The croup and other happenings...

This is just a small update to follow up on the croup. Elijah is doing much, much better. His cough is almost gone and he is returning to his happy little self. If anything positive came out of all of this it would be that during our brief stint at CHLA he was monitored constantly. His pulse ox was in the mid 80's just like it should have been. During his last several cardiologist visits his numbers were in the 70's. This was causing some concern, although they only measured him for a few minutes at a time.

Noah was sick as well and is still coughing, but I have a gut feeling he is a little asthmatic. I'm going to give him a few more days and if it doesn't improve I will take him to the doctor.

Our niece, who has been living with us for the past few months and helping take care of Elijah, moved out last week. I am very excited for her and her future. She has an internship at a hospital to be a surgical tech. She is so very talented and will do so well!  Our house feels oddly quiet now with her gone and I realized that this is our opportunity to figure out who we are as family of four, instead of three. We have yet to do that.  

Once she moved out, I realized that this is the first time in over a year that our little family has lived in our house alone for any significant period of time. We have been incredibly blessed to have such giving family members who love our babies and are willing to sacrifice their time to care for them. These people have been integral to both Elijah’s physical health, as well as my mental health. A parent at work asked me about Elijah today and expressed the frustration I must feel and the "why me" attitude I must experience. I told her that I suppose it was better that I have a child with severe medical needs rather than someone else, not because I am super woman, but because I have the family and the friends and the general support structure to make this work and to make it okay. I will be forevery grateful to everyone who has stood by our side and continues to support us through this journey.

The Croup

Ugh. Our poor little guy has the croup. He started coughing on Saturday, but he was still his happy little self. He was a bit grumpy after his second nap, but I attributed that to teething. We put him down for the night like we always do and went to bed ourselves. Noah has had a cough for a week now and we were more worried about him and if he would be able to sleep. At 2am on Sunday, he was coughing a lot. I went in his room to check on him and to give him a little medicine and I instantly felt like something was wrong. I pick Elijah up out of his crib and realized that his breathing was loud... very, very loud (a strider). And very, very strained. My heart dropped. I took him to Dion and he instantly said we need to take him to the ER. Children's Hospital ER. Now. I felt like I was going to puke. With all that Elijah has gone through, nothing has been urgent while at home. Nothing has been scary. Those moments have always happened while we were in the hospital, surrounded by doctors and nurses. This was just us.

We started calling around to see if any family members could come over and stay with Noah. Both of us wanted to go to the ER with Elijah. Shanti, our niece, came over and we headed to CHLA. We have a hospital right around the corner from us, but we knew we needed to go to CHLA. Once we got to the ER they saw us immediately and got us into a room. I was certain we were going to be admitted. However, a nurse came into the room and checked his lungs and said that they sounded clear. I could feel the weight on my shoulders start to lift, just a little. Then a doctor came in and checked him. Elijah's lungs were clear, but the doctor could hear congestion and the strider he had was still very loud. The doctor said that Elijah had the croup. He gave Elijah an oral steroid and epi in the nebulizer. Over the next two hours, Elijah began to breath much easier and his mood improved drastically. By 7am we were told that we could go home. What a relief!

Elijah has slept a great deal today and isn't quite himself yet. Hopefully tonight will go smoothly, but I am trying to mentally prepare myself for a rough ride. It just breaks my heart to see him so miserable.

Spring Break & Cardio Appt

Last week was spring break for LAUSD. This meant an entire week, and a day, off of work! Noah also had spring break. Dion went to Las Vegas the first Sunday-Wednesday and the boys and I joined him on Wednesday. To be honest, I was a little nervous to be on my own with the boys for three nights and over three days. Noah is in his terrible threes (whoever said it was terrible twos was wrong) and Elijah can be fussy at times and hadn't been sleeping through the night for the past several months.

For those of you who know me, you know I can be a bit of a control freak. I find myself getting consumed with the "to do" of daily life and I don't enjoy the moments. I have a checklist of things that need to be done> lunches made- check, dinner- check, medicine given- check, bath- check, pjs-check... You get the idea. When Dion left on Sunday, I just decided to let go. To let things land where they may and not stress about it. If the kids didn't go to bed on time, it would not be the end of the world. If Noah's dinner was more convenient than healthy, so be it. I decided to relax and try to enjoy the break and you know what?  I did. I enjoyed the kids. I had fun. Things stopped being work, and became fun. Plain and simple fun. It was fantastic. We went on walks and got frozen yogurt. We went to the beach and had lunch and Noah rode his bike. We had fun.

On Wednesday, we took the short flight to Las Vegas. Noah has been on several flights before but this was the first time he really realized what was happening. He was so excited and did so well. Elijah loved being out and about and handled the flight really well. We took my sister with us as a kind of built in babysitter and she was incredibly helpful. I have always been one of those people who totally judged others who took their kids to Vegas. I always wondered what on earth people did with kids in Vegas. Well, I found out! Noah went to a shark tank at Mandalay Bay, we spent time at the pool and the playground (at the timeshare where we stayed), and of course meals were always an occasion. Friends of ours were also there with their kids and it was great to be away from daily life and relaxing with friends. Both boys adjusted with ease to their new surroundings and Elijah even slept through the night!

Lyndsay stayed with the boys at night and Dion and I were able to sneak away for a good meal and some quality time. There are times, among all the craziness of daily living, that I miss Dion even if he is in the same room as me. I miss those quiet times with just the two of us. It makes me grateful for little date nights and small get-aways. 

The boys did great with the drive home and enjoyed a stop at good ol' Charlie Browns. It brought back memories going back there. I remember going there as a kid myself. We all got shakes (even Elijah got a little ice cream) and wandered the store.This was our first family vacation and it could not have gone better.

On a completely unrelated topic, Elijah went to the cardiologist today. He is doing well and we don't have to go back for two months! That is the longest we have ever gone between appointments. They think that they will push his next cath off until next January. Dr. Sklansky is still a little concerned about the low function of his ventricle and has upped his Enalipril dosage. However, his lung function is looking even better and his lung seems to be expanding. Poor Dion had to deal with a very unhappy baby during the echo and appointment. Elijah didn't want anyone touching him except his daddy and this created a very unhappy little guy. I think he may have a little "white coat syndrome" from all of the procedures he has had done. Hopefully the two months between appointments will help.

Elijah is One

I've been trying to  figure out what I wanted to write for this post for over a week and I have yet to come up with anything elegant and fitting. So I gave up and decided to just write.

Elijah turned one last wed. Can you believe it? Elijah is one. It was a little less than a year ago when Dr. Devore told us that our son had a condition called HLHS. I was 12 weeks pregnant at the time. I just sat there shocked. Devastated. Scared. So so so scared. I think I have been scared every day since. But last Wednesday I wasn't scared. I wasn't worried. I wasn't trying to figure out what comes next or plan for the next big hurtle. Last Wednesday I was happy. I let Elijah eat whatever the heck he wanted (which is sooooo unlike me if you weren't already aware).  I let the boys stay up a little late. I marveled at what our family has become and of the joy this little boy has brought to our lives. We have struggled this year. We have had a great deal of heartache and tears this year.  But nothing outweighs the joy that a smile from Elijah brings my heart.

It was a little less than a year ago when Dion and I were given a choice. We had a decision to make that no one should have to face. We decided that we wanted to give our little Elijah a fighting chance. I look at him and I am so grateful we made that choice. He has endured what no person, let alone baby, should every have to go through. This one year old has had two open heart surgeries, a lung plication, three caths, and a ridiculous number of xrays and echos. He has been hospitalized for months and yet here he sits, playing with his brother acting just like any other one year old boy.  Elijah cruises, crawls, says dadada, mimics you, kisses when you ask, waves goodbye, and loves his brother like no other.  I'm not going to pretend that he is like any other one year old, but I am going to revel in this moment for a little longer. There is so much uncertainty in the future; I'm going to sit with the certainty of this moment for a bit longer.

Cardio Appt

Elijah had his cardio appointment today. They ran all the usual tests and had an exam. His diaphragm seems to be re-engaging but is still not fully functioning. His heart is functioning better but the cardiologist thinks it's time to put him on Enalapril. This should help improve the function even more. I'm not sure how I feel about this. I, of course, want to give him whatever he needs. However, I hate the idea of yet another medicine. We already give him two meds each and every day and I would rather not add another one. When you research the drug, it is used for heart failure. Ugh. That just sounds so bad. I realize he has probably been in "heart failure" for a while... maybe I have been in denial but I sure do hate seeing those words in writing.

They were happy with his growth. He isn't on the growth chart yet, but he is growing on his curve and slowly catching up. Dr. Sklansky would like to schedule another cath in a few months (after flu season is done) in order to plug the rest of the collateral arteries in his lungs. The blood flow through his PA is better, but still competing with the collateral arteries. The little guy's pulse ox was a bit lower than it had been at the last visit. Although not alarming, it is something that the doctor would like to keep on eye on. We go back in six weeks to do another work up. All in all, it was a positive visit.  Elijah seems to be doing well and the cardiologist was pleased.

Noah is doing better. It seems the new antibiotic is working well. Both boys have been sleeping much, much better since we moved them into separate rooms.  Before we had kids, I never realized just how vital sleep was to a person.  Lack of sleep can affect every aspect of a person's life.  I am hoping that with more sleep, Elijah will be able to grow more. Only time will tell!

Rough Week

Wow... last week was one of our toughest yet. Elijah has been doing well, but Noah has been struggling. Sunday night, after a great weekend, Noah had a horrible time going to sleep. We chalked it up to a cranky three year old. He woke up Elijah several times before 9pm. By 10:30pm, Noah was screaming in his bed. Dion brought him to our bed. If you know us well, you know that we are staunchly against our kids sleeping in our bed. I have no issue with other families that practice co-sleeping, it is just not something our family wants to do. Well, Sunday night we broke our own rule for the first time. Noah was a mess. He was screaming, trying to sleep, but screaming some more. It was awful. I didn't know what the problem was or how to fix it. He couldn't communicate with me what was bothering him. The screaming/sleeping lasted about 5hrs before exhaustion kicked in and he fell asleep. Then Elijah decided to get up for the day at 4:30am. And Noah was back up.

Dion and I couldn't figure out what was wrong with him. By morning he seemed ok except he had a cough. We thought that perhaps it could be behavioral, but the screaming seemed to be associated with pain. I decided to keep him home and take him to the doctor to rule out illness. I am so glad I did. He had a double ear infection and a respiratory infection. Poor kid. His doctor put him on antibiotics and sent us on our way.

Monday night, Elijah decided to get up at midnight and not go back to sleep until 3am. Because the boys share a room, we can't just leave him in there to figure it out and put himself to sleep because the crying will wake up Noah. Ugh. Let me tell you that getting up at 5am with both boys only to have to go to work after getting 3 hours of sleep for several nights in a row is torture. Torture. Tuesday night the boys went to sleep without a problem but both were up by 4:30am. When Elijah wakes up for a bottle, he wakes up Noah. Neither will go back to sleep. Wednesday night, Noah woke up screaming several times throughout the night. I couldn't figure out what was wrong with him. He would go back to sleep, only to wake up an hour later. They were both up for the morning by 4:30. I'm sorry, but I consider 4:30am still night time. I sure wish my kids would get that memo.

Thursday night was Valentine's Day. Our niece offered to babysit so that Dion and I could go to dinner. We got the kids all ready for bed and put Elijah down for the night. Noah was in his PJs and ready to go. Dion and I went and had a nice dinner. It was nice to relax and have a meal together and get to focus on one another.

When we got home, we walked in to find both boys awake and crying on the couch. Our niece was trying to calm them but they were not happy. I got both boys back to bed only to have Noah wake up screaming again. We had a repeat of Sunday night. Screaming for hours mixed with a little sleeping. Exhaustion... pure and simple. We gave him some motrin and that seemed to help a little. By 3am he seemed to finally sleep. By now Dion and I were beyond ourselves. Dion agreed to take Noah back to the doctor.  He took Noah back in only to find out that Noah's ears were much, much worse. He is now on stronger antibiotics. Poor kid.

We also decided that it was time to separate the boys. If you are at all familiar with our house, you know that we have three bedrooms, but one is set up as an office/guest room and is far from the rest of the rooms. We didn't want either of our kids in that room, but desperate times call for desperate measures. Friday night we moved Elijah's crib into the guest room. Let me tell you, that is the best thing we have done in a long time. We are finally getting some sleep! Elijah has slept through the night twice since making the move. He is still up for the day by 6:30am but I will take that over 4:30am any day.

The moral of this story? I have no clue. I'm too exhausted to come up with a moral...

The New Normal

It's early Sunday morning. The boys are running around, playing and having fun. I'm sitting here with my coffee and it dawns on me... this is our new normal. And you know what? It's quite good. Elijah is as active as ever. He is sleeping better, only getting up once a night. He is growing, although slowly. He is still not on the growth chart but he is growing on a curve. I am hoping he will be 17lbs by the time he is one (next month!), but he will most likely only be 16lbs. I can't believe he will be one next month. This year has gone by in such a blur. Sometimes I look at him and I still see my little newborn in the hospital with his chest open. He has come so, so far in such a short time.  Noah is thriving. He is in preschool and doing so well. He has been through so many changes this year and he has been forced to adjust again and again. And yet here he is, loving his brother and his family. I marvel at him every day.

This week is CHD awareness week. It breaks my heart to know that so many people have to endure what we have gone through, and in some instances, even worse. My heart goes out to those families. I encourage you take a moment during your busy week to remember those who now have heart angels and those who continue to fight. Congenital Heart Defects are more common than many people realize. Help us spread awareness.