Reflections on Reagan's Illness

I realized the other day that I wrote two posts about Reagan's hospital stint.  However, in both of those posts, I just wrote out the facts of what happened; I didn't include any personal reflections.  That's what this post is about.

I can say without a doubt in my mind that my faith was strengthend throughout this trial.  I was telling someone the other day that this was by far the most difficult trial I have experienced.  Sure, there have been other things, but this came out of nowhere and hit both Ryan and me to the core.  There is no way we could have prepped ourselves for that week; the high of bringing another daughter into the world and the low of having our son hospitalized for 5 nights.  I told this lady that I didn't know how my faith would respond in a difficult situation like we faced.  I had seen other people face trials and difficulties and weathered them with such faith and strength in The Lord.  I always wondered how I would respond if given a trial (especially with a child at the center of the trial).  My faith got me through this trial.  The Lord was with me every day and I felt a calm about the situation that is unexplainable.  Of course, there were moments throughout that week in which I broke down crying, sad I wasn't with Reagan, and concerned about his health; however, by The Lord's grace, I was able to get through those moments knowing The Lord was right there with me, carrying me through this trial.

You know the poem "Footsteps in the Sand" by Mary Stevenson?  The last line of the poem states "The times when you have seen only one set of footprints, is when I carried you."  I can attest to the truth of this.  Emotionally, I felt so alone after coming home with Rylan and my two boys were not home with me.  It was a very difficult time, yet I had strength that could only come from God carrying me through.

Having Reagan in the hospital and being unable to be by his side during this traumatic event in his short life was beyond difficult as a mother.  I initially felt a tendancy to place guilt on myself for not being there with him.  However, The Lord was ever present in my thoughts and helped me push Satan's lies out of my mind.  Instead of telling myself "You should be there.  It's what a good Mom would do, despite having an infant at home.  You can get all the germs off and protect Rylan. Just go visit him and show him how much you love him," I was able to focus on Ryan being there as Reagan's support.  In fact, it was a great time of Ryan and Reagan being able to bond since they spent so much time together.  The Lord allowed me to release the guilt of not being there and I felt comfort in that.  Satan wasn't controlling my thoughts; The Lord allowed me to push Satan's lies aside and focus on Truth.  Don't misunderstand me here.  As a Mom, I desperately wanted to be by my son's side.  However, I knew I couldn't.  It wasn't safe for Rylan to have me exposed to Croup, RSV, and pneumonia and potentially give it to her at less than a week old.  

My natural tendencies are to worry, worry, worry.  I'm a worrier; but The Lord is working on this with me.  While I was concerned about Reagan's health and questioned why he initially wasn't improving, I can honestly say I wasn't worried the way I thought I would have been worried.  Looking back, I assumed I would have just worried all day long and questioned God about how He could allow this to happen to our family at this time.  I assumed my thoughts would have been filled with questions and worst-case scenarios.  But I didn't worry in that way; I was able to release my worrysome thoughts to The Lord and know that Reagan would be okay.  This was only accomplished by The Lord, as this is not how I normally handle difficult situations.

If there is one regret I have, it's that I didn't share why I felt at peace with the hospital staff.  All of the nurses who took care of me knew Reagan was on the PEDS floor.  I know by the conversations we had that I appeared both physically and mentally together.  I wasn't a mess trying to cope with the situation.  I knew why I had it together - The Lord's comfort allowed me to handle the situation the way I did.  However, I never talked with my nurses about why I was calm and felt comforted despite the situation.  While I hope to never have a child hospitalized again, I pray that if I'm faced with a situation in which my response is not the norm, I will share that the peace I have is because of my faith in Jesus Christ.

My other main thought from this time is how Ryan and I grew in our marriage.  We really had to communicate well and talk through our feelings and emotions.  In fact, on Thursday (the day I came home as well as Reagan's worst day), we talked on the phone and said we needed to be real with each other.  We both desired to be strong for one another while apart, but we didn't want to attempt to be strong and then not really share what was going on in our hearts. We needed to be real and honest, no matter what.  This was really helpful on Friday morning when I felt very alone and out of the loop because Ryan had his parents to talk with in the hospital room.  When I shared my true feelings, we were able to work through the issue and move forward.  What a blessing!  

These are my main reflections from what happened just over 3 weeks ago.  I know I've had more emotions and thoughts about it, but these are my two main takeaways.

  

Blessed Beyond Measure

I wanted to write this post a few days ago, but life with 3 kids under 3 doesn't always work the way I want it to go.  So, here I am writing this on Saturday instead of Wednesday.

My post about Reagan's hospital stay was long enough, so I wanted to dedicate a post to the immense blessing we received from both our families and our church family.

First, we are more than grateful to Andy and Katie than we can ever put into words.  They simply agreed to watch Reagan and Kyleigh while I was in the hospital with our newest addition.  Little did they know what they were getting into.  Their constant support, sacrifice, and prayer for our family during this time is something our family will never forget.  The number of hours Katie spent in the hosptial either with me, with Ryan and Reagan, or with Reagan alone in order to give Ryan relief is beyond countable.  We are so blessed to have such selfless friends who turned their week upside down in order to serve our family.

We are also grateful to Ryan's parents who made a last minute decision to fly out here after a difficult phone call with Ryan.  They made the last few days at the hospital bearable for Ryan.  He struggled a lot and was exhausted, but knowing he could leave the hospital for several hours at a time (without taking advantage of Katie) encouraged him to push through.

We are grateful to my mom for being here as a support for me during this time as well.  Although she offered to come out here earlier than planned, I encouraged her to keep the original plans, especially since we didn't know how serious Reagan's condition was until the day Mom arrived.  Having her at the house with me and helping me with Kyleigh and Rylan those first few days was a life saver, especially since Ryan was at the hosptial.  I don't know that I would have survived those first few days being alone most of the day.

Sue was another huge help to us during this time.  She came and visited me at the hospital the night Rylan was born, but after that, she made daily (I think) visits to Ryan and Reagan.  If nothing else, she was another person for Ryan to talk with during the long days in Reagan's hospital room.  She also made a very timely visit on the most difficult day to give Ryan an hour of relief at his breaking point.

Last, but certainly not least, our church family rallied around our family like I could have never imagined.  People were in constant in prayer for us.  Several people were receiving updates via Katie (and I was appreciative to Katie for fielding all those phone calls and texts) and checking in on us.  After I came home from the hospital, I received texts from people offering to bring food, go to the grocery store (thanks, KR), pick up diapers, anything that needed to get done, people were willing to do.  Again, I just felt so grateful to all these people (KL, KR, FJ, AG, JS, HF, CE, just to name a few; I'm sure I've missed someone and if I did, The Lord knows your willingness to serve our family) - their prayers and support helped us get through this time.  We also received cards from people wishing Reagan well.

Late Friday night into Saturday, we had a big snowstorm - probably 6" or so.  Ryan had shoveled the driveway so we could take Rylan to her newborn checkup.  When we came home, we noticed that the walkway AND both sidewalks had been shoveled.  When we walked into the house, I asked Mom if she went out to do it.  She said no, but that Katie came over and did it for us.  When I texted her, she told me she just did a little bit, but that Adam had done most of the work.  They didn't use their snowblowers, but actually shoveled it for us.  This was a HUGE blessing to Ryan, as it was one less thing on his plate to complete.

People have told me how a church family can be supportive during a difficult time.  Never could I have imagined what that means; it was always a hypothetical for me.  While I never want to experience this again, I now know how a church family supports its own.  Thank you, OSEFC!!!

A Very Unexpected Week

It was exactly 8 days ago when Ryan and I began the hardest week of our lives (to date).  I'm going to do my best to be as concise as possible in this post; however, there is a lot I want to capture, so it may (probably) be a long post.  Be aware!

Monday, 1/27/14:

Last night around 10p, Ryan and I heard a strange cough coming from Reagan's room.  We checked on him and after about 10 minutes, he seemed fine and went back to bed.  The pediatrician's office is located in the same building as my OB, so I stopped by and spoke with a nurse regarding both Reagan and Kyleigh (she has a cold) after my OB appointment.  The nurse suggested I bring the kids in so I made an appointment with Dr. B for 3:45p that afternoon.

Dr. B thought he had bronchialitis, but also mentioned it could have been croup. We tried an albuterol nebulizer treatment in the office.  It didn't seem to help much, but Dr. B gave Reagan and prescription for a Z-pack for kids as well as an inhaler with albuterol.

We dropped the kids off at Katie's house around 7:30p Monday night since we were leaving for the hosptial at 5:30a Tuesday morning.  I gave Katie all the instructions for Reagan's medication and we left.

Tuesday, 1/28/14:

I received a hesitant text message from Katie around 7a asking if we could talk for a moment.  When we spoke, she said Reagan had a really rough night (barely slept a few hours) and wondered if Dr. B said anything about calling back if Reagan wasn't better.  

At 9a, Katie called the office and Dr. B said to increase the inhaler puffs to 4x and then to call back in 4 hours to see how he was doing.  By 12:30p, he was still not getting any better and Katie decided to call back early.  The office told her to bring Reagan to the ER.

Katie brought Reagan to the ER around 1p.  Ryan left the Labor and Delivery room to meet Katie and provide the insurance information and to check on Reagan. The ER docs quickly gave Reagan racemic epinephrine to help his breathing.

At 2p, I told the nurses I was feeling a lot of pressure and when they checked me, I was at 10cm and ready to push.  They called down to the ER and asked Ryan to come back upstairs because it was time for delivery.  

After delivery, Ryan was touching base with Katie and heard a lot of screaming in the background.  She was supposed to call Ryan back after 5 minutes, but when she didn't, Ryan headed back down to the ER.  It turns out the nurses were trying unsuccessfully to administer an IV.  It took 4 attempts and Ryan walked in on the last and finally successful attempt.  While I was delivering, the nurses decided to admit Reagan to the PEDS floor because Reagan had another "breathing incident" and required another dose of racemic epi.

I moved from the L&D floor up to the Mother/Baby unit around 4p.  Ryan quickly met me upstairs to be with me in the room for a short time before leaving again to be with Reagan.  Around 5p, Katie stopped by for a quick visit.  It was during this visit, she told me Reagan had tested positive for RSV.  I had heard of this virus, but Katie said his condition was much worse than they originally thought. The docs said at this point Reagan was battling Croup and RSV.

Ryan came back to my room around 6p and was able to watch the bath in the nursery with me.  We had about 45 minutes to an hour together before Ryan left to spend the night with Reagan in his room.

I reflected on everything that happened during the day and all I could come to was, "This was not the day I expected."  Both Ryan and I were elated to have another child, but were saddened and worried by Reagan's condition.  

Wednesday, 1/29/14:

Reagan and Ryan both had a rough night.  The course of treatment was only blow by O2 via a respirator mask. The problem was Reagan's blood oxygen levels were in the low 90s when they should be in the upper 90s.  Reagan's levels, although low, were okay throughout the night without having direct oxygen.  At this point, he was not receiving anymore racemic epi treatments via the nebulizer.

At 10:30a, the doc decided Reagan was well enough to be released.  We were so thankful and happy, but honestly a little surprised, too.  Ryan signed papers and Reagan was released to Katie and she took him home.

Sometime around 5p, I spoke with Katie and asked how he was doing.  She, unfortunately said, she didn't think there was much improvement.  He barely napped that afternoon and was sounding terrible again.  I told her the office was open until 6:30p and to call to see if they wanted to see him again.  I felt terrible, but Katie drove Reagan back to the BG office.  He received another round of albuterol treatment through a nebulizer.  Reagan really wanted to talk to me, so Katie tried calling, but everytime I said something, Reagan lost it in tears and screaming.  Talk about breaking a mom's heart.  After the treatments, the doc sent Reagan home and she told Katie to look for heavy, labored breathing.  If that persisted for an hour, try giving him a hot bath and use a dehumidifier right next to his face.  

Andy noticed at 8:15p his breathing was very labored.  They tried the hot bath and it wasn't getting any better.  Reagan was distraught - he kept telling Andy he's ready to get out already and that he wanted his blanket in the tub.  The poor kid barely slept at all and was feeling terrible.  At 10p we decided to have Katie bring him back to the ER.  Things were not getting any better.

Ryan met Katie down in the ER around 10:30p.  Fortunately, the nurse knew our situation and instead of having Ryan and Reagan wait in the ER, they immediately admitted him to the PEDS floor - again.  A mere 12 hours and we were right back in the same place, only his condition was worse.

Thursday, 1/30/14:

The course of action was to have albuterol treatments via nebulizer every 4 hours throughout the night as well as the blow by oxygen.  Reagan's O2 levels continued to be in the low 90s and even the upper 80s, which was not good.  The blow by oxygen was enough to keep the alarm from going off, but no where near where they are supposed to be.

When he woke up, he ripped the IV out of his hand; but he was eating barely enough that the docs agreed to not put the IV back in.  However, the blow by oxygen was no longer sufficient, so the docs decided Reagan needed nose tubes put in.  This was all happening right around the time that I was being discharged from the Mother/Baby unit.  I was having a very difficult time leaving the hospital knowing I was leaving my husband and son behind.  It just didn't seem right to me.  I felt closer to him and the situation when I was at the hospital also.  Once I was discharged it seemed so much harder.

The day just seemed to get worse and worse.  Around 1:30p, Ryan called really upset.  This was emotionally so difficult and there was no bright lights in the near future.  Ryan had been with Reagan since 10:30p the night before and Ryan hadn't slept much at all.  All of the stress was getting to him and he brought up the idea of having his parents come out here should there be a need to have Reagan transferred to another hospital with a pediatric ICU.  This was a possibility if Reagan got to the point that the hospital could no longer treat him.  If that was the case, Ryan could not physically handle it alone; he needed support.  

Around 2p the doctor ordered a chest X-Ray.  As I had anticipated earlier in the day, Reagan now also had pneumonia along with the Croup and RSV.  My poor baby!  All I wanted to do was be with him, hug him, love him, and support him through this terrible time.  However, he was so contagious (nurses and doctors would wear gowns and gloves when entering his room), there was no chance I could visit him without potentially harming Rylan.  This was eating me up inside, but there was absolutely nothing I could do about it.

Just when Ryan was about at his breaking point (he hadn't eaten a meal all day), Sue arrived and gave Ryan about an hour of relief.  Praise The Lord, that timing was perfect. She was able to be with Ryan and Reagan during the chest X-Ray.

Reagan's O2 levels were not improving, even with the direct O2 coming in through the nose tubes. This was a big cause of concern.  Why wasn't he getting better, even with all the treatments?  Ryan called his parents after the pneumonia was confirmed and they told him they would be in Chicago at 12:30a Friday morning.  They were on their way to Sac airport already.  

I again felt terrible, but asked Katie if she would be willing to relieve Ryan for about 2 hours after she got off work that night.  Bless her heart, she willingly spent from 8:30p to 11p so Ryan could come home, take a shower, and spend a few minutes with me and his new daughter.

A side note here: we were trying to severly limit the number of people who were being exposed to both Reagan and Rylan.  The only two people who had seen both were Ryan and Katie.  The docs advised Ryan that any time he left Reagan and was coming to see Rylan, he needed to walk straight to the bathroom, scrub diligently in a hot shower, and place his clothes in a bag before coming anywhere near me or Rylan. That's how serious we needed to be about keeping Rylan safe.  The issue is that the RSV could live outside the human body for 8 hours.

Friday, 1/31/14:

Ron and Darcy arrived at the hospital around 7a.  I knew the next few hours were going to be tough because Ryan had people he would be talking with and processing the whole situation.  I already felt helpless and we didn't have much communication during this time.  It was very difficult for me, but Ryan and I talked and were able to work through and get on the same page again.

At 8a, a respiratory specialist stopped in to see Reagan.  She suggested changing the nebulizer treatments from albuterol to racemic epi.  Fortunately, the doc agreed and there was immediate improvement!  I started to feel encouraged.  Around 1:30p Ryan came home to spend a few hours with us, but there was a lot going on at the hospital.  

I received a call from Dr. B this morning.  She knew all that was happening to our family and just wanted to see how I was doing and wanted to check in. I thought that was so sweet of her.  However, at one point during our conversation, she said she'd be on call all weekend and would check on Reagan on Sunday.  This completely took the wind out of my sails.  We had been told Reagan would probably be released on Saturday, so hearing this was really tough.  

At 3p, Reagan got out of bed for the first time and walked the halls of the PEDS floor with an oxygen tank.  It was great for him to get out, but when he arrived back in his room, his levels had dropped too low again. 

A few hours later, the doc dropped the O2 dosage to 2L per minute and his levels hovered around 90, which is still too lDarcy offered to stay at the hospital with Reagan so Ryan could come home and spend the night here.  He was hoping for a good nights rest, but unfortunately, Rylan had a rough night, so Ryan had another night of fractured sleep :(

Saturday, 2/1/14:

Ryan and I got an early text from Darcy stating Reagan had his best night yet.  Again, we felt very encouraged.  Ryan stayed home with me all morning so he could go to Rylan's checkup with Dr. B at 10:45a.

At 8a his O2 dosage was reduced from 2L to 1.5L and then an hour later it was dropped again to 1L per minute.  This was a great sign of improvement!!  And at 10a, they walked the halls again.  However, this time, Reagan walked without the O2 tank and when he came back to the room, his blood oxygen was 97!  Praise The Lord, this was great!

Ryaln's doing just fine, so we ended up talking about Reagan's situation for most of the time we were together.  We told her our disappointment that Reagan was discharged so quickly.  She also told us during this visit that the docs were seriously considering transferring Reagan to a PEDS ICU on Thursday night because his O2 levels were so low (they had to increase the dosage to 4L per minute, the highes dosage he received).  Ryan said he thought something was going on, but no one told him anything.  Fortunately, that didn't happen, but it was still unsettling to hear.

Ryan headed back to the hospital after Rylan's appointment.  I was sad to have him leave because it was great to actually be with my husband again.  However, I knew he needed to get back.  Around 3:30p, the docs turned off the O2 completely!  Again, another good sign.

At 5:15p, it had been 3 hours since his last racemic epi treatment and the O2 had been turned off for 2 hours and Reagan's O2 levels were at 98.  This is where he needed to be.  We were feeling very encouraged.  Although I had been hopeful for a Saturday discharge, I knew it wasn't going to happen. Reagan needed to be off the O2 for longer and the night time is when his levels dropped the most.  I knew they'd want to observe him overnight.

Even though I wanted him home, it was great to "see" (via FaceTime, pictures, and videos) that he was finally starting to feel better.  Darcy stayed with Reagan again, so Ryan was home with me again Saturday night.

Sunday, 2/2/14:

When Ryan arrived at the hospital around 6:30a, he texted me and said Reagan was still off the O2 - he didn't need any O2 last night!  Great news, since this was one requirement for getting discharged.  He did have an racemic epi nebulizer treatment at 8a.  The docs said they would wait until 12p to see if he needed another treatment. At this point, they were officially moving the neb treatments to every 4 hours.  You could tell he was feeling better because his appetite grew back to normal and he just seemed to be himself.

Around 9:45a, he was doing so well, the docs decided to take his nose tubes out.  Reagan was so thrilled!

When the 12p hour arrived, both Ryan and I felt very anxious.  There was a chance he didn't need a treatment at 12p, but could have needed one later in the afternoon.  They said if any neb treatments were needed after 12p, there was a very minimal chance he would be discharged that afternoon.  However, if he didn't need any treatments there was a good chance he could be discharged.

12p came and went.  Finally, around 2p, Ryan stopped one of the nurses and asked what was going on.  They said the doc would come back around dinner time.  However, a few minutes later the doc walked in and she said there was a chance they would discharge after dinner.  Ryan kind of pushed back and asked why wait that long when the last treatment he received was at 8a.  Would being discharged at 4p really be any different than being discharged at 6p?  The doc called Dr B and they both agreed being discharged around 4:30p would be okay.

At 3:45p, I received the best text message of the entire week, "4:30p is a go.  Will be home around 5:15p."  REAGAN WAS COMING HOME!!!!!!!!

At 5p, I saw the van pull into the driveway.  Ryan carried Reagan inside.  As soon as he saw me, he gave me the biggest, tightest hug I have ever received and he told me he loved me.  It was a moment I will never forget.

Reagan and Kyleigh - January 2014

Notes from January 2014:

Reagan:

-fireman Sam is his favorite movie to watch

-enjoys helping me around the house; making my bed, feeding the cats 

-Considerably better at notifying me if he need stomped, not so much with poop (prefers to poop in his underwear)

-Needs to have his voice heard (if I cut him off, he says my name until he can say what he wants to say)

- Says, "I'll fix it, Mom" after his toys crash to the ground

-Every night when I leave his room, he'll tell me what he wants to have for breakfast the next morning and that he'll get to watch a movie

-Has most of the Lord's Prayer memorized

Kyleigh:

-Says "ya" instead of "yes" to most things

-Able to climb onto the couches

-Says "bleo" for belly button

-Thinks everything is hot (food or not) and blows on it if it is food

-Says "Hi, Daddy" or "Hi, kitty" repeatedly

-Starting to put two words together or phrases "Hi, Daddy" or "Reagan's puzzle"

-Navigates the stairs by walking straight down

-Obsessed with 3 things: Daddy's car, flushing the toilet, and Daddy's toothbrush

-Runs away after pooping and when I go to change her, she stomps her feet and says "no, no"

-Claps for herself when she puts toys away or does something right

-Says, "yay, Kyleigh" when she completes a puzzle

-Loves to dance

-Getting really good at cleaning the toys up