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!