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

Home!

Today Namine comes home. She will have to go back in January for her second heart surgery which is earlier than they expected, but she is growing and doing what they wanted and now it is time. At least this visit will be planned. I am on my way to go bring Paul some lunch and then off to the hospital for me before we pack her up and her home. YAY!!! Well I should be on my way. I will post again later today if I remember:)
Love you all!
Jessica, Paul and Namine

The Best Christmas Gift!!!

Hello again from the hospital. I am sending you good news of great joy that will be for all the people. Today in the town of David a Savior has been born for you, he is Christ the Lord. This will be a sign to you, you will find a baby wrapped in clothes and lying in a manger. This is our best Christmas gift of all, and when he came down to live a perfect life for us and die so that we can go to heaven he gave us the perfect gift, his love.

Paul and I will be getting a special gift tomorrow. They are sending Namine home tomorrow morning. She will have to come back the beginning of January for her cath exam and then for her heart surgery but for now she gets to come home with us. So I am sending you good news from our family to yours. Thanks again for all of the prayers. God above is listening and answering our prayers.

Have a Blessed Christmas Day!
Love,
Jessica, Paul and Namine Eiche

Echo Cardiogram

I said that I would let you all know what the plan is for now.  They did her echo this afternoon and it came back inconclusive, because of the obstruction her lungs give to seeing her heart.  So the plan is to give her a shot of radiation so her blood glows under a special light.  They will give her the shot and take a scan of her body to see how her blood is flowing to her lungs and the rest of her body. 

They are going to try and get us home for Christmas but there are no promises so I think that Paul and I are going to pack up her Christmas tree and bring it with us tomorrow so that we can have Christmas Eve. with her.

Ultimately they are going to have to do her second heart surgery sooner than they thought.  I think she just got a lot bigger a lot faster than they expected.  Our schedule for procedures will be to get the radiation scan, then the first week of January she will get a catheter exam and then they will decide when to do the heart surgery.  It is late and I need to clean the apartment and get some things packed for our hospital visit tomorrow.   We love you all and miss you all very much.  We also can't thank you enough for all of your prayers and thoughtfulness and everything that you all have done for us.   God's Blessings to each and every one of you and a Very Merry Christmas and Happy New Year!!!!
Love,
Jessica, Paul and Namine Eiche:)

Back Again:(

Well folks,
We had been home for almost a week and throughout the week Namine's heart rate would jump to about 220 beats per minute. This happened a couple of times throughout the week, and we just brushed it off thinking it was our wonky pulse ox. On one other night her apnea monitor went off saying that she had high heart rate, I believe this was Thursday night that it happened. Over the weekend it progressively got worse. Her heart rate between Saturday night and Sunday her heart rate stayed between 170 and 199 while resting. Also her oxygen levels were going down. Not drastically like last time but they were hanging around in the low 70's. We called the special needs doc and she told us to come into the ER. We got there about 10pm on Sunday and they finally admitted her about 5:30am. They admitted her for observation. Paul and I were just beat by the time that they admitted her, we got all of the paperwork done and headed home for a nap. Not a long one though:(

Today on Tuesday they are going to do an echo cardiogram to see the blood flow to the heart. If they can't see what they need to see they will do a catheter scope. We do not know when we will be able to come home. If she is indeed in need of her second heart surgery I do not know if they will keep us at the hospital until they can do it or if they will send us home and we will come back a couple of days before her surgery. It is a game of waiting that makes the mama nervous.

I will post again when I find out what they found from her echo. We love and miss you all. Keep praying and keep storming is all that we can ask at this point in time.
God's Blessings,
Jessica, Paul and Namine Eiche

Home again home again Jigidy jig:) Again:D

Happy Holidays to you all!! Paul and I have been sort of out of it lately with getting new training and trying to figure out the nursing schedule and all of Namine's changes, so we apologize for not keeping you in the loop.

We brought Namine home on Monday of this week, and she is doing fabulous. It is nice that she will be home for Christmas. Her cardiac doctor is assuming that she will go in to have her second heart surgery in February. But if by chance she has to go in earlier then so be it.

Namine has been such a great blessing to our family. She is loved by one and all. Thank-you all again for your prayers and support. We love you all! and we also ask that you keep praying for us.
God's Blessings,
Jessica Eiche

Home on Monday

Hello Family and Friends,
We are going home on Monday December, 15. YAY!!!!! Paul and I have done our training on the vent/c-pap machine. We both get to spend the night at the hospital on Saturday :( The bed isn't the most comfortable. Whatever we have to do to get her home, we don't care. We have some nursing set up for when we come home and the rest will be figured out when we meet on Saturday.

If you all could email your addresses so that we can send Christmas cards I would appreciate it. We have pictures for you all if we can get them out on time:)

Namine is doing great. She is just amazing at how she just rolls with the flow. She is just a bright and cheery person. Whenever I need a pick me up I just look at the pictures on the site when I couldn't go and see her and when I could see her it was even better. She is doing great with all of her treatments and adapting to the vent/trac collar/HME. She is improving and getting better and it just amazes me to see her going through all of this and she still has a smile on her face. She is growing and getting bigger everytime I see her. She was 12 and half pounds on Sunday. I just can't believe how far she has come. She can hold her head up and she is starting to learn how to sit and it is just amazing.

We appreciate all of your prayers and cards and comments. Please keep the prayers coming, miracles do happen.

Love,
Jessica, Paul and Namine Eiche

4th Floor

Hello all,
Namine has finally moved to the 4th floor. We moved up yesterday. She is doing a world better than when we brought her in, but she still has a way to go. It is not her heart thank God, but it her lungs. The HME is causing to much stress when we have to bring her places and the cold and with it being viral season she got a double whammy.

The doctors are hoping that we will be home in a couple of weeks to home for Christmas, but they are not sure yet. The other hic-cup that we are having now is that we have nursing but no one is vent certified because she was never on a vent, but now they are thinking of sending her home on it, but only for the night. Paul and I have a care conference sometime with Dr. Noe and Cindy Gore and a whole bunch of other people but we have to wait to hear from them when it will happen.

I just wanted to update and give you guys the good news and I just have a huge favor besides continualy pray for us, if you leave a message can you say how you know us or how you heard about our website. I am not very good with names, faces yes, names no, so if you could please just let us know I would appreciate it.

God's Blessings,
Paul, Jessica and Namine Eiche

Thanksgiving!

Well I forgot to post last night, so I am doing it today. Paul and I went to go see Namine yesterday. I was finally feeling better, but not today. We got her dressed up in her baby's first Thanksgiving day outfit, well half of it. She is getting so big that she actually fit the onesie. Paul will upload the pictures tonight when he gets home. We didn't stay at the hospital and try there Thanksgiving dinner we went down to my sisters house, and like most people we will get to enjoy a second dinner tomorrow. You can never have to much Thanksgiving dinner. We all just wish that Namine was there to enjoy in our celebrations.

She was such a smiley baby yesterday when we visited it was nice. She didn't have any destats last night. The doctors are still trying to ween her off the vent. We think she is taking full advantage of being on it. She has learned how to blow raspberries and slowly learning how to make noise. It will be so awesome when she can make noise around the trac.

Hopefully by tomorrow I will be feeling better. This cold just keeps going and coming back it is getting annoying.

As far as Namine is concerned she is doing great. I think that she is missing her mommy and daddy and not being home, but we have to follow what the docs say.

One more thing before I let you all go. Paul and I are so excited we were driving in New Berlin coming home from shopping and we were looking at all of the construction and guess what they are building just down the road from us... a Children's Hospital Clinic. We are so excited, now hopefully when she has to go somewhere we can just go there instead of all the way to Wauwatosa. Ok well we will post again soon. We love you all and ask that you keep praying.
Love,
Jessica, Paul and Namine