Keep on keeping on!

Eli is 9 months old this month. Can you believe?? We are so grateful for everyday with him. He is a little chunky monkey now, even though the doctors say he is a little low on the growth chart. They will keep an eye on his development to see if he needs an increase in steroids.

He is sitting up and drooling on everything- including his big sisters! He loves to dance to music, playing with his rings, eating squash and long walks on the beach..er oops wrong website. ha ha

This last visit to Endocrinology was a bit of a doozy for me. I had to learn to give an injection of steroids in case Eli were to be in an accident or break an arm or something like that. Let me say this slowly... I don't like needles. So I had to quickly calm myself so I didn't look the fool in front of the Dr. All the while she is injecting this sabre like needle over and over again into a prosthesis- I am gulping air and sweating in remarkable places! LOL

I think I finally got it down though my hand was a tad shaky. I feel for Eli if I ever have to give him a dose that way. He may come out looking like a little pin pricked doll!

I also learned that when he is aout a year old we will bring him to the hospital and they will hook him to an IV and wean him off the steroids to see if his glands have healed at all. For this we are asking for enormous amounts of prayer. We trust God for a healing but mostly we trust God. So pray that we will remain positive no matter the outcome. I will give you all more details as the time nears.

For now we are so happy to have the funny guy around and to watch him develop into a mischievious little Cook. :)

This video has a surprise ending! The funny thing is, we never knew this video existed until much later. Ava (our 3 year old) was videoing this without our knowledge!

Keeping in touch

Hey Everybody,

Thanks so much for keeping up with us and Eli's journey. His labs are tracking well and he is doing great. We still are in a "wait and see" mode regarding his adrenal glands. The Docs will test those babies out around his first birthday by reducing his steroids to see if his glands start up.

For now we still give him steroids 5 times a day but it seems to be working fine. On a side note, this boy has not missed a meal. He is a real chunk! At almost 15 lbs, Eli is rolling over, pulling his sisters hair, and laughing and screeching when we make faces at him. Ilde quickly caught this picture of him as he hates being on his stomach. You should have seen the resulting meltdown. Otherwise, he's a real sweetheart of a baby. Our next visit to Endochrinology is on Feb 10, Stay tuned...

Thanks for all the ongoing prayer and love.

Ultrasound

Eli had an abdominal ultrasound last week. He was so cute- his little body laying on this huge hospital bed. He didn't seem to mind having the goop put on him and the tech laughed out loud when she moved the scanner on his tummy and he smiled wide at her. Watch out ladies! LOL

We have half of the results back from the scan and they are so good! His clotting and hemorrhaging is resolved and his veins are patent (which means good flow). The Renal clinic was sad and happy to see us go. We no longer will be under their care, but we have made some special friends there for sure.

Next stop: Adrenal glands! We are praying for miraculous healing and we will meet soon with Endocrinology to go over the results. His labs this week were gorgeous and the most stable they have ever been.

Eli is chunking up, big time! His weight at 3 months is 13 pounds 7 ounces. Yikes! We think the steroids may be the major contributor, but he is half the weight of Ava our 3 year old. ha ha

We are all excited for Christmas!

Little lab baby

had to have 2 this week because our favorite phlebotomist was out of town and we had a new gal who thought I was crazy for telling her how to draw his blood. There is a specific way Eli's blood must be drawn or the sample will hemolize and the lab deems it unusable. I tried to be really sweet and not use that"I'm telling you how to do your job" tone of voice. LOL But she kinda' gave me a weird look and dismissed me as another kooky parent. (I am kooky but that is beside the point).

I went home and a few hours later got a phone call that the sample had hemolized! Ugh! So back again today for another blood draw. I think Eli is getting wise to all the visits, because he gets wide eyed in the waiting room. A nurse came up to him today and was sweet talking him- he gave her one big smile and then shoved out his lower lip and let out a wail!

Besides all the run around, his labs came back today and they are terrific! He had a cold this week so we have been giving him 3x his normal steroids- it's called stress dosing and he seems to be fine. I think we are more freaked out than anything. ;)

Walgreens contacted us this week and gave us a formal apology. It's a start. LOL

We didn't know what life today would be like when we first rushed Eli to Children's Hospital a little over 8 weeks ago. What we did know, at the time, scared and overwhelmed us and shook our core. But little by little Jim and I learned to let go of our fears and lean less on our own understanding and lean more on our faith in Christ.
Elijah means "whose God is Jehova". I didn't understand why he was meant to have that name until now and even still the message seems to be more poignant than ever. God is Lord- He is
Lord over the earth and the heavens and everything in it! Why should I fear? Even as a little child I have sang "Jesus loves me, when I am weak He is strong!"
I want to encourage you on this most thankful of days- no matter where you are or what you feel weak about right now, God's grace is sufficient for you!
2 Corinthians 12:9-10, ”but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong.”
We are thankful for you!
The Cooks

One more day...

with Eli home! It has been fun having him here and getting back to normal things like grocery shopping and soccer games. It is amazing the simple things you take for granted.

We have an appointment this week with endochrinology- so hopefully we will get some more answers, but I imagine the ultrasound will be the difinitive on his adrenals.

There was definitely more drama this week. (we just can't get away!) The refill for Eli's steroid was different than the original refill we ordered from Walgreens pharmacy. Children's pharmacy read us the original order and looks like Walgreens goofed up his prescription. What does this mean you ask? It means we have been overdosing our newborn son for almost 20 days! The Walgreens prescription had us giving Eli twice as much steroid than needed and we have no idea what this could be doing to his growth and development. Needless to say, we believe this is absolutely unacceptable and are taking this up with the chain's management. We are watching Eli closely as we drop his steroid use in half now. As if we don't have enough on our plate already, Geez!

On a lighter note, Jim is convinced he is starting to smile (I still think it's gas LOL) and he coos now and then when he is content. Torrey and Ava love to hold and rock him. Ava thinks her name is "Big sister" and tells everybody when they ask her name.

I am not the only one losing sleep around here:

Home Again- Home again!

Sorry for the long delay in updating! We have been home now with Eli for almost 12 days!! Woo hoo! And it has been so wonderful!

There still have been frequent visits to Children's hospital, (every 3 days-phew) but his labs are looking really good.

We had a tiny scare on Thursday- the thrombosis (clot) clinic advised us to come in because his tests were elevated and they were afraid he might throw a clot again. So we trudged back in and our little pin cushion braved the needle one more time.

To our relief the labs came back closer to normal! Yeah God! Now we go for labs weekly and soon he will undergo another abdominal ultrasound to check his adrenal glands and renal veins to see how they are functioning. We are praying for miraculous healing of both! :)

Torrey adores her little bro and asks all the time to hold him. She often gets a dreamy look on her face while staring at him- she definitely has the maternal instinct. Ava on the other hand, still sees him as a puppy and asks frequently if she can "pet" him. LOL She is fiercely protective and tells people to wash their hands and be quiet. ha ha

Well thanks again for all the care and food! We are tickled right now, but know there is still quite a journey ahead.

the cooks

Wed Update

Sorry for the lack of posting in the last 3 days. Super busy with work and 3 kids. The good news is we are home!!!!! Ilde had to take Eli down Tuesday to get some blood drawn to check his levels. They came back a tad high but within reason. Ilde went down Wed to meet with his Blood Dr's to get a game plan on the blood clotting situation. They are going to work up some labs in the next few weeks but are not as concerned as the Gland Dr's are. Pretty bad when you have teams of Dr's that are working on multiple things that are wrong with you. We will be going back on Friday to get another blood draw to see how things are cooking. Hopefully we get great results.
Thank you all for your continued prayer and support. Ilde definitely needs prayer and a extra boost of energy. She has been taking the blunt of the late nights since I am back at work. I smell a spa day coming on:)
Stay tuned

Hope to have more pics of Eli NOT from our iPhones in the hospital :)

Sunday Morning

So I had a eventful morning this morning. They NICU is very full and they ran out of sleep rooms so I had to crash in my clothes in a chair next to Eli last night. Not a easy environment with computers constantly beeping/alarms going off and my son crying because it is time to eat. I don't think I am going to swing to much of the sympathy vote from Eli so I won't. I awoke to 4 nurses and 1 Dr in the room around 6:20am trying to get another blood sample from Eli. They had a EKG machine in the room and everyone looked a tad concerned. Not a good thing to wake up to. So my questions started like they do everyday, What is going on? What is his potassium level/salt level? The Dr. let me know that his initial lab work done this morning came back pretty bad and they were concerned that his heart having a side effect. I became very alert by this time. They were re-drawing his blood to get a better sample to see if the results were off from the previous one. So that's where I am at now, blogging in the room next to Eli and waiting the result of his test.
Ilde and I hope and pray that his labs come back normal. Not too many more drugs they can give this little guy. I will let you all know the result as soon as I get it.

jim

Saturday Morning Update

Eli is doing well this morning and his lab work and blood levels are returning to normal. He is going to be on a couple more meds to keep him stable and may have to take these the rest of his life. Ilde and Jim are looking forward to taking him home but are glad the Dr's are wanting to watch him another night.I am blogging from my iPhone in the Vandy pharmacy waiting to get Eli's new mix of steroids. If Eli ever makes a professional sports team, he is so going to be busted for Steroid use. LOL.

Please Read New Post Below Pics!!!

Warning!!!! iPhone Pics not Nikon Pics:)

We are in the ICU again

You read that right. We had an eventful Thursday which has turned into another stay at Children's ICU. Thursday morning we had an appointment with the Gland Dr. regarding Eli and his next few months. The Dr. had some blood drawn and sent to the lab and we went home thinking everything is fine. We get a call around 4:00pm from the Dr's office for us to return to children's Hospital ER because his labs are off. Wait a minute this sounds just like Monday's post. We were a bit upset thinking if we keep having to go down to the ER just because somebody goofs up his lab report, we are going to be ticked. So we get the kids together for the grandparents to watch, and head on down. Same procedure occurs and Eli goes through some test that reveal his potassium levels are too high and his salt level is too low. NOT GOOD!! They Dr's want to re-test to be sure. When I say re-test that means the nurse has to try to find a vein on a 11day old infant that has been stuck over 30 times. Good luck finding a vein that has not been blown. Poor kid looks like a bruised pin cushion. So they find a place and start another IV in his leg. Meanwhile his body temp has dropped 2 degrees and so the Nurses decide to put a warmer on him. Your probably wondering where I am going with all of this. Hang on....here it comes. Sooooo Ilde heads to the house to get some extra cloths for the night and Jim is alone with Eli. This is where everything goes bad. Eli all of a sudden starts crying a lot so Jim starts to feed him and realizes he is very warm. The warmer is cooking him like a bake potato, the cencer wasn't picking up how hot he was getting. After insisting to the nurse that he is getting way to hot she turns it off. Eli continues to cry his really bad for like another 45 minutes and Jim is getting a bit panicked because lots of alarms are going off and He is having no success getting Eli to calm down. He decides to unwrap him and notices that his foot is purple and his leg is swollen up twice as big as the other one. Jim calls the nurse in and demands to see a Dr. What had happened was Eli's IV had blown the vein and was pumping a lot of fluid into his leg causing him a ton of pain. OUCH!! At this point I think Jim was ready to call it a night.
After this crazy event they decided to admit Eli to the ICU to get him stabilized and see why his labs keep getting out of whack. So that is where we are currently and are playing the waiting game. Eli is doing better, however it looks like he is going to need an additional steroid to fix this potassium and salt issue. The reason that the potassium level is so important is if it gets to high like his was it will potentially mess with your heart.
Please keep us in your prayers. This has been a tough go thinking we are safe and at home then finding out we are back where we started a week ago. Tough on the ol'e emotions. Ilde and I are doing better today but are a little skaken up.
We will let you know how tomorrow goes.

Blessings
Ilde and Jim

Monday Night

So we had a bit of a scare yesterday. We went to Dr. Edmonson's office and had to get some blood drawn on Eli to check his potassium levels. Poor little guy had to get stuck about 4 times to get a good sample. So 4:30 rolls around and the Dr. calls back and tells us we need to run down to the ER at Children's because his potassium level is pretty high. We go down there and get fast tracked in because he is only 8 days old. The nurse at Children's had to re-draw blood and put a IV in. Lots of crying on Eli's behalf, he has around 30 marks from having blood drawn over the last week. Turns out that the sample was off from the Dr's office and after hours at the ER were able to go home. Never would think a potassium level can be so important, turns out that if it is to high your heart can stop. So we are back home and doing good. We have another appointment on Thursday to meet with the Gland Dr's. We will let you know how that goes.

Thanks again

We made it home with Eli!! Yea!!! It is a day filled with mixed emotions. We are so happy to be home with our little one, however we are scared to death that if something goes wrong we are not going to catch it in time. We are just trusting in the Lord that he will just put a covering around little Eli.
Mom and Dad are trying to catch up on some sleep today and get ready for the craziness of this next week. The days will be filled with getting the girls ready for school and frequent visits to the Dr's this week. Jim is returning to work on Monday and feels torn to be in two places at one time.
We will continue to keep this blog updated with the adventures of Eli and the Krazy Kooks!!! We will try to have a video and some pics posted later this week.

Well.......We are still at Children's Hospital however it looks like the end of our stay is in sight. We had a discussion with our Dr. yesterday and he gave us all the pieces of the puzzle to why all this happened. Apparently Eli had a brush with death in the womb. His inferior vena cava, which is a huge vein that runs from your foot back up to your heart, got completely blocked up. What typically happens is that where the vein gets blocked, that area of the vein swells, then you potentially die of internal bleeding. Instead his vein re-routed the blood flow and made a bunch of small veins back up to the heart to keep the blood flowing. This whole event sort of explains why he looked like he had been though such trauma. The Dr's are still not sure if this is connected to his adrenal gland issues. So we are going to have to keep a very close eye on Eli for any symptoms that relate back to these events. Even as something small as a fever means we have to run up to the Emergency Room at Children's. So it looks like Ilde and I are going to become "Those Parents" who freak out when Eli sniffles or coughs. Argh:(
We will be keeping a close eye on Eli for the next year and will be a frequent visitor to Children's Hospital, looks like we have to meet with his Dr. around 3 times a week. WOW!!! Glad gas is cheap....oh wait it's almost 4 bucks a gallon. Oh well we are so very thankful our little boy is alive and doing well. Ilde is getting better and better each day. Jim has had no sleep for the last few days for the fact he is staying with Eli 24/7 Good bonding time for them both. I'm sure Ilde will get her fair share of sleepless nights coming up.
This whole event would have been just about impossible without the selfless help of our family and friends watching our kids, dog, cleaning our house, buying us numerous meals and loving on us. You all ROCK!! Amazing how light this burden was to carry when everyone lifted together. Starting to get sappy so I will sign off for now. We will keep this blog updated just so you can keep an eye on Eli with us.

Blessings
the cooks

Thursday Update

Hello Everyone,
We had a up and down day today. This morning early we were given the hope of being discharged, pending a good ultra sound scan, and a successful test of his adrino glands. Eli had a procedure early this morning that tricks his adrino glands into functioning. Your adrino glands work when your body goes into a stress scenario, example: Getting sick or injury ect. Your adrino glands release a steroid that bolsters your body against sickness and gives you extra strength to fight that sort of stuff off. Well to get to the point...His adrino glands are not turning on when the body ask's them. Sooooo they doc's are giving him a steroid to see if they can sort of jump start the system. That means we are gonna be here for a few more days at least.
In the morning we are meeting the Dr. to go over the results of his ultra-sound scan to see if his kidneys are getting better and to see if there is any more clots. Please pray for a clear scan!
The staff of Children's Hospital and their facility make this stressful time halfway enjoyable. Top notch facility's and great staff makes this place hard to complain about. Jim has been down there 24/7 since the start of this and feels a little guilty how nice he has it. We have loads of awesome family and friends that make this chapter in our life not a nightmare but a time where we saw how much you all mean to us. We love the email's and the posts.
I will try to give a update around noon tomorrow.

Stay Tuned
the cooks

Wed Evening Update

Hello everyone,
We had a pretty uneventful day and that is a good thing. Lots of coffee and hanging out at the Hospital. Ilde brought our girls down this morning. Torrey was able to go in for a limited time to see her baby brother however Ava is too young.
Spoke with a few specialist today about his glands and their ability to function properly. They are going to do a test in the morning to determine if he can combat colds and fevers ect. Still has some blood in his urine, but is eating well. Tomorrow should shed a bit more light into what the next steps are. We hope and pray that he stays the course. Look around noon for a update.

Wednesday Morining Update

Hey Everyone,
The news about Eli is improving and improving!!! He does not have any tumors on his kidneys, Praise the Lord!!!! However he still has some blood clotting on his adrenal glands which are on top of each kidney. He still has some blood in his urine but the Dr's are optimistic about his recovery and we are in a wait and see mode for the next few days. The million dollar question is, if he is making these clots genetically or were they caused from the trauma of birth. We all hope this was a one time occurrence.
He is doing great, I got to hold him this morning and we talked about what football games that are coming up this weekend. Eli didn't think the Titans could hold off the Vikings this week. I told him that a strong defence could put the Vikings in check. Then he cried over it all, or maybe he was hungry:)
Ilde is doing OK. She is trying to do to much to fast and is paying the price for it this morning.
She technically should still be at the hospital from having a C-section but nothing was gonna hold her back from holding her little boy. Wheel chair and all she came rolling into children's hospital to see her sweet boy yesterday. Lots of tears and smiles.
Overall baby and Mama are doing great and are on track for a recovery. We are still not completely out of the woods on Eli but we are believing God for a full recovery. Thank you all for your prayers and email's txt's phone calls ect. Glad we have unlimited plans on our iPhones.
This whole situation reveals how we have such great community among all of our friends and family's.

Stay tuned...
Proud Dad
jim

Resting after watching the Chargers beat the Jets with Dada

All hooked up.

7lbs 15 oz
20 3/4" long

Tuesday Morning Update

A lot has transpired since yesterdays email. I will try to make this short and to the point. About 4:00 the Dr's at Williamson County found 2 masses on Eli's kidneys and he had some bleeding in his urine. They immediately got him ready for transport to Vandy's Children's Hospital. Lots of tears and praying going on at this point. Ilde had to stay at Williamson to recover and Jim went down to children's hospital to be with Eli. They observed him all night and his vital were good, however their is a lot of testing and scans to do today that may give us some answerer's. I will try to make a blog site today and keep it updated so you all can be in the loop. I will send out a URL link later. At this time we would appreciate email vs. phone calls. Our iPhones are pouring smoke out of them and the battery life gets drained quickly. If you come and visit, please no children. We would value all prayer at this time and thank all of you for the kind emails and love. We will do our best to keep you all in the loop. Love you all The Cooks