KIDNEY SURGERY...NOW RECOVERY

No this isn't the bed Elijah has at Children's Hospital! He is still recovering from his surgery to remove the blockage in his kidney. The surgery went well. It has been 2 full days in his recovery and everything is moving in the right direction.

We hope to have his breathing tube removed and then everything else will follow. Elijah is slowly getting he sedation medication reduced. The doctors tried taking it away today, but he was pretty restless and the number 1 priority is to keep him comfortable.

He is pooping & peeing freely so the plumbing is working. Just got to make sure he doesn't get fluid build up in his lungs as he breathes more on his own. Not sure on when he will get discharged, but as of now it looks like Monday.

We want to thank everyone again for your kindness, thoughts, prayers, and continued support. Take care, talk to you soon.

TRAVELING MAN

As of Monday Elijah is now 12 lbs. 6.5 oz. The doctor is happy with his weight gain, but we are increasing his feedings which should help put on the extra pounds as long as he can tolerate the extra at feeding time.

Tomorrow, Thursday Sept. 17th, we are headed to Children's Hospital. Elijah needs to have some x-rays done of his heart. The plan as of now is he will have surgery at the end of October to correct those holes in his heart. It sucks that he will need ANOTHER surgery, but hopefully after this we can get rid of the oxygen machine he is on and won't have the oxygen tubes taped to his face and in his nose or have to carry the portable oxygen tanks where ever we go!

Also, originally the doctors thought his kidneys were cystic, but after having a Renal Scan of his kidneys at our last visit to Children's Hosptial the doctor there confirmed he had some obstruction causing the back-up in his kidneys. Once we get the heart issue taken care of the focus will shift to getting his kidneys fixed up.

Even though he has gone through a lot, and will have a couple other things to take care of the next couple months, Elijah is doing great! He is sleeping at night from about 11-12 at night until 5-6 in the morning! During the day he is more awake and alert which makes for some great conversations! Although we haven't heard his first word...yet...Michelle is putting in overtime to make sure his first word is Mom or Mumma!

Back to Children's Hospital

Last week Elijah went through a series of tests and the results came back good! It was a long and draining day for all of us. We spent 8 hours at Children's Hospital with not a lot of down time as we got taken from appointment to appointment.

At first Elijah got a little excited which caused his heart rate to climb and he oxygen levels to dip. It was enough cause for concern for the nurse at our first appointment to contact a cardiologist specialist to make sure everything was OK. He had to get an X-ray taken of his chest/heart...which everything looked fine. They wanted to make sure it was fine before we went home not knowing if it was something worse.

His kidney exam came back more encouraging. The doctor thinks there is a blockage causing the back up of urine/waste and enlarging his left kidney. Originally the diagnosis was cystic. Tomorrow, Tuesday, August 25th, we are going back to Children's Hospital so the doctor can run a more extensive test on Elijah's kidney.

The hardest part of last week's trip was when Elijah had to get his chest X-ray. He had to be restrained with sandbags and masking tape so he doesn't squirm when they are taking the X-ray. This caused the boy to cry and scream hitting noise levels Michelle and I never heard. Michelle was about to break down and I almost started kicking the crap out of the entire nursing staff! It was tough to watch and listen too, and then we have a crying baby in a diaper and they are trying to get us to leave the X-ray room. So much for being tactful, we understand they have a schedule to keep, but come on!

We will find out more in October about his heart. We have some tests scheduled to tackle that issue next. Thanks again for everyone's support. Take care, we'll keep you posted.

Look how cute I am!!!

Yesterday Mommy was drying my hair after my bath......what fun!!!

Mommy changed out my nasal cannula(nose hose) the other day and took this picture of me. Since I am getting bigger and stronger I like putting my hands up to my face more and peel off the tape that holds the nasal cannula in place, so Mommy and Daddy are constantly changing it. Hehe!

S'up my peeps

The last couple of weeks we have visited Elijah's pediatrician and cardiologist. The visit with the pediatrician resulted in the doctor recommending Elijah not be placed in day care. He had some tests done while in the NICU that showed him having a weaker immune system than most.

The doctors main concern is if he were to catch the cold/flu from another child it could effect him even worse than most. We have to visit the immunology clinic down at Children's Hospital in Milwaukee and have him retested. We are hoping that since he has grown so has his immune system.

While we are at Children's Hospital we were to schedule a cardiac catheter procedure that they think would help figure out why he has high blood pressure in his heart. After numerous days of Steve playing phone tag with Children's Hospital, they finally got a hold of Steve to inform us that they have scheduled him for heart surgery. Elijah will still have some tests done locally to confirm that surgery is needed, but with scheduling so difficult we went ahead and got him schedule...we can, and hope, that appointment can always get canceled.

The plan is to have it scheduled when he is at least 6 months old which he will be in October. The plan is to go down there on a Thursday to get his labs done and then on Friday they would perform the surgery. The surgery caught us off guard, we know that it was a possibility but we weren't expecting him to have another surgery so soon. If this is going to correct the high blood pressure and allow us to get rid of the oxygen machine than that is what needs to be done.

His kidney's are doing good. The question is as he grows will his kidneys be able to process the increased amount of fluids as he gets bigger. This will be ongoing and something to monitor as he grows.

We also had to visit a Ear, Nose and Throat doctor to have Elijah's hearing retested. They tested him while he was in the hospital and he failed their test in his left ear. They think it may have had something to do with his narrow ear canals. He was retested and failed both. The doctor had suggested we wait and get him retested in 6-8 weeks or we can make the choice of having tubes placed in his ears. These tubes would help drain any fluid that may be in his ear. We are hoping his test was a false positive because he responds to our voices and noises around him... we will just have to wait and see.

MR. MOM

I am entering Week 2 as Mr. Mom! I have to admit I don't think stay at home moms are given enough credit for what they do. I only have one to look after and a couple days last week I found myself wondering where the day went. At this point, I couldn't imagine having another one, or two, (or more), babies/kids to look after! For those of you that do...God Bless ya!

Today Elijah had his doctor's appointment locally with his pediatrician and there isn't a lot of new stuff to report. The doctor is encouraged with the amount of weight he has put on since his last appointment. He now weighs in at 10 lbs. 4 oz. Looking on-line for some comparison I found 15 lbs to be around where a 3 month old should be. We still got some work to do but we'll get to where we need to be by "average" standards.

Our next goal is to get to Children's Hospital in Milwaukee so they will be able to tell us more about his heart. Locally the pediatric cardiologist cannot figure out what is causing the high blood pressure in and around his heart. That is a very busy place, The Children's Hospital, which is sad because that means a lot of sick kids but they are getting some of the best care available. Realistically we are looking at the end of September but a lot depends on the doctors schedule.

In talking with a few folks the long term plan for Children's Hospital is to have a facility in Green Bay! That is years down the road. If that was the case now, it would make a lot of families lives easier getting the care they need closer to home. I know they have a facility in Appleton, but sounded like the same doctors split their time at both facilities, mostly in Milwaukee.

We will keep you updated the best we can. We thank you again for your thoughts, prayers, and continued support. Take care, see you soon.

Challenging times

Elijah has been home for two weeks already!! For some reason it seems longer than that. Things have been going okay for the most part. It seems like we have spent most of our time feeding him and juggling multiple appointments. We are definately learning a lot about our little man, especially how he likes to get up at 3am. He has been really fussy lately due to being constipated. They think that maybe his iron supplements may be contributing factor, also that children with chromosome disorders are at a higher risk of having constipation. We have been giving him suppositories to help ease some of the straining that he has been doing. When he strains himself he pushes out his stomach and it winds up irritating the area around his MIC-key button and that makes him really uncomfortable. His feedings are still taking us about an hour or more. They keep increasing his intake amount and we have to watch out how fast we give it to him otherwise he will spit up. Right now I think we are most frusturated with having to carefully move around his oxygen hose and his apnea monitor cord. We cannot wait until we do not have to have those anymore.

We had a follow up appointment with Elijah's cardiologist today. He is going to have to stay on the oxygen and the apnea monitor for a while. He still has high pulmonary hypertension (high blood pressure) in his heart and they cannot figure out why and need more sophisticated equipment. We are going to have to take a trip to Children's Hospital in Milwaukee and have a heart catheter done and depending on the results he may get treated for it right away.


We are trying to get into a routine as quick as possible since my maternity leave ends and I have to go back to work on the 20th, which makes me so sad :( But, Steve is going to play Mr. Mom for a while until he finds employment. When that happens we are thinking of putting him in daycare, but need to find one that handles children with special needs. We will keep up all updated as things move along with Elijah.



Thanks again for all of your support and kind words!!! Oh....if you want to stop by and see Elijah, don't hesitate to give us a call.