August 7, 2009 Homecoming

Hilton is finally home! We are so excited to have our little one with us. He is such a good baby and only cries when he is hungry. Thank you everyone for all of your prayers and continue to pray for Hilton as he still has reflux and high blood pressure issues. He is truly a blessing and we are so glad to have him here.

August 3, 2009

We have had a wonderful day today with Hilton. He is now on full bottle feeds and the tube has been removed from his nose. He is weighing in at 8lbs. 3 ounces. His diaper rash has improved significantly. He's doing so well. We just pray that he doesn't have anymore setbacks and he will be home soon!

July 26, 2009

Hilton has been doing well. He is now taking 4 bottles per day thickened with rice cereal. So far he has been tolerating them well. He does have a severe diaper rash that has been causing him some discomfort and he also has an anal fissure, which is causing him to have some blood in his bowel movements. He weighed 8 pounds tonight. We just hope he will be home soon.

July 21, 2009

Hilton had his swallow study done yesterday morning and he did pass the study. However, he still will require his feeds to be thickened. The doctors have decided to use rice cereal to thicken his feeds. He took his first bottle yesterday afternoon. He wasn't able to take it all, but they say it will be a slow path for him. He will just be getting one bottle per day at this time. We are hopeful that he will start taking a full bottle, but we know it will be a slow process.

July 18, 2009

It has been a long time since I have posted so I thought I would give an update. Hilton is doing well. He is on full feeds through his tube which is 60 mls every 3 hours. He has gotten the IV line out of his head and now weighs 7 lbs 13 ounces. He will have a swallow study done on Monday morning to determine if he can take regular milk by bottle or if he will need it to be thickened. We are so hoping his swallow has improved and he can take regular feeds. He looks wonderful and has been so happy lately.

July 8, 2009

Hilton has been given food again today. He is just getting a small amount every 4 hours. We just have to pray that he will be able to tolerate food this time. The doctors believe his stomach just needed more time to heal.

July 6, 2009

Hilton was given food on Saturday, but he did not tolerate it well. He got sick so they have stopped feeds for now. They think his stomach just wasn't ready yet. They will probably attempt to feed him again on Wednesday. He is in no pain anymore. He looks great and is just very hungry.

July 1, 2009

Hilton has had a trying day in regards to pain. He is being given morphine every four hours, but he just can't seem to rest. He is constantly squirming around. It is so hard to see him in pain, but we know it will be better in a couple of days. Otherwise, all is well with him. We just have to wait for him to heal.

June 30, 2009

Hilton has made it through his surgery successfully. He had a stricture that was about an inch long removed from his small intestine. He also had his hernia repaired. It will be several days before he can begin taking food again. His only difficulty since surgery has been pain control. He was given an epidural prior to surgery which should have lasted 16 to 18 hours. However, about an hour after he returned to the NICU he began experiencing pain. They are giving him morphine for the pain which by this evening it seems to finally be giving him some relief. It is so hard to see him in such pain. Please pray that his pain will be soothed and he will heal quickly.

June 29, 2009

Hilton will have his surgery tomorrow morning at 9:30. The procedure should take a couple of hours and they will repair his hernia at the same time they remove the stricture. They are giving him some blood tonight so that his hematocrit level will be high for the surgery tomorrow. Please pray for Hilton to have a swift recovery. I will post an update tomorrow after the surgery is complete.

June 22, 2009

Hilton had his upper GI done today and they found a stricture in his small intestine, which means he will need to have surgery to have it removed. The doctors will have to wait until next Tuesday to do the surgery because it has to be 30 days from the previous surgery because they will be using the same incision. He will also have a hernia repaired while they are removing the stricture. They believe this is why he has been having problems tolerating his food. We hope and pray that this will be removed and Hilton will get to come home this time for good, but it will be a little longer than we expected.

June 17, 2009

Hilton had his stricture study today and he did not have any strictures in his large intestines, which is good news. However, he will have to have another test done Friday (Upper GIs) to determine if he has any strictures in his small intestines. Please pray that Hilton's tests go well on Friday.

June 16, 2009

Hilton has had trouble taking his feeds today and is having a stricture study done tomorrow. He could have a stricture or narrowing of the bowel as a result of the infection he had. If they find a stricture it will have to be removed surgically. We hope that he will not have a stricture, but if he does we hope his surgery will go smoothly. Please pray for Hilton.

June 15, 2009

Hilton had a little trouble with his feed this morning and they have moved him into a bed with a slight elevation and are giving him his feeds on a pump at a slower pace. He seems to do be doing well with this so far. We are keeping our fingers crossed. Otherwise, he is doing great.

June 11, 2009

Hilton is now taking 10 mls of food every three hours and is tolerating it well. Everything appears to be normal at this point. His feeds will be increased everyday as long as he continues to tolerate it well. Please pray that we won't have anymore setbacks.

June 7, 2009

Hilton is doing well today, but very hungry. He has been fussy quite a bit today because he is starving and can't eat yet. We hope they will be able to start feeding him on Wednesday, if all continues to go well.

June 6, 2009

Hilton is doing great. He is off of the oxygen and has only 5 more days until feedings will be started back. He is very hungry though and fusses quite often. He has done better than we could have ever hoped for. We hope he will be home in a couple of weeks.

June 2,2009

Hilton has done well today. He was just moved back into the main unit of the NICU this afternoon,which means he has stabilized. His ventilator settings have been reduced and he is tolerating it well. They hope to wean him off of the ventilator sometime tomorrow. All of his vital signs and blood gasses have been good. He actually woke up today for about 45 minutes and moved his arms and legs around and just looked at me and listened to me talk to him. He looked so sweet. His incision looks good and he doesn't seem to be in any pain. We are so thankful for a good day and pray for an even better one tomorrow.

June 1,2009

For those of you who did not know, Hilton was readmitted to Children's Hospital on this past Friday. It appears that he had a sudden twist in his bowels which caused a bacterial infection to occur in his intestines. He had exploratory surgery of his bowel done on Friday. The surgeons left his bowel out to allow the swelling to subside in his abdomen. He had surgery this morning in the hopes of putting all of the bowel back in and also that parts of the bowel would not have to be removed due to death of the tissue due to the infection. Hilton came through the surgery very well. None of the bowel was dead and had to be removed and they were able to close his abdomen. He is back in the NICU and all of his initial lab tests and blood gasses look good. Please everyone pray for Hilton and our family. This has been a really rough road for us and we are all praying that Hilton will do well and we can return home as soon as possible. Hilton is such a strong little boy and we are so proud to call him our son.

May 27, 2009

We are going to the hospital at 5:00 this evening to begin our overnight stay with Hilton. He passed his car seat test last night so he is ready to go home! We should all be home together tomorrow night. We can't wait!