Cheryl and Josh dot Net

Well after 5 days Lily is home! She is doing much much better compared to when she was admitted but we still have a couple of challenges ahead. She was weaned off of the O2 fairly quickly and tolerated it very well. However, while she was admitted and being monitored we discovered that she has spells of bradycardia (when her heart slows down). The monitor alarms are set to go off if her heart rate is over 200 or under 80. Sunday Lily started coughing and one of her alarms went off. Since they were monitoring a couple different things we didn’t even know that a different alarm had gone off until the nurse ran in to check on her. She said that her heart rate had dropped below 80. While the nurse was checking it out she did it again. This happened a couple more times that day but it was always associated with her couging… until later the next day. Lily started having these “spells” during her sleep and she wouldn’t stir or anything. The Drs said that it was a response to her coughing and moving mucus around but we explained that she did it while she was sleeping. The night Josh stayed with her she had 7 of these spells. Finally the Dr decided that they would do some tests and send the results to a Pediatric Cardiologist in Peoria. That day they did an echo and an EKG. Nothing conclusive was found from this but we do have a follow up appointment in February. We are hoping that the brady spells are associated with the virus and will stop when the virus is completely out of her system. To keep an eye on this while we are home Lily is hooked to an apnea monitor. They are really not concerned with apnea (when one stops breathing for longer than 20 seconds) but this monitor also checks her heart rate. She is hooked up 24 hours a day, 7 days a week until our follow up appointment. We also learned CPR just in case, but are really hoping not to have to use this knowledge. The apnea monitor has been a bit of a challange as we have to take it every where we take her. We are trying to keep life pretty normal but I don’t think we’ll be going very far in the next couple of weeks.

Now that I have updated you on her hospital visit, I need to backtrack to a very exciting event that got skipped over due to all of this excitement. Sunday January 18th Lily was Baptized at St Matthew Lutheran Church (the same church where we were married). It was so great to have so many family members and friends come to this amazing experience. Lily was so good during the whole service, she slept through most of it. Then during the actual baptism she woke up when the water was on her head but she loved it. Pastor Bob paraded her down the aisle and then she fell back to sleep for the rest of the service.

Following the service we had a lunch at my mom and Sean’s house. It was good food and great fun to have so many people that love Lily in the same room! We want to thank everyone to driving down/over to see her and be a part of this special day.

Looking ahead – Lily has an appointment with her primary care doc  for her 4 month appointment tomorrow. She will be following up on the RSV as well as making sure she is meeing her milestones and getting some more shots. She also has weekly physical therapy appointments now to work on her torticollis. It seems to be going well. She has much better range of motion and we just need to work on getting both sides of her neck strong so she can hold her head straight.

Our little chatterbox continues to crack us up and amazes us every day. She really wants to turn over but hasn’t quite figured it out yet. I’m sure we will let you know when it happens!

Lily has been a trooper through this whole thing, even the nurses have been saying that.  She is doing okay; not good… not bad… just okay.  Cheryl told you a little about RSV in the last post so I will skip over that and talk about where we were , where we are and where we are going.  As Cheryl mentioned RSV can make it hard for you to breathe.  To help her out they added her to a machine that helps give her oxygen and also keeps air moving around in her lungs to try and open things up a bit.  The part that is making it hard on her to breath is all of the gunk she has in her sinuses and throat and lungs.  While they have this machine opening things up the hopes are that she will be able to get most of the stuff out, but they also come and help suction stuff out about every hour.  They were helping her out to make sure that she was getting all of the oxygen that she needs without breathing too hard/fast.  On this machine there are two things (maybe more, I don’t claim to know how this thing works I just know what we are watching) that they are doing to help her beyond what she is able to do herself.  One thing is that they are giving her more oxygen and the second thing is “flow” or how fast they are pumping air into her to keep things open.

When we first got here her Oxygen (O2) was set at 40% and her “flow” was set to 7 liters/hour.  A normal person doesn’t need any of the flow and room O2 is 22%.  She stayed there until Saturday night when we were able to turn down her O2 to 35%.  Today we are at 30% and 6 liters.  We will make sure that she is getting enough oxygen in her blood and as long as she is we will continue to slow down her flow by a liter/hour every 4 hours.  If she seems to need to stay at any of the levels than we will stay put there until she can keep up.  We are hoping that we don’t have to add back anything that we are able to trim away.  When we get down to 0 liters/hour flow and 21 percent then we should be about able to go home.

She has started to eat every four hours which as you can all tell she is usually a pretty good eater, so she likes that.  We get to hold her when she eats so we both love that.  She is so happy to be just sitting up and not laying in her bed.  We get smiles out of her which is pretty amazing for what she is putting up with.  Cheryl and I are taking turns spending the night at the hospital, tonight is Cheryl’s night; it is sad to leave her but we know that she is in great hands.  Even if everything keeps going great we probably have another couple nights to stay at the hospital.  Thanks to everyone for your well wishes and prayers, we will try and keep you updated here when we have more to report.

Lily’s first illness turns out to be quite the extravaganza!

Lily started with a super juicy cough on Tuesday. Since every other kid at daycare had it, we didn’t think too much about it. Then by Wednesday night we noticed she wasn’t eating quite as much as usual. Thursday morning I got called at work and was told she threw up all of her food and that we would have to pick her up from daycare. Thursday night she started breathing really hard and fast. I spoke with the patient advisory nurse around 3am and we decided to make an appointment in the morning. Lily saw the Dr Friday morning and we had our first breathing treatment. She actually ate at the Dr’s office so we were sent home with a nebulizer machine and told to do those every 4 hours until her appointment Saturday morning. Well Friday night she developed a fever. We are SUPER lucky to go to church with her pediatrician who said we could call her at home if we needed to. Of course we did… like three times! Finally, 9am on Saturday came and it was time for our follow up appointment. Her O2 sats were 91-94%. Due to that and the fact that she wasn’t eating the Dr said she was on the fence on whether or not to be admitted to the hospital. He called over to the hospital and spoke with the Dr. Together they decided it would be better to admit her and treat rather than have us take her home and then have to come back to the clinic later in the afternoon – we completely agreed!

We got to the hospital around 10am. Though it was unfortunate circumstances I was so glad that she was here. I actually work on the Pediatrics floor so I know all of the nurses and doctors. They knew as soon as they heard the name Lilia that it was my daughter. We heard that two of the nurses fought over who was going to take care of her!

Soon after she was admitted her O2 sats dropped into the 80s and they decided that she would need oxygen. They started an IV so she can receive IV fluids as well.

Lily is such a trooper and even though she is hooked up to all sorts of wires and tubes she is laying there fairly comfortably. She’ll be awake for a little while but it seems to be pretty exhausting to breathe so hard so she has slept a lot as well. She only cries after they suction her nose, but as soon as they are done, she stops! She is such a great baby and we cannot wait for her to feel better!

We don’t have a discharge plan as of yet. When we were first admitted it seemed like she would just be here overnight, however due to her requiring oxygen we will probably be here a little longer.

Josh and I are doing well. We are staying positive because we know she is in great hands! We very much appreciate all of the thoughts and prayers that are with our little girl!

While I write this Lily is sleeping with her Boggie right by her side. (She has this stuffed toy that kinda looks like a dog and kinda looks like a bunny, hence Boggie!) At midnight she will get another breathing treatment and then hopefully we can both get some more sleep.

Lily has found her voice! It’s hilarious! We were hanging out the other day and Lily was just making some cooing and squacking noises. Usually when she starts making sounds, she ends up getting mad and we put the binky in her mouth. This time she wasn’t mad. Josh would say HI to her and she would talk back. It was the best! My mom has it on video and we are desperately trying to figure out how to get it on the website so you all can see it. Since then, she talks to her cardinal “Gordy” on her playmat and pretty much anything else that will listen.

Lily is also getting much better with her hands. Her new playmat has a motion sensitive “light show” for lack of a better description. She will grab onto Gordy and pull. Sometimes she pulls hard enough that the show starts but a lot of times we have to help. Santa was sure nice to Lily this year!

Physical therapy is going well. We had our second appointment on Wednesday. She did really well and made it through a 45 minute session. The physical therapist gave us some new stretches and we even play on a therapy ball (its an exercise ball). Lily loves tummy time on the ball! She drools all down the side of it, its great! Thanks for letting us borrow yours Kenzia, although you might not want it back with all the drool. We have another appointment on Friday.

Hmm… other than that we are just taking it day by day. We truly appreciate Lily’s temperment and how calm of a baby she is.

Happy New Year!

We have been crazy busy the last couple of weeks and I finally have a chance to sit down and write an update. Christmas was a blast. We celebrated with the Reeley’s, the Ehorn’s, and the Chmura’s (well Josh and Lily celebrated with the Chmura’s, I had food poisoning and let’s just say I wasn’t celebrating). It was exhausting but it was great to be able to see everyone. Lily met a lot of family members for the first time so that was great!

We went over to the Reeley’s for New Year’s eve. We played Wii, Apples to Apples and Canasta. Some of us (Bill) got the giggles for reasons I’m sure will bring bad Karma to us all this year! But it was really fun and we had a great time.  I had to work on New Year’s Day for a couple of hours, so we went home a little early.

We finally took down all of our Christmas decorations, which is a little sad but kind of nice too. Our house is back to normal now.

Neither of us made New Year’s resolutionsthis year. I heard this morning that 80% of people give up on their resolution by Valentine’s Day. Not that that stopped me from having one, but it was an interesting tidbit to know.

Things are finally starting to quiet down around here, although not Lily, she has found her voice. Check out her update for more info. We are getting back to our regular schedule which will be nice.

We hope this new year bring happiness to you all!