Daddy's Kangaroo Day 3 Weeks Old Today!

Today Lucas was doing well. Daddy arrived around 10 this morning to kangaroo him (mommy was having a party). His oxygen level was at 26% before they pulled him out of his bed. Once, they put him on Daddy's chest and Lucas got comfortable and relaxed. He breathing improved and the nurses had to turn down the oxygen to 21%, which is what we breathe as adults. After an hour into holding him, Lucas's oxygen level starting going down along with his heart rate. This has been happening during the past few days causing mommy, daddy, and grandma some concern. I was trying to stimulate Lucas by rubbing his feet, but his heart rate was at 91 and his oxygen level was at 58%. The two of the nurses in the NICU came over to assist in bringing his levels up by rubbing his back and head. This happened 2 other times while I was holding him, but the nurse explained to me that this can be caused by reflux. Adults get acid reflux. The nurse explained that Lucas has increased his feedings so much that he is getting 16ml every 3 hours, causing a full tummy and reflux. Every time he has the reflux it causes him to stop breathing, which is a natural reflex to keep food out of the lungs. So the nurse said Lucas will most likely go on a more staged feeding to reduce the reflux.

Lucas managed to last a full two hours during his kangaroo time with Daddy. His latest stats as of 10:30pm was 2lbs 15oz (almost 3lbs) and was at 26% oxygen doing well.

Thursday News

I spoke with the kids last night as they left the hospital. Lucas was doing well and lost a slight bit of weight after the monstrous gain he had. Not unexpected, especially after throwing such a crying fit getting his tube moved from his mouth to his nose. Amber said he had tears. That would make any mom cry.
Daddy tried to hold Lucas for his turn, but big brother Brayden wanted all the attention and was set to let everyone know. The hospital family room had quite an experience with Brayden jumping from all the walls. Guess other plans will be necessary when it is daddy's turn to hold baby and Brayden is there.
The kids got a chance to talk to Dr R regarding the latest ultrasound. The baby's blood clot is starting to recede and they doctors could see what some of the damage is for Lucas. Part of the parietal lobes on each side have died off due to the bleed and this scan revealed how it will impact Lucas's future. The area of loss is in Lucas's motor skills development. This means he might have trouble coordinating movements of his arms, hands, legs, and feet. He will be assigned a physical therapist who will work with Lucas to re-channel his limb movements. Fortunately the brain is capable of rerouting, over time, this learned activity. We won't know the long-term outcome for a while. The doctor will have the specialist talk with Josh and Amber next week sometime, where they will get more information. Grandma knows that extra stimulation to these areas of movement will allow the brain to rewire itself over time. Also, the latest data on brain development has change in the past 3 years and research is showing early intervention makes a big difference in outcome. Lucas is going to get plenty of help to catch up and develop his motor skills. The kids have pictures and should update more tonight.

What's Happening?

Well Tuesday grandma had to head home for a long over due medical appointment. See grandma has been off work from her normal duties of flying jets around the sky due to an injury while at work, so she had to come back to Calif. I spent the day packing and stopping by the hospital to see the little guy, who was spending a lazy afternoon snugged up with mommy. Yep, Amber got to hold him for the full 2 hours without any complications. I arrived just as he was been placed back in his bed. The nurse had turned up the room light so Lucas was under the covers, so to speak, with a cloth diaper placed over his face. Of course grandma had to peek and was delighted to see Lucas wrinkle up his face when the lights hit his eyes. He squinted and made it quite clear to grandma to turn off the lights. I was elated! See one of the more common problems for preemies is blindness so the fact that Lucas can sense brightness and darkness is fantastic. We won't know about his total eyesight for many months, but we know now he sees light and dark for now and we will take this accomplishment with joy. Keep praying!
Oh, Amber didn't get to have any of the scheduled Baby Shower's as planned. Peggy, from work, is having a mommy/baby party this coming Sunday. Part of the "games" will be to guess Lucas's weight so I have been instructed not to provide the actual weight gain by Lucas. Of course I can give clues. The doctors and nurses have discovered Lucas has quite an appetite now and have increased his food consumtion to 8 cc's every 3 hrs, as of Wednesday night. It seems like he is a little piggy now when it comes to eating. Way to go grandson! I can tell you he is gaining weight and beginning to fill in his wrinkles.
Last night the nurse got tired of having Lucas's feeding tube down his mouth, so he was switched to a more conventional method of down the nose. Let me tell you he was "extremely" mad at the nurse for that change. Lucas was so upset that mommy had to leave the room. Fortunately when it was all over mommy was able to go back in and comfort Lucas. He was really tired from the whole ordeal and just wanted to curl up and go to sleep, and he did. Later that night Lucas's big brother dropped in for a nighttime visit, where Brayden and daddy, with Amber were able to say goodnight to Lucas. Grandma misses you too, little buddy, but I will be back for the party. Keep going and beat the odds kid! We are all praying the brain ultrasound on Thursday hold positive news.

Memorial Day May 25th A Very Good Day.

Must You Wake Me UP

Mommy and Grandma had the afternoon with Lucas. We got to give him a bath and see him struggle to get his way. We found out he doesn't like getting soaped down, but he loves getting rinsed off. Also we woke him from a good nap to give him a bath and he let us know he was not please with our inconsiderate ways.

The good news he is gaining weight! Tonight he breaks the scale at 2lbs 8oz's YEAH WAY TO GO!!! Finally he is eating like a little piggy.

The doctors have increased him to 6cc. That is fantastic! He is still on the ventilator and we have found when he sleeps deeply he forgets to breath, otherwise he would be okay off the vent. Maybe a few more days. His bloodwork is looking good and there is no signs of the brain bleed causing any problems as of yet. Keep the prayers going folks, this is a long journey for this battle. We need them!

More Pictures from Saturday

I Am Awake Now

It's Grandma's Turn

After yesterday's fiasco grandma elected to go over and spend the afternoon with Lucas. I arrived just in time to meet his day nurse and she was real nice and on the ball when it came to taking care of Lucas. Lucas was off of the blue light and had his own tent. That means no visors or hats etc. She filled me in on his daily progress and Dr R came in today and added two more antibiotics. Dr R says nothing is growing from the bloodwork yet, but it may not since Lucas has been on antibiotics since birth, and she feels he is still fighting something since he is working too hard to breath. Seeing him back on the vent was okay because it was obviously apparent he was doing much better on it.

I got to do his daily 4pm cares, sponge bath, diaper change, and feeding. He was sooo sleepy, all he wanted to do was go back to sleep, which I was pleased to see he was so relaxed. The nurse said he ate his whole lunch of 4cc's of milk (about a tsp). Amber and Josh stopped by after spending the day with Lucas's big brother Brayden. Brayden had a runny nose and was off limits to the NICU. Amber and Josh did Lucas's night cares and Lucas weighed in at 2.4 oz. Finally he is going up in weight.

Back On the Vent

Amber got a call from the night nurse letting Amber know that the baby was placed back on the vent after several episodes of turning blue. Guess the night nurse saw what we saw! Next time Amber and I will call the doctor up when the nurse is too busy to pay attention. Fortunately this is not the norm for the NICU, but they were short staffed and had older babies that needed to be held quite a bit.
Grandma will head over this morning and daddy, mommy, and Brayden will arrive later.

I Just Ate; It's Time For My Nap

Amber and I went to the hospital around 4pm to take care of his daily 4pm cares, ie. changing the diaper, feeding, and measurements. So far Lucas is still on the assisted CPAP and has his scary moments (at least scary to us) where he forgets to breath and his heart slows down and he turns blue. For those who have not witnessed this kind of excitement, it takes about 30 seconds for Lucas to turn a vivid deep blue. The nurses are use to it, we are not. I thought I would need a heart monitor after a few blue turns by my grandson. The nurses say this is normal for a baby Lucas's size. My thoughts on this is to tell Lucas to just get bigger in a hurry. Overall Lucas is holding his own. We found out his white count is down and his billiruben is slightly up, so blue lights it is. The rest of his bloodwork is looking okay, so they will repeat it in the morning. Amber got to hold Lucas for the 2nd time and he was mad at the nurse for messing with him after lunch. All he wanted was a nap. Tonight he weighed the same, no gain, no loss.

Not Such A Good Night

We talked to the night nurse and she said Lucas had trouble with the CPAP all night so the doctor has ordered tests. It could be the infection is back stronger or something else. Also he did not digest his food last night so I guess it will be a rough spot for Lucas again. Hopefully it is minor and controllable. He may need to go back on the ventilator if it becomes too difficult to breath again.

A Day with Big Brother Brayden

We got a late start to the hospital due to stuff at home, but it all turned out good. Brayden was allowed to spend a little more time with Lucas. Also Josh got a call from Dr R and Lucas's 2nd brain scan was done today. The results indicate a very slight change in Lucas's favor. He is starting to break down the blood clot. We need to continue to pray that he is able to absorb it all without blocking the circulation holes for his spinal fluid. This is all up to Lucas so we have to patient and wait until next week's follow-up ultrasound on Thursday.

Mommy got to give Lucas his 1st big bath and he enjoyed the whole experience. He kept his eyes open throughout the big event. Afterwards, Brayden arrived with daddy and watched Lucas get fed. He is up to about a teaspoon now and he looks like he is finally gaining weight.

Lucas Continues to Thrive

The kids had a great day with the baby and big brother Brayden was even allowed in for 5 minutes to see his little brother. Brayden was quiet and said "look he is sucking on his fingers." Overall Brayden thought it was pretty cool to finally meet his little brother. The night update on Lucas continues to be positive despite yesterday's news. Daddy had a great time holding Lucas. Tomorrow will be Amber's turn again. The rules are no clothing, only skin to skin contact with Lucas. By the looks of the pictures daddy didn't mind. Oh Lucas weighed in 2oz heavier tonight, he is now up to 2.4 oz and ate all his dinner tonight without spitting any of it back. He is taking now 3cc's or about a 1/2 tsp. per feeding every 3hrs.

Day 11 I Got A Binky (Pacifier)

Today mommy and daddy came in and daddy got to hold me for the first time (pictures to follow). I loved daddy holding me and when I squirmed daddy rubbed my back (which they said not to), but I loved it! See they don't know everything. I got tired of hearing the kid next to me screamin so daddy had to put me back in bed just after an hour of being held. Tomorrow the neurologist will take another picture and we will find out by Friday what is going on. Also I guess I get all the tests again. Good news they are feeding me more and I am starting to gain weight. Mommy says if I am a good boy the nurse will let me get a bath from mommy instead of the nurse. Yea!

What a Day

The word from the doctors are Lucas's ultrasound indicates a grade 4 brain bleed; not good. The good news is he is showing no symptoms of this type of bleed. It is in fact a puzzle to the doctors and they are shocked at the results. Of course this freaked Amber, Josh, and grandma out a bit. Doctor R said they have no way of determining when or why this happened, but they are prepared to act if necessary. There are some serious complications possible with this diagnosis. However, Lucas continues to surprise us each day. Today he decided to remove his own ventilation tube, so the doctors placed him back on the CPAP and so far he is doing well with it. Time will tell! Good news he was held by mommy for over an hour today.....his first time out of the box. He loved it so well he fell asleep and forgot to breath, mommy had to gently stimulate him to wake up a bit and breath. I have some great pictures of him being held, taken by daddy. Please continue to pray for Lucas's remarkable progress and that his little brain will recover from the bleed without complications. Thank you to everyone that is supporting Lucas, Mommy, and daddy.

A Call from the Doctor Day 9

Well Amber and I took the morning to just rest and wouldn't you know it the doctor calls. They took Lucas off the vent again and he is on the CPAP and doing well. Dr R. also said she had the brain ultrasound done and wants to discuss the results in person, we both held our breaths. We don't know what it means, but we are enroute to the hospital. Pray it all goes well! I will update everyone asap. Grandma Jojo

My 8th Day and I Get a Day Off

Mommy and Grandma showed up at my lunchtime change. A new doctor was on (not part of my team) and he was out to lunch, so mommy says. Everytime mommy asked him a question my nurse had to correct him...funny! Mommy changed me again and this time I kept stickin my foot and hand in my diaper, it took all three of them to change me...Heehee:) Grandma calls me a little stinker, I don't know what that means, but I like the sound of it.

The nurse says mommy can hold me tomorrow. I hear them say no tests today, my day off. It's about time! Oh, I get my diaper changed more frequently and I get fed more often and more of it too. Someone is finally listening to me. Hey could someone tell me what fiesty means, the nurses keep telling me I am fiesty.

2am Call from the Hospital

Well as we suspected baby Lucas did not quite handle breathing on his own yet. His brain pathways need to be a little more developed yet. He continued to have trouble with breathing on his own with the assist CPAP, so at 2am they called me (mommy) and said they were going to retube him back on the Vent. His little heart was stressing too much from trying. Every 10 minutes or so his heart would decelerate down so low he would set off all the alarms. It was too much stress for him, so they elected to give him more time to rest and develop those neurons. They will try in a few more days. The good news is they believe Lucas is 28 weeks old today, a week older than initially thought. This is due to his development and size.

Happy 1 week old today son! Can't wait to bring you home...

Day 7 and it was a Big Day

Grandma and mommy came to visit just as the nurse was about to take me off the ventilator. Within minutes I was on my own for breathing. I did great for about the first hour then I was getting too tired and about every 10 minutes or so I would just stop breathing and my heart would do the same and boy does that ring the alarm bells. After about 2 hours of setting off the alarms, the nurses and doctors were trying to decide if they were going to let me stay like this or give me a little help. The funny thing you see is called a CPAP, it goes in my nose and supplies a flow of air for me, but they have another one similar that will give me a break and breath a few times per minute to help me out. I think this is what they will try next, but if that doesn't work I will go back on the vent for a few more days. Whatever is best for me is what I heard my mommy tell them. I will tell you I am tired tonight. I have been poked, prodded, and stabbed all day. They tried the 4th spinal tap and I told them I was,n't going to cooperate and I didn't. The doctors will have to meet tomorrow with infectious disease people and see what their next plan will be. I am electing for the 21days of antibiotics rather than another stick in the back. They also took out that thing sticking in my belly button and jabbed me in the arm with a thing they called a pic line. So my day sucked, but at least all these tubes and wires are gone. I got even with the day nurse (who messed with me all day) she took my diaper off and I gave her a LOAD that just would not stop! HaHa HaHa!

Just another lazy day in the NICU

Great Day at the NICU

Daddy and Mommy hung out at the NICU today and watched as Lucas was looking better color wise and more active again today. The doctors are going to try again tomorrow for the spinal tap, which we discovered is critical, to ensure he doesn't have Menengitis. Once that is done the doctors will start to remove more stuff. Lucas still weighs the same, but that was expected.

What the Heck!

Tonight we got to manage a lot of Lucas's nighttime care. Daddy got a new camera to film our little star. It also has a video selection, so bare with daddy as he figures out his new toy.

Big Day 5

Well Lucas is doing great. They disconnected a bunch of monitors and changed stuff up to make him more comfortable. The spinal tap was a bust again, so we find out tomorrow if they are going to try again. We are going to talk to the doctors and if it only means continuing the medication longer we will elect to do that rather than another tap attempt. We have great pictures and the video is fantastic! Watch the whole thing!

Doctor's Meeting and Update

Well just got word from the kids that they met with the daytime doctor in charge, and she told the kids Baby Lucas is doing much better. His billiruben count is now in half from where it was and his white count is starting to come down, not a lot but enough to indicate improvement. The doctor also told the kids Lucas should be off the vent by next week and on a CPAP, which will assist him breathing, but at least he will get the tube out. Today he will get another spinal tap attempt, lets pray it is successful and it is a negative results test. There's more! Lucas will have a belly button arterial line removed today and they will place a pick line in to give meds as needed. This is a big win for Lucas! The doctor said Amber and Josh should be able to hold Lucas sometime next week if he continues to make the progress he is now. They were sooooo excited to hear this! I am uploading the pics that Amber took, but they are fuzzy. If I knew she was so shaky I would have retaken them. We will have more tonight! Right now I am getting the house professionally cleaned for them. Poor Amber has been on bedrest for a while and Josh has been working around the clock and trying to do it all. This will be a nice surprise for them both.

Mommy and Daddy Celebrate Tonight

Amber just called and said the baby is doing great! In fact, the nurse weened the vent down to 21% and if Lucas keeps tolerating it he should be off of it by next week sometime. Also, the nurse removed one of the monitoring devices. I believe it monitored a part of his breathing. Of course Amber and Josh said Lucas was much calmer after it was removed. Josh was jumping for joy when Lucas's night nurse allowed Josh to pick up Lucas for his evening weigh in; and surprise surprise, guess who gained an ounce! Yep, Lucas is up an ounce. I can see why Josh and Amber are so excited tonight. Of course this is the night I stayed home and missed it. Hopefully the kids got pics for me. I bought them a camera to keep all of us in the loop when I am not there to take them. Well I am calling it a night with all this great news. Good night everyone.

Day 4 is a Better Day

Well Lucas finally calmed down this morning and has been good all day. Unfortunately the doctor could not get the spinal tap done, Lucas was just not hydrated enough to be successful, they will try again tomorrow. I arrived around 3:30 this afternoon to find Lucas mad at his nurse. She had me scrub up and place my hand on top of body (it almost covered all of him) and stop him from frailing around. He calmed right down for grandma. I had the magic touch! He is sooooooo little we were taught not to stroke his skin, or make any loud noises; both would hurt him. We have found Lucas doesn't like the noises of the alarms on the equipment. He also likes to pull his little mask off to see out, but he will be under the lights until his bruising has stopped and his billiruben is gone. The good news is it was down today.
Amber is much better today and will be discharged from the hospital by midnight tonight. I got them a room at the motel across the street for the next two nights. Hopefully then we will know more regarding our little boy. Amber needs to supply milk for the hospital so it is more convienent being so close rather than almost an hour away. We will have pics later tonight.

It Takes Two

Day 3 Not so Good

Now everyone can see how big I really am, the nurse has her finger at 12"

Hi everyone, it's grandma. I just got in from the hospital where I sat with Lucas for several hours. When I arrived it was quickly apparent he was not having a good day. His heart rate was constantly just under 200 beats per minute and anything he didn't like would send it soaring into the 210-225 range. The nurse gave him a sedative to calm him down, but it only lowered it down into the 180 range. The average is 130-160 for him.

We would find out why when the doctor showed up. It turns out both Amber and Lucas's culture results had just come in and they were identified having a nasty infection from one strain of the Haemophilus bateria. Bad bug for the both of them, but especially for Lucas. The doctor informed Amber and Josh that little Lucas was going to get a spinal tap tonight to determine if the bug got into his spinal fluid. Please pray that it did not. This bug is very vicious and can cause meningitis, very dangerous for someone Lucas's age and size. The good news is it is a bateria and can be fought using antibiotics. The doctors had placed both Amber and Lucas on these drugs in anticipation of finding a bug, just not this bug. So Lucas's meds are being changed to attack this specific bug now. The doctor thinks this is part of the reason his heart rate is elevated and his fluid intake needs to be adjusted. Lucas did receive another round of platelets today to keep him strong.

Amber is improving and still very sore from the spinal block and needs strong drugs for the pain. Hopefully this will improve quickly. Josh was showered, shaved, and in clean clothes. I almost didn't recognize him.

I have a few more pictures today. The baby will be under the blue suntaning lights for a bit while he combats a high billirubin count.