Monday, July 26, 2010
There will be a memorial service for Austin at Blessed Sacrament Catholic church in Morton Wednesday morning at 10:30 AM. Anyone that would like to join us for a meal afterwards, please come to the St. Johns United Church of Christ fellowship hall in Minier. The burial will be a private service for family only.
Sunday, July 25, 2010
I am writing this with the most heart broken heart in the world. We lost Austin this morning, he passed away around 8am. He developed NEC yesterday late afternoon. They did surgery last night, by this morning the bowel was completely dead. Please keep us in your thoughts and prayers!
Friday, July 23, 2010
Friday, July 23rd was an okay day for the boys. Austin, is still having issues with the feeding. He has atleast taken all his feedings today, but is still having major gas pain. He is very uncomfortable after he eats, not sure if it is the thicker formula or reflux or what it may be. They have started him on come gas drops to see if that will help. If need me may have to try different formula to see if that is the problem. We just want to him to feel better, and be comforable with his feedings by the time he comes home. If it means staying some extra days, that is fine. The doctor advised us today they would keep him over the weekend to observe the feedings and make sure he is gaining weight. He has been losing weight the last couple days, so was of some concern to them. I just have to give it up to Austin he will come home when he is ready. Like I told Greg we have been doing it for 90 days what is a few more. Calvin is doing well, he had I spent the whole evening together. He was such a good boy!
Thursday, July 22, 2010
Thursday, July 21st was another rollercoaster day for the boys. Austin, had another frustrating day! I got word this morning that he passed his hearing test and was good to go tomorrow. Greg got home this evening and we headed to the hospital. Austin did well for his 5:30pm feeding for me. Then the 8:30pm Greg fed him and it was a disaster. He wouldn't take any of the bottle, he screamed the first 15 mintues. So two different nurses tried their luck with him and he contiuned to do the same. I was about in tears. I just don't understand, I have felt the last day or two when he eats that he has a belly ache. I know they say it is reflux, I just wonder if it is more or what the deal is with his belly. Not sure if it is the thickened feeds that is doing it or what. I guess we will wait and see in the morning what that doctor suggests. I definitely don't want to get him home and have him not eating. I swear that kid is going to be a challenge. Like I have said all along, I won't believe he will be home until I am out the door with him in my arms. All along his journey in the NICU once I have felt like he is a step or two forward, he is then three steps back!!! Calvin is doing well.
Wednesday, July 21, 2010
Wednesday, July 21st was a good day for the boys. Austin passed his car bed test on the first try. YEAH! When I got to hospital this evening, doctor told me we should be out the door tomorrow. I was like WOW. Then I fed Austin at 8:30pm this evening and he had a brady on me afterwards. We will have to see if they still let us out in the next day or two since somtimes they make them go 24 hours without a brady before discharge. I advised them this evening when they told me that we were ready that Greg was out of town so maybe we would wait until Friday to get hime home! Since he won't be back till tomorrow evening. Regardless, sounds like we should have him home by the weekend. Calvin is doing great at home!
Tuesday, July 20, 2010
Tuesday, July 20th was good day for boys. Austin continues to do well with the feedings. He has to pass the car seat trial, but rumor has it he is on his way out the door once that is complete. Grammy and Papa and I ran to Peoria this morning with Calvin. I had to take his monitor to be down loaded. We also stopped by the hospital, Grammy and Papa took turns going into see Austin, while the other stayed in the car with Calvin. Nana came and spent the night with Calvin and I this evening, I went to the hospital and saw Austin for awhile. We are ready for Greg to get home!
Monday, July 19, 2010
Monday, July 19th was a good day for the boys. Austin is doing well on the nippling. I went to the hospital this evening he took his whole feedings for me at 5:30pm and 8:30pm. They took him off the high flow canula today. He is now just on home oxygen on 1/16 of a liter. Grammy and Papa McMahon came and stayed with Calvin this evening while I went to the hospital. Calvin continues to do well. I increased his feeds to 52 ml, and he still acts hungry. Aunt Judy came to visit this afternoon, she thought Calvin had grown so much! We are getting by without Greg, but sure missing him!
Sunday, July 18, 2010
Sunday, July 18th the boys had a good day. Austin, nippled both of his feedings at 2:30pm and 5:30pm. We hope he is headed out the door soon. He is tolerating the one liter on the canula as well. Calvin is doing well at home. Greg left for Indy today for work for 5 days. I was sad to see him leave, I am going to be busy! Thank goodness for family.
Saturday, July 17, 2010
Saturday, July 17th was a good day for the boys. Austin has been doing well on his breathing, they lowered him to 1 liter of flow on the canula. He is starting to make real improvements in his nippling. He has nippled just over 50% of his feedings in the last 24 hours which is a huge improvement. Hopefully it is a start in the right direction. The best news of the day with him was he got moved down to 1218 (the last room before you go home)!! YEAH! Calvin is doing well. We drove out in the country this evening to watch the Stanford fireworks. Of course he slept in his car bed the whole time!!
Friday, July 16, 2010
Friday, July 16th was an okay day for boys. Calvin had an appointment at Dr.cross's office, he said he looked great. He weighs 5 lbs 3 oz. We don't go back for 10 weeks. Not sure what this crazy mom will do not having him weighed all the time. Well another typical day today for Mr. Austin. For his 11:30am feeding and the 2:30pm feeding with the feeding therapist he acted as if he had never nippled before. I was so frustrated when I left this afternoon. I came home and after much persuasion from my mom and sister went to the Toby Keith concert with my parents and Brian, Melissa and Greg. While on the way to the concert we called to see how Austin did at the 5:30pm feeding. The nurse said he nippled the entire feeding. Of course that made me happy, but I was careful not to get too excited because it was just one feeding. Sure enough, when we called back on our way home from the concert he had gone back to his old tricks and took basically nothing at his 8:30 feeding. He only took 4 out of the 25ml's. I don't think that child will ever eat. One of the nurses asked him last night if she was going to have to go to prom with him to clean out his feeding tube for his dinner. (some days I wonder)!! I was glad to get out this evening, it was much needed. Shelly, one of my best friends, watched Calvin. She said he did great. I am so thankful to have such great help and support!
Thursday, July 15, 2010
Thursday, July 15th the boys had an okay day. Austin is still not nippling well. They have changed his fomula to a thicker formula in hopes that might help. On a good note he is doing better on his breathing. He is only in 22% on the canula. Nana and Aunt Judy came to hospital this evening for the CPR class. Calvin is doing well at home. We have increased his feeds again!!!
Wednesday, July 14, 2010
Wednesday, June 14th the boys had a good day. Austin had the upper GI test today. The radiologists said that everything looked compeletly normal. It wasn't even showing reflux. Now they just have to figure out what kind of formula will allow him to nipple. There will be a feeding therapist examing him tomorrow to hopefully advise on some technique and help. He is still looking good as far as the swelling goes. His lower extremeintes are still somewhat swollen but his face looks much better. Calvin is doing well at home. Nana and Papa Fonger came to vistit tonight. They had been on vacation for the last 10 days in Price Edward Island. They were glad to see Calvin. Grammy and her golfing buddy Vicki stopped to peek at Cavlin this morning as well, while on their way to golf. (yes they are nuts for golfing in the heat.)
Tuesday, July 13, 2010
Tuesday, July 13 the boys had a pretty day. Calvin is doing well. The home health nurse came today and said he looked great. She also weighed him and he weighs 5 lb 2oz. Yeah! Austin, is still doing okay with his thickened feeds. He did spit a little up this morning, so the doctor has decided they will go ahead with the upper GI study. They think it is just reflux but since he is still spitting up some they want to rule anything else out. I am glad they are going to do it, even though it makes me nervous wondering if everything is okay. He only had one brady today so that is a good thing. I added some pictures earlier today to yesterdays post!
Monday, July 12, 2010
Monday, July 12th the boys had a good day. Thanks to Grammy for watching Calvin all afternoon and evening. I was able to make my first trip to Walmart in 3 months this afternoon. Then Greg and I spent the evening together at the hospital and out to dinner. Calvin loved staying with Grammy and Papa. I think he is getting a little too spoiled. The best news of the day was Austin is doing much better with the feeding. The doctor decided today not to do the upper GI and just start treating him for reflux since clinically he was showing all of the symptoms. They changed his formula to a thicker formula by adding rice. He took his whole bottle at 2:30pm and has done well on the feedings this evening. He had no bradys with his feedings today like he had been having in the last few days. They are definitely correlating those bradys to reflux, and so they aren't that concerned that he had them, but we sure hope he is done having them. He is also looking much less puffy. The diarrel seems to really be working. We just hope and pray this is the turn for him and he will be heading home soon!
Sunday, July 11, 2010
Sunday, July 11th was an okay day for the boys. Austin is still having issues with the reflux so they are going to try and schedule an upper GI test. They need to see exactly if that is it and what the extent is in order to treat it. The diarel seems to be contiuing to work and he is beginning to look a little less swollen. We hope it continues and takes all the excess fluid off of him. Calvin is still doing well. He had his first big trip today to Grammy and Papa McMahon's. Miss Hannah was over and enjoyed seeing him. He is starting to get VERY spoiled. I told Austin tonight when I left he needed to hurry home. I told him his brother was getting all the attention. We will see if that works. I hope so!
Saturday, July 10, 2010
Saturday, July 10th was a good day for the boys. Austin is starting to get rid of some of the excess fluid, the diarel seems to be helping a little. He is still having trouble with the whole nippling issue. I was there for his 5:30pm tonight, he had a major brady on me. I was so frustrated. The nurse assured me he will get this it is just going to be on his own time. I just feel like the poor little thing has struggled so much. He has just never caught a break. I know it is hard when his brother just aced his way thru the NICU. I just need to realize that they are two different babies. Calvin is doing well. It is just bitter sweet at home without Austin. It is starting to get hard on Greg and I with one home and one still in the hospital. We went from spending 24-7 together to now about 20 minutes while one of us is coming and going. I know six months from now this will all be a memory. I am just taking it day by day. Hurry home Austin!!
Friday, July 9, 2010
Friday, July 9th the boys had a good day. Austin is starting to get some diarrhetics to try and help with his breathing. He has what the doctors call chronic lung disease, and one of the effects of this disease is the retention of fluid. Although the name sounds very serious, this is yet another one of the problems that seems to be quite normal for preemies, and one that he will grow out of. They have been watching his fluid retention for quite a while now, and after running many tests to find the cause and solution, have decided that this is the problem. They believe that the diarrhetics will not only help his breathing, but also help with his reflux problems. One of the nurses told Greg that many of the babies born at their gestation need this diarrhetic to help them through these issues. Calvin is doing well. The home health nurse came today and he weighs 4 lb 14oz!
Thursday, July 8, 2010
Thursday, July 8th was a pretty good day for the boys. Austin had his 34 week head sonogram done and it was clear. That was a big relief!! He is still having issues with the reflux, but they have gone back to hanging his feedings to feed him over the course of about twenty minutes, which has caused him to have several bradys. They are thinking they may have to go back to the continous feeds until his belly gets a little more mature. He still has the fluid build up on his lower extremieties so they have done some more urine cultures to see if there is any protein in the urine that could be the cause. They continue to tell us that these types of problems are pretty normal for preemies, but that doesn't make the frustration any less. We continue to hope that one of these days soon Austin will figure all of this stuff out and be on his way towards getting well enough to come home.
Wednesday, July 7, 2010
Wednesday, July 7th the boys had a pretty good day. Austin had the cookie swallow test done and they didn't really see anything abnormal other then just an immature swallow. Therefore, they started him back on nippling this evening he took about 10ml so we are hopeful he is headed in the right direction with his feedings. They still haven't really figured out what is causing him to have the fluid retention. They are doing another urine culture tonight to check the protein in his urine. They said they don't think it is his kidneys but they want to cover all the bases, since he shouldn't be retaining fluid. Both the boys had their eye's checked today and they still look good. Austin had his checked in the NICU. Grammy and I took Calvin to his appointment in Peoria. Calvin was a very good boy, he didn't even cry during the exam. Calvin contiues to do well at home!
Tuesday, July 6, 2010
Tuesday, July 6th was an okay day for the boys. Austin is still having the feeding issues. They were unable to do the cookie swallow test today. They have it planned to do tomorrow afternoon. They are hoping that will give them a better idea of what is going on with his feedings. He is still having the fluid retention. The dose of lasicks didn't help as well as they would have liked so they are giving him another dose tomorrow. Calvin is doing well. The home health nurse came to weigh him today and he is up to 4 lbs 8oz.
Monday, July 5, 2010
Monday, July 5th was an okay day for he boys. Austin, is still having issues with the reflux so they have ordered a test to look into it. They call it a cookie swallow test where they put dye down the intestinal tract and watch to see how it goes through. This will give them a better idea in what they are needing to do to correct the feeding issues. He is also still somewhat swollen and not getting rid of the excess fluid. They ran a blood test, and there is something that I can't recall the name of that is low. Starting tomorrow they are going to give him two IV's, one to release the fluids, and another to help him to pee so that he gets those fluids out of his body. We are hoping that these things work so that we can have him home soon. Calvin is still doing well at home!
Sunday, July 4, 2010
Sunday, July 4th was another roller coaster day. Austin is still having feeding issues. Now he is having what they think is reflux isssues, he is having brady's during his feedings as well as throwing up after his feeds. They have put in a tube that will take his food past the stomach into the intestines to see if that will correct the problem. If that doesn't work they will look into doing some further tests on the stomach. Calvin is doing so well at home. He has been so good for us. I am trying to enjoy him as much as I can even though I was at the hospital most of the day. Greg spent the evening over with Austin. I just hope and pray they can figure out the feeding issues and we can have him home soon!
Saturday, July 3, 2010
Saturday, July 2nd was a good day for the boys. Calvin is home and continues to do well. He is such a good baby. He has been so easy for us thus far. I think that he knows his brother is way more high maintenance!! It should be interesting once we get Austin home. Austin is still tolerating his feedings, they are back up to full feeds and he nippled two of his feedings today. He isn't quite taking half by nipple yet, so he has a ways to go. He has only had one brady today. So that is a good thing. Greg went to visit this afternoon, and I went this evening. We will both be so glad to have them both home!!!
Friday, July 2, 2010
Friday, July 2nd was a pretty good day for the boys. Calvin is home and doing well. He had his first pediatrician appointment today with Dr. Cross. He is up to 4 lb 5oz and had to get his immunization shots. They haven't seemed to bother him so far. Dr. Cross said he looked awesome, and he wouldn't see us for two months unless otherwise needed. They did restart Austin's feedings today and he is nippling once a day. He did take his nippling feeding today at 2:30pm so we will see how he does. We both took turns going to see him this evening. It is going to be hard having one home and one still in the NICU. Aunt Melissa and Hannah came to visit today, and help me out around the house. It was great!
Thursday, July 1, 2010
Thursday, July 1st was a bitter sweet day for the boys! Calvin is HOME!!! We brought Calvin home this evening and he is doing great. We had another rollercoaser day with Austin, they stopped his feedings. He had some brady's last night into this morning and then had a distended belly at noon. They did a work up on him and all his blood came back fine. He had a belly xray done at noon that didn't look the best so they did another at 5pm which just didn't look quite right. They had changed his formula to a 30 calorie formula a day or two ago, and those extra calories can make it harder on the stomach. They are going to do another xray at 6am and see how it looks. If it doesn't improve they are going to look into doing a GI workup to see what is going on with his belly. So of course, I am so happy to have Calvin home, but worried about Austin's belly issues!!!!