A Sleepy Day

Today grandma snuck in to sit for a while right at the end of 3pm cares just in time to see everything go crazy in Lucas's pod. 3 babies came in all at once and two of them were twins and the other was a 24 weeker. It was nuts in there for hours as everyone worked on the 24weeker and the new twins. They called for extra nurses and one would peek around the corner and check on Lucas and I every few minutes, but left us alone for the most part. Because he was just finishing up on cares the nurse left his hatch open so I could see him off to sleep. It became apparent that Lucas was not sleeping soundly. He hates noise! And that 24weeker was causing some commotion, so grandma asked a nurse to come close the pod so he could rest better, and she did. Grandma sat around for several hours watching over Lucas while the hectic events were happening. Lucas was asleep but he was restless, it was clear he was not liking the noise, so when the nurse came back in, I let her know he was not sleeping as well as he normally can. By time 6pm cares rolled around the nurses were still very busy with the 24 next door and a charge nurse came in and had Lucas's cares done in 10 minutes; most of the time we take our time and participate, but not today, it was a zzzoooo. Lucas was rolled on his tummy (his favorite position) and quickly went right into a deep sleep. I can always tell because he forgets to breath once in a while in a deep sleep. Overall he is doing great and last night he was back up on the weight at 2lbs 11oz.

June 4th, Day 25, A Conference; The First of Many

Today we all met with the head pediatrician, Dr R and the neurologist, Dr C, we discussed the future outcomes possible with Lucas and what and when we could expect. His brain bleed is greater on the left side, but still present on the right. It is starting to reabsorb, but it will be a slow process over an approximate 8 week period; just the same if you or I got a large deep bruise. It is in the Parietal Lobe of the brain, what cell are affected we and the doctors won't know for a while. What we do know is the cell that are damaged will not work, some cells in the brain are in reserve, so to speak, but if they are able to "Fill in" they won't function at the same level or rate that the original ones were programed for. We just won't know until he was suppose to be able to do something and he can not. The thing with preemies is they are behind in achievements anyways so we don't really know what the calendar dates will be.

We did get to do his 6pm cares and right on cue he woke up and began to play. The pictures are of him waking up. Also Amber got a syringe with milk in it tonight and was able to put some in his mouth. Lucas loved it! To watch him was funny. He just sat there waiting for more. He loved it in his mouth. This will be the first big test after he comes off the ventilator. Dr R says it will most likely be Saturday when she comes back from her days off. She wants to be there when Lucas comes off. Of course Lucas can change the plans. If you look at the pictures you will see he loves to grab hold of his tube and has been known to put it out himself. The doctor says if he does it again they will leave it out. After getting back on the CPAP they will start to introduce him to more breast milk orally and move towards bottle feedings. The suck, swallow, and breath condition will be the first major hurdle coming up. So far the neurological pathways at this level are intact. We pray for the next level too!

Monday Blur...Tuesday's Watch

Daddy spent the morning with Lucas on Monday, while mommy went off to work with her old boss. He was nice and gave Amber her job back after the other clinic replace her while out on maternity leave.

Anyways while Josh was at the hospital two doctors approached him and told him they had set up a meeting for Thursday with the whole team and parents; I was invited too. Apparently, the two doctors told Josh that Lucas most likely will have a serious disability in addition to Ceribal Palsy. They told him this was from the brain bleed and that occurred from contracting the haemophilus bateria. They continued to tell daddy all the nasty things that occur with this type of illness for preemies. Needless to say, daddy was devastated. Grandma had to meet him on the way home and buy him a drink. Amber didn't take the news well either.

For me, I am well aware of all the risks and probabilities and closely watching Lucas. He still shows no signs of the severity the doctors spoke of and yet the doctors say he has a 90% chance of experiencing these disabilities. I have questions so I guess we will see what they say on Thursday. Of course there is the chance Lucas could be in the 10% range, I don't know, but I am watching.

I spent the day with Lucas, he had his diaper changed 2 times by grandma, and now that he is being fed by a timed-released method, the dcells have diminished to almost nil. Lucas spent 40 minutes awake watching me watch him. He sucked on his binky for about 15 minutes just before he went back to sleep.

Tonight mommy and daddy showed up after Amber got off work. I could see that they were still upset by the doctor's report and it showed. Neither Amber or Josh have slept much from hearing the possible outcome on Lucas. Prayer's are needed and reassurance that Lucas has the hand of the Lord upon him. Let's pray Lucas is in the 10% range and the Lord won't give the kids anything they can't handle.

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.