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!

Letter to my Son

My dear Christopher,

One month already? Hard to believe how quickly time has flown by. It truly vanishes right before your eyes. So Christopher how big are you? 8lb 9oz (they said 8lb 15oz but you had a pretty full diaper so I'm going to fudge a bit) & 21 inches.

Things you are doing: You are just starting to look and really "see" faces. You have the most inquisitive look on your face when you stare at Daddy and the girls. Mom you hang out with a lot so I tend to either get the happy (I've been wanting you to hold me mom) face or the sad (why didn't you pick me up sooner) face.

You still sleep quite well most nights. The last few days you have had a lot of trouble sleeping because your nose gets stuffed up and you can't breathe. You and the little boogie sucker are not friends right now, he makes you quite upset. You refuse to sleep in the pink bouncy chair for more then an hour at a time and prefer to snuggle up next to mom or force me to lay on my back so that you can lay on top of my chest. Perhaps you just don't like the color pink? (lol)

We started you on cloth diapers and you are doing great with them! You like to be changed a little sooner because the cloth 'feels' wet unlike disposable diapers. Does this mean you will want to potty train sooner? Believe me your dad and I won't mind in the least if you do!

Your sisters love to hold you and kiss you... in fact it's hard to keep them from kissing you constantly. You put up with things really well, as it is good you do. My dearest little buddy those sisters will be after you for the rest of your life, it is better now to accept it and join their ranks. I promise I won't let them force you to play Barbies all the time (though you will need to play occasionally) and I'll make sure they play matchbox cars or tractors with you.

Always know how much your father and I love you. We thank God for all of the beautiful children he has allowed into our lives. May you grow up to be a strong man of character and love for the Lord.

Love,
Mom

Yesterday

Trying something a little different today- here was our chaotic day- :o) Enjoy the photo overload... 

7:15- Girls all up, trying to get them ready for the day. Kiley to the potty, Kara to the potty, tell Abby to go to the potty, dress Kiley and Kara, tell Abby to go to the potty. Pour cereal for all three. Change Christopher, sit down to feed Christopher, refill Kara's bowl of cereal, finish feeding Christopher, refill Kiley and Kara's cereal.

(Abby and Kiley filling their shopping carts)

8:00- Wake Tom up, get Abby dressed, prepare coffee machine in the rare case I have enough time and energy to get some. Get dressed.

(Kara browsing the meat market)

8:15: Tell Abby again to find her shoes, have lengthy discussion about lost fairy wings, break up fight between Kiley and Kara. Go over diaper bag to make sure we have everything we need. Find three pairs of shoes, Herd group into the car, tell Abby again that we don't have time to find her doll's fairy wings. Pack up Christopher and decide that instant cappichino will have to suffice this morning.

(The girls farming-Abby was pulling carrots out)

And the day has begun... exhausted yet?

9:00- Research Study appointment with Christopher- where of course he WILL not go back to sleep like they want.

(Kara was too afraid to go near the pretend pig...)

10:30- Chris and I walk out with 35 dollars in gift cards and a package of diapers (part of the research study) Tom has returned from dropping Abby off at preschool.

(Can you find Abby and Kiley?)

10:45- I run Kiley and Kara into the bathroom at the mall while Tom looks for a tool he needs. We browse through the clothes that is on clearance and pick up another package of Dora undies and a pair of jeans for 5 dollars.

(Kiley and Kara having coffee and a meal in the sod house)

11:00- Tom and I tell Kara to put back the candy bar (why do they put it at their levels!) for the third time. She obeys well but stubbornly keeps at it. We pay for the clothes and Tom has one other place in the mall he would like to check.

11:15- Kiley and Kara sit in the mall hall in a little seating area with couches and chairs. A man at a piano begins to play music and they start to dance. Scare off the man that had been sitting their previously. (sorry!) Still no tool so we leave to go get Abby.

11:30- Pick up Abby from preschool and admire her little goodies and Easter Basket.

11:45- I stop into Hyvee to pick up Sandwich things- the cart I chose shocked me every other step (annoying!) After I finally found the bread which was cleverly hidden near the alcohol (apparently if you drink you must have bread... or is it a buffer of some type?)  I am shocked to see all of my kids in a shopping cart behind me. Tom informs me that not long after I left Abby decided she HAD to go to the bathroom. So without a phone he had to drag all of them into the store and get Abby to a bathroom. Fun times.

12:15- we stop at Subway to pick up lunch for Tom and I. Take Kara and Kiley in for another bathroom run. Taking two toddlers into the bathroom is a lot of work- especially when they don't understand that surfaces in a public restroom like the toilet, toilet bowl, floor... are extremely disgusting. I had to wash each of their hands twice... and then forced them to line up against the wall and to stop TOUCHING things!

12:30 WE FINALLY GET ON THE ROAD

1:00 Everyone asleep in the car after a little Simon and Garfunkle Scarbarough Fair... peace at last (Tom is asleep too)

(Daddy teaching his three girls how to change a tire already... lol)

2:00- We arrive at the Children's museum- we somehow got lost and while admiring the play ground missed the fact that there was a large T-Rex Dinosaur standing in front of us... not sure how we missed that.

(This dinosaur and one other are motion activated, Kara is hiding behind me right here. It was quite impressive and scary!)

The musuem was great for the kids, if we didn't live an hour away I think we would be up there quite often! Everything is kid geared and yet fun for parents too. These are the photos you have been admiring through this post :o)

By 4 o'clock and another potty accident the parents were all ready to go home. The promise of fruit snacks led the girls out of the musuem and they all told the staff how sad they were to go (loudly). We headed back to town and picked up chicken nuggets for the girls who were now starving (at 5 o'clock)

5:30- we were parked outside the medical spa- I had a 30 minute massage scheduled at 6pm. Well of course all three had to go potty again. The spa people were so wonderful letting me drag my three into the spa bathroom to avoid another accident.

6:00- an amazing massage- the best I have ever had. The lady commented on the amount of tension I had in my shoulders and back... surprise surprise eh?

7:00 we made it home, fed them again and got ready for bed... phew what a day!!!

Onward April!

Declare a National Holiday! The girls slept in past 7am! (Till 7:30) lol and I can honestly say that Christopher had a pretty decent night himself. I'm glad his fussy nights of being up till 2am have gone away at least for the present.

Our weather has been absolutely unbelievable, 90 degrees yesterday! I had the girls out playing in the sprinkler for an hour (on April 1st) I had completely forgotten that it was Palm Sunday yesterday, thankfully I had the girls fairly dressed up. Abby was pretty confused about being rushed into a line of kids and being given a branch to wave while she sang. Sadly no camera came along for this. It was still pretty special to watch her singing with the other kids. We are finally reaching this stage!

Christopher has started to become very interested in faces and the people talking to him. He will just look and look at you, perhaps give a little smile and make a few squeaks. Soon he will be gabbing away with the rest of the girls. Hard to believe he will be a month old tomorrow!

Tom worked 8-12am again last night so we spent most of the evening with my parents. My brother and future sister in law were there and wanted to see Christopher. They picked up a few cute outfits for him, I can't wait until he can fit into all of the cute outfits people have picked up for him that are 3 months.

We are planning to go up to the Children's musuem today after Tom's job interview. It is supposed to be closer to normal temperatures today so we figured it would be a good day to get out and enjoy that.


Well I need to scrounge up more panties for a few little girls and put down this snuggly little baby. (also need coffee!)

Till later...

Spring Bliss

3Sons are a heritage from the Lord,

children a reward from him.

4Like arrows in the hands of a warrior

are sons born in one’s youth.

5Blessed is the man

whose quiver is full of them.

Abby (3) Kiley (2) Kara (2) & Christopher (3 weeks)

All of my beautiful beloved children. 

There is no end to work and messes when you have 2 year old twins. But the bond these two share is unbelievable and I am privileged to be able to watch this grow and develop. I couldn't imagine my life without them. (Kara is doing the kissing, Kiley wiped it off and said "yuck!"

Spring is here. And I'm in love :o)