Shabby Blogs

Friday, August 5, 2011

Finally sharing...

I finally felt comfortable enough with Jack's bottle feeding to let someone else feed him and who better than daddy! Trust me, it wasn't that I was just being a crazy mom. Jack was just awful at the bottle. Either he would suck so much so quickly that he would choke or he wouldn't suck hard enough to get anything out. The choking was terrifying. If he wasn't getting anything he would be worn out, we would have wasted time and I would have to tube him the full amount. It also takes FOREVER to feed him. A quick feed is 45 minutes. Most feeds last at least an hour- 30 minutes on the bottle, burping (which he never does), then tubing the remainder. Jackson has watched me feed him so many times and I finally felt comfortable that he wasn't going to choke, so I passed it on. The first time I watched, not too closely ;), but I thought it went great! What a relief and Jackson loved doing it too! It is such a huge help. Maybe now I can get to that laundry, or dusting, mopping... Yuck.

Also, some GREAT news! Dr. Bonnett called and the test results for Maple Syrup Urine Disease are negative!! Prayers answered! Now we can move on to enjoying Jack! Also, Dr. Bonnett said I didn't have to wake him up to eat anymore! Guess who slept all night...

This guy! (and me!)

Monday, August 1, 2011

Happy 2 Months Jack!

I cannot believe he is two months old! Honestly, it has been the LONGEST two months of my life. I feel like June 1st was so long ago. I remember each day since he was born so vividly. He is the sweetest baby. He has patience, which I know sounds crazy. When he needs something he lets us know with just a small cry and if we don't respond after a minute he will let another out, like when I am heating his bottle. He coos all the time and loves to talk to anyone who talks sweetly to him or coos back. He loves his baby gym and will play for 30 minutes to an hour on it! He is beginning to smile and I am still not quick enough to catch it with a camera. In all the chaos of the day I almost forgot to take his picture. So here is what I shot!

Here is what we have been up to! It has been a long time since i updated so I will be as brief as possible! We came home Friday, July 8th. Jack slept the whole day and night. When he finally woke he studied the house. It was like he knew he belonged here. We spent the whole weekend just holding and loving on him! No more needles, exams or thermometers. Monday we had our first pediatric and cardiology appointment. He passed both with flying colors! Tuesday he had a follow up hearing screen. He passed the newborn but they wanted to be sure he could hear because downs children are high risk for hearing problems. He failed. I seriously thought I was going to be sick. I just didn't want anything else stacked against Jack. They told us we would be referred to an ENT for further testing. Wednesday we went to a GI doctor Dr. Bonnett (our pediatrician) referred us to watch Jack from a nutritional standpoint. In the office Jack had a dirty diaper that had blood in it! I was happy it happened there and not at home. So I they send me with a sample over to the children's hospital at Richland for some labs. They called me later that day to tell me Jack had colitis from antibiotics they had given him before the G tube surgery. He had to have another antibiotic to treat it. Thursday Dr. Bonnett's nurse called me to tell me they wanted to see Jack on Monday. MUSC had tested his amino acids 3 separate times and they were all abnormal. Monday Dr. Bonnett sent off the test for his amino acids. I began researching amino acid disorders, which Jackson had told me not to, and was terrified. I decided just to try not to worry and wait for the results. That Thursday I noticed Jack had developed thrush so we headed back to the doctor's office. Monday we had another appointment with Dr. Bonnett. He upped his reflux meds because Jack has the worst reflux I have ever seen. He turns red, then purple, while gagging and then it shoots out of every hole in his little face. It is terrible. That evening my phone rang and it was Dr. Bonnett. He asked me to come to his office the next day. Jack's amino acids were still abnormal. Dr. Bonnett said he may have maple syrup urine disease. MSUD is a life threatening metabolic disorder. Jack would alway be on a special diet and when he became sick he would more than likely have to be hospitalized to have IV fluids. MSUD can cause swelling of the brain, coma and death. Tuesday, after battling a flat tire, I went in, and then down to the children's hospital again for the tests. We were told the tests would take 2 weeks. I can find so many beautiful things about all of Jacks other disorders, but not MSUD.
Today we went in for his two month check up. He is doing great and weighs 11 pounds, 1 ounce! We got back the results for the MSUD blood test and they were all normal! Praise the Lord! Now we are waiting on the urine results. We also went to see the ENT today and Jack can hear just fine! The doctor said he doesn't anticipate that Jack will have any hearing difficulty!
So that has been our lives in a nut shell. Other than all our scares he has gotten lots of love and play! He is such a joy and I can't wait to watch him grow! We are so fortunate to know many wonderful photographers! The have helped me lose the feeling that I missed out on so many good pictures since he was born!

Ashley Uhl Photography

Ashley Uhl Photography