BACK HOME!

This afternoon Elijah was discharged from the NICU and is now home! Michelle and I couldn't be happier! The past few weeks have been a challenge to say the least.

Elijah did have to come home on oxygen...barely...along with his heart monitor. Doctor's orders are for him to be on an 1/8 of a liter of oxygen. We have a home unit and a portable unit. This came after a test that was done while at the NICU. For some reason he has high blood pressure around his heart and the doctors aren't sure why. There are been numerous X-rays and Ultrasounds of his heart and lungs, but at this point no clarity or reason why.

Without it, his oxygen dips when he eats or has an occasional fit. When he is laying in his bed and sleeping he is fine?! We have a follow up in 2 weeks and hopefully we can get rid of the oxygen at that point, and hopefully the heart monitor.

He has been putting on weight, up to 8 lbs. now (born 2 months ago 5 lbs. 15 oz. 17 1/2"), and is 21.5" long.

If you are in the neighborhood give us a call and head over. Michelle only has a few weeks left of her maternity leave, which was mostly spent going to the hospital. We do have some follow up doctor appointments in the weeks to come, but hopefully for now things can calm down for us.

We thank you all again for your continued support, gifts, thoughts and prayers. Its never easy going through phases of life like we recently experienced, but it is a lot more tolerable having people like you looking after us. Thanks again, see ya soon.

Elijah, Michelle & Steve

Almost there!

Most of you know that Elijah's surgery to correct pyloric stenosis was successful....so why is he still there??

He has been having difficulties with his oxygen intake levels and has been on and off of oxygen. With both surgeries Elijah had to be intubated(placing a tube down his throat to assist with his breathing) and because of that his lungs were not fully expanding. There was a part in his right lung that did not fully expand and it created a plug of mucus. The respitory therapist started working with him to see if they could loosen the plug up enough to get him to cough it out. The mucus then shifted to his left lung. Yesterday afternoon the neonatalogists decided to intubate him again and force extra air into his lungs to "pop" the mucus plug out of there. The x-rays this morning showed that it was successful. Also yesterday they gave him a blood transfusion. Red blood cells carry oxygen in them and an infants red bloods cells usually last 60 days and die off. Well, Elijah has not been strong enough to reproduce his red blood cells, so they gave him the transfusion. The blood cells from the transfusion should last 90-100 days, and the doctors are hoping that by then he will be strong enough to regenerate his own. They are running an oxygen test on him today and are hoping that the procedures done to him should be enough. If he is still having issues with his oxygen intake he may have to come home with an oxygen tank. We should know more tomorrow.

WHERE THE HELL ARE THE PICTURES?

Looking back at our blog, I realized we don't have any pictures posted. Here are a couple pictures of the boy in the hospital. Enjoy!

SURGERY - PART II

Over the weekend we were told that if Elijah's pylorus muscle narrowed anymore, the doctors felt the best option was surgery. He was given the whole week to allow the muscles to correct itself, which unfortunately didn't happen. He was only digesting half of his feedings which meant the other half would sit in his stomach.

Today, Monday (June 15th), the doctors took more X-rays and confirmed he would have to get surgery. The procedure was to go back in, cutting on the same incision as his G-tube surgery, and cut the muscle fibers around the pylorus to allow the food to pass more naturally and freely. We got a call early this morning that there was an opportunity to get him in this afternoon, so we went ahead and scheduled it. It took about 30-45 minutes for the procedure. The surgery went well, and the doctors said he did great during the whole thing.

As we have learned, Pyloric Stenosis is a common stomach obstruction in newborns that can be diagnosed anywhere from 3 weeks to 5 months. It occurs in 1 out of 300 babies.

So again, we are left praying and hoping to get Elijah home by the weekend, and that this will be his last surgery for a long time!! And by the way, he got circumcised last week too...so he had to deal with that on top of everything else! He is one tough littl' dude!

SPITTING MAD!

As Elijah was recovering last weekend from his G-tube surgery, his feedings continued to increase to get him back to the amount he was at before surgery. This was last Monday (June 8th), Michelle and I thought we would have him home mid-week...last week. Elijah had other plans. On Tuesday he was spitting up his feedings more often which lead the doctors to take X-rays of his stomach and found a stomach muscle that was growing faster and pinching the pylorus part of the stomach...this is called Pyloric Stenosis.

The pylorus is the narrowing of the stomach that leads to the small intestines. This area was narrowed more than normal because of the enlarged muscle around it. Elijah wasn't able to fully digest he feedings because of this narrowing so he was having feedings dumped on top of the previous feedings. This caused his stomach to fill up quickly and those feedings had to go somewhere, this was causing him to spit up more frequently.

The plan was to hold back on some feedings to allow the muscles in his stomach to relax from the G-tube surgery; the other option was another surgery which we wanted to avoid! Needless to say he spent some more time back in the NICU while we were left taking it one day at a time....to be continued....

SURGERY A SUCCESS!

Michelle and I just got home from the hospital today. The surgery went well! It took about an hour this afternoon but Elijah is at the St. Vincent NICU recovering for the next couple of days...but doing really good. He should be able to come home Sunday or Monday depending how everything goes.

We have heard various success stories about the babies feedings after the G-tube has been inserted. Some babies don't even have to use the G-tube while other may have it in for months, or even years. We are hoping Elijah takes the bottle so he can than graduate and go straight from the "tap"!

We'll keep you posted. Thanks again to all of those thinking of us!

BACK TO THE HOSPITAL

Tomorrow, Friday June 5th, Elijah is headed back to the hospital. He is scheduled to have surgery to place the G-Tube in his stomach. We hope that this will make it less irritating for him to eat. He won't have the other tube taped to his face, going in his nose, down his throat, and into his stomach...which Michelle and I think has something to do with him being fussy at times.

This will help when it comes to him eating. Elijah should be more comfortable when we work with him on his bottle feedings, but if he is sleeping we can just "flip open" the G-tube and dump his "meal" in there. He has been putting on weight, he is up to 6 lbs. 12 oz.

He will have to spend a day or two in the NICU for recovery after his surgery, but we hope to have him back home Sunday or Monday. We will let you know how he is doing. I know we have had a lot of people wanting to stop over and see him...it will happen soon!! Thanks again for all your kind thoughts and prayers. Take care.

G-Tube

It has been about a week since Elijah has been home. The bottle feedings haven't gone according to plan. Elijah gets fed 8 times a day...I know seems like a lot. Each feeding is 55 mL. When he was in the NICU at St. Vincent's he was taking full bottles or consistently in the 40's & 30's. Since we have gotten him home he is no where near that.

Some of it has to do with a change in the surroundings, but he has continued to stay in the 10's & 20's and gets fussy more quickly. We think it has to do with the feeding tube that is currently in his nose, runs down his throat, and into his stomach. The irritation of that tube moving around has to make it difficult to stay comfortable when he is eating and everything bumps into each other.

Whatever he doesn't bottle feed we put down the tube which can take up to 30-40 minutes on top of the 20-30 minutes we try bottle feeding...remember he eats 8 times a day!!

The Gastrostomy Tube, (G-Tube), is surgically placed in his stomach. So we can continue to work on his bottle feedings without the tube in his throat and we don't have to wake him from a deep sleep to feed him and then he is really cranky!

Our goal is to get this done ASAP. Elijah may have a couple more days/nights back in the hospital, but this procedure would help him be more comfortable, along with mom & dad! Once we know when the surgery will take place we will keep you posted. Take care and thank you to everyone for your thoughts, prayers and kind words!