Baby Ethan Update - 12/10/08

Hello all. It comes that time again. Some news is old, so let us refresh you!

As of thanksgiving our little boy reached his full feeds and came off his I.V. We left the line in his head just to make sure he didn't need it. It was to be taken out approx. two days later, periodically being flushed with saline; however, this did not happen and we will explain why in a moment.

We started a home feeding regiment so that when he gets home, his schedule will work better with our sleeping schedule. With this schedule, we were looking real good to have him home by the new year. In order to get him to this schedule we needed to give him a larger amount of food in a shorter period of time. Since his body was not used to having so much food introduced at such a quick pace, his bowels could not keep up with the volume and he bagan to have a more liquid consitancy to his stoole.

At one point he was very awake and alert, cooing at everyone and every thing. Smiling like there were no worries in the world, and every thing was Honky Dory! When we introduced this new regiment, he became easily upset, very lethargic, and otherwise extremely uncomfortable all the time. So in trying to fix this, we added more enzymes to help absorb some of that extra liquid, and we added an antacid, and Imodium for diarreah. Guys, you should have seen the diaper rash this poor little boy had. On both legs there was scabbing that was probably 1/2 inch wide, by probably 3 inches long. On the cheeks there was severe scabbing that was probably 1" x 2", with a HUGE gouge that was probably 4 or 5 mm wide, probably an inch long, and easily 1-2 mm deep. If you think about it, a hold in your skin that size would produce a considerable amount of pain. He had this in between his cheeks.

Food began to seep out around his g-tube site, and has created an acid burn on his tummy where the liquid would drip. This can be attributed to him pulling on it, as it is currently his favorite toy.

After this, he started having bloody stoole, which began as speckling only, but then developed into full blood within a day. We stopped his feeds and put him back on his hyper-al yesterday. This is the reason why we did not take the I.V. out of his head.

The first 24 hours off his feeds gave his g-tube to have a chance to reseal itself around the tube, his skin to heal a bit from the acid food drips, and his diaper rash to get better. Today when we started his feeds again (a very small dose, over a very long time...1 tsp per hour) and he seemed much happier than he has been in days. We do not know the plan to increase his feeds, but before he can come home he needs to be consuming, and processing, and holding down approximately 4 cups in 24 hours. However, this is just an approximation that Tia and I came up with. Last time we got him on full feeds it took him between 15 and 20 days to get to the goal. At this point, we have started again at square one, and now we have to work our way back up.

Just to clarify, his bleeding did stop after his 24 hour rest. At this point we are not re-introducing his enzymes. We want to see how he processes his food without it. But our little guy is known to throw us a few curve balls every now and then. This could go very well, or very very badly.

He has been droppnig his weight the past week or so, but now he is stabilized and moving up again...or at least for the past two days he has.

We had our appointment with LifeCare Solutions to get his feeding pump, compressor and nebulizers for his home treatments. We are working on getting a vest for his CPT (chest percussion therapy), and an in-home nurse for approx. 16 hours overnight...if he ends up having the enzymes. Otherwise, a nurese is not needed.

So that is all for now. We will update you again in a couple of weeks, or if something HUGE happens.

Take care, and thank you all for your continued support!

- Kip, Tia, Riley, and Baby E -

small steps

Well today they finally got what I was trying to ask about breastmilk. It only took a few times of fighiting with the drs to make it click. I guess if i had used to correct terms theyw ould have gotten it better. I was asking for them to let me give Ethan 10ccs of breastmilk 2 times a day. As of right now we do that with formula and he does not really drink it, he will take about 2cc. The Drs were thinking I was asking them to start changing her formula to breastmilk. Yeah later in time I want to do that, Well I want to breastfeed him not feed him threw his gtube. But one step at a time. So today the dr came in and said Ok so i understnad now what you were trying to ask, yeah thats fine we can do oral stim with breastmilk. I was like ok thanks. But was it really hard for them to figure it out. So i guess i just need to sue medical terms when I ask for things. lol.
So They are talkign about discharge alot now, but in the same few minutes that we say soon they also tell us, oh we would like to keep him all winter if we could.
I guess once he gets home we wont have to mess with these drs anymore, it will be all differnt drs, whihc we have not met yet. We are going to tour the new hospital on tuesday. We have met Ethans CF dr and he is really nice.
So there is my update here is a picture for the day.

Baby Ethan Update - 11/28/08

Hi all!

So we got our family photos back today. They look great!

Here is the link:

http://imagesbyjen.smugmug.com/

Click on "Ethan & Riley - nilmdts"

Password is: "Murray" (it is case sensitive)

These pictures are open to download if you want. We own the copyright on them so you all can do anything you want with them. I hope you all enjoy!

So on with the update!

As of a couple days ago he finished his lipids, finished his hyper-al, and the IV has been capped off but will stay in until we can make sure he is gaining weight on his own. We expect to take his IV out in about another day or two. We have also FINALLY gotten him to full feeds and are now able to give him small amounts of food in a bottle as long as he is willing to take it.

Our Occupational Therapist (OT) has requested that we bring in banana, sweet potatoes, and other stage 1 baby foods to try and feed him that as well. We are continuing with his enzymes, however it is the enzymes that Ethan does not like very much; we are using them as long as the pharmacy cannot get the "beads" enzymes in...these will be the enzymes he will use until smart people can develop a better kind of enzyme.

Because we are done with his Hyper-Al we are starting him on some multivitamins, an antacid, table salt, and iron. These are all the things that we were giving him in his Hyper-Al that will need to continue being given for some time. His multivitamins, and salt will probably need to be given as a dietry supplament for the rest of his life. We are not sure about the antacid though.

We are going to start him on Bolus Feedings ("a larger amount of food given through his G-Tube over a shorter period of time. Much like giving a regular child a full bottle in one sitting") sometime in the near future. And we are just waiting on a home healthcare agency to come over and begin teaching us how to use the machines and equipment that Little Man will need once he does come home. However, we still don't know when home is...they're just wanting to get us a head start.

As of today he is still 22.5" long and weighs 14 lbs 10 oz. Yeah, our little man is just a little bit bigger. Tia also says that he has a diaper rash becuase up until just recently he has had a virgin butt! Sounds kinda bad, but that is what she said...you'll need to ask her!

He has become an avid smiler, and talker (we actually caught him and his roommate, Baby R, cooing back and forth at each other), and he holds his head up all by himself very well. For being hospitalized for so long he is developmentally behind by about a month in a half or so. He is catching up rather quickly though. To help him catch up even faster, once he comes home, we will have many visits from the OT's and the DT's (developmental therapists), the ST's (speech therapists) and all kinds of other friends.

Also, the hospital is STILL giving us the run-around about his circumcision. For some unknown reason, nobody over there is willing to help us figure out how we need to go about getting this done now considering there are not many doctors left that are comfortable enough with doing the procedure. We can possibly have it done with a Pediatric Urologist, but we don't even know if she will do it or not. If for some reason we do need another procedure done, we will have a different surgeon come do the procedure who we know is willing to do the circ. But for now, it is all up in the air, and the last time we asked the hospital about it they became extremely outraged at Tia for asking and basically told her to stop! This is the Neonatologists we are speaking about. But we get the same resistance from all the nurses as well. We are basically lost at this point!

So it would be safe to say that when this is all over, we will all be very happy not to have to visit Deaconess anymore!

So that is pretty much it for now. When something new happens, we will let you know!

Don't forget to check out the pictures. Take care for now!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 11/22/08

Hello Peeps!

Well, we have had enough progress to get you all updated again. So, even though he reacted poorly to the pavulon they gave him (which I was told from someone outside of the hospital that the reaction was normal), he has recovered quite well. We feed him through his G-tube about 29CC of formula over 4 hours every 6 hours (4 hours on, 2 hours off). The other day we started him on his enzymes again because he had been tolerating his feeds so well.

By the way, Ben! All the prayers are working...HE POOPED! lol

Ok, so what I mean by that is that after his reanestamosis, we were afraid that either more of his small intestines or his colon might not work and they were going to have to go in and remove more things. They did start to give him glycerine suppositries to kind of jump-start his blowels, but in the end he can poop and not need any help. This is a MAJOR step to him coming home. This is a key role in determining if he would need more surgeries or not. Because all this has happened, the feeding, the pooping, the enzymes, we can now start talking about going home. And today, we kind of did!

We are still very hopeful for Christmas, and now it looks like it might very well be. He is still on his Hyper-Al (hyperalbumin, his nutrients), but we are slowly wheaning him off of that as well. Once he is off of that, we will keep the IV in and flush saline through it for a couple days to make sure he can sustain himself without the Hyper-Al. If he can show us progress with that, then they will take out his IV (PICC line) that is in his head.

We have already gotten him off of is oxygen sensor since he was proving to us that he can get upset with out desatting (is that a word? the process of not going into a state of desaturation? what-ev!) Now if he desats we just wait until he starts turning blue. Sounds crazy, I know. But since he doesn't really do that, being able to take him off all his wires, and tubes and such makes us feel like he is a big enough boy to start taking care of himself.

the other day we had a charity group called "Now I Lay Me Down To Sleep" come in and do free family photographs with us. We should be getting the pictures back here in the next couple weeks. When we do, I will post some on here so you all can see. It is not our first family pictures, but they are our first professional family photographs. I can't wait to see how they turned out!

We have started oral and nasal stimulation (tastes and smells). It has come to our attention that babies that are in the hospital for long periods of time with nothing going into their mouth can cause them to have what is called an oral adversion. We know of a young boy who is 8 years old with his G-tube still in because he has never been able to get over his oral adversion. Also, we know of another young child who was in the NICU for 11 months, when he went home he could not stand the smell of the aromas coming from the kitchen...his mother moved the stove to the front porch and now cooks outside. We don't want either of these to happen, so we have started giving him things like bubble gum, peppermint candies, pretzles, all kinds of things for him to suck on so that he can get used to different tastes and smells...and he LOVES them!

Ok, so I kind of need to get back to work, but that is for the most part what we have been able to accomplish over the past couple weeks or so. He is doing so very well, thank you all again for all you have done for us!

Until next time, take care!

- Kip, Tia, Riley, and Baby E -

11/18/8

Well today is day 109 in the NICU. Is this ever going to be over? They tell us that we might be able to come home around Christmas. I could see that happening but who knows. One BIG hurd le Ethan has to overcome is to get up to full or partial feeds. At this point most of his nutrion comes from TPN. But he is takeing some feed by his G-tube. To be up tp full feeds he needs to take 60ccs an hr. Right now he is at 18 ccs per hr, at 11pm he will go up to 19 per hr. He gets 4 hrs on then 2 hrs off, Every 6 hrs his feeds go up by 1cc untill he gets to around 60ccs per hr. We will be starting Enzymes in a day or so. Im not sure what kind we will be using. If he cannot get up to full feeds they will talk to us about going home on Tpn.
We have one last hope to get his circumsision done and that would be to put a Broviac iv, but that one only be if he is going to go home on tpn. So only time will tell on this.
Well just a few more days of Tobi, we started on the 1st of october and the dr wants to continue untill the 21st. he is also on a few other antibotics but im not sure off all the names of them. The drs dont tell us what all they are becsaue they change them alot. The drs done tend to tell us a whole lot becsue we have found so many erros that we have started asking them about everything. So now they tell us we dont need to knwo every detail.

Baby Eethan Update - 11/6/08

Wow, this is another long one!

Ok, I figure it's time I give you a little more that what I wrote a week ago Tuesday. Too many of you have been begging to know what's going, for good reason, and I am leaving you all in the dark.

Last Tuesday, little man had his stomas connected ("reanastomosis"), and a Brochoscopy done (think of like an endoscopy, but down into his lungs). He was scheduled for his circumcision the very next day, but it was never done. Even though I told you all in the original email that he did well in the surgery, that information actually turned out to be quite different.

Yes, the surgery did go well, we had some confusion about having two apendixes removed (there is a story behind that). And the immediate post-op recovery was ok. It was the long term recovery, actually all the way until today, that was really hard on all of us...including the nurses. The night after he was recovering he was taking extremely badly to his ventilator and all the other things plugged into him. The nurses could not keep him calm, so they had to sedate him. The gave him his Versed, but it still was not enough to keep him from thrashing violently and risking tearing open his incision, and pulling apart the reanastomosis. So they gave him a paralitic called Pavulon (I will tell you some crazy stories about this drug later) to keep him from moving at all. In fact, the morning after that gave him that, the doctor called us and said, "if you are coming in, realize that he will look like a vegetable." What we weren't ready for is the fact that he looked like a water balloon. His whole body was so swollen that his face looked like someone smashed it into a wall with all their might. You could not distinguish his eyes from his forhead, or his mouth from his nose. It was all just flat...puffy, but flat.

Because he was so edemadous they had to give him lasics (most of you should remember him having that from the very beginning emails). It is a drug that helps him pee off his edema. This kid, before his surgery, was weighing around 12 lbs. He weighed in, after his surgery, at his worst, 14 lbs 14 oz. More that 2 lbs of water weight. This lasics was making him pee more than 1000 mL of edema every 24 hours. Now you and I will do that in one go, but for a person his size, that is really impressive...and good!

{I know I am missing something here...so we will save this thought until I can talk to Tia again and refresh my memory...insert this thought in a later email}

So things were going well, or as well as could be expected, when the doctors decided that his platelet count has been too low for too long to do nothing about it. This is something that we have been watching for some time now, but could not understand why his numbers kept coming back low. So the final decision was that his IV in his foot had been in for so long that it was giving false readins. You see, when you leave an IV in for too long, it can start doing weird things. Like there could be a blockage at the end of the IV, it can cause infections, all sorts of neat stuff. So they decided to relocate his IV to a different site. In the end, they had to put it in his head...again! It is a PICC line that starts at his head, and feeds all the way to his heart! We can give IV drugs straight to his heart.

The doctors decided to extubate him today. YAY! He is off the ventilator...again! YAY! This will hopefully help with getting rid of some of that edema he has also. He was WIDE awake before they began to take it out, and was sound asleep just moments afterwards. To Tia and I, we think he was finally so happy, and comfortable, to not have that stupid tube shoved down his throat anymore that he decided to take a good long well deserved nap.

So except for what I believe is missing from that little snippet above, I think that's about it as far as the update goes. If you wish to continue reading, I will tell you of some of the battles we have been fighting with these other doctors and whatnot...there are three of them.

The first came about when one of the Neonatologists came to Tia and said that it was in the report that the surgeon had done an appendectomy during his third surgery. SCREEEECH! everything comes to a standstill!!! Tia, "Doctor Throne sat at our bedside after his first surgery and told us that he removed his appendix then. How could he have done it again during his third one?!?" Confusing, huh? Well, we thought so also! It took something like 5 days and many arguements to get to the bottom of this. And here is how it went! Oh, wait...before we begin, I need to throw one more name at you...Dr. Cantlin (he is the Dr. that did the bronchosocopy...he is an Ear, Nose, and Throat doctor)

We call Dr. Thornes office and speak with his assistant trying to ask if she had any idea about his two appendectomies. She could not understand what Tia was trying to ask, she she asked her if she could do a little research and call Tia back. So she did. About 30 minutes later, she calls back and I answer. She told me that the final decision for the appandectomy was that it was taken on 8/1/08. Doesn't that sound like a familiar number? She continues her explination for a bit before I stop her clarified what the date was. She told me again that it was on 8/1/08. I told her, "Mam! That is the day he was born. There is no way he had an appandectomy the day he was born". She stumbled around for a bit and finally found the date. She then proceeded to tell me that there was no appandectomy done during his SECOND surgery, the one where he had the reanastomosis, which was done by Dr. Cantlin. Wait, something sounds funny here too! "Mam, his second surgery was to correct Stoma Necrosis, and remove necrotic bowel tissue." Her response was, "Did Dr. Cantin do that surgery?" "No mam, Dr. Cantlin is an ENT. Dr. Thorne did his second surgery." "OK, so then Dr. Cantlin did his reanastomosis...it looks like on the 20th of August." "No mam, the Stoma Necrosis was done on 8/20, and by Dr. Thorne. The reanastomosis was completed on 10/28, also by Dr. Thorne. What we are talking about with you has nothing to do with Dr. Cantlin." "Ok, so then what is the question." OH MY GOSH! ARE YOU FREAKING KIDDING ME?!?!? "What we want to find out is how is it possible that my son had two appandectomies." Her final answer, "I don't show anything that says we did." "Well, Dr. Thorne told Dr. Barsoti that he did. And that's what we want to find out." She said it must have been miscommunication between the two. She calls back a few hours later to tell us the same thing that a different Neonatologist told us. "Dr. Thorne said that he did the appandectomy during the first surgery. During the third he saw that the appendix stump was not quite tied off correctly and so, like tonsils, a small portion of his appendix grew back. He removed that small portion, and re-tied off the stump so that nothing will grow back again." YAY! Finally an answer!

The second one comes as no one will do his circumcision anymore because he has gotten to be too big, too old, and too sick. We don't have a docotor willing to touch him, and even if we could find one, we don't know if we will have the money to do it anymore. We did pay a pediatrition to come do it, but now that he does not feel comfortable, he has sent me my money back. Because this is considered a cosmetic surgery, insurance will not pay for it. Because he is so big now, they will need to give him a general anesthetic. Yeah, we get to pay for all of that also. What we don't understand is why the hospital wouldn't let the pediatrition in earlier when he was smaller and not as sick. Before the surgery! We don't get it, and they don't have a good answer for us! So now we are stuck! We don't know what to do. If they ever end up putting this Broviac in (a semi-permanent IV in his chest), we will get a different surgeon who can do the Broviac, and is also willing to do the circ as well.

Finally, the third fight, which is really not a fight at all, but stupid all the same is going back to Dr. Thorne's office. We tried to ask a very simple question today...when was his first surgery done. Was it 8/4 or 8/5? We have a consent form singed on the 4th, however, I also have a copy of the surgeons report that says the date of operation was 8/5. In this report, the very first line says that "Baby Boy Ruck was taken back to the operating room on this day of life 3..." Now wait a minute! How can the 5th day be his 3rd day of life? Also, there is some speculation of the NICU considers the first 24 hours as day one, or if they consider the day he was born as day one. They couldn't tell us that either. So we are sitting there in the NICU at his bedside with 3 nurses trying to figure out what day his surgery was actually on. I think I really pissed off one of the nurses when I mentioned out loud that how they do their paperwork really sucks and there are far too many discrepancies in his chart! But I don't care, I am glad that they know we feel frustrated by it!

So that is our fun week we have had.

Well, you want to know something crazy about this drug they gave Ethan, Pavulon?

Pavulon is a nerve blocking agent...a paralitic. Pavulon is also used with sodium thiopental as a lethal injection used in capital punishment in some parts of the USA. It was also used as the drug of choice by the mass murderer "Angel of Death" Efren Saldivar (check out this link http://en.wikipedia.org/wiki/Efren_Saldivar). Yeah, they are giving this crap to my 3-month-old son. How stupid is that?

Ok, this has gone on for long enough. Hopefully there is enough information here to feed the hoards for another week...lol! I am just kidding!

Take care to all of you out there that are praying for us. We appreciate each and every one of you! Keep your eyes open for a simple website we are putting together for Ethan. It won't have much, but it will have all his updates, pictures, and even a place to sign his guestbook and leave prayers for him that we can print out and read to him!

So until next time...which will probably be like another week...

- Kip, Tia, Riley, and Baby E -

p.s. Mom, because you asked, we got an answer for you! PICC = Percutaneous Intravenous Central Catheter

Percutaneous = Denoting the passage of substances through unbroken skin, for example, by needle puncture, including introduction of wires and catheters.

Baby Ethan Update - 10/28

Today our little guy had his 3rd and hopefully final surgery. There were a few things done! He had his stomas reconnected, he had a bronchoscopy where they looked into and took cultures from the inside of his lung. He had a feeding tube put into his stomache. And tomorrow he will have his circumcision. We are just biding our time until he begins to poop. Once that happens, we can put him back on some food. Once he is stable with his feeds, we can start talking about coming home.

It has been a long day, I am tired, and I really don't feel like writing any more! I am sorry this is so short! When I have more energy, I will write again!
Take Care for now!

Sincerely,
Kip Tia, Riley, and Baby E

Baby Ethan Update - 10/23/08

Hello all!

Again, I wish to thank all of you that visited Baby E last sunday for coming to see him. It was a wonderful turnout, and it meant/means a lot to us that you would take time out of your busy scheduleds for comming to support us! Thank you again!

Well, for some time now our little guy has not been being fed because of some irritation issues with his bowels. They tried to feed him a small amount of food and he ended up bleeding out his little stomas. So we don't really know what is going on there. They believe that only one loop of his small intestines is inflamed (or not functioning properly), so when they go to reconnect him, they will probably cut out that little piece also.

Our reconnection surgery is scheduled for 7:30 am next tuesday (10/28). We don't anticipate that this will be a heafty surgery, but knowing this kid, anything is possible. They will reconnect his small intestines, possibly remove the infected loop, do a Bronchial Endoscopy to look at his lungs and take sampls of tissue and fluid, and circumcise him all at the same time. Wow...sounds like a lot, actually!

So almost every day we have therapy time with him where we do stretches, and coordination things...basically we play with him. We have a neat little mat that lays on the floor, and we have toys and things and he seems to LOVE his play time with...well...mostly mommy! All the nurses say he is a big flirt because he always smiles at everyone, he is so cute! The other day his occupational therapist said that she was noticing that he was laying on his back and deliberatly swatting at his fish mobile that he has hanging over him. She was shocked at how well he was doing because, according to her, most kids his age (who have been bed ridden since birth) don't have the strength to fight gravity and lift their arm up that high for that long. So we were really pleased to hear that.

Last time we spoke I think I mentioned something about possibly moving to Seattle to continue/finish his ICU care. After much consulting, and debating among ourselves, Tia and I have decided that it is in Ethan's best interest to stay here at Deaconess, at least for the time being. If you have no idea what I am talking about, last time I wrote about the "political" things that needed prayer for. Some of those prayers have been answered, but not all...yet!

Well, in any case, I think that is where we stand at this point...I really don't know why I say that. Every time I email all of you, Tia always "reminds" me that I missed something...lol! But that is her job, to keep me on top of things!

Thank you again for all of your support! There is an end of the road out there somewhere.

Take care for now!

- Kip, Tia, Riley, and Baby E -

p.s. I really do hesitate to put this in here, I don't want to leave on a bad note. Tuesday afternoon, Tia and I were in Ethans room. I had left to go get some drinks for Tia and I and noticed that in the room that Ethan was in for the "viewing" they had another baby, TONS of doctors, TONS of nurses, and everything was all draped off. One of the nurses told me that thay had two little babies that were just born (premies of course), and one of them was the one in the room. She was telling me this as I was washing my hands and getting gowned up to go back into Ethans room. After I got back into the room, about 2 minutes later, Baby R's mom came in just absolutely sobbing! I went to her to give her a hug and asked what was wrong, she told Tia and I that as she was getting gowned up, she overheard the doctor in that first room announce the babies time of death. From what I gathered, the baby could not have been more than 1/2 hour old. It made sense to me now why when I went to go get the drinks that there were so many people in the waiting room crying. How devestating for that family! I think this time, you can give our prayers to that family. They need it WAY more than us right now! I tried to ask our nurse yesterday what happened, and because of HIPAA, she could not say anything...understandably.

p.s.s. Two of Ethans roommates have been able to go home. Baby K and Baby Z are now at home with their parents. We are very excited about that. We are friends with Baby K's parents (My sister actually graduated with the mom, so she ends up being a long time friend of ours), and she says that Baby K is doing great. We don't know anything about Baby Z, but our best wishes goes out to that family as well. Baby R is still having a rough go! Every time they get him to a stage that he might be able to go home, he slips back into a stage of intese care. We are really good friends with his parents, and they are struggling much more than us. They have been there since May 15th and there is no end in sight for them. They stay positive as much as they can, which is good. But it is just a mask, and Tia and I can see that!

Ok, that's all!

Baby Ethan Visit 10/19/08

Hello Peeps!

Please remember that today we are having our Baby E "viewing" at the Deaconess MC NICU from 1-3pm ONLY! The unit has been very accommodating in helping us set this up, but while Ethans nurse is in the viewing room with him, they need to find a substitute for her other baby she is caring for. So when 3pm comes, she needs to get back into that room to relieve her substitute.

Also, Ethan will be hooked to a bunch of machines that helps him breath, feed, give nutrients, and give medicines. It can be all overwhelming at first, but don't be afraid, this little guy is TOUGH!!! Grrrr!!!! Just know that most people we take in there for the first time tell us that it was really hard to see and get used to! Just want to warn you all!

Anyway, I am excited to see you all again, for some it has been FAR too long! The directions are posted below just in case you may need them again!

God bless every one of you, and thank you all for your continued support!

- Kip, Tia, Riley, and Baby E -

DIRECTIONS:
- We take the Lincoln St exit and turn right at the first light (I believe it's 3rd st)
- Stay in the right lane and turn right on Wall St.
- Take a right on 5th st.
- The first entrance you come to is the one you want to take. The bulding on the right is the Mother Baby unit. That is the entrance you need to go in
- If you follow the driveway around to the right you will enter an extremely small parking garage.
- In this parking garage you can park ANYWHERE you want except the Neonatologists parking. This garage is not patrolled by security because they know that parking is limited. You will not get any sort of ticket if you park in a spot that is not designated for you. JUST PARK ANYWHERE!!!
- Go in through the front doors and take the elevator to the 3rd level. Make a right out of the elevator, make a right at the hallway (a large fish take will be on your right), and go through the double doors. When you look to your left you will see another set of double doors that will say check in with the staff. You can do that if you want, but there is no need. To the left of the double doors is a small waiting room, that is where I will be, and that is where you will need to go!

If you need more directions, please feel free to call me.

We look forward to seeing you all there!

Take Care,

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 10/11

First things first! We have arranged with the NICU for a "viewing" of sorts for anyone who wishes to see him. Next Sunday 10/19 from 1pm - 3pm we will have Ethan moved to a room that has a viewing window. We encourage anyone who wishes to see him to join us. Tia will be in the room with Ethan to demonstrate what we do on a daily basis. I will be in the viewing room with all of you incase you have any questions. There is no need to RSVP or arrange a time. Just show up. Directions will be included at the end of this update.

Ok, so not a lot has changed. Our little boy is doing fairly well. He continues to gain weight and is now up to 11 lbs ??? oz.
He has begun to desat (drop his oxygen level, it means desaturate) every time we go in for care, or a feeding, or play time, so the unit has put another nasal cannula in again to help regulate his oxygen levels.

The Occupational Therapist (OT) has set up play time with him every day to help with his development. Her and Tia have a little mat that they lay on the ground and we get to play with him. I haven't been there yet to do that, mostly because we just started this about two days ago, but Tia has and said that it was a lot of fun.

We have decreased his feeds again because he continues his dumping thing. We give him 6 cc (which is like NOTHING) of straight breast milk in a bottle, and send the rest of his 30 or so cc of formula idown his feeding tube.

He has developed a slight cough, and his CF doctor has started testing for all sorts of things that could be causing this cough. Everything from the common cold, to clamidia. We even did a very specific blood test to tell us what kind of bug to look for. Even that did not yield any results. So we are now giving him an inhaled steroid.

Again, I do apologize that these updates are so few and far between, but like I keep saying, I can't update on anything if there is really nothing to update on.

I will say this as a last piece of...thing! We are having some political difficulties with the staff at the NICU. We could use prayers for...well...for sake of the reputation of Deaconess, lets just say that God knows what we need.

Thank you all for everything!

DIRECTIONS:
- We take the Lincoln St exit and turn right at the first light (I believe it's 3rd st)
- Stay in the right lane and turn right on Wall St.
- Take a right on 5th st.
- The first entrance you come to is the one you want to take. The bulding on the right is the Mother Baby unit. That is the entrance you need to go in
- If you follow the driveway around to the right you will enter an extremely small parking garage.
- In this parking garage you can park ANYWHERE you want except the Neonatologists parking. This garage is not patrolled by security because they know that parking is limited. You will not get any sort of ticket if you park in a spot that is not designated for you. JUST PARK ANYWHERE!!!
- Go in through the front doors and take the elevator to the 3rd level. Make a right out of the elevator, make a right at the hallway (a large fish take will be on your right), and go through the double doors. When you look to your left you will see another set of double doors that will say check in with the staff. You can do that if you want, but there is no need. To the left of the double doors is a small waiting room, that is where I will be, and that is where you will need to go!

If you need more directions, please feel free to call me.
We look forward to seeing you all there!

Take Care,

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 9/29/08

Hello again, all!

I figure it is time I write you all again. The reason it has been so long since my last update is if there is no subject matter to write about, no sense in writing.

Things are still moving very slowly for Baby E. He is still in the NICU, however, we did get the official word that he is no longer the sickets baby in the unit. Actually, Baby R is the sickest baby right now. For all your information, we had lunch with Baby R's parents yesterday, they are doing pretty well. Thank you all for your thoughts and prayers for them.

The other day, Dr. Thorne (surgeon) ordered a dye test of Ethan's lower section of his small intestines. The results have not been viewed by Dr. Thorne yet, but the Neonatologist said that it looked a bit small (which is to be expected), but no blockages. Reconnection of his stomas could happen within the next couple of weeks...possibly.

We have been able to get him to go back to eating partly breast milk, and partly formula. We are able to hold him as often and as long as we want. He has given us some GREAT smiles (I think we have some pictures of it), he is very alert and aware of his surroundings.

He has developed a dry cough, which we are testing to see if it is viral or not. The CF doctor thinks it might just be the common cold. It happens this time of year.

Other than that, not a whole lot has changed for this little man! We will keep you posted, just remember, not a whole lot happenes all at once anymore! This is a good thing!

Sincerely,

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - something different 9/17/08

Well, this is an update of a different sort!

I can't remember if I wrote the other day about Ethan being moved to a different room or not, but he was because one of the other babies in his room (for sake of privacy, we will call him Baby R) contracted a viral infection. So Baby R is in quarantine and Baby Ethan and his two other roomates were moved into a different isolation room.

The only thing the nurse would tell us is that Baby R was scheduled to leave in a week. Now he won't be leaving for quite some time. Baby R developed this viral infection while Ethan was still in his room. Although the culture came back negative, Ethan was still exposed to it.

It gets worse! Way worse!

We met with Baby R's dad in the parking garage. We have become friends with his mommy and daddy, so we speak quite frequently. Daddy told us that the nurse had to put a feeding tube in the other day. When she did, she did not know that the tube went down into Baby R's lung instead. Not knowing this, they fed him 80 mL of milk into his lung. The only way they noticed that something was wrong was when Baby R was not taking his feed very well and acting kind of funny! Go figure! So needless to say, the parents are kinda pissed. For those of you who are wondering, they have already spoken with a lawyer, and have a plan in place.

Tia went back to the hospital later that night to go feed Ethan a second time, and the neonatologist came in and told her that Baby R had a deadly strain of the Influenza Virus. Baby R has been cultured twice, and all the other babies have been cultured once. All cultures have come back negative. We wondered why he was telling us, but I am sure it is damage control because our little boy had been exposed to the same influenza virus for almost 2 days.

The thing that strikes us a little odd is that Baby R's daddy didn't mention this to us. We don't think the hospital has told Baby R's parents that their child is lying up there on his death bed...which is what they told us.

Our confidence in this staff is pretty much...gone!

This is what we would like prayers for. First and foremost, Baby R and his health. His mommy and daddy, and their patience and trust with Deaconess. Thirdly, for wisdom or knowledge, or whatever it is the doctors need. And finally for Baby E and the rest of the babies in his room that were exposed to the influenza virus.

Thank you for listening, and thank you for your continued support!

- Kip, Tia, Riley, Baby Ethan, Baby R and his mommy and daddy -

Baby Ethan Update - 9/14/08

Well, it comes that time again!

So today we weaned him totally off all his pain meds. I can only imagine how irritable he must be feeling. Today the doctor said he seemed to be having a hard day, but when we were there he was smiling real big at us...so we had to disagree with her.

Little man is trucking right along. We have been able to get him from half strength formula to full strength breast milk...yay! With one setback. He started having bloody stool. So we put him back on formula. We have started him on his enzymes to help his little body digest his food. They come in little itsy bitsy teeny tiny beads that he has to get into his itsy bitsy teeny tiny belly. Basically it just puts the enzymes in his digestive tract that his body cannot produce. However, these beads will cause all kinds of sores if they get stuck in his cheeks. So it is paramount that we find a way to get these things into his belly fully. To just put these things in his mouth and drop some milk in there is not a very effective way to get these beads down. So we put them in applesauce. Yep, that's what I said...applesuace. Our son is the first in Deaconess NICU history to be spoon fed. Cool, huh! At least that's what they tell us.

Umm...What else!

So Tia and I have somewhat of a history of MRSA, and so poor Ethan has had to stay locked away in a special isolation room because of that. The hospital told us that if we got 3 negative cultures, a week apart each, then Ethan can come out of isolation. So yesterday we got the result of our last culture. Tia tested positive for MRSA. Ethan stays in isolation. This means that we still have to wear isolation gowns, gloves, and masks. It's not really a huge deal, he has just never felt our touch without gloves. He has never seen us without a yellow gown on. Other than that, we can still hold him, we kiss his little forehead (which I don't think we're supposed to, but no one has ever stopped us). That's all!

Some of you have asked what EXACTLY Cystic Fibrosis is, and how does one get it. I figure I will explain as shortly as I can (I know, I'm long winded).

Quote from the Cystic Fibrosis Foundation (http://www.cff.org/)

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond."

So how do you get it?

"Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.

The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene."

In lamens terms, a child will recieve a specific gene from each parent. If they recieve a negative gene from both parents, then they are negative for CF. If they recieve one positive, and one negative, then they are a carrier. If they recieve two positive genes, then they are positive. It is possible to carry the CF gene, not ever know it, pass it down to your kids and they would never know.

For example, I know for a fact that either my father or my mother, or both, have one of the CF genes. If they both have it then all four of us kids have dodged a 25% chance bullet. However, it makes more sense that only one of my parents have it because nobody that we know on either side has had CF. But it was carried from someone all the way down to me. The same is true for Tias family. Ethan was just the unlucky child that recieved both positive pairs from us.

OK, this is getting long again. I am going to stop for now. If you have any other questions, I urge you to take a peek at the Cystic Fibrosis Foundation website, or you are more than welcome to ask either Tia or myself.

Well, good bye for now. Thank you all again for all your support. Great questions from all of you, and we will chat again in about a week or so!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update, FINALLY! - 9/2/08

So Sorry! It has been far too long since I have talked to you all! I am so sorry about not writing.

On one hand, I have been very busy (and tired), but on the other hand. Not a whole lot has changed.

What I am about to tell you will seem like a lot, but remember, all this has taken place over the vast span of time since our last update.

So, about a week ago (give or take a few days), little man finally came off the ventilator again! Over the next couple of days since then they were able to drop his oxygen to 21% (room air). As of yesterday, they were able to take his nasal canula off and let him breath on his own. He was doing GREAT for about 3 1/2 hours until we started his care (take temp, change diaper, things like that [this is what we call "doing his chores]).

He has also pooped from his stoma 3 times now. I know that poop talk is never pleasent, but this is a HUGE step for him. This means that everything is starting to work somewhat normally again. Also when we changed his diaper yesterday, there was a small little poop in there as well. That is also good in the sense that it means the lower part of his intestines is still working (this was/is a small concern of the surgeons).

We have been able to wean him off his Fentanyl and get him onto Morphine and Versed. The drawbacks to this is that he has become quite the little drug addict, literally. He is extremely irritable without the Fentanyl, he is going through some withdrawls, he is in a little more discomfort considering they only give him the Morphine as needed. The whole process is extremely hard for him, but will be better in the long run.

Last thursday we spoke with his Cystic Fibrosis doctor, very nice guy. Very informative! I think we will really like working with him. He is the only CF doctor in the entire area, so he will be Ethan's doctor for a very long time.

The CF doctor also came in yesterday and spoke with both us and Ethan's Neonatologist and mentioned that maybe it is time to start getting him used to the fact that either formula or breast milk is the way to go. His CF doctor will have to give him some enzyme beads by mouth to help his system digest his food. They are thinking they will do this via an extremely small amount of applesuace.

Well, I am sure there is more to tell you, but my overloaded brain just petered out. So if there is more, I will write you all again. If not...then I won't! Makes sense, huh?

Thank you all for taking the time to read about our little boy! After this week, the updates should come a little more regularly as our lives will begin to slow down again.

Take care for now!

- Kip, Tia, Riley, and Baby Ethan -

Baby Ethan Update - 8/21

Hello again everyone!

So yesterday, our little guy went under the knife again.

You remember that infection we talked about a little bit ago that we could not find? Remember those stomas we also talked about that weren't doing much? Well, it is all interconnected.

He had a condition called Stoma Necrosis. Both of his stomas had died. The skin on the stomas should have looked pink like the inside of your mouth. His were...black! And not producing anything.

His surgeon took a look at him two days ago and said that surgery was a go. So after almost 5 hours of waiting the verdict was in. He did have to cut off both stomas and rebuild them, but also almost 6" of dying intestine as well. The section of intestine that was removed was the part that extracts vitamin B12 from foods. But in the end this is what was best for him.

So now we push the reset button on his progress. He is back on his ventilator, he is back on very high levels of fentanyl, he is again in very critical condition.

This was a seemingly small setback, but it's one that will effect him his entire life.

Just to give you an idea of how strong he is, the neonatologist gave him his pain meds correct for his size for surgery, and the anesthesiologist gave him the correct amount of anesthesia for his size and this poor little guy just would not fall asleep. They ended up giving him almost 1 1/2 the amount of medicine he was supposed to receive just to get him to fall asleep for surgery.

Anyway, that is where we stand today! We will let you all know more when we know more. We go to see him every day at noon, we receive calls from the neonatologist every morning, and we call every night at midnight. The idea here is that we try to stay on top of all this information to keep all of you updated as well!

Take care for now, and we will chat soon!

- Kip, Tia, Riley, and Baby Ethan -

Baby Ethan Update - 8/18/08 - Test Results Are In

Well, the test results for the Cystic Fibrosis are in...and positive.

This wasn't a complete shock to us considering after surgery the surgeon told us that he would probably had it. His impacted small intestine was our first indicator.

We don't know much else beyond this at this point. We just learned of this late yesterday.

We do ask that you all don't ask too many questions at this point, we really don't know anything. We have an appointment to meet with the only CF doctor in Spokane. After that meeting I will write you again and tell you what he said.

Just keep praying for now, and we appreciate everything all of you have done for us. Even if it is as little as thinking about us every once in a while, it all means so much to us!

Thank you, again!

- Kip, Tia, Riley, and Baby Ethan -

Baby Ethan Update - 8/18/08

Hello again all! I think it is about that time again!

I think I am going to start adding the dates in the subject line. That way, for all of you who save these you will at least be able to keep future updates organized.

Well, were do I begin?

I can't remember if I have told you all that he has possibly developed an infection in his belly. They don't know for sure, but they have taken a blood test to determine if there is any presence of an infection. His poor little belly is very distended, and they don't know what is causing the extra swelling. They have already started him on a wide range of anibiotics just in case. Even if it comes back negative they will continue the antibiotics for 7 to 10 extra days. If the labs do come back positive, they will need to invasively research to source of the infection (cut him open, find it, and cut it out).

He has been taken off his ventilator and put on oxygen at about 40-50%, taken off his oxygen and put on a nasal CPAP at about 20%. They chose to do the CPAP becuase he was breathing extremely irregular and seemed to be struggeling trying to take his breaths. With the positive air flow, it will allow him to slow his breathing down a bit and expand is lungs a little more with each breath.

The other night I called his nurse at about 11:45pm. When she answered the phone I could hear him screaming! I asked if he was ok, her response was, "he is in a little discomfort." It took me a little bit to finally get out of her that he was actually in kind of a lot of pain. She also told us that he had been crying this way since before she came on shift at 7:30pm. This made me furious. We were told during our orientation that they would NEVER let these babies be in pain. Discomfort I can understand, but not this much pain. I called Tia to tell her about it, she called them about 10 minutes later than I, and the nurse gave her a completely different sotry. And you thought we were upset before! We talked with his day nurse and the neonatologist regarding our concerns. He said that if what we were saying was actually true then there is a major problem. He told us to keep an eye on the nurses and report any time we feel uncomfortable. In defense for Deaconess, I wholly trust in the team altogether. We have had some problems with a couple of the nurses, but all-in-all, he does recieve good care there.

Last night I spoke with his nurse, she informed me that he was finally sleeping for the first time in quite some time. She said he was completely zonked, how cute! So she was relieved to see that he was comfortable enough to get some rest. She also told me that Tia and I touching him to change his diapers, or taking his temp, or lifting him to weigh him is very hard for him! His little belly is just really ouchy. However, he is starting to pass gas through his stomas, which is a wonderful sight to see. They do have a NG tube to decompress his belly, but some times there is not enough suction to get all the air out. So his system has to send it out the other way. This is a sign that his bowels are working...FINALLY!

Well, I don't have much more to say, and I am running out of time here at work! So I will live you with what you have!

Again, thank you all for all your prayers, you all mean so much to us!

Take care, and we love you all!

http://rileymichael.myphotoalbum.com/view_album.php?set_albumName=album34

- Kip, Tia, Riley, and Baby Ethan -

August 9th, 2008

Hello all!

This email will feel real choppy and not well thought through.

It has been a few days since I have written you all, so I thought it should be time to give you all an update.

Since his surgery he has had to be put back on his ventilator. He was originally set back to 40 (that's 40% oxygen, we all breath 21%), but was doing so well that they dropped him down to 35. He took to the 35% horribly and brought it back up to 40. However, over the past 12 hours they have lowered his ventilator down to 30%. The doctor this morning said that he is stable at this point with his ventilator, so they won't be changing anything at this point.

Ethan still remains edemic (i know that's not a real word, but that is the word the doctor used), which they are keeping him that way for the time being. Doc did say he lost a little weight last night, but that is because he pee'd a bunch last night and got rid of some of that edemia. I asked him how long he will stay edemic, and he said that they will continue his blood transfusions to keep the anemia under control, but when they are ready to take him off the ventilator they will give him more red blood cells in his transfusions which will make him extremely edemic. This will cause his blood marrow to grow extremely fast in a short burst which will allow him to start making his own blood.

He is on both Dopamine for his blood pressure, and Fentanyl for his pain. They have reduced his Fentanyl to a level where they are almost ready to take him off it. They are replacing it with Morphine. Fentanyl is extremely addictive, and is ran through his I.V. as a slow drip. The morphine is less addictive, and they give him small doses every 4 hours. They give him his morphine at every hour 9, 5, and 1 on the hour. However, he is not taking to the reduction of his Fentanyl very well, his nurse wants to raise his amounts back up, but needed to consult with the doctor first. We have not heard anything about that yet.

They were able to wean him off his Dopamine last night, which is a good sign considering that means he is becoming more stable with his blood pressure.

They have added some Lasix to the mix to help with his edmea. It's a diuretic which means it will just help him pee off some of the extra fluid.

They have replaced his PICC lines in his bellybutton (2) with one in his foot that gives his I.V. fluid, they can take his blood gasses, give him his pain meds, and pretty much anything else that they need to do to him. He does have one I.V. in his head that they give him his antibiotics through.

Over the past few days, he has had 3 somewhat minor crashes. But not because his is doing badly, he crashes when the nurse changes his diaper, or changes his bed sheets, or weighs him. We are allowed to touch him, but not allowed to stroke him as this causes stimulation which is counter-productive.

The last couple days we've gone in there we have been able to see him cry. He makes a really cute squishy face, but it is hard to see. There are no tears, and there is no sound. In fact, there is even no breath, the ventilator takes his breath away, so his crying is completely silent.

There is one thing that I don't think I have mentioned however. After his surgery, in order to give his bowels a rest, they put in two stoma tubes that an ileostomy bag will be attached. He will need the stoma tubes for anywhere from 4-8 weeks.

He has had his catheter removed considering he was peeing so hard it would come out from around his catheter. There was no reason to keep it in. He does pee really well, which is good because that helps get rid of his edema.

Well, that is all I have for now. Kinda seems like a lot. But I really can't think all that well. Here is the link to photo album again.

http://rileymichael.myphotoalbum.com/view_album.php?set_albumName=album34


Thank you all for your responses, love, wishes, and prayers. We appreciate all of you!

- Kip, Tia, Riley, and Ethan -

August 5th, 2008 Trouble on the Horizon

Well, we met with his surgeon at just a few minutes before 10am. The doc said that if all goes well the surgery would only take one to two hours. 5 1/2 hours later we got a call that they were closing him up. Needless to say there were complications.

But lets rewind for a minute. In one of my last emails I stated what the "final decision" was regarding this hernia. I think I spoke too soon. The final decision on his hernia would be told once they open him up. One of the things we all need to realize here is that on an ultrasound and even a chest x-ray you cannot see an infants diaphragm...it is simply too thin. We knew he had a diaphragmatic hernia because we could see bowels and stomach in his chest. What we did not know is that Ethan did not have a diaphragmatic hernia, he had a hiatal hernia. I will explain the differences as it pertains to Ethan.

Diaphragmatic Hernia - a hole in the diaphragm that allows bowels and/or other things (stomach, small intestines, large intestines, liver, etc.) into the chest cavity.

Hiatal Hernia - you already have a hole in your diaphragm where you esophogas passes through from your chest down into your stomach. This hole is enlarged and allows your bowels and others into the chest cavity.

The doc said that the space between the esophogas and the hole it goes through was large enough that he could stick his index finger through it with ease. If you think about the size this little boy is, a hole the size of a large man's index finger is HUGE!

So the doc pulled the intestines and stomach back through the hole. He fixed the hole and stiched his stomach to the diaphragm muscle with three stitches just so the stomach will not move again even if a hole opens up around the esophogas in the future.

He found that his appendix was not in the right place so he removed it...but we will come back to this.

He took part of his small intestines out to examine them as Tia had told him that he was not pooping. What I am about to tell you is not an exaggeration. I know this becuase the doc took two pictures of his small intestines that he gave to us to keep. Ethans meconium (extremely thick tarry poop that all babies have when they are first born) was impacted at the end of his small intestine just before it meets the colon. It was so severly impacted that it was dilated more than 6 times it's normal size. It was backed up for more than 6 inches. Could you imagine being constipated so bady that your small intestine was streached 6 times it's normal diameter for more than 6 inches. Think of how much that would hurt you. Now think, that was in a 3 day old infant. Can you imagine how much pain he must have been in? I can't!

Well, the doc wasn't sure why he wasn't passing his meconium. He said there could be three possible reasons for this. There is no nervous activity at the end of his bowels, therefore his body is telling the bowels to push it out, but it won't go. Because it is not working. Well, he sent the appendix off to the lab to be tested to see if there were nerve cells in it. If there were, then we would know that his pooping nervous system is working in full swing.

The second reason, he said, could just be a random act of nature. something that was out of our control, that we fixed and will have no other problems or complications in the future.

The third, and most likely is that his body is not secreting enough of the liquid that lubricates the intestinal wall. So now his poop is stuck to the intestinal wall. We still need a blood test done to determine this, which is being drawn today (tuesday), but a common occurrence with this "sticky poop" is Cystic Fibrosis. The doc says that the chances of Ethan growing with Cystic Fibrosis is 70-80-90 percent. He told us to not get so ansy about the Cystic Fibrosis until the blood test comes back. Hope for the 10-20-30 percent that this is just a random thing.

The meconium that he evacuated from the intestinal tract, he said, was the worst and stickiest he has ever seen. They use a liquid calles something like Mucosamine that allows the doc to soften up that stool and get it out of there. He depleted all of Deaconess' supply of mucosamine (6 viles), and half of the supply from Sacred Heart (8 viles). They pumped almost 1/2 liter of this medicine into his small intestine before they could get any of it to move.

Lastly, last night they tried to put a third I.V. into his bellybutton. Since they couldn't get it, they had to put two P.I.V. lines into his head near each of his temples. I called the nurse last night around 1 am and she told me that the new lines were not doing so well and they may have to find a different solution for these two lines.

So the last thing I want to say to everyone is, we really appreciate all the love and support we are geting from everyone. Please just know one thing. If any of you ask if Tia or I are doing ok. Despite what we may tell you, the answer is actually No! We are not doing ok. But we ask that you keep your prayers up. We do appreciate it, more than you know!

We love you all!

- Kip, Tia, Riley and Ethan -

Picture link

So I realized that a lot of you are not getting these emails because you have some sort of size limitations that the pictures I send are exceeding. We have set up an album on Ethan's big brother's photo album. The link is below.

http://rileymichael.myphotoalbum.com/view_album.php?set_albumName=album34

We will keep uploading pictures to this album. We will also keep you updated!

Take Care all, and thank you all for your prayers!

- Kip -

August 1st, 2008 he is here.

So this update will be a little different.

At about 1:30pm on August 1st, Tia's water broke. We called her OB, and they told me to taker her to labor and delivery.
At 6:43pm that same night, we had a great little boy. Ethan came out at exactly 8 lbs, and 21 inches.

We have had the opportunity to see baby Ethan already. He looks so good! The doctor has already taken x-rays of his chest to see what's what. The final decision on what is going on in his chest is as follows. Both lungs were almost fully developed at birth. Only a small amount of his intestines, and all of his stomach is in his chest. He is still intubated and sedated. He will be going into surgery in a few days.

Tia is in a lot of pain right now, but getting by. These meds are great!

Well, it is past 1am, and I am falling asleep writing this. Please enjoy the pictures I've uploaded

Thank you all for your prayers so far. We still have a lot ahead of us.

So please keep praying, and we will definateltley keep you all in the loop.

Thank you all, and take care!

- Kip, Tia, Riley and Ethan -

July 22nd, 2008

Hello all my family and friends!

I have added many names to our update list, so I want to start by givin a brief background on our situation.

For those of you who don't know, Tia and I are expecting our second son. He is due to be deliverd via C-section on August 13th at 10:30am. He will be born a very sick boy. He has a condition called Congenital Diaphragmatic Hernia. What this means is that there is a hole in the left side of his diaphragm, the barrier that seperates your bowels from your upper chest cavity. Because of this hole, some of his small intestines and entire stomache is currently located in his chest. As a fetus grows, it is vital to have all the room possible in your chest cavity so that your lungs have ample room to grow. Because Ethan's bowels are taking up the space the room the lungs need, he will be born with at least one underdeveloped lung. The concern is if his left lung is pushing against his right lung, then we may have two underdeveloped lungs. But at this point we don't know that for sure. Also, his bowels are pushing his left lung behind his heart forcing his heart against the front of his chest cavity. His heart beat is strong with no signs of distress. It may be in the wrong place, but it is working just fine.

This complication is correctable, but it is the side effects that will possible bring Ethan's life to a premature end. When Ethan is born, he will have to be intubated immediately. Three to five days after birth he will have to go into surgery. At this point we are looking at possibly August 18th for surgery, but that is tenntative. The surgery is a fairly simple procedure involving invasively entering the chest cavity, pushing his bowels below the herniated hole, and placing a patch over the hole (only two stitches). Then his left lung will move back into place, relieving pressure from his heart which will then move into it's proper place while also relieving pressure from the other lung. He will have two to three weeks to recover. In that time, all the doctors we have spoken to said he will have a 65% chance of full recovery. Even though 35% mortality is fairly small, it is big enough to worry Tia and I. They say that if he can pass his two to three weeks, he should live a long and heathly life with absolutely no other complication except shortness of breath...ok, so he won't be running any marathons.

One of the main side effects of this condition is something called Pulmonary Hypertension. With an underdeveloped lung, the veins surrounding the lung is also underdeveloped. Think of the veins on a regularly grown lung being the size of a quarter in diameter. The veins on the underdeveloped lung will be the size of a dime. The heart will try to push the same amount of blood through the dime vein as it normally would a quarter vein. That creates very high blood pressure in his lung. But the blood flow will still be lower than normal. Less oxygen will enter the blood stream and be delivered to the body. This will result in rapid fatigue throughout his life. Also, because his heart will be working harder, the muscles that pump the heart will have to grow bigger to compensate for the hypertension. This means he will have an enlarged heart throughout his life as well.

Now for the present...

There are many side effects of this ranging from Chromosonal, Neurological, Pulmonary, Circulatory (of pertaining to the heart...not sure of the word). We will not know the extent of the side effects until we do a blood panel can be taken and tested after he is born.

We had a chance to visit the NICU last thursday. It was very hard to see all the sick babies in there, and then to think that ours will be one of them. But the hardest part of all of it was to hear the Manager of the NICU tell us that Ethan will be by far the sickest baby in the NICU.

For those of you who are planning on visiting Ethan in the hospital, we encourage this 100%. We want our big boy to know how much he is loved. There are certain, for lack of a better word, "rules" that the hospital and ourselves ask that we all follow. The only information that the hospital will give regarding Ethan will be given directly to Tia and myself. Please do not call, or ask the hospital for any updates, they will not give you any. Also, if you wish to see Ethan, one of us has to be with you at all times. Otherwise the hospital will turn you away. We ask that you do not bring any cameras. The hospital does not care if you take pictures, but Tia and I feel it would be inapropriate. Think of a day you were really really sick, would you really want a bunch of people comming up to you taking your picture. It's the same for him. Also, he will be in a room with up to 4 or 5 other very sick babies. We ask that you respect their privacy and confidentiality. You are able to touch him, but we are not allowed to hold him. If he takes a turn for the worst, they will make arrangements for Tia and I to hold him, other than that...no one is allowed to. The fear the hospital has is that if too many people try and hold him, it will stress him out and become counter-productive to his recovery. Also, it minimizes the rish of pulling out, or unplugging one of his tubes or hoses. If you want pictures, Tia or I will take pictures for you, and send you as many copies as you would like. We will also be posting pictures in our future update emails.

I am sorry this email is so long, in the future, they will not be! But for now, we could use all the prayers in the world. This has been really hard on Tia and I so far. All we ask for is a little emotional stability from the big man upstairs!

We appreciate all the support from all of you! We have our big informational appointments on thursdays, so we will be giving you the majority of the updates on thursdays.

Take care, all of you, and God Bless!

- Kip, Tia, and little Riley -

p.s. If you do not wish to recieve any more of these updates, that is ok with us. Just write me and I will take you off the list!

July 3rd, 2008

Hello all!

So here is the latest update.
We had our ultrasound yesterday. There is a video link to it below if you wanna see what it looked like. It's kinda cool!
We learned that more than just Ethan's intestines is inside his chest cavity, it looks like his stomach is also. What we are waiting for is to see if his liver goes into his chest cavity also. We had a short chance to speak to the doctor yesterday. He said that the outcome is still looking positive. We did a little research (by a little, I mean A LOT), and a complication of diaphramatic hernia is downs syndrome. The doc said that when you look at the size of the heart, you can see that it is a normal size. Children with downs have an abnormally large heart. But just to be on the safe side, they are going to take a panel of blood work once Baby E is born.
Other than that, there is no new updates. We will let you all know if there are any changes.
Thank you all for your thoughts and prayers!

Sincerely,
Kip, Tia, and Little Riley!


http://www.youtube.com/watch?v=BgVnuXuRcfA