Another delayed update

Well, kids, time for another update that should have happened over a week ago. Namine came home last week Monday, and she's been doing great since.

We're still having the occasional low pressure alarms with the vent, but all things considered, I think we're retaining our sanity quite nicely. Of course Namine is a joy to have, and she's thrilled to be home.

Physical therapy (which comes to our apartment to see Namine) is very pleased with her progress, and has encouraged us to massage her face, in order to strengthen her face muscles. Namine, of course, does not mind being massaged - she seems to enjoy it very much. Namine is getting stronger every day; I've uploaded a new batch of pictures, and some of these feature Namine sitting up all by herself. Stil a little wobbly, true, but on her own none the less.

So hop on over to the picture gallery, and ooh and ah over our beautiful baby girl. And leave a comment here for us. We'd love to hear from you.

CHW

Hello All,
Namine was home for a record of 16 days this time. Paul and I brought her in Wednesday night with a fever, loose stools and mega suctioning. They did a bunch of tests and pumped her full of fluids and she still had a slight fever.

Yesterday the doctors put her on isolation and are keeping her there until they can figure out what is going on.

Today when I came in I took her temp and it was 39.9C so for the rest of you that is 103.4F. Not good. They gave her some tylenol to see if that will help but she is just so uncomfortable that she won't even look at me. I kissed her on the cheek and she rolled her eyes at me and turned her head the other way.

I feel so bad that she is sick. Paul and I have a theory that the reason she keeps getting sick when we bring her home is because of the re-use of suction cathetors. I am going to talk to Dr. Gordon and see if he can make it so that we can get at least double what we are allowed so that this doesn't happen again.

I wanted you all to know about Namine and what is going on. We love and miss you all. Keep praying that everything goes well.
Love,
Jessica, Paul and Namine Eiche

Has it really been nearly 2 weeks?

It's still hard to believe we're home. Namine is such a joy to have in the house - we've waited so long to have her all to ourselves. She's almost always full of smiles, a couple nights ago being an exception, but anybody would be a little crabby with only 2 hours of sleep. But I can tell you that our little munchkin scrunchkin adores being home.

We've been to the doctor twice; once for her cardiology clinic, and once for a suck-swallow study. Both went fine. Not only that, but we can officially start feeding her baby food!

You'll notice the site has changed again. In trying to iron out some of the problems people have been having, I decided to start over. I've tested this new layout in every browser on Windows and Mac that I can think of, and I don't see any problems. Commenting should be a breeze now, too. If anybody still has issues, shoot me an email: peiche at gmail.com.

I've uploaded a bunch of new pictures, which you can see on the blog page or the external photo album. And yes, there are pictures of her at home in this batch!

I'll upload a bunch more videos when I get home tonight. Actually, it probably won't happen until most of you are asleep, so look for them tomorrow.

On a somewhat personal note, I laughed so hard when someone at work complained about how much work their (normal) baby is. Sister, you have no idea.

I will say, though, we are extremely, extremely fortunate that Namine sleeps through the night. It's the machines that keep us up (or wake us up). The apnea monitor we haven't had a problem with, but that stupid vent alarms when there shouldn't be any. Low pressure, my foot. Namine just pushes air around the trach, creating that low pressure. Oh, well.

I can finally say it, HOME!

God has answered and is still answering all of our prayers. He has been working miracles from day one. He is with us no matter what.

I started this blog off the way I did because the rumors are true, Yes all of you that is right, Namine came home on Monday. It has been great having her home. We have been playing and singing and all sorts of stuff.

Namine loves to sit up and be in her boppy chairs, watch spongebob and play with her toys. Paul will upload some pictures of her being home when he gets home.

I need to get back to her it is almost time to eat. Call anytime:)

Continue to keep praying for us we still have a long road ahead of us. Love and hugs to all of you!

God's Blessings,
Jessica, Paul and Namine Eiche

Well What Can I Say.

Hello Family and Friends,
Well it is a day that has come and gone. Namine was supposed to come a long time ago, but that day was pushed back for one reason or another. Then she was supposed to go home a different day that was pushed off for one reason or another. Then she was supposed to come home Sunday and she couldn't because she was destating Friday night. She was supposed to come home on Wednesday but she was destating again on Tuesday night. She had a sleep study because of the destates and while doing the study she was destating, so no home again. Because they can't figure out why she is destating she will be here until they figure it out.

I have prayed, cried, prayed some more and I don't know what to anymore. My heart is aching for the day to bring her home. I have to trust that God is watching out for her and that He is guiding the doctors hands and minds to make the best decisions for her. We love her with all of our hearts and we want the best for her.

I hope that all is well with everyone. Continue to storm heaven for our little angel and we will be home soon. God's Blessings to all of our guests.

Love,
Jessica, Paul and Namine Eiche

We Hate Being Sick!!

Warm weather what have you done. You have made our allergies go bonkers, bonkers, bonkers so my poor husband is sicker than a dog. He aches and sneezes his ribs hurt from falling on the ice, our room is littered with Kleenex (oh wait he picked them up). Namine is stuck at CHW I hope she will come home soon. Oh warm weather please leave so we can not have Allergies.

Alright that was my little song. It was quite interesting. You should have been here while I was singing. :) Namine did not come yesterday because they wanted to run a couple of tests to find out why her heart rate has been high this past week, and to see if she had an infection in her leg. Well nothing has come back out of the ordinary with Namine, but as you can tell from above Paul is sick again.

They are going to give him until Wednesday and then they are going to send her home. It is just non-stop sickness. If we aren't sick she is. I hope that you all have a Happy Valentine's!

God's Blessings to each and everyone of you and the prayers that have reached heaven are being answered. We love you even if we don't know you, we thank-you even if we don't know, we appreciate you even if we don't know you. God is listening and answering and giving us miracles over and over again.

Love,
Jessica, Paul and Namine Eiche

SUNDAY!!!!!!

Sunday is the official day set by Doctor Gordon.  We hope that Namine can start to tolerate her feeds all day by today, or I don't know what they plan on doing.  She did alright yesterday, but she did throw-up and we think it was just because her feeds are too close together.  They keep uping the amount that they want to give her but her belly just can't tolerate all of that food as fast, and if they slow it down she will be eating all day long.  So I hope that they have it all figured out.

I am not able to be there for rounds today because I have to wait for the oxygen to be delivered, but I am going to call and find out what they have to say just to make sure that Sunday is still the day.

Well keep praying for us and we will try our best to keep you all updated.  Our love and God's blessings to all of you!!

Love,
Jessica, Paul and Namine

Not Home Yet

First off, my apologies. We've been a little lacking in updates, I know. We've been a little busy. Wednesday has come and gone, and Namine is not yet home.

Monday night, Namine was not doing too well - she was throwing up frequently, and so the doctors were not comfortable sending her home the next day. They did a floroscopy (I hope I didn't butcher that too badly) yesterday to see if the G-tube is in the right place. It is placed correctly, so we're not sure why Namine's not tolerating her feeds.

When she gets the Pedialite or partial-strength feeds (part formula and part Pedialite), she's fine. When her feed is just formula, she throws up, either out of her mouth or backing up out of the G-tube. Could be she just isn't comfortable with this new one, but at this point no one knows.

I would love to tell you when she's coming home, but I can't. Doctor Gordon (the special needs doctor we're in touch with the most) was running around like a chicken with its head cut off yesterday, so he wasn't able to give us a lot of answers. I hope we'll be able to find out more today.

Also, on the topic of the website: I know a lot of you are unable to post comments, for whatever reason. I believe I've narrowed down why and hope to fix it soon. I'm sorry for the inconvenience.

Home On Monday!

Hello Everyone,
Namine is coming home on Monday, February 2nd. Great Grandpa has a great birthday present:) Namine is doing well. She has recovered surprisingly well after having this heart surgery. She is down to 30% oxygen not only on the vent but on her trac collar and doing fabulous. She is stating in the low to mid 80's. They have her doing two 60 minute trials and they are bumping her up to 90 minutes tomorrow, and when she comes home we are going to work her up to more of her regular schedule of 5 hours collar, 2 hours vent, 5 hours collar and vent over night. The doc's would like to see her back on her regular schedule of collar for 24 hours but that is something that we have to work up to.

On top of her heart surgery two weeks ago she has 4 teeth on the top that are trying to work their way through. She has two teeth on the bottom that have come through, how exciting, but let me tell you she bites hard. She is so cute.

Yesterday Namine needed an IV put in so that she could go for her MRI of her shoulder today and she is a hard stick. She got so upset last night that she decanulated herself. Decanulated means removal of trac. She was crying so hard and with the vent pulling it just came out. Paul and I worked quickly and got a different one back in. It was scary but Paul and I are an awesome team and work better than a well oiled machine.

Namine is doing great after her MRI and hopefully we will hear results tomorrow and then we will update you all when we find out.

We can't thank you enough for all the prayers and support that you have given. We will continue to give updates over Namine's obstacles. Keep praying we still have a long road ahead of us.
Love and God's Blessings,
Jessica, Paul and Namine Eiche

Forth to the fourth

Hey everybody. Namine has been moved up to the 4th floor. This seemed like a pretty sudden thing, since Jessica got to the PICU room yesterday and they said, "hey, we're moving her upstairs!" But actually, the doctors tell us that recovery time after the glen procedure is a lot shorter than it was after her first heart surgery. Namine may be able to come home at the end of this week; on the other hand, it may be a few weeks before coming home. We'll let you know.

Almost all tubes out. Also, pink!

So Namine's trach was put back in, making her a much happier baby. Her chest drainage tubes were also removed; her left and right arterial lines were removed, but the one in her arm is still in. They also made sure that her new G-tube is in correctly before they start feeding her. They may do that tonight, but tomorrow morning is more likely. She's down from 12 pumps to 3. Less equipment is always a good thing.

You'll notice I've changed the overall color of the site. I hope it's pink, I can't really tell. ;)
I have also changed the tab links at the top. Click the photos and videos links to see!

Post Tube Addition

After they put an additional drainage tube in, Namine's stats improved significantly. Her temperature is a little high, but that may just be an effect of having surgery (especially heart surgery). She was still quite sleepy while we were visiting her, although she did open her eyes a few times, only to decide we weren't worth waking up for. :)

We suspect she's still quite uncomfortable. She has a line in her right shoulder, which is her bad shoulder, and her right hand is still hooked up to a lot of other tubes. She's still intubated, which we well know she hates, and they have her left arm restrained because she already tried extubating herself. Oh yes, we know we have a fighter on our hands.

Tomorrow they plan to put her trach back in, so they can extubate her. They also plan to start feeding her again.

Another Chest Tube

This morning the hospital called us. Namine 's chest was draining some more fluid, so they decided to put another tube in to control the drainage. Other than that, she's doing fine.

Surgery Finished!

We're here in the waiting room. Namine's surgeon just came out to tell us that they've finished, and everything went extremely well. All parts of the surgery went as planned; there was a little bleeding near the end, but they kept that under control. The nurse said that once she was taken off the bypass machine, her heart started beating on its own again. That doesn't always happen, and the nurse told us, "you've got a little fighter, you know." (Oh, yes, we know.) Now they've closed her chest back up and will soon be in the PICU, where we can see our baby girl again.

Thank you, everyone, for your prayers and support. God has truly blessed us!

Surgery Finally

Namine is going on Tuesday finally for her heart surgery that has been long awaited. She is the first case on Tuesday morning.

Namine had a hematoma on her right arm that burst on Thursday night. It was full of green and yellow puss and bled quite a bit, so they have it dressed up. They had to start her on antibiotics because they were not sure if it was infected or not. I pray to God that it wasn't infected, because if it was it might delay her heart surgery again. :( As far as we know right now she is still going on Tuesday.

Please keep us all in your thoughts and prayers and we will try and keep you updated. Love you all bunches!!!

GOD BE PRAISED!

Love,
Jessica, Paul and Namine Eiche

Surgery Tuesday

Well, change of plans. Again. The doctors tell us that - for sure, now - Namine will be going for her heart surgery this Tuesday at 7:30 am. Jessica and I are none too happy about all the changes and about-faces that the hospital has done with Namine, but it looks like things are finally settling into a final schedule.

No Surgery Thursday

I went to the hospital today after work, and asked to talk to the cardiology department. (Let me catch you up here, in case you don't know.) They had said originally that Namine's heart surgery needed to be as soon as possible, and they wanted to do it last Friday. But her heart surgeon was going to be away all weekend; he wanted to be around afterward in case anything went wrong, so they said they would do it this Thursday. But then someone else at the hospital told Jessica that they were only going to talk about her surgery on Thursday.

So I went to the hospital after work. Cardiology said (they didn't bother actually coming to talk to me, they just told the nurse, who told me) that they are, for sure, only talking about her surgery on Thursday. So much for "she needs her heart surgery as soon as possible."

Hopefully we'll know more after tomorrow, when Jessica will have had a chance to talk not only to cardiology, but Namine's cardiologists themselves.

Surgery

Namine is scheduled for her heart surgery next Thursday.  They had her on the schedule for this Friday but her surgeon was going to be out of town over the weekend and he wasn't comfortable with that so they moved her surgery.  It is going to be a scary one.  I know that the last surgery was scary, but this one is a lot more evassive and critical.  We need you all to pray that God guides the surgeons hands and that all goes well.  Thanks to everyone and Thanks to God!

Happy New Year!  God's Blessings,
Jessica, Paul and Namine Eiche

Namine's Exam

Hello Everyone,
Namine had her cath exam this morning/afternoon. She went down at 11 and didn't come back until 2:30. She was supposed to go down at 10, but I have no idea why it was so late by the time they came and got her. Well enough with the jibber jabber.

The cath doctor told us that her PA band has slipped and it is pinching the blood flow to one artery to her lungs and because of the way the PA band is now located it is deteriorating some of the veins and other arteries. So they are going to have to fix that when they go in for the second surgery. I don't know when the Glen procedure will take place all I know is that it will be soon. If not this week than next week. When I find out more from them tomorrow I will be sure to post.

Our friend Stephanie Brandt, whose listed on the side bar, is now back in the hospital. We ask that you not only pray for Namine, but for Steph and Jacob. Also keep all of the little kiddo's at CHW in your thoughts and prayers.

I hope that you all have a safe and Happy New Year! We love you all!!!!

Love,
Jessica, Paul and Namine Eiche <3

Rewind

Namine is not home. She was supposed to come home last Friday but her heart rate was still high and she had a few destats. We talked with cardiology and the resident and they decided to keep her over the weekend for further observation. They also wanted to keep her until the cardiologists had time to discuss her plan Monday morning. They discussed her this morning and decided that they need to do her cath exam earlier so that they have a game plan for her next heart surgery.

After the cath conference they came and talked to us and told us that they wanted to do her exam tomorrow. She will go at 10:30 this morning to have her exam. This exam is to show the doctors how her blood is flowing, how hard it is pumping and where exactly the PA Band is and how well it is working.

When we know more about when her next surgery is and what is going on I or Paul will try to post to update you all. Love you bunches!
Love,
Jessica, Paul and Namine Eiche

P.S. Keep the prayers coming