What was the point?

Have you ever left the doctors office and think "Why do I even bother?' That's how I felt after leaving the GI doctor's office yesterday. I have been waiting for almost a month for this appointment thinking I would finally get some answers to Taevin's reflux problems, but instead I leave extremely disappointed. Here's the story..........

I get there 30 minutes late due to road work and the fact it is impossible to find the place. After waiting 15 minutes to be registered we are finally called back. Get in the room sit down then strip Taevin down and they weigh him 9 lbs 4 oz. What? Only 9 lbs 4 oz? He was 9 lbs 15 oz on Friday. Next the student doctor comes in for a medical history. Asks about his heart defect, his stay in the hospital, about my pregnancy, the reflux and his BM's (they always got to know about the poo). She does a quick exam and listens to is tummy. In comes the doctor asks what my concerns are. (extremely bad and painful reflux) Then we talk about feedings and current medications. I am then informed that Prevacid (which Taevin has been on from the beginning) does not work for babies his age. The doctor says to stop the Prevacid and start Reglan along with the Zantac. Next he starts talking about the lack of weight gain and Taevin only being in the 10% for his age. I think, ok he's a bit small but considering his first month of life it's not to bad right? I guess not because he starts talking about putting back in the feeding tube, which is the last thing I want to do. The reason why he is considering this is because babies burn most of their calories by eating and since Taevin is eating so often (every 1 1/2 to 2 hours) he burns more calories then he takes in. The doctor sends us home with a RX, a lab order (to check his levels) and a follow up appointment in 4 weeks.

Helpful? Not really. Happy about the way things went? Not really. Got the answers I was looking for? Not really.

So on our way home I stop to get his labs drawn. The poor little guy was poked 4 times. They just couldn't find a vain and once they found one it clotted before they got enough blood. They finally ended up sticking the bottom of his foot and squeezing it out. After that we went home and laid down for a much needed nap only to be woke a little later by a phone call from the doctors office saying that his labs came back showing *elevated potassium. They wanted us to go back and get them rechecked to make sure it was not a *mistake. So after a quick Google check on *Potassium and me having a small 'freak out' we headed back to Lake Forest to try again. They poked him again getting nothing so they opted for the foot poke. The doctor's office never called back so I am guessing the levels were normal the second time.

Taevin's 2 month check up is tomorrow, I guess we see what the Pediatrician says.

* Potassium - Potassium is a substance essential to your body. A mineral in nature, potassium is considered an electrolyte. Electrolytes are charged particles, containing ions, whose tiny electrical charge helps to send messages through your nerves. Therefore, either elevated or lowered levels of potassium will affect your nervous system by sending innacurate signals, sometimes resulting in paralysis.

* Elevated Potassium - When potassium stays in your blood because your kidneys aren't filtering it out, you may experience weakness accompanied by an irregular heartbeat.

*Mistake - it is easy to obtain inaccurate measurements of your blood potassium levels. It's very likely that your blood sample has been "hemolyzed," where the pressure of drawing blood into a vial or syringe breaks open the delicate walls of red blood cells. These cells leak their concentrated amounts of potassium into the plasma and other parts of blood, so hemolyzation will give false high potassium readings. For this reason, elevated potassium levels may be difficult to determine without further medical attention.

Happy Independence Day

Happy 4th of July! This year it was on a Sunday so we got up and went to church. After church we spent the day just hanging out at home waiting for Damian to get home from work. I picked up some fireworks at the store a few days before and the girls couldn't wait to lit them with daddy. Little did we know that the only things in the packages were snaps, smoke bombs and a sparkler tree. Can we say LAME!!!!! We were all pretty disappointed. I guess next year we will have to make a trip to WI and get some cool ones.

My disappointed family.

Damian holding the sparkler tree.

The girls throwing the snaps.

Baby shower and doctor's appointments

On Thursday the ladies from church had a little party to celebrate Taevin entrance into the world. They had some games, yummy refreshments and cute gifts. Thank you to all of you for your loving support, your prayers, the gifts and all that you have done for us! We truly are blessed to have such great friends.

That night after I got home we had some major drama with Damian's mother (see me for details) which resulted in me having to take the girls to Chicago with me for Taevins doctor's appointments. So bright and early ( 5:30 ) Friday morning we were off to Chicago. Traffic wasn't to bad and we got there a little early.

First was Taevin's cardiac follow up. They did an EKG, ECHO, chest x-ray, checked his O2 and listened to his heart. The only concern was the left vessel leading to the lung has a sharp turn which lets the blood flow a little less freely to that side. At this point it is nothing serious and they will be keeping an eye on it.

Next was the swallow study. Since he has so many issues with feeding they were concerned that he was breathing in the milk instead of swallowing it. What they do is give the baby breast milk or formula mixed with liquid barium. The baby is placed in a feeding seat and the fluoroscope table is tilted so that the response of the pharyngeal area during feeding can be captured as a permanent video image. ( I Googled it, just in case you were wondering ) we did this twice, first time the milk was thickened and the second time it wasn't. The test showed that he is refluxing ( you can aspirate the refluxed milk also) and having a hard time swallowing it all down (It takes him a few extra swallows then normal) and with the non thickened milk he was aspirating. So we need to continue thickening his milk and give him plenty of breaks so he can get it all down. We are scheduled to see the GI doctor on Monday and hopefully he will be able to give us some solutions to the acid reflux problems.

What a long day, we finally made it home around 2pm to an extremely hot house. The A/C broke and is going to cost either $1000 to fix or we will have to get a new one. "Come what may and love it"

2 months old

On the 13th Taevin turned 2 months old. It's crazy how fast the past month has gone. He is doing pretty good. He is still having problems with acid reflux and has started having a few problems breathing. He has times where he struggles to breath and the breaths are really hard and loud. It has started to worry me but we have not taken him to the doctor yet because on Tuesday he was suppose to get his swallow study which would tell us if he is aspirating, but we never made it to Chicago. Instead we sat in traffic for a hour and a half only to make it to the about 30 minutes away. There was a 4 car pile up and we sat on the freeway forever! I had to reschedule but since we were in Lake Forest I decided to get his blood lab done. (To check his calcium levels)

He has started to smile at us and loves to be held by anyone who is willing. I will be getting him in for his 2 month check after my family leaves, so I wont know his stats until then.

Areya has become such the little mommy. She is so good with him and loves to hold him. She is always willing to help out. Both the girls love their brother so much! I am glad that they are both old enough to enjoy this time with him.

I looked out the window and what did I see........

It seems we have a new friend. This deer has made our yard it's new home. She has been hanging out for the past week or so eating my flowers. Damian tried chasing her off but she keeps coming back. If she ends up sticking around we might even name her.

It's fun to live in an area where we get so much wildlife in our yard. We have seen a fox, skunk, deer, rabbits, possum, squirrels, birds, fireflies, and even a coyote.

Doctors, Doctors and more Doctors

Taevin had a total of 4 doctors visits this week. The first one was in Chicago at Children's. We had to be there by 9 am which means we sat in traffic with all the other people who had to be there by 9. This appointment was to check his incision, it is healing well. All the stitches are internal and should dissolve on their own but for some reason it is irritating the skin and had caused some blisters. One of the stitches was sticking out so they removed it and said to watch for any more.

The next appointment was on the same day at Lake Forest with the Endocrinologist. She is going to be watching his growth and calcium levels. He has been on a calcium supplement since surgery and the plan is to start weening him off of it. The trick is to find a good balance because if you have to much calcium it can cause kidney stones and if you don't have enough it can cause seizures. His level was a bit high so she lowered his dose. While we were in the office they asked if they could record us for a commercial they are doing for Children's Memorial. It will be on You Tube in the next few months.

On Thursday after a very long sleep less night and most of the day crying (Taevin, not me but I wanted to) I set up an appointment with the pediatrician to talk about his extremely bad acid reflux. It is so bad that he cries for up to a hour after each meal, spits up with milk coming out his mouth and nose, and has a hard time sleeping. I have tried every thing and nothing has helped, even the medicine for reflux isn't helping. Any way the doctor feels that the problem could be that his opening is to large and does not keep it in his stomach. He is sending us to a Gastroenterologist and I'm praying they will be able to help. The earliest appointment they had was not until the end of July so my poor little man has to suffer through it a while longer.

The last appointment was Friday in Chicago. This appointment was with the speech therapist. They are working with me on getting Taevin eating properly. DiGeorge kids tend to have problems while eating such as breathing the milk into the lungs, not getting a good seal, not being able to control the flow and choking. Taevin is having several of these problems and so we have to thicken his milk, use special nipples and next week he will be getting a swallow study to make sure it is not going into his lungs. (this can cause pneumonia) I never knew feeding a baby could be so complicated!

What a crazy week! He only has 1 appointment scheduled for next week so I will get a little break from all the running around. We are having family come to visit for 2 weeks. It will be so nice to see them and take my mind off all the medical stuff. I think we are going to have my dad bless Taevin while he is here. I am planning for July 18th @ 9 am and would love to have you there.

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.

Great news!

What a day!!! Taevin's breathing tube is finally out. He does still need oxygen but well take that over the breathing tube any day. His heart is back to normal rhythm and no longer needs the pacer. He is still on the heart medicine but is slowly being weened off. He no longer needs the morphine and most importantly (at least to him) he gets to eat. It's through the NG tube so not as tasty as he would like but at least he'll have a full belly.

Taevin (week 2 and few days)

Monday was a good day. They checked all his levels to make sure they were where they needed to be for surgery. Damian brought the girls, his mother and my mother up to see us.

Due to another very sick child, Taevin's surgery got bumped to Wednesday. I guess we should be happy that he is healthy enough to be the one getting bumped not doing the bumping.

Wednesday morning Damian and I got there early so we could hold him before surgery. It was such a bitter sweet day. I know that the best thing for him was to get this surgery but it was so hard to let my baby go knowing what he was about to go through.

They took him down around 7 am and made sure we didn't have any questions. We talked to everyone that had a part in his surgery to make sure they had all the necessary information and then it was time to say goodbye. Let me tell you, that was the hardest thing I have ever had to do! After lots of kisses from mom & dad they took him back and showed us to the waiting room.

Can I tell you how much I hate waiting and not knowing! It's so stressful and emotionally draining. After a few hours they came in to tell us that he was asleep and on the bypass machine. A few hours later she came back saying that things were going well and that the hole between the 2 chambers was patched. We decided to get a little lunch to help take our minds off things. After lunch and another hour of waiting she came back saying that they were finishing up and then would start weening him of the bypass machine. A few more hours passed and we were told that the doctor would be out in awhile to talk with us. After about 3 more hours the doctor came out. (I missed it because I had to pump again) When I got back from pumping Damian said that we would be able to go back and see him in about a hour. At this point I am so stressed and all I want to do is see my baby. What do you mean I have to wait another hour? Haven't I been waiting long enough? It has already been over 10 hours and I am done, finally they call us back.

That's when the tears start to really flow. (they have been off and on all day but now there was no holding them back) I guess I didn't realize how many machines, tubes and wires would be needed to support him afterward. I know it was open heart surgery on a 13 day old baby, but WOW! It was scary to see him like that!

Here he is hooked up to everything. There are tubes, wires, machines and medications controlling almost every function of his tiny little body.

At this point he is still completely sedated. He will need the breathing tube in for several more days along with morphine for the pain and a medicine to keep him from moving around.

On Thursday the sedation medicine was turned down and he started to wake up a bit. After a visit in the morning I had to leave to pick up my grandma from the airport and decided to spend some much needed time with the girls. After being gone only a few hours they called and said that his heart was not beating correctly and that he had to be placed on a pace maker and medication to help maintain a correct rhythm. We know this was a possibility so even though it is hard to hear it was not a shock.

I had lunch with Areya & Aniela and took them to the park to play. It was so good to see them and spend some time with them. I miss them both so much and can tell that they miss me too. After the park and a little accident (Aniela fell off the slide from about 5 feet up) I took them to get an ice cream cone. Than it was time to say goodbye and I headed back to the hospital. After about a 3 1/2 hour drive (I was sitting on the freeway forever in rush hour traffic) I made it back. Taevin had another arrhythmia so they had to up his meds.

Friday was a pretty good day. I spent most of the day holding his hand and rubbing his head to keep him calm. At this point he has so much done to him that he doesn't want anyone (but mommy) touching him, even to check his temperature. They were able to take him off the pacer for several hours but ended up putting him back on. They took him off the sedation medicine and lowered the morphine.

Today started out positive but ended up being a really hard day for both of us. He is now fully awake and fighting the breathing tube. He chokes and gags but they are still not able to remove it yet. I hate watching him struggle to breath and deal with that stupid tube down his throat. The doctor said that they are hoping to remove it by the end of the day. They have also put the NG tube (feeding tube) back in and are planning to feed him. He will be one happy boy if both of those things end up happening today. I'm keeping my finger crossed that they do!!!