| Below are updates on Ryan since he was born. All pictures referenced can be found on on the pictures page. |
| December 28, 2008 Ryan passed away early Christmas morning at home in his sleep. On Monday, he developed what we thought was a cold. His doctor prescribed an antibiotic, but by Wednesday he hadn't improved. The nurse following Ryan came out and said she thought he was having heart failure, which was one of our concerns. His little heart had been beating rapidly since he was born due to him having to work harder to breathe. We are glad that we were able to spend over 4 months with Ryan at home versus in the hospital. His grandparents, uncles and aunts were able to spend quality time with him as well. We will miss him greatly and we know that he is healed and can breathe freely. Becky and I appreciate all of the prayers and support you have given us over the last 5 months. God Bless, Robert and Becky November 26, 2008 Ryan is still doing good and is still episode free since October 24th. He had speech and physical therapy today and both therapists were pleased with his progress. With tomorrow being Thanksgiving Day, we wanted to express our deepest THANKS for all that continue to support and pray for us during this time. We thank God everyday for you and ask that he bless and do good deeds for you. May you and your family have a safe and very Happy Thanksgiving Day! We have posted new pictures for November and I'll be posting some more in the next few days before the end of the month. God Bless, Robert, Becky and Ryan November 11, 2008 I know it has been a long time between updates again. I upgraded our version of windows and installed a new anti-virus the combination prevented my webpage program from running. It took me a while to get this fixed. Ryan is doing well and he continues to grow. He now weighs 11 pounds and 3 ½ ounces and he is 23 inches long. We believe he may have a tooth coming in, but nothing has broken through his gums yet. During October he had three episodes where he had a crying spell and got in trouble with his breathing. The last one was October 24th. He still has his crying spells, but after a while we are able to calm him before he gets into trouble. November 12th will make three months that Ryan has been home and he will be four months old on November 17th. We like reaching these milestones. Becky and I reached another milestone in our lives together; November 5th was our 14th Wedding Anniversary. Our friends Kim and Donna, whom are NICU Nurses, came over and baby sat Ryan as we went out for dinner. This is the first time we have been out together since Ryan came home. Kim took care of Kenneth at Kosair and Ryan when we were at Suburban. So we knew Ryan was in good hands. We have posted new pictures for October and I will be posting some from this month, hopefully this coming weekend. Thanks again for everyone’s continued support and prayers for Ryan’s health and our strength to get us through each day. God Bless. Robert, Becky and Ryan September 28, 2008 We know it has been a long time since the last update, we will try to do better. It has just been busy and hard to sit down and update the website. Holding and playing with Ryan is much more relaxing. We have redone the picture links, making the pictures bigger and to group them by month. All of the pictures on the two links for September are new. Take a look. Ryan continues to do well. We haven't had any more episodes, which is great. A lot of things have occurred since our last update. September 12th made one month Ryan has been home from the hospital. September 17th was Ryan's two month birthday. On, Sunday, September 21st Ryan was baptized. He is smiling more and cooing at his mobile, seeing him thrive is wonderful. He now weighs 10 pounds 3 ounces and he is 22 inches long. Thanks again for everyone's support and prayers. Don't hesitate to bug us if it has been a while since our last update. God Bless. Robert, Becky and Ryan September 1, 2008 Ryan is doing well. He did give us a scare Wednesday night, he started crying for no reason that we know of and nothing would console him and he started having trouble breathing. With his small chest he doesn't have much reserve, when he cries he uses what reserves he does have quickly. He recovered, but wasn't himself until late afternoon on Thursday. We didn't get any sleep Wednesday night as we were watching him very closely through the night to make sure he was okay. He has had a good weekend and everything seems to be back to normal as normal can be for us. We have posted several new pictures, so don't forget to take a look. Thanks again for everyone's continued support and prayers for Ryan's health and our strength to get us through each day. God Bless. Robert, Becky and Ryan August 25, 2008 Sorry for the delay between updates, but things have been busy. Ryan is doing well. We are so excited that he is home and we are able to spend quality time with him. We are still settling in to our routine, but being home is so much better than going back and forth to the hospital. We think Ryan likes being home as well. We don't have a scale to weigh him on like in the hospital, but Robert held Ryan got on the bathroom scale then Robert weighed himself. Looks like Ryan weighs about 9 pounds now, we won't tell you how much Robert weighs. Ryan had lost about a pound right after he was born and had gained it and about 4 ounces back before he was discharged. Ryan is now 20 3/4 inches, so he is growing. He turned 1 month old on the 17th and come this Tuesday the 26th , he will have been home for 2 weeks. We have added a new picture link as the other one was getting full. See the new link above. Thanks for everyone's continued support and prayers. Robert, Becky and Ryan August 13, 2008 Ryan is finally home!!! Ryan was released from the hospital yesterday and he had a short 15 minute ride to the house. He has been home for a little over 24 hours now, so far no issues. It is so "GREAT" to have him under our roof. We are still trying to figure out our routine and it may take us several days to do so. This morning we took him to his pulmonary (lung) doctor and tomorrow we are taking him to his pediatrician. Both wanted to see him within a week of being out of the hospital, so since Robert is off this week we took the earliest appointments we could get. We weren't exactly thrilled about taking him out right after getting home, but they said they would get us in and out quick since he was on the air flow support. Hopefully after this we will be done for a while. The doctors told us not to have too many visitors after we get him home as a simple cold could put Ryan back in the hospital. So please understand as much as we would love to welcome visitors in to celebrate this occasion with us we can not. Thanks again for everyone's continued support and prayers as we travel down this new path in this journey. God Bless Robert, Becky and Ryan August 10, 2008 We are meeting with the doctors and home health services tomorrow to finalize the plans to get Ryan home. We are hoping to bring him home on Tuesday if everything is in order, we'll keep you posted. Home services brought in an oxygen concentrator Thursday that we will use at home to provide the air flow support Ryan needs. He has been using it ever since with no problems. We continue work with Ryan on the bottle for his feedings, but he goes to sleep by the time he finishes about a fourth of the bottle. We are using a special bottle that reduces the flow of milk, so he doesn't get too much and aspirates. With the reduced flow he gets tired because he has to work harder to get the milk out of the bottle. So after about 10-15 minutes he is asleep and we give him the rest of the bottle through the NG tube. Friday they put Ryan in his car seat for about an hour to make sure he was ready for the ride home. He passed as we only live about 10 minutes from the hospital. Four new pictures have been added to the bottom of the pictures page. Thanks for everyone's prayers and support. Robert, Becky and Ryan August 6, 2008 Ryan is still doing well. They are still giving him air flow support via CPAP (Continuous Positive Airway Pressure). CPAP is normally used in adults to treat sleep apnea, but in Ryan's case it is helping him to fully expand his lungs when he inhales. We are working to get him home using CPAP. While we are waiting for the CPAP equipment to be arranged they are getting him ready to be released from the hospital. They have given him a Hep B immunization and they have circumcised him (ouch). Tuesday for the first time he took some of his feeding from a bottle, he really enjoyed it see the pictures from the picture link on Ryan's Home Page. He still gets the majority of his feeding via his NG tube and he will be sent home with a NG tube. On Tuesday the NG tube he had developed a blockage and it had to be replaced. Becky did the honors and Robert is up for the next one, as we both will have to know how to replace them. Ryan's little hands are always around his face and he has pulled it out before, so we have to be prepared. If everything works out as planned we could bring him home early next week. Four (4) new pictures have been added to the bottom of the pictures page. Thanks for everyone's continued support and prayers. Robert, Becky and Ryan July 31, 2008 Sorry for the delay in the update. On Saturday evening Ryan was moved from NICU to a Critical Care Nursery, which was good. Sunday they decreased his feeding time to 1 hour and everything still looked good. However on Monday, he let everyone know that he had been pushed far enough on the feedings. He was very restless and had to be put back on oxygen support and was moved back to the NICU. Tuesday we met with the doctor and discussed a different approach. So far Ryan has done well with the new plan, but they have kept him on the oxygen support in order to give him the air flow from the support. They have discussed looking to reduce the flow tomorrow to wean him down again. The last couple of days he has done well. We have added three new pictures to the picture page (the last three). Thanks again for everyone's prayers and support. Robert, Becky and Ryan July 26, 2008 Ryan has made some great progress since the last update. They have been able to wean him off the oxygen support and he is breathing on his own. They have increased his feeding volume to where they want it to be over a 3 hour period, 70cc or 2.5 ounces. They started decreasing the time the feeding is delivered, Thursday he was at 2 1/2 hours, Friday they reduced the time to 2 hours, today they reduced the time to 1 1/2 hours. So far so good. If he continues to do well, Sunday they will decrease the time to 1 hour and Monday he will be down to 30 minutes, where they want him to be. If he does well at 30 minutes for several days, then we will start looking at our options on getting him home. Also, today he completed his photo-therapy for his jaundice. So all in all he is doing very well. Our next hurdle if we can get him home will be how long will it be until he grows out of his rib cage. This is unknown and we will have to take each day at a time until this day comes. Right now we are in a better position than we ever were with Kenneth, especially at 9 days old. We appreciate everyones thoughts and prayers, please continue to include us in them. Robert, Becky and Ryan July 23, 2008 Ryan Timothy Picklesimer Born: Thursday, July 17, 2008 Time: 2:08pm ET Weight: 7 pounds 12 ounces Length: 18.5 inches Ryan was born with Jeunes Syndrome like his big brother Kenneth, which is a narrowing of the rib cage reducing space for the lungs to expand properly. Ryan was on a ventilator right after he was born, but they were able to wean him off the ventilator by Saturday and he has only been on oxygen since. They have ran several tests on Ryan to check out other parts of his body, head, heart, liver, and kidneys, all of that is good. Only time and introducing normal newborn activity will tell how severe the Jeunes Syndrome is. They decreased his IV fluids and started feeding him on Sunday via a NG tube and they are gradually increasing his feeds to see how he tolerates it. The biggest concern right now is feeding, will the increased volume in his stomach reduced space for his lungs. He is jaundice right now, which is common in newborns, and they have him on photo-therapy. Becky has been released from the hospital and doing well physically. We both were hoping and praying that we would not be repeating this chapter in our life again. We appreciate everyones thoughts and prayers, please continue to include us in them as we work with the doctors to determine the best treatment for Ryan. We know you care and you want to show your support, but please do not visit us in the hospital. The NICU has limited access, only 2 people are allowed in at a time and we are wanting that to be time for us, the grand parents, Becky's brothers and my sister. Attached are a few pictures of Ryan. Robert, Becky and Ryan |