Lessons from my two-year-old

Parenting is an interesting journey. One I think I'm not doing so hot at. But the lessons that I learn each day are so immense that I wouldn't trade this for the world. I just hope I can keep growing and changing and learning these lessons so that maybe one day I am the mommy that my kids need.

My lesson for today... My Austin was running around singing "I'm happy, so very happy, I've got the love of Jesus in my heart." And he is so sincere. Of course, he doesn't fully understand these concepts yet. But he is trying. And he is asking questions.

And I thought about myself, how am I showing that love to him? Probably not in the greatest ways. Yesterday was a difficult day for me. I think it hit me really hard that my precious baby has something wrong with his heart. I was all fine and acting strong the day we found out, but yesterday it about overwhelmed me. And I am frustrated with my job. I am so thankful to be able to work at home, but sometimes it is hard to never be told thank you. I feel like we are always in trouble and nobody cares that 99.5% of the time, we are doing things right. And I am tired and not feeling well - so all that to say, I wasn't in the best of moods. Austin is definitely in the stage of his life where he is finding out his personality - and being argumentative and not always obeying or even trying to obey.

So I was frustrated and angry. And I didn't show Jesus love to him. And I want to. I want my kids to see Jesus love, and mercy, and justice in me. That doesn't mean that I don't want them to obey, but it does mean that I need to work on my attitude and what they see in me - regardless of the circumstances.

I think that sometimes two year olds have a better view of Jesus than we do. Honestly.

And they have a stronger faith. Austin completely trusts me to take care of all of his needs. He knows that I will feed him, clothe him, love him... Why can't I trust my Heavenly Father with these things? He can heal my baby. He can provide the money we need. He can ease the hurts in my heart. If I let Him.

Lessons from a two year old are sometimes harder lessons for me to learn than any others. But I am thankful to have the opportunity to learn them. I know it doesn't mean I won't mess up ever again in my parenting, I will forever. But I hope that some things get better with the lessons I am learning.

Doctor update

We went to Nemours today for our rheumatology and cardiology follow up for our baby. (So glad to be at Nemours among friends - 4 years of working there makes for solid connections when you are in need. I love them all!).

We did find out that the baby's arteries are dilated in his heart, which we knew could happen. I was praying that it wouldn't happen, but it has. He won't get to stop the aspirin for at least four more weeks when they will do another test on his heart to find out how his arteries look then. The goal is that his body will heal itself in that time with the help of the aspirin. If it doesn't, we may be looking at longer term heart issues for him.

We also got him more medicine for his poor tummy. The aspirin has done a number on it, and he still is vomiting. So we are going to try a stronger medicine to try to heal up his stomach lining.

They also checked his blood work again, although I haven't heard results on that yet.

I am sad that he has any heart involvement from this disease; however, I know my God is bigger than this and He can heal our baby is He chooses. And if not, He will give us grace to make it through this storm. It is scary to me for some reason to hear heart problem. A lot of other things aren't as scary to me, but the heart seems like a big deal for some reason. But I know that these doctors are the best and will do everything possible to make sure our baby is as healthy as he was prior to this Kawasaki diagnosis.

We are, thankfully, allowed to begin to take him places, we just can't have him in what they call a "daycare" environment which includes church nursery. We don't want him to contract another disease on top of this one. But we can take him to the store if we need to which frees me up a lot. I am missing going to church as a family, but it is a small sacrifice on the road to having a healthy baby once again.

I'm thankful that we have a God who can heal even the most horrible diseases!

Better Week

We have a had a fairly quiet week, thankfully, compared to last week. Our baby hasn't had the easiest of health weeks, but we are beginning to see better days I think.

He hadn't eaten anything really - a few grapes or banana pieces is the extent of it - for 9 days. And he had started to vomit any food he tried to eat. I called the doctor and we started him on Zantac to protect his stomach from the aspirin he has to be on for his Kawasaki. That seems to have helped. He has eaten normal meals for about a day now. I think his body is starving though because he is having a hard time sleeping because he is hungry. So we are just obliging his tummy and feeding him when he feels able to eat for now.

We did see our doctor on Thursday. She said he is sounding fine. She isn't sure how long he will be on the aspirin, that will be up to cardiology and the echocardiogram findings when we see them on Tuesday, although it will probably be at least 4 weeks total maybe more. She did say that because of the aspirin we have to try to keep him away from people as much as possible - i.e. no nursery, no parks, no walmart or grocery stores. Basically, we have to stay home. If he would get another virus, it could complicate the picture of what is going on with the Kawasaki. And if he would get the flu, he could get Reyes' syndrome from the aspirin which could cause brain and liver damage. So, we are staying home.

I admit to going a bit stir crazy. I am a get out of the house person. I like to take the kids to do fun things. And I am sad that we can't even really see our friends as much. However, I am happy to do anything that will keep our precious baby healthy.

Tuesday, we see Rheumatology and Cardiology at Nemours. It is funny to be going there since I worked there for so long. I have never been on the patient end of things. Interesting change of scenery I am sure.

The baby does have a cold right now, but it should be ok as long as he doesn't get a fever. Austin has the same cold. We asked the doctor how scary the cold was and she said it should be just like a normal cold - it's major viruses and the flu that we are concerned about.

Austin is doing fine except for his cold. He really was not wanting us to take the baby to the doctor because the last time that meant a hospital stay. This time we were able to assure him that it was just a check up and we could go home like normal. Austin has a very tender heart. He takes everything seriously and is really starting to apply some of the lessons we are trying to teach him.

This has been a scary road we have walked. But the Lord has brought us through and is really teaching us things during this time. We are thankful for the prayer support we are receiving through it all.

Our lives currently

It's funny how one word can rule your life - right now it is Kawasaki... I am checking constantly for fevers, dealing with peeling lips, waiting for the peeling to start on the hands and feet, figuring out how to crush up baby aspirin and put it in liquid, dealing with spit up from the stomach pain and the aspirin, figuring out how to get some, any nutrition into my baby who doesn't want food... This is my life right now.

And I am tired, so very tired. I'm finding myself a bit discouraged right now. I think it is from being sick myself and being so exhausted. Apparently it happens sometimes when you are coming down off a long adrenaline high, which I definitely am.

I think really the baby is doing pretty well. He hasn't had a fever yet, a couple of close calls, but no fever. He doesn't fight me on his medicine. He is quite tired as well and a bit fussy because of it. I think he is actually very hungry. He hasn't eaten much since Wednesday. I am giving him Kid's Boost to get nutrients into him, and he is drinking milk of course. He has eaten a couple bananas and some grapes. So I saw that as a victory!

We have a follow up appointment with our family doctor on Thursday and then the visit with the rheumatologist early next Tuesday morning and then the echocardiogram and cardiologist visit afterwards. I'm thankful that we have somewhere like Nemours to take him to during this time. I am absolutely certain that they will take immensely good care of him and will tell us what to expect in the days ahead.

I have kept him home away from people since we got home from the hospital. We don't want to mask symptoms by adding another illness. I am a bit concerned because he is on the aspirin for him to get anything else because then he could get Reyes syndrome from the aspirin which could cause brain and liver damage.

It feels like a lot to worry about. I know that God is in control of our son. And I am thankful for that. I will be glad to know that our baby is healthy and that this is over. And I will be glad to feel caught up on sleep and well myself. I am currently a few days into antibiotics myself.

We still have another few weeks to wait until we find out his permanent status. I wish it was sooner, but I have trust God in all of that too.

Big Day - Pray Please

Tomorrow is a huge day in our quest to become a forever family of four! Please pray for us that everything will go smoothly and that a decision will be made and then that it will not be contested or overturned. We have been absolutely blessed with this precious baby! He has had two really good nights of close to 14 hours of sleep each night. He still isn't eating much, but we are giving him Kids' Boost to get some nutrients in him along with some pedialyte. We are thankful that he is home and that we are all together. Austin is still a bit scared because he just doesn't understand. But we are all re-adjusting. I am home from church this morning because we can't risk the baby getting anything else right now. It could make him far sicker than he was. So we will be home, out of crowds for a while. But that is a very small sacrifice in light of how sick he could have been and the horrible things that could have happened. I have been so touched with the reminder that God has all of this in His control. He already knew this would happen. He has given strength and healing. I don't know how you could go through something like this without knowing God and relying in Him knowing He has our best in mind. Please do pray for tomorrow that things turn out well and that this part of the journey will be over.

Baby Hospital Story

This week has gone nothing like I anticipated. Last week, we were at the ER and then the doctor's office and almost admitted because the baby was so sick with a fever. It had gone from a sinus infection to probably a virus. And he got basically better. He still had fever, but we could get him to drink and produce wet diapers, so he never got admitted.

On Wednesday, I took him to the doctor for what was supposed to be a well-baby visit. But the night before, he had spike another temperature. So the doctor turned our visit to a sick visit. I didn't think a lot about it until we started discussing his symptoms and her demeanor changed. She told me that there was a disease called Kawasaki disease that came when children had a fever for more than five days. But there were a lot of other symptoms that we hadn't seen.

The strange thing, probably of God to help me not overreact, was that I Had seen a lot of this during my days of working at Nemours Children's Clinic. So I knew exactly what it was, how it was treated, ect.

The doctor sent us to the lab for blood work and then allowed us to go home. She said she would call if the labs were abnormal and then we would have to be admitted. I honestly thought that there wouldn't be an issue and that we would be home and going about business as usual.

Then... the phone rang. It was the doctor, his labs were abnormal. Not all of them, but enough. So I packed up and we went to the hospital. The treatment for this disease is an IV medicine called IVIG. It runs for twelve hours. And they have to intensely monitor the child during that time.

We got to the hospital at 7:30 pm. Finally by 10:30 they had put his IV in (twice because they messed up the first one - not easy on mommy or baby). Then by about 11 pm he started his medicine. He slept fairly well that night because they had pre-medicated with Benadryl. I, on the other hand, slept not at all because they came in so much. The medicine could cause high blood pressure so they had to be very, very careful.

Thankfully, that IV was done about 11 in the morning. And he had an echocardiogram of his heart because the premise of this disease is that it dilates the vessel in the body and can cause aneurysms which could lead to cardiac arrest, blood clots, ect. We saw the cardiologist, one of my personal favorites who I worked with again at Nemours. She was very reassuring and even hugged me, which I needed by that point. And we also saw the rheumatologist who told me that baby would have to be watched for a few days in the hospital because of the possibility of more fevers, in which case he would need more IV meds.

Baby really was feeling fairly well throughout this time, until Thursday night. He was drinking a bottle and started projectile vomiting. It was horrible. I have never seen anything like it. And he was inconsolable. We actually had another episode in the night of inconsolability about 2 am. It turns out that they were giving him 650 - 700 milligrams of aspirin - to thin his blood to stop the blood clots and it was eating away his stomach lining, causing the vomiting and pain. It was a horrible night for me, seeing him so sick and hurting so badly.

On Friday, they took more blood to check his counts. And unfortunately, they weren't much better. The doctor said we would have to continue to be monitored. And because of the vomiting we did a strict count of his liquids and they measured the weight of his diapers.

I was able to come home for a while on Friday while Daniel stayed with the baby. When I got back, I was prepared to stay another night, but the doctor called me and said that they had decided to release us. She said they had decided the risk of him picking up more germs was higher than the benefits of staying.

I have never been so relieved to not have to spend the night! We were all exhausted. And Austin was so confused as to why we weren't home, what was wrong with brother, ect. He needed us home. I have been sick myself with a high fever this whole time, so I was totally wiped out physically, emotionally, ect. Daniel has been holding us all together while sick himself, so he was beyond tired as well. We all just needed to be together!

So last night, about 8:30, we brought baby home! We do have to continue with a low dose baby aspirin for a few weeks, we have to watch his temperature, we can't take him anywhere to risk illness, and he will be monitored with more heart tests for a few weeks to make sure there are no residual issues.

But all in all, we are home together, the baby is going to be fine in a few weeks, we all slept well over twelve hours last night, we have found that we have a huge support system in friends here. And most of all, we are thankful to have a God who heals and who cares for even our emotional needs!

Thank you to everyone who has prayed for us. Please don't stop as we continue to pray for baby's recovery. I am coming off the adrenaline rush and am quite tired and feeling rough too. But we are home, and we are fine! I am thankful!

Still Very Sick

Things looked up yesterday in the illness department in our family. And this morning things took another scary turn. Baby didn't wake up. I went in to wake him up and he just looked at me and fell asleep again. To the doctor we went... More blood work, a nose swab, more motrin for a 104 almost fever.

Now the doctor is thinking viral infection. She said as long as we could make sure he would drink we wouldn't have to have him admitted. So I keep waking him up and forcing the bottle in his mouth. I even went back to a bottle because it is a comfort thing for him, he hasn't used one in a month or so.

So please pray for us that we can keep his fluid levels up high enough and the fever down enough that he won't have to go to the hospital. This is apparently quite contagious, so please also pray that Austin stays healthy and that Daniel and I stay well to take care of our boys.

My mom is coming in tomorrow. I am so thankful for that right about now. I'm looking forward to the extra help. I'm feeling quite tired after the sleepless nights associated with making sure your baby is ok.

We appreciate all the prayer support and support our friends and family have given us through this. It has been quite a scary time for us. Love to you all!

Hospital Encounter with Our Precious Baby Boy

Yesterday was hands down one of the scariest days I have ever had as a mom. The night before which was Saturday night, our baby had a fever of about 103.6. We were able to get it down and he was playing again. We kept him in our room for a while but ended up putting him back in his room to sleep.

By 10 the next morning, I went and got him up, and he wouldn't wake up. He would look at me and fall right back asleep. I ended up calling the Urgent Care who said to take him to the ER, the ER who said not to bring him, and ultimately his doctor's office on-call service who said to take him because he probably had croup.

I got ready to go and got to the ER. There were millions of people there. The intake person didn't even ask me what was wrong with him, just gave me a number. A nurse walked through and I caught her and showed her that he just wouldn't wake up. She triaged us and got us into a room right away. The resident came in minutes after and was extremely concerned about his lethargy. He never woke up while she was examining him. She told me she was afraid he had a blood infection or something worse.

Those words are not one that a mommy with medical knowledge wants to hear. They sent us for x-rays immediately. And then they moved us to the room closest to the nurses station. They came in and put an IV in him and he never woke up. It was so scary. I just wanted him to cry or something.

They gave us Pediasure to try to get something in his tummy and that perked him up for a few minutes. They did multiple other tests, and for those he actually cried. A sound so welcome to our ears. (Daniel had joined me by this time. We are so thankful to our friends who kept Austin for such long hours for us). I hated it that my baby was being poked and prodded so much, but the fact that he responded made me feel so much better.

And then the trend turned again. We could keep him awake for about 20 minutes and he would sleep for up to another hour. It had gotten to the point that all of his test results had come back normal except for a neck x-ray which showed croup even though he wasn't coughing and his oxygen levels were fine.

The next step was supposed to be a lumbar puncture. But I was concerned about that. We finally saw the attending doctor who said he just didn't have the signs of meningitis. And he listened to our history again and decided that what baby probably had was a sinus infection and the fever was just making him non-responsive.

So after 8 LONG hours in the hospital they sent us home with signs to watch for, orders to keep the motrin and tylenol going because he would sleep a lot when the fever was up, and an antibiotic for ten days.

A sinus infection, what a relief. They had been talking about admitting us for days. And now we could go home with just an antibiotic. Thank you Lord!

We made it home and got him tucked into bed in our room (we had just bought a portable crib, another blessing), and he slept all night. His fever feels like it is going up again. So we just did motrin. But he is playing a bit, has eaten a little, and just stops for little rest breaks a lot.

There is nothing scarier than basically being told that if they don't figure out what is wrong your baby could die. I felt so lost. But we called our family and some close friends and we felt people praying. We are so thankful that God worked it out for the attending to come in and see us and realize what was wrong, that it wasn't life threatening, but just how his body was responding to the fever.

It is true that in your darkest times, God carries you. He did. We couldn't have managed without His upholding Hand. And we are so thankful for our family and friends who loved us so much to pray for us and ask for prayer for us from others even those who didn't know us.

We aren't out of the woods quite yet, but we are definitely so much better than we were yesterday.