THE CHRISTMAS GIGGLE

Our first Christmas together wasn't what we had in mind, but the important thing was we were able to spend it together. At first we were worried about the weather and the affect it may have on our travels in making it to Milwaukee. However, Christmas day, was rainy and warm enough to make it down without any delays or issues.

Elijah is recovering nicely. The doctors are encouraged with where he is at so far. He is a week and a half from his surgery and he is ready to get out of his bed! In the picture above you can see a little of his scar on his chest from his surgery. He is chatting it up more and more and his overall alertness improves each day. We even heard a few giggles for the 1st time on Christmas day, that was an awesome present!

The plan moving forward is to continue weening him off the sedation medications, he does experience some withdrawal symptoms. Also, to get his feeds back to the volume he was at when he came to the hospital, or more, and continue to monitor his progress and make sure everything in and around his heart is doing what it is suppose to. The doctors think a realistic discharge will be sometime around the 1st of the year, which would be a great start to a New Year and great way to close the book on a forgettable 2009!

We hope everyone had a Merry Christmas and a wonderful Holiday season. Thank you so much again for everyone checking in us, your prayers, support, and constant encouragement! We'll keep you posted!

RECOVERING

Elijah is in Day 3 of his recovery and the doctors are pretty happy with where he is at. The challenge for them is to make sure he stays comfortable but ween him off the sedation medications so Elijah starts breathing more on his own instead of the machines he is on.

It was great to spend time with him before his surgery. We were able to hold him, chat it up with him, he would flail his arms, kick his legs, and have all kinds of baby chatter! Its frustrating now when we go into his room and see him just laying there and we can't hold him...but he has responded when he heard our voices, that was cool to see.

Either way Elijah will be at Children's Hosptial for a couple of weeks, but each day so far has been small steps in the right direction for his recovery. Michelle and I have been in Milwaukee all week, but Michelle has to go back to work next week so that will be tough on her. It's a short work week, so we will be back down to spend Christmas with him.

From our family to yours, have a wonderful Christmas and a happy New Year!

HEART SURGERY

Today Elijah had his heart surgery. This was the procedure to close the hole in his heart that causes his oxygen levels to dip and his lungs do not get oxygenated. He was suppose to have this done 2 months ago but he got sick with the H1N1. After talking to his doctor everything went according to plan. His recovery period all depends on how he responds to the surgery. We are expecting he will be at Children's Hospital another couple of weeks.

The next couple of days are critical to his recovery. The important piece of his recovery is for his pulmonary hypertension to regulate so his lungs stay oxygenated. Elijah has been at Children's Hospital long enough that the doctors are confident in how to manage his recovery because of the time they had to spend with him!

We keep hearing how Elijah is fast becoming a favorite among the nurses! Thank you again for your prayers, support and checking in on us. We'll keep you posted.

A very thankful Thanksgiving

This Thanksgiving Michelle and I have even more to be thankful for. Elijah had his breathing tube taken out of his nose and he is currently on a nose cannula for his oxygen, similar to what he had at home.

When we got down to Milwaukee this weekend to see Elijah, we finally got to see him awake! His eyes were open, his arms flailing, his legs kicking. It was awesome to see! For almost two months he had a breathing tube in to help him with his breathing, hooked up to all kinds of IVs, cords, wires and machines, which was pretty intimidating being in his room. Now he is slowly being taken off those same IVs and machines as he is getting back to functioning more and more on his own. It is so great to see him up and alert...for the record he is not a fan of Sponge Bob and was calmed by the football game that was on...football good, Sponge Bob, not so much...I know my son!

He has one last major hurdle left and that's his heart surgery. Assuming Elijah continues on the path he is on, that will take place in the next couple of weeks. We hope to have him home in time for our 1st Christmas together, but if we have to celebrate in Milwaukee then so be it, that's what we'll do.

Friends, family, co-workers, and even strangers always ask, or make the comment, "I wish there was something we could do"...there actually is. During the holiday season we deal with the "hustle" of many organizations looking to raise money for their cause. The next time you see a Children's Hospital collection area drop in a $1 or $.50, or whatever you can, this is an absolutely incredible facility with so many talented doctors and nurses. Without this facility who knows where we would be...and not just our family. Walking through the halls of the hospital there are so many kids of all ages and families that rely on this place to get their loved ones back to health so they can go home.

So, the next time you walk past a Children's Hospital donation area, drop in whatever you can because getting him the care and having this facility in Milwaukee is doing more than we can ever ask in helping us out.

You have no idea of how thankful we are for the progess Elijah has made and to have you in our lives. We truly appreciate the continued prayers and support. Have a wonderful Holiday season, we will keep you posted.

Elijah is doing great!

This was the best visit so far. Elijah's numbers are consistently strong. His oxygen levels are consistently high and he is coming off his sedation medication and is getting closer to the oxygen levels he was at while at home. He is up a more and more, he is kicking his legs and trying to move his arms, but the nurses have to keep his arms pinned to his bed sheet so he doesn't mess with his breathing tube and IV's!

The plan the next couple of weeks for Elijah is to continue to get healthier. He will have all of next week to continue on his progression. The following week sounded like he will have his cardiac cath so the doctors can get a good look at his heart and make sure they aren't missing anything in preparation for his heart surgery. Depending on how Elijah is doing, and scheduling, his heart surgery would follow.

Elijah won't be coming home before his heart surgery because we don't want to run the risk of him getting sick again before his surgery. Also, it becomes hard to get back into a schedule and then have to head back to the hospital. This way when he comes home he will be in the best possible condition he can be in....and we can't wait!! We hope that he is home before Christmas, but after going through all this we have learned to just deal with what's in front of us. If that means we spend Christmas at Children's Hospital than so be it, as long as we are all together we'll make the best of it!

We want to thank everyone again for your thoughts, prayers, and support. The phone calls, the e-mails, the cards, and a special thanks to those that have taken the time to make food for us...it is a great help and very much appreciated! Have a wonderful Thanksgiving weekend if we don't talk before. We will keep you posted, take care.

Elijah means the Lord is my God. In the Hebrew Bible, the Book of Kings describes many miracles performed for him and by him.

A day trip

Steve and I went to visit Elijah at Children's Hospital yesterday and were surprised to see him moving his arm and kicking his legs. As stated before they are slowly weening him off medication, one in particular was a paralytic. They did have to restrain his arms because they were worried that he would start pulling or yank out some of the tubes. It was only for a short period of time, but it was nice to have him hold onto our fingers and squeeze them. He had to be sedated again though because it became clear that he was having some pain. The nurse informed us that they did run his blood cultures and some swab twice and both came back negative for the H1N1 virus. Even though he is no longer infected with the virus he still has quiet a ways to go to fully recover and become "healthy" again.

We also spoke to the on call cardiologist to discuss his heard condition and his upcoming heart procedures. He is scheduled to have a heart catheter done on November 19th followed by surgery on the 23rd. As of this point the cardiologist feels that we can keep those dates as it would give Elijah almost two weeks to recover enough to safely perform the procedures.

It is very hard to walk into see him hooked up to so many machines, but we know it all will make him better. He is a miracle and a fighter!

Elijah doing good

It has been a week and a couple days since Elijah has been at Children's. Every time we talk with the nurse he is doing good. He numbers continue to improve, but they are trying to ween him off his sedation medication. The first step in his recovery is to clear his lungs of the "crap" that he currently has.

Mostly, the issues he has with the dips in his oxygen levels have to do with his heart. Once the issues with his heart are corrected than a lot of the things he is dealing with now go away...but, he has to be healthy before they can perform the procedure.

Its been tough to figure out how to spend our time. We both want to be with Elijah and miss him because he's not home. There isn't a lot we can do while we are at the hospital because he is sedated and if you have ever spent time at a hospital's ICU you can drive yourself nuts with everything going on. Michelle and I have spent our fair share of time with him at the hospital but the tough part is he is in Milwaukee and its 4 hours round trip. Plus as Michelle recovers from her back surgery, its not the most comfortable place to be, much less riding in a car.

We want to thank you again for your kindness, thoughts, prayers, and continued support. It really means a lot to us and helps us get through the rough spots. We will keep you posted! Take care.

A long road ahead

On Friday the 30th I received a phone from St. Vincents letting me know that Elijah was not doing so well. They had consulted with some doctors at Children's Hospital in Milwaukee and though that he could get better care down there. The hospital up here just did not have what Elijah needed to be treated. They said they were going to air lift him, but it was too foggy so they sent a transport unit up along with a team consisting of an ICU doctor, and ICU nurse and a respiratory therapist. At 3:20 pm I received a phone call from the ICU doctor from the Milwaukee transport unit and he informed me that they were having a hard time stabilizing Elijah for transport. His oxygen stats kept dropping into the 70's. He said he wanted to let me know the severity of his condition and if they needed to on they way down to Milwaukee, if he worsened they would perform CPR on him and even had to tell me that there may be a possibility that he may not make it. I did not hear from them for a while so I called Milwaukee at 6pm to see if they had made it down there and they had. I was told that they just arrived and were in the elevator on there way up to the ICU unit with a team standing by. They advised me to call back in an hour to give the staff a chance to do what they needed to do.

At 8 pm they said that they had to perform a surgery on Elijah to hook him up to a bypass machine for his heart and lungs called an ECMO machine. They said his ride down was very hard and he became critical with his oxygen stats dropping into the 50's and they also had to pump him full of blood pressure medication. They did get him stable and having been taking fabulous care of him.

As of 30 minutes ago, the update from Children's Hospital was that they slowly weaned Elijah off of the ECMO machine and he is holding his own. His heart rate is a little low, but they are going to watch that, his blood pressure is good as well as his oxygen stats. He is a tough little boy, but has a long road ahead of him.

Thank you to all for your continued support through this very difficult time. Steve and I are very, very lucky to have great friends and family!

The flu season begins.....

On Sunday October 18th Steve started to feel sick and that was when Elijah had developed a cough. Over the next few days the cough seem to have gotten worse. We started to take his temperature and the highest it had ever gotten was 100.6 but it had gone back down after we gave him some Tylenol and that continued through Wednesday. In the mean time we placed a few phone calls to his pediatrician letting them know about his cough and temperature and that he was becoming more irritable, we even told them that his breathing had labored at times. They had advised us not to come in because they were worried that if we brought him in we might infect others that may have been in their office so on Wednesday they just prescribed him some Tamiflu and told us to call if he got worse. On the morning of Thursday the 22nd his dressing around his mickey button had been changed and his temperature taken. His temp was 101, so we gave him dose of Tamiflu and some Tylenol to help his temperature. About two hours later we noticed that his mickey button site was bloody and had been slowly bleeding so the front of his outfit was full of blood. We called his pediatrician again and of course our doctor was out of the office so they said they would squeeze us in to see another physician. Since Steve was sick my dad and I took him. The doctor spend about a minute with him and advised us that she was going to call the emergency squad to transport him to the hospital because she could see that he was not doing well.

They strapped me to the gurney and I held on to Elijah while they took us into the ambulance. We had gotten two blocks away from the doctors office when they said they needed to get us to the hospital immediately because his stats were not looking good, so they flipped on the lights and siren. We arrived at the ER and there was a team of people waiting for us. They took Elijah and started to work on him right away. They wound up intubating him immediately to help get his heart rate and breathing under control and then they sedated him to keep him calm. He spend a little over an hour in the ER and then was transferred up the Pediatrics ICU unit. They worked on him up there for about an hour and he had become stable. They did some blood work and culture swabs on him and confirmed that he had Influenza A(H1N1).

Needless to say we are very upset with his pediatrician. I am sure the office advised a lot of other parents to keep their children home to reduce the risk of infecting others, but we believe that they overlooked that fact that Elijah is not a "normal" baby. He has a compromised immune system and a heart condition that puts him at a MUCH, MUCH higher risk than others. The staff at the hospital had told us that he was the most critical child in their unit.

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.

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!

HOME SWEET HOME!

Elijah is home!! We were finally able to bring our boy home. It is such a comforting feeling knowing he is down the hall in his room where he is suppose to be and not in the hospital anymore. The only downfall is there is no nurse call button!

The nurses at the St. Vincent hospital NICU were awesome. As difficult as it was to be there at times they made it as comfortable as possible. They were excited for us to have Elijah come home, but some were sad he was leaving...he became one of their favorites!

He is comfortable in his own room, in his own bed. He thought mom & dad did an awesome job decorating his room complete with a 6' tall Brett Favre phathead poster...not kidding! It will be an adjustment period for us, but a welcomed one! If you are in the neighborhood stop over and meet him...we just ask you call first!

Countdown is on...

Hard to believe but it has been a month since Elijah had been admitted to the NICU. Today we had some good conversations with our doctor in getting Michelle and I prepared in bringing Elijah home!! Because of everything going on with him there is a few more things for us to go over than checking his car seat! Plus with it being Memorial Day weekend a lot of people are out of town.

Needless to say, if everything continues like it has we are hoping to finally get Elijah home by Wednesday of this week, if not earlier! We will keep you posted.

State of Mom & Dad

The past few weeks Michelle and I haven't shared a lot of the information to anyone about what was going on with Elijah because each and every day there was a different diagnosis or theory.

As much as we wanted to let people know what was going on, we really didn't know what was going on! We don't want people to be sorry for not knowing or upset because we didn't share what was going on. We needed the time to process the information given to us, which has been a lot, and to get a handle on the situation before letting everyone know.

To truly get a better understanding of where we were compared to where we are now...is night and day! Originally we were led to believe our baby had a more devastating condition that had horribly high rates of fatality. So being in the position we are today is a hell of a lot better than where we were a few weeks back!

But not to worry, Michelle and I are not walking around doom & gloom, it is business as usual! As a family we are getting challenged early and we are going to come out of this stronger than ever! We can't wait to get Elijah home and introduce you to him. Take care, see you soon.

Finally figured it out.....

As most of you know, Elijah is still at the NICU (Neonatal Intensive Care Unit) at St. Vincent Hospital. He had to come earlier than expected due to a rapid heart rate, which the doctors believe was due to a combination of enlarged valves and a hole in the bottom of his heart. Since his birth, he has been given medication to help regulate his heartbeat. We do not know how long he will have to be on this medication. As for the valves, the pediatric cardiologist is not concerned that they are slightly larger and as for the hole in the heart he had said that it is pretty common. Elijah will have follow-up appointments with him to monitor his progress.



His kidneys have been looked at by specialists at Children's Hospital of Milwaukee and they will continue to monitor them by ultrasound, but so far things are good since his is peeing. Elijah also has a low platelet count, which means his blood will not clot as fast as if it were at a normal level. The Neonatalogist have added platelets to him hoping that they will eventually reach a point where it will plateau at a healthy level.



The doctors are happy with is progress and have classified him as "stable"...only one more thing before he can come home...eating. Elijah seems to have difficulty sucking on a bottle. Currently he will only take a 5ml of breast milk and the rest of it has to be tube fed to him. They are having a speech therapist work with him, since they work on muscles of the mouth. They are trying to get him where he needs to be in order to come home. If he does not improve within the next week or so they will surgically insert a tube into his stomach (called a GT tube). This way he can come home and Steve and I can still work on his bottle feedings. The tube is just to feed him in case he does not take all of his feeding by mouth. The GT tube is really easy to take out and is not painful.



The above symptoms and a few others have lead doctors to diagnose our Elijah with JACOBSEN SYNDROME. Basically, Elijah is missing a piece of his 11th chromosome. Steve and I were tested to see if it was genetic, but the Geneticist found out that it was not from either of us but that Elijah's chromosome somehow mutated. This syndrome is so rare, there are only 200 reported cases in the world. We do not know the severity of it and neither do our doctors. We are just taking it one day at a time.



The last couple of weeks have been a struggle, emotionally and physically for all of us. Thank you to all of our friends who have expressed their concern and offered a shoulder for us, it really means a lot. As we have said we do not know much about this syndrome, but we will do our best to keep you all informed!



To learn more about Jacobsen Syndrome go to:

http://www.healthline.com/galecontent/jacobsen-syndrome

Bundle of Joy

ELIJAH STEVEN ANDRASTEK

April 25, 2009

9:57 am

5lbs 15.4 oz

17 1/2 inches