Waiting for the door to open

It has been a long two weeks of adjusting, and it doesn't seem to be ending any time soon. Sadly my kids are also showing signs of the wear this has had on them. They all have their unique ways of showing it. I just hope that soon we will be able to settle into a little routine and they will settle in.

They went to daycare for two weeks and the driving became too much for us. Tom and I were each driving 50+miles a day and I didn't like how much time this took away from my family. So we switched daycares! I found a wonderful place that I was comfortable to have the girls go to, and my sister was going to watch Chris...

Then the help we were going to have to help with daycare costs... fell through... and when daycare is 60-70% of your income... you need a little help. So now we have been scrambling to find people that are able to help us through this problem. The interesting thing is... once I hopefully start working part time we will be able to get this assistance (I know, it makes no sense) So it is a temporary setback but frustrating.

Sometimes it would be nice not to have to do the one step forward... three steps back dance.

I have the most wonderful family though... and they are supporting us through them. I don't know what we would do without them. Thank you!

I can't wait to be home with my girls (and boy) and be mom again. I pray every night, every car ride, every moment I have to think... that this will all be straightened out in the end... that He would grant me the desire of my heart.... to be with my children more.

I know He has a plan. And it's probably to trust Him even more...

Kiley is back on antibiotics by the way. She ended up with a double ear infection and they wanted to make sure her toe is healing. She just woke up again tonight so I hope it is taking care of the problem. I would like to avoid any future doctor's visits... we've certainly had our share.

Chris goes to his next appointment at the end of June. Hopefully we'll know how he's doing then...I don't know really how he's doing. Most days I've tried to stop analyzing everything and just trust that there will be answers in the end... and that we will know what to do then. I did get the dictation from his visits and oddly this has given me some peace, I like to see the black and white print, read it, read it again, and then sort it away. Perhaps that's from the medical training... or perhaps that's just how I am.

Kara and Abby... please continue stay healthy. :)

Time for bed, church in the morning. I need to lay this snuggly baby down. I'm sorry poor house. I tried to clean you... there just aren't enough hours in the day.

Soggy

We are day three into daycare. I bump into quite a few people who ask how it is going or how I'm doing... usually I reply with a "good" or an "ok"... mostly because I don't want to tell them that if I say more I will probably end up in a pool of soggy mom sadness... or that I feel the worst kind of homesickness without them, that during lunch I sit in a little room to pump and I can hardly force myself to eat because I feel so sick from being away from my babies.

But of course I eat because if I lose the ability to feed Chris... I will probably go insane and quit my job and become an extreme coupon-er... (i don't know how to spell that)

Aka... I love my job, I hate being away from my kids. Can I just sneak Chris under my desk? I think I would at least be able to stop crying every night before bed.

Kara was really acting up right before bedtime... just screaming and trying to get out of her bed. I gave her a hug, put her back in bed... same reaction. Finally I asked her if she was sad that mommy was away. She told me "yes...." So I prayed that Jesus would be with Abby, Kiley, Kara & Christopher while mommy and daddy are away. That He would help them not be too sad. Behavior stopped. I cried quietly while they fell asleep and just sat with them awhile after.

So there you have it... I am a soggy little mess right now. I'm homesick for my kids, I miss them terribly.

Trusting... trusting that God has a plan for us in all of this, trusting my most precious cargo to someone else... trusting and praying and hoping that I can come back home again soon...

Memorial Day

I avoided this place for awhile, I apologize. It was just too hard to sit down for more than 5 minutes and think up something to write. Our family has had fun moments, sad moments, frustrating moments and moments of terror. Perhaps I should just get a mood ring and you will all be able to tell subtly what is going on.

Abby is FOUR, she had a wonderful birthday party at the lake celebrating with friends and family. She had a pinata and cake and candy and hot dogs... oh and watermelon. She got to open lots of presents and play with he favorite cousins and friends. We had a wonderful time.

Christopher ended up being baptized the same weekend and his little party went very well, he slept through most of it. Ask me about baptism sometime. I would love to talk about it with you. The short and sweet of it is that we see it as a dedication, a bringing of our child to God to say publicly... he is your son, we will do the best to raise him the way we should.

Kiley's foot is looking quite a bit better. We still have a few repercussions around from our hospital stay. Like refusing to use the bathroom when we ask her to. Silly things like that. It still doesn't look great, but it doesn't look... awful either.

Kara is Kara. My sweet goofy little girl. She loves to swing with me on my lap and has started tagging along more after Abby. She is in fact still sleeping which is a miracle, I can't remember the last time one of my kids slept in until almost 8 o'clock!

All of the girls love our puppies and I know they will be sad to see them go. We have only two of them left now, the boys went quickly this time.

Tomorrow the fun begins, Tom runs the kids 15 miles the opposite direction of work ... to take the kids to daycare. They will probably need to be there from 10-4:30 or 5pm. The I will drive down to pick them up. I have never done this daycare thing, I have no idea what it involves from a parent's point of view... I'm dreading it like you wouldn't believe... mostly for Christopher who won't understand why I'm not there. But... I'm plugging away, trying very hard to stay positive. I cannot leave my job quite yet, I carry the insurance and our family has too much going on to drop off of that. So we will trust that we are doing the right thing, right now. I know this isn't permanent which keeps me going.

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!)