I'm the big sister!

Areya has been such a great big sister. She loves her little brother so much and is always willing to help hold him, feed him and change him. It's crazy to think she was that small not so long ago.

Aniela also loves to help care for her brother, unfortunately her being soft is a bit to rough and she has to be watched pretty closely. For her Taevin is a life size doll and she feels that if he is not crying at the moment then he doesn't need his passie, which in turn causes him to cry.

Taevin is doing great except for really, really, really bad acid reflux and the 1 to 2 hours following most feedings where he cries non stop. With all the reflux and the amount he spits up it is amazing that he is gaining any weight. He was 8 lbs at his one month check up, keeping our fingers crossed that is more at his next visit. He is sleeping in about 4 hour blocks at night, which would be nice if I didn't have to pump after wards. ( I just can't get him to breast feed) Here's a typical night: getting up, warming a bottle, feeding him, change him, getting him back to sleep, pump, and clean up. It takes around a hour on a good night. I don't know how I even function during the day. I find myself dozing while doing just about everything, even standing!

As of right now we average 2 doctors visits a week and are all over the place. They range from Children's and Chicago to Grayslake, Lindenhurst and Evanston. As long as continues to do well I will suck it up and make the drive, even if it is at 6 am during rush hour to be to Chicago by 8.

Here's our little burrito.

Just a side note. We got a summary of charges so far and all I can say is thank goodness for health insurance!!!! I think we are at just over $500,000.00 just at Children's Memorial alone and to think that we have to do it all again in 3 to 7 years.

Life with a new born

On Wednesday I attended the funeral of a good friend Cristi Buffenbarger who lost her fight with breast cancer. She was such a wonderful person who touch the lives of all the people she met. She was always there when you needed to talk (even though her problems were bigger then your own), she was so full of knowledge and love to share it with everyone, she was an awesome teacher who made it fun to learn and made you want to know more. Cristi always put others first and showed us what it means to be Christ like. She was such a strong person and even when she was in pain and tired she always had a smile and a kind word to share. I am so blessed to have known her and had the privilege to call her my friend. Cristi will truly be missed and I look forward to the day I will get to see her again.

So I forget what it is like to have a new born. I forget that it takes 2 times longer to get ready in the morning. That no matter how hard you try you end up having spit up all over your clean shirt. It never fails that the phone rings just as the baby falls to sleep. Even though it feels like you just fed them they are hungry and wanting to eat. DIAPERS! Trying to function on 4 hours or less of sleep. Re-learning to do everything one handed. Protecting the baby from the other children.

Anyway, the realization that I am the mother of a new born hit on Wednesday. Half way through the funeral Taevin got hungry and since I couldn't nurse him there I got out the bottle of breast milk (good thing I've been pumping for the past month) and while trying to keep him from screaming I started to prepare it. You may be wondering what has to be done to breast milk? Well for most kids nothing but in Taevin's case we have to add medication and thickener. While this may not be that big of a deal normally try doing it one handed, holding a crying baby, during a funeral. Not as easy as you would think. While opening the package of thickener I spilled it all over me, Taevin, the car seat and the seat. After getting that cleaned up, the bottle prepared and him fed he started refluxing and spitting up. I bet you can guess how that turned out, yep you guessed it, it ended up all over him and me. Good times! So we made it through the rest of the funeral and out to the car.

As we were driving I realized it had been a long time since I had pumped or nursed last and being over a hour away from home I really needed to. That's the next problem, where can I do this? I decided that I could stop at the Walmart and use the family bathroom to pump since I had just fed him. So I pull in, pack up him, the diaper bag, the pump and head in. Wouldn't you know it there was no family bathroom in this Walmart! What to do now? I bought a car adapter for my pump and headed out to the car. The problem was not only was it over 80 degrees outside it wasn't the most private or comfortable place to do this. Oh well, what choice do I have? I found a shady spot, put on the cover and got it done. By this time little mister man was hungry again so I had to prepare another bottle and fed him. I finally got home 3 hours after the funeral was over.

What a day!! We have so many doctors appointments over the next month I really hope they turn out easier then this.

Going home!

Tuesday 15th

We finally get to go home!!!!!!!!!

We got the all clear to go home. Taevin got his eyes and hearing checked. Got his Hep B shot. Checked by all the doctors. (pediatrician, cardiologist, heart surgeon) Was seen by the OT, PT and speech people. Got his last dose of antibiotics. Ate, got his medication and got his IV out.

While all this was going on I went to the Ronald McDonald House to pack, clean and check out. Once I got back to the hospital all I had to do was fed him, sign a few papers and then we were out of there.

I didn't tell Damian or the girls that he was getting discharged so when we got home they were so surprised and very happy to see us!!! Taevin did great on the trip home even though the car decided to die on the freeway in the middle of rush hour and a 2 1/2 hour car ride.

Here he is happy to be home and in his own bed. Ok that's me but i'm sure he is happy to be home too.

Getting closer

Taevin got a 5 day dose of antibiotic and the chest x-ray came back normal. Good signs and one step closer to going home. He is also eating all on his own so the NG tube is out! Taevin is now 7 lbs 14 oz and gaining, he even looks for extra food after he's feeding is over. What a little piggy!!

If all goes well we will be able to go home on Tuesday or Wednesday. Damian came up after work today and we will do all the necessary training in preparation to get out of here. We have to take CPR, watch some videos on car seats and shaken baby, go over his medications, learn to care for his incision and the proper way to hold him until his sternum is healed. Damian also has to learn to feed him and how to thicken the breast milk.

Here's Taevin in his big boy bed.

Taevin is one month old. It is hard to believe it has been a month already! What a crazy month, looking back I am so grateful that we have made it to this point. It has been such a long road and has been full of so much stress and worries. I thank the lord every day for getting us through the past month. I also want to thank all of you for your prayers, thoughts, love and support!

One month old!

A little bump in the road

Today when I got to the hospital I noticed that part of Taevin's incision was a little red. The doctor came in and thought the same so they are starting him on antibiotics. They are also doing blood tests to check for infection and a chest x-ray to check for fluid. If there is fluid then they will have to reopen the incision and drain it.

We also found out that one of the other babies has MERSA and that Taevin has been exposed. They have him along with several other babies in isolation and will be testing them for it.

We are keeping our fingers crossed that neither of these thing will keep us from going home next week.

Doing good and almost ready to go home

Taevin is doing so good! He now has all the lines out. (except for the NG tube) He has started eating by bottle and has even tried nursing a few times. He does pretty good with the bottle and takes most of it by mouth but is given some by NG. He hasn't really figured out what to do during breast feeding, most of the time he just falls asleep. Oh well, I guess well need to practice a little more. If things continue to go well we are hoping to go home some time early next week. He will still have the NG tube but at this point i'll take it. Both Damian and I will have to learn how to place the NG and learn to use the pump that delivers the milk. We also have to take a CPR class.

This is a picture at a week and a half after surgery. You can see his incision is till taped up but healing well.

June 11, 2010

Taevin at 28 days old. I can't believe his is almost a month old already!

Where's the trust?

Where's the trust? Well at this point he's not got any. The poor little guys has been poked, prodded, cut, bugged (every hour), things shoved down this throat and up his nose one to many times. His trust is gone...... I'm guessing that is why he has taken to sleeping with his eyes open.

In a way it's kind of funny but I do feel bad for the little guy. After all he's been through in his short 3 weeks of life I would want to be left alone too.

Taevin continues to do well. His oxygen has been turned way down and should be off it by tomorrow. He is off all medicine and almost all his lines are out. His feeding have increased and they are now feeding him in 3 hour intervals. If he handles those well they will try bottle feeding him. As of right now the main focus is getting him to eat on his own (no feeding tube) and once he gets that down we might get to think about going home. They are still keeping an eye on his heart and so far the only problem is a small mummer. They told us that this may happen, and the reason for it is due to the way the hole in his heart was patched. The patch/hole is not a perfect circle and there may still be small gaps but over time his heart will grow it's own tissue over the patch covering those holes. He has an echo scheduled for Friday just to check thing out.

My Grandma came on Thursday to help out for a few weeks. She was so excited to finally get to meet Taevin. He is her 16th great grandchild. Thank you grandma for all your help! We love you and are so glad you are able to visit.