Finally!!!!!!!!

Here we are just minutes after they extubated her. My sweet baby girl! Words cannot express the joy in my heart. Twenty one days of not holding her are now behind us, thank the Lord! She is breathing great on her own...the first couple breaths were tricky for her. I think she forgot how to breathe on her own since the machines have been doing it for her for a 1/3 of her life. But she got the hang of it real fast and has been doing great. Here is Dave and his girl. Her little cry is so sad sounding. It is super soft and hoarse.

Is this picture priceless or what? This was about five minutes after being extubated. She is thinking, "Hallelujah, that tube is finally out!" She is such a little trooper. I was scared she forgot how to smile so this was so thrilling to see:) Love it. She is still on oxygen for a day or two and then....let's hope, we can go home!!!!!

Almost

Well, Sophie didn't get her tube removed today :( Maybe Friday. They want her to build up her strength a bit more. She was on a paralyzing medicine for two weeks and it made her very, very weak. She has not been on it for a few days now and she has been exhausting herself from opening her eyes, moving around, and breathing without a lot of help from the ventilator. Almost. We can definitely see the light at the end of the tunnel, though. That is a good thing.

You Go Girl!

Sophie has been doing great!!!! She has made so much progress in the last two days, and the doctors are impressed with what Sophie has been able to do. They have steadily been lowering her rates on the ventilator. She has been tolerating all the changes like a champ.

One of the med students who has been assigned to Sophie had a dream the last night that she was extubated and moving all around and doing great. She shared it with us and all the doctors and we all agreed that if it comes true this week, she is going to have patients lining up for her because of her visions :)

The plan is to continually lower her rates through out tomorrow and then if everything is looking good, Wednesday they will remove her breathing tube and see how she does. Can you believe it? I will finally be able to hold her, nurse her and hear her cry. I haven't been able to do that for almost three weeks. It has been, without a doubt, the longest three weeks of my life.

So please, keep the prayers coming for Sophie Mae. She has got a couple of big days coming up! I will let you know how she is doing.

An update and a new hat

Here is our little Sophie. She is sporting a new hat, thanks to Florett and a new blankie, thanks to Grammy. You might be wondering what the yellow thing is in her ear. It is an earplug, so she won't be so disturbed by the oscillator (the breathing machine she is on) and all the alarms that are always going off.

So, the plan for today is to switch her from the oscillator (a breathing machine that holds her lungs open and pulsates air into them - it breathes for her) to a ventilator (a breathing machine that supports her in her own breathing). So she will be going from not breathing on her own, to supporting herself with her own breaths. They think she is ready for the switch so they are going to give it a go. Worst case scenario would be to put her back on the oscillator for a few more days then try again.

Thank you all for your continuing prayers. I think little Miss Sophie has brought all of us closer to our Father in Heaven. What a blessing :)

Good news!!!!! She is back on the ventilator. The transition went very smooth, so that is great.

Baby Steps

Sophie's x ray this morning looked better.....yipee! (the lungs still look really bad, but not as bad as yesterday and that makes everyone happy.) and her bloodwork has been showing improvement. She is getting there slowly but surely. Thank you for your constant prayers. The Lord hears all of them....isn't that so comforting?

I think I can, I think I can.

Can I just say that these past eleven days have been the longest days of my life. We should be there for another two weeks. Dave and I don't care how long, as long as we get that little girl healthy again. I promise that once that day comes you won't be able to pry Sophie from my arms. Serious :) I try to think of those days instead of the fact I haven't held her for eleven days. That breaks my heart more than anything. Here is a new picture of Little Miss Sophie. They said we could use a blanket and hat from home to keep her warm. Grammy whipped two blankets out that evening. A friend from church knitted her a little hat. It felt good to see some homey touches in such a sterile enviroment :) She is on her tummy now. She likes it so much better and it gives her lungs more space. I can't wait to kiss on her again!

Ok, I think we are turning a corner. This morning she is doing good. We haven't had any episodes with her not breathing for 48 hours. That is the longest she has gone. She acts up a little bit when they have to move her for an xray, but her heart rate and saturation don't plummet like they used to. Her biggest problem is her little lungs. They are very very sick. The left one is collapsed and so is most of the right one. Poor baby.

On Sunday evening, they started prepping her for a procedure we felt very uneasy about. They had mentioned it to us that morning, but they way it was worded sounded like a longs ways off. It is a procedure called EMLS in which they carry the blood outside of the body, circulate it and oxygenate it so that the lungs can heal. Since Dave and I felt unsure about this procedure that carries a lot of risk, we both knew it was not something we wanted done to Sophie. That morning they made it seem like that was something in the distant future, so that was why it was so bothersome to see all these preparations being made later that day. They wanted to make sure she was ready just in case, yet we felt strongly that she wasn't that sick. We knew we had to turn it over to the Lord. Completely over to the Lord. Our prayers became even more fervent. We asked the Bishop to give her a blessing. Dave and I both received blessings. Our faith was put to the test even more so now than before. We decided to have a fast for Sophie. Our family, ward family and friends joined us. We knew the Lord would buoy us up, we just had to have faith. That night was a good night. The next day was a good day and the doctor said that she was making progress. This morning she said she is no longer a candidate for that EMLS procedure because her tests are coming back showing definite improvement. The Lord heard our prayers. He continues to hear them . Is'nt that wonderful?

Thank you all for your prayers. Please keep Sophie in them daily. She still is so sick. Thank you for all the help we have received. What would we do without the relief society? We have had dinners brought in nightly and it has been so wonderful. We can feel all the love for our little Sophie, and I can never express how much it means to us. Below is a picture of Sophie's room. My SIL Stacey took a bunch of pictures of Sophie when she was four weeks. She sent them to me and I put them up. We also have get well signs up. Feel free to send one her way and I will put it up. It makes me smile. Ok, that is the update :)

Spencer Levi Schramm

My Dreamboat turned 7 today. I cannot believe Spencer is 7. Spencer is such a wonderful boy. He has a heart of gold. He is so patient with others, is kind and very fair and loves to fix things. He loves his family and has promised that when he gets married he will come visit me on every birthday and holiday because he is gonna miss me so much. I love that! Happy Birthday Spencer.

Litttle Miss Sophie-An Update

It has been a week now in the PICU. No fun.

They do daily xrays of her lungs and they still look bad. The top of both lungs are collapsed and the left one is so congested that she is only using the bottom part of her right one. That explains why when she has these bronchiospasms they can't get oxygen to her very well. The other night she had one of these spasms (she's been having them about 4 times a day) her heart rate dropped to 50 and the oxygen level to 0. They had to perform CPR again :( THe good news was that they didn't have to use meds to get her going only CPR. When all of this happened there were at least 30 people running to her room to help within seconds. They have been taking such good care of her at UC Davis Children's Hospital. She definitely keeps everyone on their toes!

Last night she had another episode and now they are trying to figure out why there has been no improvement at all in the clearing up of her lungs....baterial infection....viral....they are trying hard to get to the bottom of this. They switched her to a different breathing machine that helps to keep her lungs open and gives her a break from working so hard. That has helped. Dave and I can't take much more of these episodes where she can't breathe. Hopefully today they will have some good answers for us. Pray for those little lungs to clear up.

Ok I wrote this this morning but it wouldn't publish so now I am adding a little update. All day today she has been good. Only one little episode but she recovered on her own. She is less puffy today and looking more like her beautiful self. Maybe I will take a new picture of her. Thanks for all your sweet prayers. They mean so much to Dave and I.

Super Quick Update

It is hard for me to call everyone with an update, especially when I am so drained. So I thought I'd do it here.

Monday 5/11 she had a pretty good day.

Tuesday 5/13 was not so good. She had a few episodes where she was not able to breathe again. Her IV also closed up so they spent most of Tuesday finding another vein. Luckily they found access thru a vein on her head. Very sad looking :( They were able to do a pik line in her arm which was good news (they weren't able to get one previously). It is so important to have quick access to her and that is what the pik line gives them.

Wednesday 5/14 is so far not great. She had another episode early this morning where she couldn't breathe. She also has a rash on her chest which is a sure sign of a virus. We don't know if it is just a horrible virus or a viral infection on top of the pertussis. I don't know when they will know.

I am so thankful for all your prayers. Keep them coming. My sweet Sophie needs them :) I miss holding her so much.

My Sweet Sophie

I don't think I can tell the whole story again, so here it is in writing. On Friday May 8, 2009 Sophie stopped breathing. THANK THE LORD that Dave and I were both home or else we would not have her with us. I had just got out of the shower when Dave pounded on the door yelling "Caryn, Caryn, Sophie stopped breathing!" I grabbed her and screamed, "Sophie! Sophie, wake up!!" Nothing. Dave dialed 911 and I was screaming hysterically, "Sophie! Sophie!" Dave handed me the phone and took Sophie. The dispatcher told me to calm down and listen carefully. She walked us thru the steps of cpr (2 breaths, 30 pushes) He did one round...still nothing. The dispatcher said to repeat it until the ambulance came. I made sure he had it down, threw on a shirt, grabbed Bridgete's hand (she had witnessed everything that was happening) and ran her over to the neighbors. All the while I am pleading with the Lord to not take our baby girl. Bridgete went willingly with her big brown eyes staring at me. I managed to reassure her that everything will be ok; when I myself was not even sure. THe police arrived while I was doing this. It seemed like eternity for the fire department and ambulance to show up (in reality it took three minutes). Eventually they came and ran as fast as they could inside. The police said, "Maybe you should stay outside while they work on her." I did and pleaded and begged with the Lord for Sophie's life I was sobbing and shaking uncontrollably. Soon, a big police officer came out and said, "She is breathing and she is going to be fine." I hugged him and said, "thank you." I stayed on the porch while they rushed her to the ambulance. I ran inside and grabbed some shoes and rode with them. I heard her cry and it was the sweetest sound EVER! We got to the hospital and they were able to stabilize her. She was tranfered two hours later to UC Davis Pediatric ICU. They are incredible there. I am so so thankful for the medical advances of today. Without them, she would not have made it.

They are suspecting Pertussis is what she has. They said she would be in there for 10-14 days. Today she is doing better (Monday the 11th). She would stop breathing but today she hasn't done that,so that is a good sign. She is real puffy from all the stuff in her system but she is still so cute. There are so many other things to tell, but I can't go into every detail. The important thing is that she is here.

Thank you for all your prayers and love and support. Our families have been wonderful and so has our ward family and friends and neighbors. It means so much to us. I thank the Lord that she is here with us. We love her so much. Still keep her in your prayers. I will try to get back here soon with an update.