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!!!

Friday....

On Friday everyone but Damian (he had to go back to work) got to come down again for a visit. The girls really loved holding their brother and boy did they miss me!! I couldn't keep them off me. (Good to know i'm still loved)

After the girls got done holding brother Damian's parents took their turn. While his mother was holding Taevin his heart rate shot up over 250. (It's suppose to be around 155) The doctor did an EKG and they found out he was having a SVT which is Supra Ventricular Tachycardia or as most people know it a Heart Arrhythmia. After about an hour it stopped on it's own. They did another EKG to check. He had 2 more that night. They now have him on a medication to block those electrical impulses. He may grow out of this or it may be a life long problem. He will have to continue taking the medication for 6 months to a year with out problems before they will ween him off.

As of now the surgery is scheduled for Tuesday morning. We are praying that nothing else happens. The pressure in his lungs (from the extra blood flow) is getting worse but being maintained by medication. The sooner we get this surgery done the better!

Saturday and Sunday went great! No problems. I got to give Taevin a bath and have been spending a lot of time holding him. It's hard not having him home but I am so grateful that he is getting the help he needs to make him healthy and that I get to be so close.

I just thought this was a cute picture of him and wanted to share. Babies sleep in some of the cutest positions.

Taevin's first week of life

On Saturday the girls got to see and hold their brother for the first time. They were both so excited and love him so much. It was so cute to see them hold him. Taevin loves to hold your finger and every time he would grab Aniela's she would giggle, it was so cute.

Aniela kept trying to take Taevin out of Areya's arms. She couldn't get enough of him. Unfortunately they can only be in there for 30 mins 3 days a week so the visit was shorter then they would have liked.

Our first family picture

Damian's parent got to see and hold their first grandson.

My mom was there when Taevin was born so she got to hold him before I did.

Damian and I made the trip again on Sunday for a few hours. We got to hold him and talk with the doctors. His calcium and glucose levels were off so they had him on supplements added to his IV. He is NPO which means that he does not get to eat. They won't allow it until after surgery because there is a risk that his gut is not getting enough blood due to his heart defect. We also talked to the ENT (ear, nose and throat) doctors. They did a test where they put a small scope down his nose to look at his vocal cords. They found an extra web like growth that was growing around his vocal cords and could be the reason for the hoarse cry.

Monday wen't well and they got his levels back to normal. I was able to get a room at the Ronald McDonald House and will be staying there until he is discharged.

On Tuesday his IV infiltrated which means the IV came out of the vain and the fluid was going into his arm. It left a really bad sore on his arm. Later that day they decided to put in a PICC line which is a central catheter line inserted in his leg and goes to his heart. With this in place they can draw blood and give medication with out having to poke him every time and he will no longer need the IV.

On Wednesday he had to have a few procedures. They wanted to do a CT scan and Echo to get a good picture of his heart. Since you can't move during the CT they had to put him to sleep to do it. While he was asleep the ENT's wanted to get a better look so they did a scope down his throat. They found out that his trachea is 35% narrower then normal which should not cause any problems and the extra skin is not a problem as of right now. They want to check it again when he gets older and starts talking.

This is Taevin still intubated, it took him over 3 hours to wake up.

It's so hard to see our child like this.

On Thursday morning I got a call saying that he had 2 seizures and his heart rate and o2 levels dropped. They wanted to do some test to try and find out what was going on. They ended up doing blood and urine work, an EEG, MRI, chest x-rays and a spinal tap. After all those tests the only thing that came back abnormal was his urine. He had a UTI and has been put on an antibiotic to treat it. This was not the reason for the so called seizures. I talked to the neurologist she told me that during a seizure your heart rate goes up not down and they did not find any signs of seizure activity. So what was it? We still don't know but since it happen they decided to postpone his surgery which was scheduled for Friday.

I want to thank Brother Smith and Brother Smith from my Arlington Heights ward who came on Wednesday to give Taevin and I a blessing. Thank you so much!!

I also want to thank every one for your thoughts, prayers, calls and support. It really does help to know that you are all there for us. Thank you!!!!

The big day is finally here!

Here is a few pictures of me in all my preggo glory. 39 weeks pregnant and huge!!! As you can see from the picture even my maternity clothes didn't fit any more.

Since my due date was on the weekend and since I didn't want to go over we decided to have them induce me on Thursday (They don't induce on weekends) Once I got there and got settled in they put me on the monitors and broke my water. It was amazing how much extra amniotic fluid I really did have! It was crazy to see my belly shrink by at least 2 sizes and the doctor comment to the nurse that I was creating a tsunami. After a while I decided to get up and walk to help things along but the monitors couldn't pick up the signal so I had to head back to bed. (not my favorite way to labor) After a hour or so and not much progress they decided to start the pitocin. Then the contractions started getting stronger and we had them do a quick check to see where I was (7 1/2 cm) At that point I was about ready for the drugs but decided to do a little more walking hoping that would help. I had to stay close so the monitors could pick up the signal, by about the 4th lap I was in to much pain and headed back to my room. I told the nurse I was ready for the drugs. By the time she made it back in the room (maybe 5 minutes) I was ready to push, the doctor got there just in time to catch.

Taevin Aleksander Deja was born May 13, 2010 @ 6:28 pm. He was 6 lbs 9 oz and 20 1/2 inches long. They handed him off to the NICU team who checked him out let me see him and then rushed him upstairs. He was doing well, breathing on his own and had good stats. His cry was very soft and hoarse ( he squeaked, it was so cute! ) so he would need to be seen by the ear, nose and throat doctor.

Once they got him to the NICU they hooked him up to the monitors and put a NG tube (feeding tube) in. He looked great and was doing well. They decided that since he was doing so well they could wait to transfer him to Children's.

After a while I was able to go up and hold him. He was so small and perfect! By looking at him you would never know anything was wrong.

On Friday afternoon they moved him to Children's Memorial Hospital. I was discharged shortly after and we went straight to the hospital to see him. After holding him a little more and talking to the doctors and nurses we finally headed home. What a long couple of days!!!

We are so blessed to have him here safely and as part of our family.

The end is in sight...

Well tomorrow is the big day. Our little man Taevin Aleksander will be here. We are so excited to finally meet him. It has seemed like such a long road already and I know we still have so much further to go. I can't help but wonder if I am ready for this. I still feel lost and don't really know what to think or how to feel. I have been trying so hard to keep it all in and hold myself together so I don't unset Damian or the girls but I am finding it harder to do so.

I know the lord sent us this special little man for a reason and that if he didn't know we could do this then he would have been sent to another family. We just need to be strong and remember that the lord is there for us. We are so bless to have such loving and supportive family and friends. We just want to say thank you to everyone for your thoughts, prayers, support, meals and everything else you have done for us!!!! We truly are blessed!!!!

Taevin 38 Weeks

I had my weekly appointment and Taevin is around 7 lbs 3 oz this week. I really hope he doesn't get much bigger then that. With all the extra amniotic fluid he has a swimming pool to move around in and has turned from head down to breech and then to Transverse (horizontal across my belly) I am just over 3 cm dilated. Woo hoo!!

So where do this leave us? Well as of right now I am scheduled to be induced on May 13th (if he doesn't come before then) If he doesn't make it back to head down then they will take him by c-section. We also run a slightly higher risk of complications due to his position and because the hospital is so far away. There is also the possibility that when/if my water breaks I could deliver the umbilical cord first, if that happens I would need to go to the closest hospital.

Boy this kid is a stinker! Always giving us something new to worry about. We are praying he turns and and that he decides to wait until at least Friday the 7th for Damian's parents to arrive.

After talking about it we decided to have his surgery done at Children's Memorial of Chicago. We both feel more confident with the surgeon and his experience with this specific heart defect. So the plan is that I will deliver at Evanston hospital and then within a hour or so of birth Taevin will be transfered there. As long as there isn't any problems he will have his open heart surgery on the 21st. They estimate that he will need to be in the hospital for about a month.

Pretty much any day now. I was thinking that it would be kind of neat if he came on Sunday. Wouldn't that be a great Mother's Day present? We are so excited to meet our little man and continue to pray that every thing turns out well.

37 weeks

Getting closer!!!! Only 20 more days to go! I am still seeing the doctor once a week where they do a non stress test, ultra sound to check my fluid levels and a quick visit with the doctor to see if anything has changed. As of last week I still hadn't started to dilate. Which with all the contractions I have had you would think I would be at least a 1 or something, but sadly no. Damian's parents are scheduled to arrive on the 8th and my mom on the 12th so until they get here to help out I guess I shouldn't be to eager for Taevin to make his appearance.

We have been trying to decide which hospital to deliver at and have Taevin's surgery done. The Children's Hospital in Chicago does not have a place for mothers to deliver so I would have him at Evanston and then they would transport him down to Chicago. Where as the Children's Hospital in WI has a hospital attached which I would be able to deliver at and be close to him. I am really having a hard time with the idea that I will not be able to see and hold my baby until released from the hospital. The other main things we have to take into consideration is the best place to have his surgery and to get his DiGeorge evaluated. Both hospitals have DiGeorge Clinics so that is not an issue at this time, but since his heart surgery is the first thing that needs to be addressed it ends up being the decision maker. Damian and I both felt very confident with the surgeon we talked to in Chicago. Whereas the one in WI kind of left us with a unsure feeling. The one in Chicago has had lots of experience with the specific heart defect which Taevin has and the one in WI was more of a general ped. heart surgeon. (He has only done maybe 30 of that specific surgery in 15 years)

I have been asking around and everyone I have talked to has had great things to say about the one in WI. I liked how personable they were and the NICU had a great set up. The commute will be easier to there and it will be easier for me to get a room in the Ronald McDonald House because we will be considered out of state. We didn't get to talk to anyone from the DiGeorge clinic or see the NICU in Chicago so that makes it hard to compare. This is such a hard decision, i'm running out of time and still don't know what to do.

I hope and pray that we make the right decision and that everything goes smoothly.

Aniela's 3rd birthday

Happy 3rd Birthday Aniela!!!!

Aniela turned 3 today! It is amazing how fast time really does fly. She is such a sweet girl and loves her sister, mommy, daddy and brother so much. Aniela loves to play outside, help mommy, playing with sister, and hang out with daddy.

Aniela was born April 7, 2007.

She was 7 lbs 8 oz and 20 inches long.

Aniela's 1st Birthday

2nd Birthday

3rd Birthday

We are so blessed to have Aniela as part of our family! She can alway bring a smile to our faces and we love her so much!

Happy Birthday Love Bug!!!!

Easter 2010

Happy Easter!!!

On Saturday we were invited to a friend's house for an Easter egg hunt and yummy food. The girls had such a great time finding eggs and playing with friends.

I had a great time talking and hanging out with these HOT MAMA's!

Thanks Lacey for having us over!

This weekend was conference weekend. What a wonderful way to spend Easter! It was so nice hearing the messages for my church leaders, it really helped me to remember the real reason for Easter and the lords sacrifice for us.

Here's what the girls found waiting for them Easter morning. They got new Easter dresses, a V-smile & games, outdoor toys and of course candy! After looking through their spoils they searched the house for all the hidden eggs. It was so fun listening to Aniela when she found one.

Later that day we went over to the MacLeod's house for Easter dinner. Thank you for inviting us and for being willing to share your Easter with us. After dinner we came home and got on Skype with my family in Utah. It was nice being able to sort of spend Easter with them. We love and miss you guys!!!