Dear God...

Dear God...

You must know that I like to plan, that I like to feel organized and somewhat prepared for things. And so you must know how hard all of this heart stuff with Christopher is for me. I can't plan, I can't even remotely speculate on what our summer/fall will be like. I call the cardiology nurses and I talk to the doctors and they can't give me more than a 50/50 odd of surgery or not... and even that odd is a guess. It may close, it may not.... he may need surgery, he may not...

You know that I want to stay home with all my heart, and I'm thankful that you provided a full time job for Tom... we needed that... he needed that. Help us learn to live within our means, and if that means living without certain pleasures help us to see that. I'm struggling with sending my baby to someone else, I can hardly handle the thought of knowing that someone else will be caring for Christopher... feeding him when he is hungry (something that has ALWAYS been my job) comforting him when he is sad. Will he miss me? Will he cry for me? It breaks my heart Lord and I cry when I think about it. I don't want my children to see someone else as mommy... that's my job... thats what I've always wanted to be...

I feel a little lost Lord... I'm trying so hard to trust in you, trust in your plan for us. I know that you are here with us through all of this and that you don't mind my silly emotions. Please give me some peace in all of this, help us to choose the right things for our family.

Love,
Me

Two days & Two Nights

Well I haven't been around much. Life has been ... well interesting. We went from this...

To this...

When I came home Tuesday afternoon I noticed that Kiley was starting to feel a little warm. I checked her left foot (the foot she complained hurt) and didn't see a thing. So we watched a cartoon with her and then noticed her right foot, specifically her big toe had a nasty look to it. It was swollen and purple and angry looking with a large streak running up her ankle. I knew something was off.

We sat in the waiting room at the clinic for 45 minutes, and another 15 in the exam room. By the time they came in she was starting to look worse with another streak and the toe swelling up more. The doctor said it looked infected and gave her two shots of IM Rocephin... poor baby about went through the roof. She kept falling asleep and she was so restless.

So they told me to give her an oral antibiotic and call if the lines got worse.

But when we got home I didn't feel comfortable with that advice. I checked her temp and it was 103.7 under her arm. I called again and the hospitalist agreed... there was something more going on and they wanted to admit her.

I felt a little silly driving up there... she seemed pretty good. A little sleepy but she was watching Tangled and enjoying it. She walked in her little pink socks into the castle and talked to the Security Guard who got us checked in at 8pm.

When we got into her room she immediately got into the bed and snuggled in her blanket. Then she checked out the chair, window seat... We talked her into getting her blood pressure checked and her O2 saturation done... weight. height.

The hospitalist who admitted her told me that it was very good that we had brought her in. That the rash looked like staph. They wanted to start iv antibiotics and fluids. By this point she was starting to go more down hill. Thankfully they have a special procedure room where they do blood draws and IV's. She sat on my lap while the nursing coordinator and two other nurses worked on getting her IV in. Kiley was such a big girl, she was so feverish and out of it but kept saying "uh huh' to everything we told her.

I don't remember a lot about that night, only that I was afraid, and Kiley was extremely restless and sick. I hardly slept between keeping her comfortable and from being afraid... and poor Christopher whom was miserable from having his shots earlier that day. (yes he came with me)

The nurses were wonderful and kept a close eye on my little girl. We watched a few movies as she snuggled on my lap with her warm little body. Eventually we had to put pads on the bed rails because she kept thrashing her body around so much that she hit her head. The poor thing would get tangled up in her IV so badly that I could hardly leave her because I was afraid she would pull it out and we would have to get another one.

The next day she came around looking quite a bit better. The other hospitalist decided to switch her antibiotic to Vanco, a more powerful antibiotic to help her fight the infection. He explained that the rash and the way her body looked indicated that the infection was systemic. Meanwhile the nurses helped me with Chris, holding him when I needed to be with Kiley for procedures, rocking him to sleep and holding him when Kiley needed me. I'm very grateful to them all for making things much easier. They even had a little swing and bassinet for Chris to hang out in.

 She began to improve with the antibiotics and fluids... we had visitors and thank you to everyone for the toys, coffee, muffins and the company. It made her stay (and my own) much easier. Her appetite is still taking some time to return and she has her moments of feeling clingy. The toe is looking a lot better but we need to do baths three times a day and antibiotics twice a day... She has another appointment on Monday to check in with her and Chris has an appointment on Thursday... so they never end!

One thing I have learned through all of this... never second guess your mommy instincts. I knew something was wrong and got a second opinion. Was her infection serious? Yes... she could have gotten very very sick from this with how quickly it spread... in fact she could have died. It scares me to think that I even considered not calling... not bringing her into the hospital. But thankfully she is doing well, and back to her Kiley self :)

It was probably hardest for these two to be separated... Kara was extremely sad leaving her sister and escaped Tom twice to get back to her. It made me cry... what a neat sister bond these two have. 

Pools & Parks

Pool Time! The girls are loving their new pool. Being out in the sun and enjoying a cool splash in the pool is exactly what they love to do. It also makes for a lot of soggy clothes, swim suits and footprints through my house. BUT ... they all play so well together and I love watching them run around outside.

I'm working on transitioning the girls with bedtime... I stay in for so long and then they are on their own as long as they stay in their beds. They figured it out eventually even if it took until 930 to get it! Hopefully this is a start to a wonderful new trend....

Chris had to get more blood drawn today. Hopefully his labs will come back normal this time and we won't have to mess with these. (His potassium was elevated) I guess we will see tomorrow! I think we've had enough, I don't want more to mess with.

(Kara)

Wow my little girls are growing up so fast! We went to the park tonight and it usually takes us about 30 minutes to walk there because Abby needs to pick up rocks, Kara is picking up sticks and Kiley is sight seeing. But walking 8 blocks with 4 kids under 4 is a big job! Thankfully they have learned that we can only do this if we listen really well, stick close to mom, and really close when cars come close. Then it's some time in the park with Mom chasing them around (I'm the monster) and then it's back home for bath time... which didnt go as well. Too many attempts to drown each other.,,,

Sons and Daughters of the King

This morning we all got dolled up (even Christopher) and attended a Royal Princess Tea. The girls were so excited about it that they were going crazy all morning. (and they even left the preeties in their hair for more than 10 minutes)

This event was part of a MOPS group activity and my neighbor and good friend invited us to go along. How could I resist? We all had such a great time and it was a treat to get out of the house and play with all things pretty. They put a lot of hard work into it and the girls got to have a little fun. My mom and sister and Sarah were able to come along too.

We had a little tea time with treats, a story and a craft :o) None of the girls really were able to sit and listen to the entire story... hopefully they have better attention spans in school! It was a neat story about being a princess of the Lord... I think I'll have to find out what the name of the book was. 

A few people have asked me about Christopher so I wanted to just let everyone know that he is indeed home with us, not in the hospital. Honestly, looking at him you might never really know that he even had a thing going on. Believe me, I had no idea... even taking him into the cardiology clinic I figured they would just think it was an innocent murmur. He is taking Lasix twice a day to help ease the burden on his heart. Right now is the watch and wait phase. We watch his weight, his breathing, his heart. If he does well this month, we'll watch it next month. There is a possibility of surgery but right now we don't want to think much about that... and hope that he will close it on his own. :o)


And really most of the symptoms of his heart issue you wouldn't notice unless you were me, and I thought it was a cold. He had just been struggling to eat, having to take more breaks and getting more tired. And he would sleep and sleep. When we came home from his appointment the other day he slept almost the entire afternoon and night... only up for brief periods. We just had worn him out completely. 


The not so visual signs of his heart failure are the enlarged left side of his heart. 


To everyone who has volunteered to bring us meals... Thank You. We cannot express how touched we are by the generosity of our friends and family for your prayers, thoughts and kind actions. Knowing we are not alone in this has brought a great deal of comfort to us. 

I heard this song when I was pregnant with Christopher and it would bring me tears. (Matt Hammit wrote it regarding his son that had heart issues when he was born) I always felt this song was meaningful about all of my children because I love them with all my heart. After my cousin Justin died I had a difficult time wanting to connect with people again because I was afraid of how much it hurt to lose someone I loved... eventually I realized I was only hurting myself in a different way. I can't imagine the pain of losing a child, and I pray I won't find out with any of my precious ones.

This song means even more now...(All Of Me) <---- I encourage you to listen to it and be touched too. 

Day after

I think today I have wavered more between tears, anger and laughter... probably just adjusting to things. Part of me is the little angel on my shoulder saying "This is fine! Nothing is really that wrong, you are just over thinking things" then there is the little devil dude saying "This is awful! He could have surgery and even die!"

So the truth is probably somewhere in between. I suppose after a few days I will adjust to all of this and life will feel back to a more normal. The waiting is still hard... but I'm trying not to look at it that way. Because with this... we could wait for 9-10 more months... or who knows how long. I'm enjoying his little hands, fingers, eyes, nose... I enjoy his snuggles and his coos.

It will be important to see how he does with the Lasix. I called into the clinic this morning and Barb reeasured me on how safe the medication is to give him, that this was helping him. I have a feeling I will end up talking to them quite a bit in the next few months... sorry guys.

Oh and I forgot. His weight at the clinic was 10lb 6oz. 

Something unexpected

Grab a cup of coffee, soda, lemonaid or whatever wets your whistle and sit down. This will probably be a long and wordy post. I've got my coffee after the morning I've had!


Ok first update is dealing with his MRSA... this is an easy one. It's not an active infection therefore we can just watch it and just need to be careful if he would ever get sick.


Second update, remember that murmur we found last Friday? Well here we go.


Chris and I came into the clinic at about 9am this morning to meet with Dr. A (the cardiologist). The nurse did a thorough workup/interview, EKG and blood pressures. We moved into another room where we started on the Echo (an ultrasound of the heart)


I guess I figured out pretty quick that things weren't normal because instead of a quick 10-15 minute scan... we were in there for an hour. My second clue that things weren't quite right... the doctor came in during the test and had them check something again. He did really really well during all this fussing about, he had a few moments where he got upset because he wanted to go to sleep but we put a little sweeties (sugar water) on his pacifier and he finally went to sleep.


So what did we find out?


He has a large VSD and a small PDA.

A quick refresher for you... This is a VSD.

This is a PDA.

His heart is starting to show signs of heart failure. (his left Atria- one of the chambers of his heart) has already started to thicken and his pulmonary pressures are elevated slightly. This is from the VSD, a large amount of blood is rushing through that hole and putting more pressure on the other Ventricle, that it's not supposed to have. 

Dr. A believes that Christopher's small PDA might be because of the large VSD that he has. (Getting sick of Acronyms yet?) Here is a quote about PDAs ... skip it if you don't care, otherwise it's pretty easy to understand.

"Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.

In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries."

(http://www.nhlbi.nih.gov/health/health-topics/topics/pda/)

The Plan?

Dr A is starting Christopher on Lasix, a medication that will help pull off fluid and reduce the work his little heart is doing (also will make him pee more in case you were wondering haha!)

He is going to talk to Dr. Z (our pediatrician) and we will see Dr. Z again on Tuesday. We are going to need to watch his weight carefully as well and may need to supplement him. Does this give me an excuse to eat more so that I can continue to keep him growing?  Pass the pepperoni pizza please!

We come back to see Dr A again in a month to check his heart again. We will know more then. He asked me if I wanted to discuss surgery but I wanted to wait until the one month appt to see where things stand. 

Will his heart hole close? There is a chance yes. Unfortunately for Christopher the hole is not located in the muscular tissue of the ventricle... and it's large.

When do we need to consider surgery? If Christopher starts showing signs of not being able to compensate (faster breathing, more difficulty breathing, lips turning blue, not eating well) or if one of his heart scans shows that the heart is getting thicker. 

Why are they waiting? Why not do surgery now? As long as Christopher remains stable we are ok to wait. If at the end of this surgery is what we do we will make it safer for him by waiting and letting him get a little larger. Plus by waiting we give him a chance to close it on his own. 

But that is where things stand currently. I'm more than happy to answer questions and comforted by your prayers. Please continue to pray for him! I'm so thankful for the staff there that are my co-workers and friends. I'm comforted that they are there to help us through this and that I know I can call any time to ask silly questions or concerns. What a blessing they already are to us....

And now we watch, wait and rest in the Lord. 

Never Dull... pass the salt please

Christopher is trying to catch up with his eldest sister in the number of visits to specialty doctors it seems. At 7:30am I received a call from his pediatrician stating that his culture grew a large amount of MRSA and that he needed to get in to see an Infectious Disease specialist ASAP.

Did I mention that the nurse mom combo sometimes is awful? I've seen MRSA, I've heard about MRSA over and over and over again. Did I ever think that my 6 week old baby would have it? I mean how is it possible? Where did he get it? What does this mean for him? I know there are powerful antibiotics out there that can kick this bug but they can also be pretty tough on your system as well. Will he need to take these?

Needless to say I had a few moments of panic this morning. I'm thankful to all of you that I texted early this morning in panic and the reassuring you granted with offering of prayer. It took a bit for me to relax, it just caught me off guard so much.

Funny. When it's your son or daughter... it is terrifying to get an unexpected phone call. I can only imagine what those parents feel like when they get a cancer diagnosis in that way.

He has an appointment on Wednesday so we will know more then. I cannot even really speculate what any of this means. I don't have a knowledge base to go off of. So until then we wait... But it is some relief to have an idea about what might be going on. Because I guess, it wasn't really the stuffy nose that bothered me... it was the swollen lymph nodes... I knew something was off when they started getting larger.

Hopefully now we can treat this and move on... with nothing more to worry about then when he will start cutting that first tooth.

Thank you as always for your prayer and support... even in the simple things it is greatly appreciated.

(I think his eyes are going to stay blue!)

A heartbeat away

We are busy little beavers over here in the Dose household. Tom had a job interview yesterday (hurray!) and I took Christopher in for his little cold, after debating 1000 times about whether I was crazy to take him in. It was just a little cold that wouldn't go away. But being six weeks old and having spent at least 3 weeks of his life being sick, I decided to take him in. He just seemed extra sleepy and wasn't eating as well. The least they would do is tell me it was a virus or newborn thing and send us on our way.

Imagine my surprise when she tells me he has a large murmur! No one had mentioned it previously during his visits so it took me a bit by surprise. But I listened and it was absolutely the easiest murmur I had ever heard. It was loud! So Christopher is set up for an appointment with a Cardiologist next Thursday to see what they think. The primary doctor thinks that it is a Ventricular Septal Defect:

Yep it's basically a hole in his heart. The trick is seeing how large it is and where exactly it is located....So I'm hoping that because his is so loud it means it is a small hole, and one that will close on it's own. Thankfully he is stable with it and doesn't seem to be bothered much by the murmur (both awesome signs) In fact Monday we didn't know he had it! The only thing that troubles me a little is how sleepy he has been and that he has been having a few more issues eating... but is that cold related or heart related?

Of course I'm his mother, so any possible concern seems huge, even though I know in my gut that he probably has this tiny little hole that will go away and be no issue. It's the mom vs nurse feeling.... nurse says it's fine... mom is concerned.

I mean... he is my son.

And on a slightly more positive note... Abby hid my computer mouse outside the other day because she thought it was an Easter egg... I guess it COULD look like one...at least she knew where outside she had hidden it....

They are all playing babies right now. It's really cute :o) I might have to bring up the doll cribs soon, or perhaps I'll have Tom haha!

Sigh

Amazing... the morning I cannot sleep... my girls all sleep in. It's nearing 8 o'clock and no sign of little girls yet. And the crazy thing is, I put Kiley and Kara to bed at 7:30pm! They are going on 12 hours of sleep (Kiley & Kara)

We decided yesterday to try and see how eliminating naps would affect bedtime. I can honestly say that bedtime went better but the afternoon/evening was a little tougher. Kiley & Kara get cranky if they miss naps! We'll see if this trend is something to continue or if it is too much work!

Yesterday we did quite the flurry of activities. Played tag in the backyard, went to the park, went on a walk... then later after Tom went to work the girls and I cleaned up the living room, I chased them around with the vacuum for awhile and then we played hide and seek. It is so much fun! I count to ten and they all scramble... Abby cannot contain her excitement and giggles the entire time she is hiding... so I pretend that i can't find her and she will laugh and laugh. Then after I find her it is her turn. Kiley and Kara are even starting to figure the game out and were sometimes better at finding me then Abby! Then we all read books together on the living room floor, each got to pick a book they wanted to read, Kara is really into reading right now and it's nice to see that they are all getting better at sitting and reading a story. We will have to read more!

The evening was going well, the house was clean, we had played and laughed together before bedtime... Kiley and Kara were asleep so I let abby leave her bed for awhile since she wasn't as tired as the other two. She helped me with the sick puppy and played for awhile. Then I told her it was time for bed, she balked of course so we talked about preschool. Still no luck. She went a little crazy and tried to run away, I grabbed her hand and she pulled back hard. She was still fighting me so I picked her up and put her into bed. She told me her arm hurt... and wouldn't stop crying. At first I thought she was just upset because she had to go to bed because she kept telling me she wanted a different doll then the one I would bring. But I soon realized it did hurt...

And I feel SO BAD... I gave her ice, and ibuprofen but she woke up twice last night crying. So we will have to go into the doctor today to get it checked out. And she is upset because she wants to go to school. So I'm waiting to call in 10 minutes, as soon as the office opens so that I can get an appt as soon as possible in the morning in case she can still go...

Ugh... I cried myself to sleep last night I felt so bad. I really didn't mean to have her get hurt! Hoping that her arm isn't hurt too badly... will update later with how it goes...

All Grown up

I hope that some day I can get a shot like this when they are all 15 & 16 and smashed into the bathroom getting ready... it is quite the meeting spot right now. And we have gone through so much toilet paper lately. Casualties of the potty war I guess. Roll one went into the bathtub, roll two was unwound and roll three was shamelessly dropped into the toilet....

Meanwhile our house is still spotless... or well... kinda... not really... actually very messy....I'm not sure if Abby ever found what she was actually looking for.

The girls are slowly starting to feel better. My precious Kiley is growing up so quickly!

When did they grow up? I swear I only turned away for just a moment. (Kara)

And baby Chris ... so cute :o) He is just starting to smile and coo... 

And Abby told me she was going to tell her teacher on me again... time for bed!