Complications become evident while moving closer to the exit door

Finnegan has been doing well, and on Tuesday they moved him from Intensive/Critical Care to Intermediate Care. Then on Wednesday he was transferred to the General Pediatric floor - the last stop before being discharged.

After the excitement on Sunday from his extubation, Finnegan has been taking it easy. From Monday-Tuesday he was usually found sleeping like an angel when he is not whimpering or crying about being hungry (when the nurses have listened to his stomach, they often say it is growling), waving his arms around, or doing everything he can to look at everything in the room but you. Oh, he also really loves holding onto his plastic connector rings. We often joke with him that he is pumping plastic instead of iron. He's got to get his strength up one way or another!

If Finnegan thought things would be easier once he was extubated, he was wrong (and well us too!). Finnegan had a LOAD of visitors on Monday including a speech therapist to work on swallowing, a physical therapist, and his Grandma Bruckner and Godmommy!


One of the best parts about Monday was the yummy Irish food at Kelleher's Pub with Finn's visitors and my one-on-one snuggles with Finnegan. After the disappointment of not being able to hold him on Sunday, I finally was able to hold my little peanut after 7 days of watching him fight for his life. I felt so surreal to have him back in my arms. He felt so huge compared to what I remembered, even though he has lost some weight from being in the hospital and not eating like he usually did. We hung out with daddy for a little while before daddy went home. I worked with Finnegan on sucking a pacifier, since he needs to reacquaint himself with sucking while we watched Easy A on television. I realize it's not the most family friendly movie, but it was the best I had at the time! We must have snuggled for about an hour before I was starting to fall asleep. His nurse and I weighed him before putting him to bed for the night. He currently weighs 5.5kg or 12 pounds 2 ounces which is about half a pound under what he weighed when he was admitted. So, overall, not bad! It's just hard to think that at nearly 6 (or 3 corrected) months old, Finnegan is 4 pounds lighter than his cousins and friends that are only 2 months old! What a little nugget! :)

Finnegan has still been struggling with his blood pressure, so they have been giving him medicine to help control his spikes of high blood pressure. His resting BP is at the high end of normal, mid-to-upper 110's. They have also been monitoring his potassium levels, and since they have lowered his Lasiks, he has not needed extra supplements of potassium.

I started back with my GED tutoring job this week, so my time with Finn was a bit more limited, but it felt nice to get back into the "old" routine. Plus, it was easier leaving him when I knew daddy was with him!

Finn and Aunt Jenny

On Wednesday Finnegan was officially 6 months old. I'm still in disbelief that he is 6 months old. I can't even really remember what our lives were like before Finnegan. It's amazing how quickly we can adapt to life changes. Wednesday was also exciting because he got moved from the Intermediate Care wing to the General Pediatric floor. That was quite a shock to the system when they told us he would only be checked on for vitals, etc. every 4 hours or so. The dropping of constant monitoring is a tough thing to go through.. "but what if" keeps cycling through your mind. It's a whole other world up here. It also took us a bit getting used to the "baby cages". The babies are in a basic hospital crib, but it is like a canopy bed and the sides of the "canopy" come down on all sides so more mobile patients cannot "escape" or get in trouble if parents aren't around. It's a standard procedure in children's hospitals, but it was really...shocking. Needless to say, we won't be leaving Finnegan. We also got some amazing news that Finnegan could possibly be discharged Sunday/Monday if he was on full bottle feeds and completely weaned off of methadone (pain med). I like to joke that Finnegan is our baby drug addict, but it is quite serious to make sure he doesn't go through withdrawal since he has been on some heavy sedatives and pain killers over the past week and a half. He also needed to be off of the oxygen to go home, but that came off Thursday evening!

Finn and Cousin Katie

They started him on bottles on Thursday. He ate about 4 oz from a bottle every other feeding and would get angry whenever the bottle left his mouth. He's now up to eating every feed from a bottle, but he had some struggles with spit up today. They started giving him an antacid 2x a day to help with any acid reflux. Once he is on 100% bottle feeds for 24 hours they will take out his feeding tube.

On Thursday, Aunt Jenny and Cousin Katie came for a visit. It was so awesome spending time with two of the most amazing women in my life. It was absolutely refreshing. Finnegan also started to find his little voice again. From Thursday-Saturday he started crying, talking, and squealing like he did before his began his hospital stay. He's still a bit congested, but he sounds A LOT better. He's still getting his breathing treatments and his vest treatment, so that helps a lot!

Since it was nearing the end of the week and most procedures aren't able to be done over the weekend, his care team set him up with a plethora of tests to be completed between Thursday and Friday. Thursday he was given a visual EEG to test his vision (duh) and Friday he was given a hearing test. Neither test produced very good news. Finn's vision test showed abnormalities. We're still not 100% sure what that means, but his neurologist should be by sometime this weekend to explain things in more depth. From what the report read, it seems as though he can see, but his brain was not reacting quickly enough to light changes, like there was a time lapse between when a light was shined and his brain responded/acted.

His hearing test was even more disconcerting. Consistent with his previous hearing tests, Finn's right ear is perfect. Previous hearing tests also were inconclusive regarding his left ear. Results from his most recent test showed that his left ear was not doing very much. The audiologist said he has permanent hearing loss in his left ear. The extent of the loss and the reasoning behind it are currently unknown. He could have been born with this hearing loss or it could be from the meningitis and the antibiotics used to treat it. In another month we will do a follow up test. The audiologist assured us that he shouldn't have issues with speaking but that localizing sounds and overall awareness will be hindered. As he gets bigger we can explore the world of hearing aids, but right now we're just trying to come to grips with it. Of all the things that could have possibly gone wrong as a result of the meningitis, and his severe prematurity, I would say that so far we're pretty blessed; however, it's still heartbreaking. Throughout my pregnancy and Finn's first 6 months of life I have dreamed up what his life would be like, how perfect he would be, and all that he would be able to accomplish. I'm not saying he won't be able to do any of the things I dreamed up, but it is yet another struggle for Finnegan to overcome. No one likes to see their babies struggle. I was just praying that this last hospital stay would be the end of his severe health struggles.

He started crying when the mobile stopped. He's that cute. The blanket he  is using in his prayer blanket from the hospital, made by a group from St. Patrick's Catholic Church in Bloomington which happens to be our home parish. :)

Finn has quite the road ahead of him. The hardest part of all of this recovery is having to pay closer attention to his milestones and development. I worry that I'm going to turn into one of those moms that freaks out at every little thing my baby does. I'm so scared that the vision abnormality and hearing loss are not going to be the only two things we have to be concerned about with Finnegan. God, please help us to understand your plan for our little man.

I don't think I know how to thank everyone for all the prayers. It's overwhelming when people tell me their church is praying for Baby Finn. When I think about the amount of people who are keeping Finn in their prayers, I want to cry for joy. The words "thank you" are not enough, but they are all we have. We are so humbled by the caring you and your friends and family have shown for Finnegan and us. From the dozens of churches, family, friends, and even to the father of Ian's sophomore/junior chemistry teacher... people very close to us and people we have never met: from the bottom of our hearts, thank YOU! We would like to let you know again just how much we believe in the power of prayer. Whether you call it prayer or well-wishing, you have made the difference in Finnegan's life.

We know that Finn will have a rough road ahead of him: re-learning muscle strength, compensating for hearing loss in his left ear, overcoming his abnormal vision (other than knowing he is not blind, we're not sure what the extent is), and any other sequelae, neurological or otherwise, that might not yet be clinically evident. We are overjoyed and eternally grateful to know that he has at least survived to have the chance to battle these things. Things could have ended way worse. Many, many, many people, including family, have not only survived life-threatening diseases... even diseases that don't have a known origin or name, they have done well. If they can do well, so can Finnegan.

The amazing view from Finnegan's room. These two windows are a whole wall in his room. It is absolutely breathtaking.