Saturday, August 14, 2010
Abe's surgery went so well that he got to come home instead of being admitted. We stopped by NICU and medical unit to say hi to the staff we know. The NICU doctor that admitted him at Children's last year was so happy to see him doing so well. He is 20 lbs now and 79cm. I got tearful while talking to him because I remember having a difficult conversation last year if we should stop all care. I thought he was going to be unresponsive and unaware of his environment so I questioned his quality of life. It costs millions of dollars to keep him alive in NICU. He was very professional when we had these conversations last year and advised for us to keep going and see what happens. I am so thankful that we kept going. Abe is responsive to his enviroment and is finally rolling from his back to his belly. His trunk and head control has improved. Abe truely is a blessing. He does have some needs beyond other kids but was given to the right family. A father with job security in the Navy for health insurance, income, bulid him stuff, read to him, rough house play and naptime and a mother with nursing experience to advocate for him with all the medical/surgical interventions .Based on Glenn's emails he really misses his son and loves him. I included in his care package a picture Abe colored in his class (well mommy and the teacher helped). I did not explain what it was I just sent it. Glenn emailed me to ask if Abe colored it. Daddy got his first picture from Abe, how sweet. He will take his first airplane ride soon if he continues to do well and not have any post surgical complications.
Monday, August 2, 2010
Just 18 months ago my family faced life and death for our newborn baby, Abraham. It was awhile ago but sometimes it seems like just yesterday. I barely got to look at him from a distance, got to touch him for the first time over 12 hours later and hold him at hospital #3 two weeks after birth. I remember a Madigan doctor calling, stating while getting choked up with tears, “Do you want us to continue life saving techniques; he is fighting to not be with us any longer”. He required more than chest compressions and artificial breathing but also epinephrine a few times. What this means is that his body was oxygen deprived for so long despite artificial breathes and compressions that he needed a strong medication for his body to get the message to circulate blood. So in reality he probably did die during this time. God very well could have taken him to heaven that day. However God choose for him to live. He is stable now however his risk of infection is still very high due to low muscle tone of his core muscles and chronic lung disease or an older name for it BPD (bronchopulmonary dysplasia). Nature designed babies to be born at a certain gestational age for a reason: lungs, heart, brain and everything is fully developed and the human life is ready to handle being in the outside world. Abe’s lungs were not ready to deal with breathing which caused abnormal formation of lung tissue including inflammation and scar tissue. Some might say I am paranoid about him getting sick but it is not an abnormal fear in my book. He has been admitted to the hospital 6 times in a 16 month time frame. NICU for over 96 days, VP shunt surgery last August, H1N1 with pneumonia in November over Thanksgiving, other respiratory infections: February twice (10 days after Glenn left for training and 2 weeks after that discharge) and most recently June 2010. The CDC has some great information on guidelines for preventing the spread of infectious diseases such as the common cold and flu. A cold typically makes someone feel bad but majority are not admitted the hospital for it. Some might say, Oh she has it easy, only one kid and he does not get into things. Reality again he is developmentally delayed. Most 15 month old kids are walking, sitting up and sticking cereal in their mouths. When he is 13 years old and weighs 90 or more lbs he still might be sitting in a chair and his mom and dad will have to lift him out of his booster/car seat into his wheelchair. I did not choose to have a premature baby or one with chronic complex health needs but was rather chosen. Majority of people are not equip to care or advocate for a child like Abe. So I ask that I am not judged for protecting my child from infection, after all his surgery is scheduled in less than 2 weeks and was already rescheduled due to illness and admission. Please pray that he stays healthy enough for surgery and is able to visit Arizona. We already have a wedding reception and a birthday party to attend during our visit.