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

Vent

Yesterday Paul went after work to see Namine and she was back on the vent. She had a couple of times where she destated and so for her best interest they put her back on the vent. One of the doctors said that they may have been rushing her and they don't want to do that. So it may just take a few more days before she can come off the vent completely.

I called this morning and the nurse told me that she had just one time last night that she destated and they suctioned her and she was fine. I pray that the rest of the day goes the same, but better. I haven't been able to see Namine since Sunday so I am hoping that after being on the antibiotic for 24 hours that it will be ok to see her.

I miss my little munchkin. Well I or Paul will try to post again tonight to keep you all updated. Keep storming heaven for our little angel and miracles will happen.

Happy Pre-Thanksgiving!
God's Blessings,
Jessica, Paul and Namine

Off Vent

Hello Everyone,
I just wanted to let you all know that we are still in the hospital, but definitely on our way home again. They took Namine off of the C-Pap yesterday and she is doing excellent. She is till on quite a bit of oxygen, but they are slowly weening her down. She has come a long way since last Thursday.

I have not been able to go up and see her because I came down with a sore throat yesterday and I could not get in to see the doc until today. They are putting me on an antibiotic as a precaution, but he thinks that I have strep, so it is best. It just stinks that I can't go and see her. All I want to do is hug and kiss her and never put her down.

Paul has gone to see her and stayed there for a couple of hours last night until she fell fast asleep listening to him sing. I am going to have to get him to sing into a tape recorder so that we can just play it for her all the time.

I will say the only thing good about being home by myself is the cleaning that I have gotten done. I just wish our dryer would quit breaking so that I could finish the laundry.

Well I am getting hungry finally so I am going to go and grab something to eat and I will try and keep you all updated as our new time to come home.
We love you all! Keep storming heaven, we need more miracles.
Love,
Jessica, Paul and Namine Eiche

Getting better

Hello all.

Namine is still in the PICU, but she's getting better. She's smiley again today - a big change for the better! They're weening her off the vent, so hopefully we'll be able to come home soon.

The emptiness of home without her is too much. It hurts, missing her.

night and day
there's a burning
down inside of me
burning love
with a yearning
that won't let me be
down I go
and I just can't
take it all alone
I really should be
holding you
holding you
loving you
loving you

PICU

Dear Family and Friends,
We have re-entered the hospital. We are in the PICU again. Namine started to have more secretions and became really tired and some what irritable. Namine was doing ok until Thursday morning when she started to have to be suctioned at least every hour if not more than that with all of her secretions, by Thursday night she was dropping her stats into the high 50's and having a very hard time breathing. We rushed her to the hospital where she needed to be bagged to keep her stats up. They finally got her stable and moved us to the PICU. She was just very irritable and unconsolable and no matter what I tried or they tried she was just not happy. At about 6:30AM they decided to put her on C-PAP. She is doing all of the breathing, it is just giving her a positive pressure to open her airway more. They are not thinking that we will be home by Thanksgiving:( Well I just wanted to update people and let you all know what happened. I am going to get back to her and try to get some sleep myself. We love you all and ask that you continue to pray for us.

God's Blessings,
Jessica, Paul and Namine Eiche

I wrote you all a book

Okay, kids. It's been a little while, but I think it's time for an update.

You know by now that Namine is home. Actually, she's been home for a week and a day, and her mom and I are exhausted. Happy, but tired none the less. On Friday (I think. The days blur together) we had to take her to the cardiac doctor.

Now, for those uneducated in the matter of trach patients, a sorority to which our little one now belongs, I shall explain something prior to my story. If you know the details, skip ahead to the next paragraph.

The air given to her by way of the trach is oxygen. Because this is essentially going through her throat and not her mouth (which provides humidity), she requires external humidity, and her humidifier machine is probably one of two pieces of equipment that is not portable (the other being her main oxygen tank itself, due to its size; its little brother is small enough, but it only holds about two hours' worth). To solve this problem in going places, Namine has what is called an HME (short for heat/moisture exchange), also known as an "artificial nose." It is a small devise that fits over her trach tube which, as she breathes, collects moisture for her. The problem is, it is more difficult to breathe with it, and small children must build up a tolerance for it.

Namine is up to 90 minutes on the HME so far. We left for the doctor at about 2:50 PM on Friday, and didn't get home until around 6 PM. That's twice what she's conditioned for, and she paid for it. She had a whole lot more secretions than she normally does that night, and the next day we ended up changing her trach because there was so much crap in it. She had to go out again yesterday (Monday) to her pediatrician, and she didn't do too well then either, even though we kept it within the 90 minutes.

Overall, though, she's a very happy baby. She smiles a lot, and I mean a lot. Mommy is teaching her to stick out her tongue. I'm not sure how I feel about that yet. Un-teaching that ought to prove interesting.

Last but not least, I want to draw your attention to the site. I've redesigned it a bit, with tabs at the top for photos and videos. I'm not yet sure if I'll put the slideshow and video bar back in. Leave a comment and let me know, will you? I've also added a couple links. One is for my sister's friend Stephanie Brandt, the other for the child of some friends we made through the hospital, Jacob Schultz. Keep them in your thoughts and prayers.

I've uploaded a bunch of new photos, and I've got another batch waiting in the camera at home. I'll post some videos when I get around to it.

Home again home again Jigidy jig:)

YAY!!! Were are home, as you have read from the previous post. Our first night was a little rough, but we got through it. Paul was the one that I thought wouldn't hear any of her alarms because he sleeps like a brick, but that wasn't the case. It was me that slept through the first one. I was so tired from not sleeping well previous nights and having such a crazy day that I was so out of it. Thank God that Paul was there. We work well as a team.

Even the next night Paul was the one that heard her before I did. So I am very thankful that I am not a single parent and that I have a huge host of family and friends that are willing to help out. My mother-in-law is helping during the day and my sister is staying with us while she works and she helps out at night, we also have my other sister and Paul's Aunt that is trained to help with her cares. We could not have asked for anything more.

I am so happy to be home. She is doing well. She has been sleeping a lot lately, but she has her awake times also so we get to hold her and hug her and squeeze her. Well I will write more later. Thank-you to all of you and God be Praised.

HOME!

It is now quarter after four in the afternoon, and Namine is asleep. Asleep, and in her own crib - at long last!
the rule for exclamations is
My mom picked Jessica and myself up at about seven this morning to go the hospital. We actually didn't leave until eight, because I had to get her car seat in my mom's van. (I firmly believe they deliberately make it nigh impossible to fit in a vehicle, although my mom says it used to be worse. I don't see how.)
use one or none
So we got to the hospital between eight thirty and nine, I don't remember. We killed about half the planet's trees in paperwork to discharge Namine and packed up the rest of her stuff. Fortunately, we went to the hospital yesterday and took home most of it. Otherwise, I think we would have needed another vehicle. As it was, we never would have made it without my mom's van.

So we hooked her up to her portable pulse oximeter for monitoring oxygen saturation and heart rate, bundled her up, and left the hospital. So many people said goodbye and good luck on our way out, it was very nice. I sat in the back with Namine during the ride home, which was fairly uneventful. She needed to be suctioned once when we were nearly home, but other than that, she was fine. She got a little upset, but I think she handled it pretty well for never having been out of the hospital before.

After getting home, the home equipment people paid us a visit and helped us get a little settled in - but by that time we had already set up pretty much everything except the apnea monitor anyway. Man, that home suction machine is loud.

So she's in bed now, and feeding through her G-tube. That gives me a little time to write a badly needed update to her blog, which I am wrapping up now, and Jessica a little time to relax. A particular someone keeps telling me my life was about to change forever. He's not wrong, but it had already done that; now, being home, it will change again. Now my wife and I can spend time with our daughter out of the hospital.

At least, until her next heart surgery, leg/hip/foot surgery, trach removal, and jaw distraction. I'm sure I'm forgetting something, but it's been a long day. God has been good to us; we're finally home. May He bless every one of you who keep us in your thoughts and prayers as much as He's blessed us.

Ninja edit!
It has come to my attention that several people can't figure out how to get to the most recent pictures, since the slideshow on the right displays the oldest photo first. Just click on the slideshow. It'll take you to the photo album, where you can view all pictures. :)

Happy Halloween

Hello Family and Friends,
We just posted our little cutie in her Red Hot Chili Pepper costume. I hope you enjoy the cute pictures. Also the one with her ghosty sleeper on that says boo on her bottom. It is just adorable.

Hopefully still next week.

We are waiting on Nursing so if anyone can help us we would appreciate it. Tell anyone to check out the children's website and apply there. We really need help.

Thank-you and we love you all.
Jessica, Paul and Namine

Home!!!!

Yes, finally the end is in sight. We finally heard from cardiology on Sunday, and they told us that they were going to give her some blood to try and boost her oxygen levels that way. They could not get the IV in on Sunday so we had to wait until yesterday. They got the IV in and the blood started and finished and her oxygen levels went from being down in the high 60s/low 70s to being up in the 80s.

I talked with a cardiologist that had been following Namine down in the PICU and she told me that they were going to start from scratch with her heart medicine and take her off of the lasix and see how she does. She was off of all of her meds for 24 hours and her echo looked like it did before. YAY!!!!!!!!! So now the plan is to do a sleep study and figure out if she needs the heart meds and if so which ones and all in all when does she get to go home.

This cardiologist Dr. Ganiyem (not so sure of the spelling) told me that if all goes well that she will come home this weekend. Which means for a trach patient on Monday!!!

Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above ye heav'nly host
Praise Father, Son and Holy Ghost.

Thank you for all that you have given us through your thoughts and prayers. We continue to storm heaven for not only our little angel but for all whom we have met on our journey.

D:

Well, we are not going home on Tuesday after all. The doctors had planned on putting Namine on C-Pap (not a ventilator, but a high pressure air flow that would assist her breathing but would not breathe for her) on Monday, but never did. We happened to find this lovely bit of information out on Wednesday, but that's a whole 'nother ball o' wax.

Anyhoo, they decided not to resort to C-Pap yet, because her dropping her stats could have been related to her heart. So yesterday they did an echo cardiogram, and cardiology took a look at it today. We haven't yet heard from cardiology, so we hope to find that out tomorrow.

:(

Well Paul and I have been sick so we haven't been able to go to the hospital. We call everyday to find out how she has been doing and the nurse tells us that she is doing fine.

We find out tomorrow if she will be coming home next week or not. We have to set up nursing, but I think that that will be done when we have to come home.

Paul and I have some training that we need to finish, but for the most part we are ready for her to come home, sorta. We have her equipment that was delivered last week that we need to set up, but that will be done this weekend. There is so much it is quite intimidating.

I will have Paul Post tomorrow about all the fun things that we learn from our conference.

Thank-you again to all of you for your thoughts and prayers, we need and appreciate them with utmost thanks.

Home in 2 Weeks

Well it has been a long wait, but we are hopefully coming home in two weeks. We had a care conference with the docs today and they told us that they are not going to do surgery on the artery until she has her "glen" procedure. Which is a sigh of relief for all of us. We do not know the exact day that she will come home they are giving us an estimated time of two weeks to maybe three weeks.

We have some more training to do with her equipment, plus there's the all new G-tube which requires training of its own, so it's sort of a good thing that she's not coming home quite yet. Then there's the matter of her nursing, which we have yet to get settled.

All in all, we're getting closer. Looking forward to when we finally have her home to ourselves!

Maybe, Maybe Not

Well the G-tube was a success, but we do not know when or if we will be able to come home. When they did the G-tube they also did another bronchial scope because she keeps dropping her stats. When they went down and took a look they found that there was a mass pushing against her left lung. This mass was described as being a blood vessel because it is pulsing. Now because of this we are not sure if we will get to come home on the 20th. Because it is a vessel we have to have a conversation with the cardiologist to find out what the next step is going to be.

On our way home tonight we bumped into Dr. Mitchel, he is the man that performed the heart surgery, we told him what was going on and he said he was going to go right away and take a look at the findings and that he would get back to us. I cannot say enough how much Dr. Mitchel is just the best doctor I have met. When we do find out what they are going to do we will let everyone know.

On a lighter note, I do not have the vac anymore and my 13 and a half cm hole is now only 2cm.

Please continue to keep all of us in your prayers and thoughts. If we keep storming heaven like we have been our prayers will continue to be answered and our efforts will not be in vein.

We Love You All!!!

G-Tube A Success

The doctor came back to tell us that Namine's G-tube operation was successful. The nurse told us beforehand that it would take an hour and a half, but I think it was a mere half hour, if that. They just came out again and told us that one of us could come back and see her, so I sent Jessica.

I'll get to see her soon. XD

G-tube Monday

At least, tentatively.

Namine is doing well with her feedings, but she's still unable to meet the volume required for her age and size. Consequently, she needs a supplement in order for them to send her home. The NG tube in her nose has to come out, so that means one thing: G-tube. The plan is for them to do the operation on Monday.

Ultimately, they want to send her home on the 20th. Since you are reading mere text, it cannot be conveyed to you the amount of joy and excitement I have typing that out.

Feeding

This past weekend Paul and I had a discussion with the speech therapist and the GI Team about possibly having to place a G-Tube.  We do not want her to have one unless it is absolutely necessary.  They had not really been working with her on her oral feeds and wanted to push the tube.  On Friday Paul and I said that they need to work more with her on her feeds so she can get practice and if they weren't going to work with her than they should let us do it.  So on Friday they let me feed her and she took 5cc's.  Saturday and Sunday she took 4cc's.  Which doesn't seem like much but she is getting better.  She is coordinating her sucking and swallowing nicely.  The speech therapist is still worried that she might be aspirating a little.  So when we feed her we have to watch her very closely to make sure that she isn't choking and that she isn't getting too stressed.  Also the special nipple that she has to use because of her cleft palate it is hard to get used to.

I am just very excited that I was able to feed her.  I can't wait until they tell us she can come home.  Paul and I are pretty much done with her trac cares and we are both excited and very nervous for her home coming.  We just hope that it will be soon. 

Thank-you for all of your prayers, please keep them coming.

THANK YOU!!!!

The benefit dinner was awesome.  There were so many people at the dinner and the concert it was just super.  I had a blast at the concert and also just remincsing with friends and family that I haven't seen in long time.

Paul, Namine and myself just cannot say thank-you enough for all of the love and support that you all have given, and continue to give.  There were so many of our friends and family and church members that came out to support us, but also many people from the community.  We just want to say thank-you and we love you all!

We also have some very good news about Namine.  Friday night during the concert Paul got a call from the hospital telling him that she had her suck swallow study and that she was not asperating at all.  YAY!!!  They started her feeding from a bottle on Monday, but because she is new to the whole sucking, swallowing, and breathing she is moving very slowly, but progressing nicely.  She took 2cc on Monday and yesterday while Paul and I were at the hospital she took 5cc.  So in terms of ounces she took 1/4 of an ounce.  So she has a lot of work to do but moving very nicely for the first time feeding out of the bottle.  If she keeps moving at this pace hopefully by next week she will be up to par as her feeds are concerned.  If she isn't than we have to consider a G-Tube.  A G-Tube is a tube that goes right through the outside of her belly and directly into her stomach.  We need you to keep storming heaven and as we have all seen our prayers will be more than answered. 

Thank-you to all of you that attended for your time and generous gifts. Also thank-you to all that could not attend, but sent your prayers and thoughts and generous gifts.

I am so blessed to be part of such an outreach project for the church, but also to see all of you and the support that we are receiving.  We are not alone in this journey here on earth and Friday night was way more than a show of that. 

So once again Thank-you to all of you!!!
Love,
Paul, Jessica and Namine Eiche

Trac Change and Cares

Well everybody, Paul and I have started the trac cares and changing. It was and still is scary. I do not like doing the trac changes but the tie changes are ok. It is still all a little nerve wrecking, but it is just one obstacle that we will get over, like all the others. I was so nervous and so scared for the first change that as we were doing it I started crying.

Today is her big day for her suck-swallow study, and from here we will be able to see when she will be able to start feeding from a bottle.

Today is also the day of her benefit dinner at St. Paul's Muskego. The dinner starts at 5 and goes until 7. There is also a concert afterward in the church with many different contemporary christian artists, this is $6 dollars for adults and children under 14 are free.

We are very blessed to have all of your love and support.

I said-uh, beef hot links

So we keep getting asked, when is she going home? Getting closer every day, that's all I know for sure. But aside from the typical Zen answer, the only thing left is feeding. Well, that and training.
When I say Hillshire, you say Farm!
Jess and I sort of did our first trach care today. I say "sort of" because it was mostly observing the nurses do it, but we both helped a bit. We're getting to be olds pros at the suctioning and changing, though. We do make a great team, something I've already known to be true since 2000.
Hillshire!
We also gave Namine her first bath today. I mean it was the first time that we bathed Namine, not that it was her first time getting a bath. Goodness, no one would want to approach even a baby as cute as ours if she were that smelly. But yes, it went well.
Farm!
And don't ask about the title. It's one of those in-jokes that would require waaay too much explanation.

Hold Me

Namine is now back on the fourth floor. Most importantly, this means that she's off the ventilator, hopefully for good. She's now on the humidifier (which looks sort of like the vent, but they're not the same). Some more great news, she can now be held. But remember kids, she's not a football.

Jess and I are being trained on caring for her trach. We've so far only done suctioning (getting mucus/saliva/other yuckies out of her trach), but tomorrow we'll start cleaning and changing the trach as well.

At this rate, maybe she will be home by the end of this month, after all.

Trach Collar

Hey guys. I went to visit Namine last night, and the nurse informed me that she (Namine, not the nurse) had the trach collar on since 9 in the morning, and she'd been doing really well all day. That girl always surprises me. Her trach site doesn't even look all gushy like most kids' new trachs do.

I uploaded some new pictures - check 'em out on the slideshow.

I've got PDFs of the benefit dinner postcards; the front and back are here and here, respectively.

Benefit Dinner

I am just letting you all know that St. Paul's in Muskego, the congregation that we belong to, is hosting a dinner for Namine. This dinner will be held in the school gym on September 19 starting at 5 o'clock PM.

There will also be a silent auction of various items in the gym. There is a concert in the church following the dinner. The concert is a couple of Christian vocalists that will be performing. I believe the cost of the concert is $6 for adults and children under 12 are free. If you have any questions regarding either of these events, you can call the church office or visit their website at StPaulMuskego.org.

Tracheostomy Complete

Wow, another update! This one bears better news, though.

It was barely 8 pm when the doctor came by to tell us they were done. She said it was a "textbook operation," that everything went smoothly. A few minutes later, they wheeled her by, so we were able to see her. She was awake and looking around.

45 minutes later, she was all situated in her new room in the PICU, fast asleep. She's knocked out from sedatives, and she's expected to be awake tomorrow. She'll be able to resume her feeds in 24 hours or so, and they're going to start bottle feeds in earnest soon. She'll have a chest X-ray around 4 in the morning, and I think tomorrow they're going to do a swallow test.

Tracheostomy Pending

Hey everybody. Words cannot express my frustration - scratch that. Anger doesn't even convey what we're feeling.

Jessica and I arrived at the hospital at about 7:15 this morning (Mom and Grandma arrived at about 7:30), with promises of Namine going off to surgery at 8 am. That was actually changed to 7:45, tentatively; they didn't have a room ready for her in the PICU, so the time she'd go off to surgery depended on that.

She still hadn't been taken away at 9:30, when Jess and I had to leave for her bi-weekly VAC appointment. When we returned, you guessed it, she was still there.

So here I sit, typing this out at 7:03 - that's in the evening, you understand - and Namine was just taken away to surgery. Understand that when I say we're "upset," that there is no word in the English (Mom tells me that's supposed to be capitalized. Thanks.) language that can convey how upset we truly are.

Namine's feeds were turned off at 2 am, in preparation for an 8 am-ish surgery (6 hours with nothing in her stomach). When they realized that she wouldn't be taken to surgery until sometime in the afternoon or evening, they started her on a "Pedialyte" IV, something that gave her nutrients and kept her hydrated, but did nothing for her already-hungry tummy. (Keep in mind that she's been kept on constant feeds, and I mean no interuptions, for the past 2 or 3 days.) Our normally happy and content baby, who doesn't really cry for anything, has been crying for the better part of a day because she's starving.
Yeah, I'm not happy with them.
So when Namine was taken to surgery, we were told that it'll be a good hour, maybe hour and a half before she's actually operated on. There's the issue of her partially cleft palate, plus the soft spot in the back of her throat (from the erosion caused by the oxygen tube before her heart surgery). All of this basically means that getting her intubated may take a long time. We may not get to see her until after 9.

I think that's all for now. I'll update again sometime tonight after she's all done.

New Layout

Well, doesn't this look different. Let me know how you like it. I got sick of the Blogger stock template and rolled my own.
If no one likes it, I'll revert.
We got a call from the doctors today; Namine will, for sure, be getting a tracheostomy tomorrow. I'm scared, but I will do whatever it takes for her.

I don't really have news news for you guys tonight, just apprehension. I mean, she's doing fine; she topped six pounds, she's breathing well, but she's just holding onto too much carbon dioxide. She's gotta breathe better than she can. And this is the only way.

There is something C.S. Lewis wrote in The Screwtape Letters that I find comforting. He describes the church - not the buildings, but the invisible Church - as "spread out through all time and space and rooted in eternity, terrible as an army with banners."

A New Video

Long Overdue Update

Hi, everybody. I apologize for the total lack of updates (something I promised myself I wouldn't let happen).

Since Namine came out of the PICU and into one of the general hospital rooms, she seemed to be doing better. She'd been given some feeds by mouth, and the general feeling was that she would get to go home in a week or two.

Then, a few things happened. On Friday of last week, Jessica and I got a call from the hospital that Namine's left leg was broken. There was a fracture near the top of her femur (thigh bone), and they didn't know how it happened. Also, they had tried to ween her off the oxygen they had her on (called a nasal canula), but she didn't do too well breathing completely on her own. When she gets agitated, her tongue still collapses to the back of her throat, cutting off most of her air. Let me be clear: she never completely blocks off her airway, but it's enough that she has trouble.

So yesterday, Jessica and I met with cardiology, ENT (ear, nose, and throat), and critical care to discuss her options. The doctors all agree that she needs a tracheotomy/tracheostomy. This means that she will have a hole surgically put in her windpipe to allow her to breathe through her throat instead of her nose and mouth, bypassing all the obstruction. (It was explained to me that "tracheotomy" is putting the hole in her trachea, while "tracheostomy" is the entire procedure. For our purposes, the two words are exchangeable.)

There is one caveat: since Namine has had so many tests as of late, she hasn't been continually on her feeds (Mommy's milk fortified with soy formula), and so hasn't had a chance to grow as she might have been able, although she is nearly six pounds now. So the doctors have put her back on her feeds, and are leaving her like that until Friday morning. If she is able to put on some weight (I forget how much the doctor said) and doesn't have to put forth a lot of effort to breathe, they'll postpone the surgery and see how she's doing next week. If she does have trouble breathing, or if she doesn't gain the weight they want her to (which means she's burning too many calories just breathing), then they'll go ahead with the tracheostomy on Friday.

This is gonna be tricky, because Jessica has a VAC appointment Friday morning. If they can do the surgery in the afternoon, then we should be able to be there. If the surgery is in the morning, then, well, we'll be there when we can.

Buh-Bye, PICU

Wonderful news! Namine is out of the PICU! She's now in a plain ole hospital room, once again with a roommate. She's being given breast milk in a bottle now - not very often, but they're starting her on it. So far, she's doing wonderfully. She had 7 cc's yesterday and 7 and a half today.

Jess and I finally got to hold her, the first since before her heart surgery. :D

Apologies, and News

Sorry the site's been lacking updates for a little while. We've been... busy.

To say that Namine was extubated is an understatement. On Sunday night - well, Monday morning around 1:30 - I get a call from the doctor to tell me they were extubating her. I'm confused, I say. Why can't you guys wait until tomorrow morning (I mean when normal people are up) to do it? No, the doctor says, she started pulling her tube out herself. We're just finishing it. Realization dawns. Oh, I think. Wow. So the doctor tells me she's doing well. Better than well. Her heart rate is as low, maybe lower, as right after she'd had heart surgery. Her oxygen sats are good, and she needs no help breathing at all.

So last night, I went to see Namine again. Because she has such a small cry, the doctors were concerned that her left vocal chord was paralyzed, similar to her diaphragm. If this is the case, then she may have some serious problems bottle- or breast-feeding, something she needs to be able to do before she can come home. So they wanted to do another scope.

Thankfully, the scope went well and she has movement in both her vocal chords. Her voice is so small because the breathing tube was in for so long. They're going to give her something to help with acid reflux.

Last night she was also moved out of her little glass container and into a crib. We'll have to see when she can start bottle feeding.

Post-Surgery, Again

Be warned, I've written a book this evening. If you like text, feel free to plow on ahead.

Hey, everybody. After being away from the computer for a couple days (but it feels much longer!), I have lotsa news of both my girls.

First, Jessica is back home, after being in surgery yesterday and spending the night at St. Luke's last night. She was originally going to have surgery at 7 in the morning, but the surgeon took one look and said this is too deep, we can't do this here (that is, the clinic room). So they did the surgery at around 4 in the afternoon.

The incision where she had her C-section was massively infected, so they opened it up some more - but not entirely, as we were afraid they would - and cleaned it out. She now has a device called a VAC attached to her, which drains the wound of yucky stuff. She will remain attached to said device until it is completely healed. She'll also be going to a wound care clinic 3 times a week. Got the first appointment there tomorrow.

Now for Namine. Yesterday she was extubated at around 11 in the morning. She surprised us all by breathing all on her own. She no longer has any airway obstruction - her too-small jaw, which is farther back than it should be, had been pressing her tongue against the back of her throat, blocking her airway. It apparently is no longer doing so, even though her jaw looks no different to me than since she was born. The bad news is that her paralyzed left diaphragm gets in the way of her breathing. I told you last time that it was going the opposite way - turns out that is untrue. Normally, the diaphragm in resting position is down. Well, Namine's left is permanently stuck in up position. This, in turn, prevents her left lung from inflating properly, so she quickly tired while breathing on her own and starting having trouble; the doctors had expected this, so the nurses were prepared to quickly intubate her again, though this time through the nose.

I'm gonna break off into a little stream of consciousness here, and go into squealing-parent-gushing-about-his-child mode. I heard Namine's voice for the real first time yesterday! When she was born, she didn't cry; remember that she had wet lungs and her airway was blocked. And boy, was she ever mad yesterday. Especially when they put on what my mom called her "aviator's hat" (I'll upload some pictures shortly - they're on my sister's camera). Once they determined that she could breathe on her own, they fitted her with this little cloth cap with straps that had a device attached which monitored her breathing. Of course, she doesn't have it any more because she's intubated again, but once the extubate her again she'll probably have that once more.

So anyway, once she was intubated again, the doctors told me that she'd need another operation, and soon - one called diaphragm plication, which involves "tacking down" her left diaphragm, so it wouldn't interfere with her breathing. They told me they'd want to do this in a day or two. So with that, I left to be with Jess before they took her away. (Remember, Namine is at Children's Hospital on Wisconsin Avenue, while Jessica is at St. Luke's on 27th.) While I was at St. Luke's, I got a call from one of Namine's doctors. They had an opening, and they wanted to do the surgery that same day. So I left St. Luke's, headed back to Children's. I signed the consent form, talked with the doctors, all that parent stuff and Namine was taken away for surgery at the same time Jess was. I cannot convey through mere words the amount of anxiety in waiting, not knowing what was going with my two loves. At 6 in the evening, Namine was brought back to her room in the PICU. The surgeon informed me that her left diaphragm had been severely elevated, and was no longer; the surgery went fine, no problems, and that he has total confidence that the next time she's extubated, she'll do much better.

Fast forward to this afternoon. I called the nurse taking care of Namine at around 4, since I knew I would be unable to get around to visiting her today. She had healed so well from yesterday that they had already taken out the drainage tube from the site - nothing was coming out of it anymore, so there was no longer any use for it. The doctors are now confident that she can be extubated tomorrow. They'll most likely do it in the morning. Natch, and I won't be able to be there for it, since Jess has her appointment.

Holy cow, can I carry on. Sorry about that, but there was a lot to tell.

Extubation Today

The last time I updated, I told you all how the doctors thought that Namine's left diaphragm might be paralyzed. Well, they did a flouroscopy scan, which revealed that it is, in fact, paralyzed. To clarify, it's not actually paralyzed, but it moves in the opposite direction. The doctors would actually prefer it not move all instead of moving opposite.

Tomorrow (well, today actually - it's after midnight) they want to try to extubate her. They initially said they weren't going to, since intubation (and she will most likely need to be intubated again) is not a benign procedure. But the doctors believe the benefits far outweigh the risks. They will be able to see if Namine has difficulty breathing, and if so, where the majority of the problem comes from - her blocked airway or her diaphragm. If it's from her airway, then she will for sure need a tracheostomy. If it's her diaphragm, they'll need to tighten it, like a drum. That will prevent the left side from going opposite of what the right side is doing (and the right side is functioning properly).

In preparation for tomorrow's extubation, the doctors are weening her off the respirator. It's remaining hooked up, of course, but tonight they are reducing the amount of work it's doing. If Namine responds well to that, then the extubation will be a go. If not, then they'll skip the extubation and go straight to planning for the tracheostomy.

We did have a little scare today, but it's better now. Namine's left lung was collapsed, because the breathing tube got a little too far down her throat; it was feeding air directly to her right lung, so her left wasn't getting any. After they pulled the air tube out a bit, her left lung inflated again. They did an X-ray of her chest area today at 5:30 pm to make sure, and the doctor said it looks fine.

Surgery

Hello Family and Friends,
Just to update you on everything that has happened within the past couple of days with myself.

The C-Section incision opened up and was infected once, opened up even more and just packed and left to heal. Paul and I were told that if there is a lot of bleeding and puss that we should call the doctor and come in immediately because this meant another infection. So this happened and we called and had a visit with the OB. Before we got there that morning when Paul was repacking the wound we noticed not only puss coming out of the wound but a puss pocket or blister. When all of this was mentioned the OB said no it looks fine, actually it looks really good, but by this time the pocket had popped and there was not any active bleeding or pussing. So I went home. I was told that if I did not feel well and if I had a temperature I was supposed to call the office and let them know. So late that night I had the chills and a fever of 101.0, so I called. "We are not worried about the fever and it does not sound like it is coming from the wound. But take two tylenol and call back in two hours if the fever does not go down." So I take the meds and wait. My fever goes up instead of down. I call and again they say the same thing except that I should come in tomorrow to see the OB. I tell them ok and go to sleep. I wake up and my temperature is down to 97. I call the OB and she tells me that she does not want to see me the fever is all part of the healing process.

By this time I can't go to see Namine because I have had a fever so I have to stay home. I sleep, some much needed, but when I wake up I do not feel well again. I take my temp and it is back up. I call again and I get the same thing, except this time she asks me why I am taking my temperature. I tell her because I don't feel well. The OB still doesn't want to see me. Once again because of the fever I can't go see Namine for the second day in a row.

It is now Friday night I am really not feeling well and I take my temperature again, why I don't know. It is up to 102.4, I call and again they tell there is nothing that they can do I should just keep up with the advil and tylenol. I continue and Saturday rolls around. I am feeling well but not great and no fever again. In the afternoon it spikes again but now it is up to 102.9. I call and you get the picture. Sunday 102.4 I call and....

Monday I go back to my old OB the one that started off with me at the beginning and he looks at my incision area and he says, "This is really infected you need to see a wound care specialist and you need to go today. I am going to go and call and set up an appointment for you today, ok."

What? is the question that I had. I knew it was infected but my goodness to barely even have to see it and say you need to go now, just a bit scarey. He couldn't get me in to see anyone on Monday but he got me an appointment on Tuesday, today. Paul and I head out to the wound care clinic in Cudahay, WI. They check us in and get us situated and they start their exam. The nurse starts by probing the area with a sterile Q-tip. A Sterile Q-tip is about 15cm long for those of you that don't know how long they are. I look down at my stomach and I said, "OH MY!" The Q-tip was all the way inside my stomach except what the nurse was holding on to. There is so much puss running out that she has to keep swabbing it up with gauze while she finishes her exam. The nurse practioner comes in and takes one look and says you have to go to surgery and have this opened and drained and cleaned and they will have to see how the surrounding tissue is doing and then we will decide on the best way to go for healing.

So yes I went to see the surgeon but she was stuck in surgery today so I have to go back tomorrow and have my c-section reopened and cleaned and drained and what not all to. When I get back if I am not hospitalized I will write you how I am doing. Otherwise Paul will fill you all in tomorrow. So Please Pray that all goes well. I love you all!
Love,
Jessica

New Week, New Worries

So I'm back from visiting Namine. I have good news and bad news.

The good news is that she's doing really well. Her numbers all look really good. Her breast milk is still being fortified with soy-based formula, and she's been off the lipids since around noon yesterday. She's also doing most of the breathing herself. She no longer has a fever from the infection in her trachea, and they'll be re-culturing her throat and breathing tube tomorrow. The prescription for her antibiotic medication, Tobermycin, is up as of tonight. Of course, if the culture comes back positive again, she'll be prescribed to it again.

On the other hand, doctors are also worried that the left side of her diaphragm may be paralyzed; apparently, this is a risk to all heart surgery patients. So tomorrow, she'll have a scan which will tell the doctors whether or not it is paralyzed. If it is, she'll be scheduled for a tracheostomy as soon as possible. If not, then she'll remain intubated until they decide on a good time to extubate her and see if she can breathe on her own.

Hello SOEL Families!

Paul, Namine and I want to thank you for all of your thoughts, prayers, and comments on the blog. We haven't forgotten about any of you, but wanted to just say thanks for everything you have done for us as we're keeping you updated on the blog. Please feel free to write comments to keep us updated on things that are happening with all of you. We love and miss you all.

God's blessings,
Jessica, Paul, and Namine

Not Today

Hello to you all,
Namine was ready for her big day last week:( She was unable to be extabated today. She was running a slight fever and her heart rate was a little high. So they started her on antibiotics and gave her some more morphine, which delays extabation even longer.

On Friday they started giving her a high caloric formula mixed with breast milk. Ever since she started that combination she has had a hard time passing bowels and she was getting real upset. Both Paul and myself are lactose intolerant so I asked them to switch her to a soy based formula today, so we will see how this goes.

Namine sent my heart racing today. And this is another reason why I asked for different formula. She was rotated onto her right side and she had some secretions coming out of her mouth so I wiped them off and I turned around to get some more gauze to wipe her mouth again and when I turned back around to her she was throwing up. She had it coming out of her mouth, her nose and she started gaging, what a time for the nurse not to be around. I finally found someone that came in and cleaned her up. She had it all over her little placement pillows and in her breathing tube and in her nose. With all of this in her breathing tube I was terrified, but she is ok now.

She was resting peacefully when Paul and I left tonight. We thank all of you for all of your thoughts, prayers and visits. Paul will upload some more pictures and videos tonight so have fun. She has her eyes wide open in some of them.

I am off to rest. My insicion still is not healed and packed with gauze, it is very uncomfortable. So off to bed for tonight and tomorrow.

Please keep praying and know that you are all in our thoughts and prayers as well.

We love you all!

Extubation Tomorrow

Hello again from Hospital Land!
Bored? Highlight the page!
Namine's breathing tube was scheduled to be removed today (a process called extubation). Of course the doctors want her alert for this process, since its purpose is to see if she is able to breathe on her own. Toward this end, Namine was supposed to be cut off from any more morphine doses.
You never know what you might find.
You can probably guess what I'm going to say. Yep, two vastly intelligent nurses saw my darling daughter in distress, and they said to themselves, self, this poor child is suffering, and you, yes, only you can ease her pain. with drugs!
You might guess I'm a little peeved. You'd guess right.
And the geniuses gave her two doses of morphine. consequently, they've (tentatively) rescheduled her extubation for sometime tomorrow.
Save the whales! Collect them all!
Jessica reminds me to mention that both doses of morphine were completely unnecessary. Both times Namine was in "distress," she simply needed her diaper changed.

Post-Surgery

I'm writing today's journal entry longhand in Namine's new room in the PICU (and typing it out much later). She's all situated here, and the nurse tells me that the doctors are very pleased with her progress, such as it is - so soon after her surgery.

Namine still has lines in her belly button, but they expect to take those out soon. She has two new lines, one in each hand, and an arterial line in her right wrist. In addition to the leads on her chest, the bloodflow monitors on her head and back, respirator, and the pulseoxes on her hand and foot, none of which is new, she has a tube for drainage from the surgery site in her side, plus two new monitors for blood pressure around her heart.

The sedatives, of which they are giving her less, are starting to wear off. I can see her squirming, and she has already opened her eyes a bit.

They have removed Namine's catheter, so she will be able to pee in her diaper (which, even though it's a preemie diaper, is still waaay too big) like a normal baby. (What, you didn't expect me to talk about pee here? This is a baby journal!) They have also put a tube down in her stomach, and will soon start giving her breastmilk. (To be sure, she's overdue. Jessica now has quite the stockpile!)

Her heart is steady, and she is a strong girl. Such a fighter! We'll keep you updated as things develop.

Surgery Done, Recovery Begun

The waiting room has a public-use computer, so I'm updating from there.

Namine is done with her heart surgery, and she is doing exellent. Everything the doctors hoped to do, they were able to do. The lead cardiac surgeon told us that it could not have gone any better than it did. Namine is now being situated and settled in her room in the PICU (Pediatric Intensive Care Unit), where we will be able to see her in roughly an hour and a half.

Thank you, everyone, for your thoughts and prayers. Someone obviously had His hand in today's events.

If I were writing this on paper, you would see teardrops spattering my words. But it's okay now; this time, they're happy tears.

She's not out of the woods yet - she has at least two more heart surgeries to go, plus her jaw and legs/hips/feet surgeries - but today is a major victory.

I'm going to go now, to wait with bated breath for the nurse to tell me I can see my daughter again.

Here We Go Again

Well, tomorrow's the big day. Jess and I will be out of touch - online, at least - until after the surgery.

See you on the other side.

Site Update

I've changed things around on the site a bit.

I added Namine's name in katakana at the top.

I removed the old photo slide show and put in the embedded one from Picasa. This new slide show allows the captions to be seen before clicking (and you can turn 'em off, if you want).

I removed Google's default "subscribe to feed" dropdowns because they weren't behaving properly, and manually put in my own. The first will add a Google Gadget feed to the site, and the second will take you straight to the site's RSS feed.

And I uploaded some more photos to the album.

Last, but not least, is a picture of Namine that I drew the other day. You can click on it to view the actual size. And no, that is not bubble wrap. It's pretty hard to draw a quilted blanket, in my opinion.



In-a-gadda-da-vida, honey,
Don't you know that I love you?
In-a-gadda-da-vida, baby,
Don't you know that I'll always be true?

Surgery

Hello to Everyone,
I am writing to tell all of you that they did the scope today and they found that the fistula is healing and it is about half the size it was last Tuesday. So the heart procedure is still scheduled for Tuesday of this week. It has been a very long past couple of nights so this post is going to be short and we will write more later:)
Love to all and thanks to all and keep up the prayers.

Love,
Jessica, Paul and Namine

Surgery Moved to Tuesday

I wrote on Wednesday that Namine's heart surgery is rescheduled for this Monday; well, that changed today. The doctors moved it to Tuesday. So on Monday, they'll still do the fiber optic scope to look at her throat (and how it's healed). If she's healed to their satisfaction, they'll proceed with the heart surgery on Tuesday. If not, I suppose they'll put off the surgery until it is healed. No one has given us a clear answer in this regard quite yet.

Videos Moved

I've moved all of Namine's videos to their very own channel (as opposed to grouping them by keyword in a larger channel). It may take a while for the changes to get updated on the blog, so you can check them out here in the meantime.

No Surgery Today: Addendum

We found out later today that the doctors do not believe Namine's throat is infected. I edited the previous post, but in case anyone is subscribing to the blog's feed, I wanted to make sure you received the update.

The other thing I want to mention before going to bed is that her heart rate has been pretty high for the past few days. The doctors hope she'll be able to wait until Monday for surgery.

Keep storming heaven's gates, guys.

No Surgery Today

I have some good news and some bad news.

First, the bad news. Namine will no longer have heart surgery today. The doctors discovered a hole in her throat, caused by the high pressure from the air tube. It is NOT infected, and they are confident that she will heal quickly. Since she needs help getting air, they have intibated her (they have put the air tube all the way down into her airway, instead of just past the obstruction of her tongue). The doctors have rescheduled Namine's heart surgery for Monday morning, but of course this also depends on how quickly her throat heals.

And now, the good news. The doctors have examined Namine's trachea, and have found that it is fine. They were worried that it would be narrow or have some sort of deformity, but to the contrary, it is normal. So, the only obstruction to her breathing is her regressed jaw and tongue, which will be addressed by reconstructive surgery at a later point.

I've got some more pictures and a video of our bundle o' joy (and I mean this literally - last night she was a little burrito) to upload, but that will have to wait until I get home. Another couple of days, I think. We'll see if we can stay in a parent room at the NICU again.

Thank you for all your prayers and support.

Quick Update, and a Video

Hello all. I've uploaded several videos to Youtube, and they should show up in the now-live video sidebar. I also want to draw your attention to one in particular, because Namine really opened her eyes for us last night.



I promised myself I wouldn't make any cooing noises at her, but you can see how well that turned out.

Wide Awake

Hello to all of you! We have some news from the cardiac surgeons and when Namine's procedure will be. They are going to do the surgery on Wednesday the 23rd of July. They are going to reconstruct her arch and clamp off an artery. This is the first surgery of many to come. This is not the original Norwood operation that they had planned for, but this gives them more time to let her grow and gain weight. They would like her to be at least 6lbs before they do the Norwood because of the shunt that has to go into her artery. This is all in layman's terms. Paul can go into detail and let you know what they are exactly going to do.

The exciting news that Paul and I get to share with all of you is that she was awake tonight when we were there. The nurse took her out from under the "Billy Lights" and took off her sunglasses and she was wide awake. She was looking all over the place and making faces. She was trying to focus so hard on the tube coming out of her nose that she went cross-eyed, so it looked liked she was making faces at us. Her eyes which we new were dark and possibly black like Paul's are not black, one is dark blue and the other is almost greenish-blue. Paul is going to upload a video that we got of her with her eyes open. You can't tell the color of her eyes in the video, just that they are dark. So enjoy the new pictures and have a wonderful night.

Thank-you to everyone that is praying. Keep it up and God is listening.
Jessica

Our Newborn Baby Girl

We are now the proud parents of a newborn baby girl, Namine Olivia Eiche. She was born at 10:13 AM on Tuesday, July 15, 2008. She weighed in at 4 pounds, 10 ounces, and she was 13 inches long. She was delivered by C-section. Namine has been admitted to the NICU (Neonatal Intensive Care Unit) in Children's Hospital of Wisconsin for all her problems:

Namine's jaw is too small, and is too far back. As a result of this, her airway is blocked. For the time being, there is a tube in her nose, pushed down her throat to keep her airway propped open. There is oxygen being put down the tube, but she is breathing on her own. There will eventually be reconstructive surgery (called a jaw distraction) to pull her jaw forward. In addition to this, she has a cleft palate. Contrary to usual cleft palates, however, where the lip and gums are usually also split, her palate is open near the back of her mouth. The doctors say that when they distract Namine's jaw, they will also close her palate.

Her heart has double inlet left ventricle heart defect, which means that instead of having two chambers in her heart, she only has one - the left ventricle. (If a child has only one heart chamber, doctors prefer it be the left, which is stronger.) She has heart surgery planned for Tuesday, but we don't know exactly what will be done yet - that will be decided on Monday. They will also probably put the air tube all the way down her throat for this surgery.

She has caudal regression. Her sacrum is deformed, which in turn has affected her thighs. They are shorter than they should be, and they do not have the ball-in-socket joints to her hips that a normal baby would have. She also has clubbed feet. At this point in time, we're not sure what kind of surgery she'll undergo for all this. Her airway and heart take first priority.

I just want to say thanks for everyone's continued prayer and support. We can't articulate how much it means to us. Lastly, I'd like to mention that I've created an online photo album for Namine, the slide show for which is on the right sidebar. I'll also upload some videos when I get the chance.

Baby Update

Dear Friends and Family,
I met with another doctor the reviews the ultrasounds and when he was scanning me I could see her little legs, or at least one of them. To me and this is my personal opinion it looks like just one of her legs is shortened. So keep praying because she keeps stretching:)

Also during the ultrasound I saw her mound of hair. She looked like she had a mohawk. It is the curliest I have ever seen a baby's hair. Also she has gained close to a pound in a week. Last week she weighed in at 4lbs 11oz. This week she weighed in at 5lbs 8oz. So that is a blessing, she will beefed up to go through the heart surgery. I and Paul and our families can not thank-you enough for all of your prayers and thoughts and concerns. We are blessed to have loved ones such as you. Keep the storms coming. We love you all:)

Love,
Jessica, Paul and Namine Eiche

P.S. The date that I will most likely have her is July 28. But I won't know for sure until July 20th when my OB returns from vacation. I will keep you all updated and If you know someone that I have missed please feel free to send this email to them.

Baby News

Hello to all,
It is June 30th and I have gone once again to have a Bio Physical Profile, and up until this point we (Paul and myself) believed that the baby had a mild form of caudal regression. Today we met with the first doctor that diagnosed the baby the first time and he was even more pessimistic this time around than before. The reason I say this is because the baby's body is growing nicely, all but her legs, so defects are little easier to see. What we were told today was that instead of having shortened legs, how can I describe this to make sense without hand motions, where her knee is supposed to be is her foot and the lower part of her leg is just not there, or if it is it is not developed at all and very very small. As far as the size of the baby she is now just over 4lbs and growing nicely for the heart surgery that she will have to endure within the first days of life outside the womb. As far as the caudal regression it is still in the air. No one can give any answers as how to fix the problem until they know for sure what exactly the problem is and how extensive it is. We range anywhere from amputation to have have shortened legs with prosthetics for movement. Being confined to a wheelchair or running with space age legs. We don't know anything until the day that she is born. The other information that we found out today is that instead of the baby being breech she is transverse which means sideways. So I will have to have a c-section, which will either be on the 28th of July or the 4th of August. The doctor doesn't want me to go into labor on my own because of her position. If my water breaks the chances of everything coming out but the baby are great and that is not good.

The good news that I have is that she has a ton of hair so she won't be a bowling ball like I was and that she is gaining weight nicely.

Paul and I ask that you keep all of us in your prayers and I will try to keep you all updated. Thank-you already for storming heaven, keep it up we need all the storms we can get.

God's Blessings,
Jessica, Paul and Namine Eiche

The Baby

Hey there you all.

I just want to update you on the news that we got yesterday from the doctor. The baby is a girl and this is how things are looking from here. She will have to have surgery right after she is born, because the valve pumping to the lungs is bigger than the valve pumping to the body. At anywhere from 4-6 months she will have to have another surgery to remove the valves pumping to the lungs and they will bypass the heart. Then when she is 3 she will have another surgery on her heart. This information you all know.

The information we got yesterday was a little more than disturbing. The baby has another defect that is called caudal regression. Basically what this defect is, is the lower half of the baby isn't growing properly. The tail bone is backwards and her legs are ten weeks behind the rest of her body. The defect is also known as a form of dwarfism. She also has two clubbed feet. I am not sure if she will be able to walk or even stand on her own.

From what we have read on the defect the people with this defect can't control their bowels, and there is a possibility that she will be mentally challenged. Well that has been my hell for the past couple of months and to top things off the doctor said that there could be other things wrong with her because of this defect that we won't be able to see until she is born Please pass this on to anyone that I may have forgot. Please keep us all in your prayers.

God's Blessings,
Jessica, Paul and Namine Eiche

Doctor Stresses

In December of last year, Jess and I found out we were pregnant. Okay, she was pregnant, but I think I might have had something to do with it, too.

Jess is diabetic, and that means the baby has a statistically higher risk of ending up with one or more defects. The doctor took her blood a couple weeks ago to do some tests, and he called us to say he was worried about spina bifida.

So we went to the hospital to have an ultrasound done - the equipment at the doctor's just wasn't powerful enough - to determine if the baby actually has spina bifida. As it turns out, she doesn't, but this story is not over. They saw a problem with the heart, but couldn't pinpoint it. So they told us that the baby has congenital heart disease. This may or may not, they told us, be operable. It also may or may not mean that the baby will die soon after birth.

I suppose knowing must be better than not knowing, but it didn't feel like it at the time. I feel better now, though. Read on.

We went to Children's Hospital's Herma Heart Center, one of the best places you can go for a child's heart care. They did an echo cardiogram and determined that our baby, instead of having two pumping chambers in her heart, has only one. And depending on the condition of her arteries connected to the heart, she may need an operation right after she's born. For sure, though, she'll need one at six months old and again at two or three years, to correct blood flowing in and out of the heart.

We'll know more in four weeks, when we go back. The baby's too small right now to see the arteries.

The news that our baby has heart disease is frightening. The prospect of the massive doctors' bills is daunting. but our baby can be operated on - the one-chambered heart cannot be made into a two-chamber heart, but it's something that people can live with. Our baby will live, and that is most important.

You may have noticed, I referred to the baby as "she." The doctor is 80% sure that it's a girl, so we've taken to calling it a her. If we do have a girl, we have a name picked out (if we have a boy, we'll have to do some quick thinking). The name we like is Namine Olivia. the first name is japanese, from the Kingdom Hearts games. According to what I've found, it means ocean wave.

Namine's Videos

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Namine's Photos

To view all photos, go here and here.