuated on the high side, while his oxygen dropped scarey numbers that set off alarms all night long, which is not, by the way, conducive to my sleep either. Then today, by noon we were off to the "regular" floor, out of the PICU and improving by leaps and bounds. Isaiah would disagree. Each cough is painful to watch, and our big fear was how well he would tolerate feeding again. And why was that an issue to begin with last weekend? Or, too, how would we keep him from pneumonia? The first 3 oz. went down ok, although he arched in pain and coughed more. Three hours later, still getting all his regular meds and now 2 types of pain meds, another 3 oz were introduced when, as if on command, he lost it. They had so hoped to get 6 oz. feeds going again and be thinking of sending us home this weekend! NOT. I must say, the nurses and doctors here are fabulous, and I was introduced to the Ronald McDonald house where they fed me two meal today, and I have also been blessed with friends who have faithfully prayed a calmness into my last few days too, so I am doing well. Tired, and living on caffeine and God's goodness! Tonight they put Isaiah on the feeding pump which pumped his last 3 oz feed over an hour. So far, he is peaceful and tolerating it. That schedule will continue through the night,and perhaps by morning it can be increased. I met a sweet lady who has been here at this hospital for 3 months since her 6 year old son was injured in a bad car wreck. She seemed calm. I asked how in the world she did it this long. Her answer? Sometimes you just have to do what you have to do. This weekend I wanted to go camping. I had plans to take the kids to the children's museum near our town, and I had an idea of what my following week would look like. That is all out the window now. The main focus is getting my baby well so we can go home. Trying my best to not embarrass God the Father who had seen this week coming and preparing me to adapt to what ever happens.. I am learning to lean and learning to accept help. I also know that I am just doing what I have to do. Day by day. Minute by Minute. One step closer to getting this baby well. And let me tell you, I really appreciate the village that is helping us. Nelly cried and was worried about me staying here alone, four hours from home. Sure., I miss the family, and I would rather not be alone, but this is not Africa this time, and I already found out that God is bigger than Africa. I think He's completely able to take care of me here, in this world, better than I know how to take care of things myself. SO, with a peaceful and resting baby boy, I am ready to hit the cot and see how things work out tomorrow..."for all things work together for good to those who love God." I love you, God. Thanks for the peace.

Three Months

I can hardly believe the boys have been home for three months already,but on the other hand, it seems like they have been around forever! Gborlee, our big little boy at 4 1/2 years old, is learning to venture out! Since getting his adorable glasses, he now can see his world and he loves it! He scoots on his bum and can practically "run"! It's funny how so many of his village behaviors have dissipated now, and how quickly he has embraced the American ways of life. He is a great eater, although he has only gained 3 pounds in the three months he has been home. But he also advanced from a total couch potato to a moving machine, so he is burning more calories every day than he can take in! So at the doctor this week, he was 26.2 pounds and given the direct permission to eat all the fattening things he can! Wow, I have wanted to do that my whole life! So, bring on the whole milk, the butter, the cheese and heavy cream! We plan to fatten this boy up! What a great boy he is - very tender and loving, learning more each day. He says "cooo" and uh-oh. He is beginning to mimic sounds,and he plays independantly now. Bella thinks we brought him home specifically for her, and although there is only 9 mo. Between them, he is her little baby and she takes this big sister roll seriously. He loves everyone, loves hugs and kisses, and is tolerating his big boy walker from the therapist. He clapped at every fire cracker that lit up the sky on the fourth, and he has even learned shopping in a cart isn't so bad after all! Isaiah celebrated his second birthday here, with a lovely impromptu party where many of our family and friends came for cake. He got so many nice gifts, but mostly, he was surrounded by love and happiness for the evening. In his short time here, he has been treated for a parasite, gotten rid of ringworm, given ringworm to numerous other family members, been given a pharmacy of needful medications to take on a daily basis, and been through blood work galore, EEG tests and an overnight video EEG. He has been diagnosed as cerebral palsy, microcephalic, epileptic and malnourished. He has had a g-peg surgically implanted for feeding 5 times a day, and had a circumcision at the same time. He has been put on meds to settle his stomach, and meds to calm his tense muscles. He has meds to decrease his many daily seizures, and we have been taught how to administer meds in case he should have a grand mal seizure. We have had many doctor visits in town, along with therapy from three different places, including the children's hospital four hours away from home. He takes meds to make him poop, and meds to stop his projectile vomiting. He will have a sleep study this Thursday, to see how much the breathing issues are affecting his quality of rest. He has had a positive tuberculosis test this week, and two clear x-rays of his chest. The future is unsure for Isaiah, except for this: he is ours forever, he is getting all the help he needs, and always will, and his smile each day is worth a million bucks! I am thankful he is not in a country that can not handle his very special needs, and that he continues to smile regardless of what goes on around him! I hate rude people who comment about the boys disabilities, but for the most part we have been encouraged by kind, wonderful people who are excited about this journey we are on. Having the boys baptized this past week was a highlight to our getting the boys home, and we are going to do our very best to raise them to know what miracles they are and help them grow in the knowledge of a savior who will be their constant friend. It's been a short three months, yet the journey of a lifetime. I am ever grateful that God has given us these beautiful lives and thankful for these boys who have already blessed us all!!!

1935 -2012. Resting peacefully

My dad died on fathers day, June 17. We gave him a celebration service on the 22nd, in the church where he grew up and was married, and where he made his peace with God in the final weeks before he died. We buried him in the local cemetery where he had purchased a lot. Now we figure out life without him. For months dad had talked of dying. With congestive heart failure, deteriorating kidneys, and diabetes he tried so hard to control, life had become too much of a struggle for him. He had a hard time breathing, and even walking was a chore. He had come to my house to celebrate my birthday on Tuesday, 5 days before he died. I just figured a doctor appointment would shape him up and we would continue loving time with him for a while longer. But then he was gone. I think my brothers and I will never forget his last day on earth. He had visitors the entire day, laughing, telling stories, receiving hugs and kisses. Even without the ability to breathe comfortably, he never complained. He was kimd to the nurses who cared for him, and he let us all know he was ready for eternity. He died with such grace and dignity. And then he was gone. When I Saw him right after he passed, my grief was intense. I just couldn't fathom he was really gone . The week of preparations for his funeral was pain filled and intense. Different brothers took their various rolls, taking turns protecting mom. We were able to express our tears at his passing and our love for each other. This would become our new norm. The last few weeks since dads death has been overwhelming. We have been going through dads office and sorting the unimportant vs. the important. My oldest brother has taken over organizing the bills and insurances, my second brother has agreed to work at selling their extra vehicles, and my little brother and I have been gathering items for a garage sale. Mom moved in with us, and this is life. I sat in dads favorite chair this weekend. It was the closest I will come on earth to getting one of his big hugs now. I want to bring the chair to my house, mostly because I can not imagine anyone who would buy it second hand getting any amount of satisfaction out of it more than I will by having it occupy a corner of my home. He is not there, but I could sense him so close when I sat in his chair. We all know that dad is at peace. He can breathe, run, laugh and love all of the family that reached glory before he did. Gramma and grampa and brothers all there, reunited in one heavenly hug that makes me long for the day when we all wil be together again. My brothers and I have talked, and we wouldn't wish him back here to the human life of bad health and suffering. Our only loss is on our side, not his. I miss my dad, and always will. I am so proud of the generous and beautiful life he lead, and thankful that of all he left us with, the most valuable was his love of stories and laughter, and smiles til the end. His nieces, nephews, cousins, aunts, uncles, sisters and inlaws all know him and remember him in their own ways. Mom, his wife of 56 years, remembers him her way. My brothers, each have their memories. Me? I have his smile in my minds eye, and all the wonderful ways he loved me to hold close to my heart.