New babies

I just wanted to add in here that babies Brooke and Kamryn were born recently and that they could use some prayers. Their blog has been a joy to read and they have a wealth of information about CDH on the blog. The family is going through so much and they continue to update nearly daily which can't be easy. They have an older daughter, one baby is now home and another in the NICU. The entire family could use the prayers and support. Their blog is listed down at the right where I believe I just have it labeled as blogs that I follow or babies that I follow...something like that. ....following any of these blogs (and I really need to add more blogs) are invaluable for information and simply connecting to others

Due Date: Aug 23rd but most likely around Aug 16

I've been asked my due date a few times and have neglected to answer....basically, the doctor said I'd be induced about one week before my actual due date just so that we can insure that I don't go into labor anywhere but at the U of U. I wanted to also let you know that my doctor doesn't really want me to have a C-section. Apparently having a vaginal delivery facilitates the lungs by squeezing out some fluid as Ireland comes through the "birthing canal".

Well, I've been having a very uneventful week. I've been incredibly tired and seem to nap alot. I've neglected my blog and facebook. Sorry, my loving peeps! ....anyway, we have family coming over for a long weekend and naptime has to have more restricted hours this week. I need to clean up, change sheets, make room for the kids in the sewing room, make sure there is more food in the house, maybe stock up on stuff like toilet paper, and prepare some things for a bbq on the 4th of July. Honestly, so excited because part of me has been bored....also, missing Tristan (who will be home on the 8th, YAY!!)

Well, wanting to check out some blogs that I follow and hope everyone had a good weekend!!

Uneventful appt./better pic

I wanted to post a decent picture of myself that hopefully better represents myself than the nasty "I dare ya" look to the previous pics. Plus, I did get one hurtful comment and truth is, I'm

not really that bad. Alot of belly and bloating but honestly, my weight hasn't gone all that crazy. I actually lost some last appointment...and my nurse at the U is now instructed that from now on I will always give my urine sample BEFORE I am weighed. :)

Anywho, I had a very uneventful appointment at the U of U yesterday. Besides my weight having gone down nearly 5 lbs (no diet changes, just happened), there was nothing great. I got to tour the small maternity ward and the room that will most likely be where I'm scheduled. The room was pretty dang nice except for the huge window that has access to the NICU. Apparently, this was the window that they'll pass my Ireland through the minute she is born. Honestly, that was a bit upsetting. I like to live in my Utopian world until I have to face my realities. Anyway, this window leads to the the U of U NICU...Ireland will be there just until she's stabilized enough to be moved to the Primary Children's NICU, which is basically a hop down the elevator, across a bridge to the next building. I'll apparently stay in the room for just a few hours until I can be moved to a regular recovery room.

Well, sad thing happened. As we were leaving the appointment, wouldn't you know the chapel is right there next to the bathroom that I use every time we leave before hitting the elevators. I'm standing there waiting for the person before me and out comes a family in tears. I got a little shook up and went to the bathroom. When I came out, Mikey said that apparently this family had lost a baby to preterm labor. How awful. They probably didn't want to see a huge pregnant lady when they were exiting that chapel and goodness knows, I can get pretty upset about the loss of a baby (who wouldn't?). Anyway, I just felt tearful the entire ride home. I told Mikey that I really thought the chapel should be moved. Why would it be placed on a floor next to a maternity ward that deals with so much already?! .....granted, where else would the chapel go. This is a huge hospital and very well known cancer treatment facility....doubt anyone wants to see it next to their suffering loved one.

Anywho, today is a new day. Plan on making some stuff....researching how to get rid of some back pain. That's it for now.

Just another post

I couldn't sleep a wink last night. Have no idea what that was about!! I've been up forever and would imagine that it's good I've been pretty productive this week because I see this morning being somewhat lazy.
I wanted to say thanks to everyone with comments about my two preggo pics. Mikey and I sort of laughed last night because they are far from good looking pics and normally I wouldn't post them but I felt that he was daring me and for that, I had to post them. Then again, I'm far from skinny preggo right now and all I can do is post myself in a better outfit and position next time which I'll do sometime this weekend. I do not want Ireland to believe that I completely let myself go even though that is exactly what I look like draped over that chair!
Anywho, will not bash myself anymore because I really don't mind my present state. I'm pregnant and proud of it. It took me a long time to get this way!!!

....well, I've sewn alot this week. I have to say that I think my beginner status is going away. I'm getting much better with all the practice I've had lately. I've been sewing U of U material into a few small things for my shower. Mikey thinks this is crazy but I like giving things to people and told him that I figured when they use the stuff, maybe they'll think of us while we're dealing with all of the CDH junk. ...there are sooooo many people out there that contribute tons of time and more towards CDH awareness and I don't feel that I do much at all. It can almost make you feel selfish knowing that there are people that have dedicated their lives to this cause and you simply are telling your story through a blog. Honestly, people have made awareness of this condition their career. ....a while back someone mentioned me making my little NICU masks for some organization or something and I remember thinking that I just didn't want to commit myself fully just like that... is this totally selfish? I have thought of things like making some extra masks for the NICU at Primary Children's and even doing a few more things but I really don't want to commit myself to something major when part of me feels that I haven't a clue on what we're about to face.

Well, too tired and yet can't sleep. So, think I'll go turn on the boob-tube and lay down on the couch. It's Friday and I miss Tristan. It's supposed to rain yet again this weekend and I'm just in a funk already this morning. .....I hope everyone enjoys their weekend. Once I get some rest today, I'm sure I'll enjoy mine.

Room in progress and some brave pics

I took a leap of faith here. Showing the slow but steady progress in Ireland's room. Then, shocking the world with just taken photos by master photographer, Mikey. I feel assured that he loves me even though I can't possibly be as big as these pics make me look. Surely the camera added 30lbs!!!











This is the border that we both love and cute little light switch.

Needing to get some curtains, paint that wicker basket, and someday possibly a crib in here...along with cleaning that old chair up a bit!

Just thrown some things on the shelf for now...no real orginization there...but love what Mikey did to my old dresser...when Ireland is older, it has a huge mirror that attaches to it. He also changed out the knobs to little lady bug ones that match the border pretty well.

BRAVE photo #1....showing double chin with the bare, white, huge belly!!!...not the most attractive pic I've ever taken....but pretty honest representation of present status.

p.s. I do have eyeballs somewhere in those slits.

Brave photo #2....not as bad as #1 but shows my lack of any fashion at the moment. Sadly, could have fit 2 of me in this chair pre-preggo. Everyone assures me a little breast feeding will get me back in shape. We'll see.

Well, I've shown the world the tragic demise of my body but will admit that I wouldn't change it for the world right now. If anything, will demand reshoot of pics with me standing up and in a better bra! ...Hope to have made someone's day. Surely you either smiled or felt better about yourself. Either reaction is fine with me.

Dreams and Worries

Well, today I should have shower invites in the mail. Mikey and I did most of the work since Jeannie (friend having shower) is insisting on everything else. None of us know the etiquette since we're all away from family and basically all of our shower giving experience is a big zero. Oh well, all of us trying to do this thing have at least been present at showers. So, we'll see how it goes. Knowing Jeannie, the food will be too much and really good.
Anyway, sorry I haven't posted in a bit. I was still processing alot of last week's doctor appointment. I've been doing fine but have been doing alot of dreaming and thinking about things to come. ....Last night, I asked Mikey if something was wrong with me since I don't cry alot right now. I'm sad and worried but my tears are sort of minimum. ....For instance, Saturday morning we were outside doing some yard work and our neighbor came over asking how I was and if I could explain what was going on a bit better. Well, next thing I know she's practically balling and I'm reassuring her. She is a very sweet woman and assured me that she was going through menopause and apologized. She didn't need to do this but I found myself explaining why I don't cry about this anymore. Why is that? Last night I did tear up during some show that had a small cameo of a sick newborn..other than that, I haven't really shown a heck of alot of emotion. ...I will say that I dream alot lately. I dream of good and bad things to come and it's all in a very "this could be real" way. ....Weird. Part of me explains this as my coping. I watch my belly dance constantly and at times, this all seems sort of unreal. Other times, not very often, I don't feel anything and worry like crazy.

Well, I worked a bit last week and yesterday and it seems to be coming to an end. I nap quite a bit now and am not comfortable driving an hour from home. I don't worry about bed rest so much since I'll most likely not be going around too much now. I have been on unemployment for several months now but have usually had some hours of work each week. This is probably a good thing because with income, it reduced my benefit and makes me eligible a bit longer.

Also, I have been stressing over silly things lately and really need to "chill out". There is too much to post here but since I throw in my sewing hobby, I'll use that as my example. ...I feel I have roughly at least 8 more weeks until Ireland is in the world and a little less than 3 weeks when my sibling in-laws are coming to visit. Well, I feel overwhelmed with what projects I want to get done before either of these things happen and in the end find myself having finished nothing. I have to make a list and prioritize or nothing will be done. I know that Ireland will not be coming home with me instantly but I feel that her room should totally be done because for one, we're not exactly going to be working on her room while she's at the NICU and she may be that miracle that is home sooner than later. As for my in-laws, well, I of course want the house to look nice and there are several projects that I'd like done before we have guests for a long weekend.....today, my only real thing I have to get done is take invites to the post office along with some work papers that need to be sent out...I actually woke up at 4am counting how many hours I had until the post office opened because I knew I still needed to address some envelopes, get them sealed and organize the paperwork that I need to send to my office. I also wanted to run by the book store. Now is this going to take 5 hours??? Absolutely not. But then my head starts running through all the projects I want to get done, the chores that must get done and what should we have for dinner and all of a sudden, you'd think I was running a mansion. I start worrying about how bad the front of our porch looks because I felt major landscaping could take a vacation this year. I worry about weeds in the rocks because they seem uncontrollable all of a sudden (granted it's been raining non-stop here). I worry about my dog shedding hair entirely too much this summer and the cat box possibly making our house smell (better not, I am very aware of smells!!!). I worry if I should get outside a bit more in shorts and get some color and then next thing I'm worrying about looking silly in said shorts with stick legs and huge round belly. I worry if I'll have time to nap if I'm trying to get all of this other stuff done. .......on and on. Some women are nesting and I'm just obsessing with worry. Oh well, better get off of here and actually make a to-do list. I'm convinced that I'll get all of this stuff done as long as I make my list each day. ...gotta go. Prayers out to my family, my peeps and all my CDH family and babies (future and present)!!!

Important health lesson

Well, I’ve had some time to process yesterday’s appointment with Dr. Scaife, pediatric surgeon. As those who read the earlier post will know, I was terribly nervous about this. For good cause apparently. The entire appointment was a health lesson and very much like taking a band-aid off very quickly.
I went in that appointment feeling pretty dang knowledgeable about what I believed was going to be the basic scenario. Of course, on the ride to Primary Children’s, I wrote down a page of questions but truly felt I had a grasp of the basic anatomy for Ireland’s condition. WRONG. WRONG. WRONG. Now, I’m not going to fuss at my fellow bloggers of this condition or my beloved CHERUBS, but there was quite a bit that I learned and I was totally thrown off. There is a lot of talk about stabilizing the lungs and immediate ventilation once our CDH babies are born. Well, not so much on the ins and outs of why. Obviously I knew that she’d have (hopefully) one healthy lung and one that would need time and healing. I’ve learned all about the actual herniated condition of her diaphragm and the fact of problems with the stomach and bowel being in the chest area….well, not so much about how I had this image of a very small hole when in actuality it is probably more like ¼ to ½ of her diaphragm is missing.
Anywho, I’m going to do my best to give a bit of a health lesson. Our surgeon was very good on explaining this not just once with a drawn picture and much pointing but a second time because I apparently needed him to act as if our blood were different colored cars to understand the path a little better. ….here I go. Dr. Chanda at your service. First off, think of the path of the blood going from your heart to lungs for oxygen, some filtering of carbon dioxide and acids and back down to your heart and then sent throughout your body. For me to apparently get this basic concept, we used the idea of cars going up blue, getting serviced beautifully and coming back red. This is what we all need…nice red cars. Well, for a fetus, the blood doesn’t go to the lungs to get precious oxygen but to the placenta. There are extra paths (or shunts) that exist in a fetus’s heart to facilitate the sole purpose of blood to go from the heart to the placenta and back again for this oxygen. These extra paths/shunts tend to break themselves down and just sort of go away within a day or so of birth due to no more placenta. Obviously once the fetus is born, the cord is cut, the placenta is birthed and thrown out. The fetus becomes a baby human and is ready to breathe. Well, sounds great, maybe we’ll just have one lung and need help breathing with the other. This is what I (in my infinite wisdom) had thought. Hmm, so wrong. Our little newborn CDH babies will immediately be born with serious high blood pressure. Once my baby Ireland takes her first breath, her little heart will realize that the lungs are not quite doing what she needs, so the heart will do what it’s naturally been doing for the past nine months and seek out those little extra paths/shunts and go look for the placenta. Problem. Big problem. The shunts are still there and haven’t magically disappeared so the blood will go there but obviously isn’t going to find that precious oxygen supply from the placenta. She’ll also be breathing in our air and will have carbon dioxide and acid trying to figure out what to do. Basically, we have a big damn mess going on! …Thus, the need for ventilation for oxygen, medications to sedate and relax Ireland, ways to stimulate/relax the stressed out heart and a way to clean out this carbon dioxide and acid. What is natural and so taken for granted by all, will end up a major issue for our little CDH babies.

So, when our babies are born, we’re NOT so worried about the size of the diaphragmatic hole or what is or isn’t inside the chest cavity. We’re worried about calming down high blood pressure enough to be able to handle a major surgery. Within 24 to 48 hours, we’ll know if ventilation is enough or if we have to go to ECMO (big bad bypass machine). Remember my idiocy of having to relate blood to red and blue cars? Well, our babies are in serious need of red cars. Any perfectly healthy newborn will have 100% red cars all of the time. We in the CDH world will be seeking them out and monitoring them like crazy. Our babies will have a hell of a time settling into this new world outside of the womb. You could have the greatest test results and percentages throughout your pregnancy, bottom line, we need little fighters that are thinking of oxygenated red cars that are devoid of too much carbon dioxide and nasty acids. We want them on that ventilator and all those other tubes doing the best they can with whatever healthy lung tissue they’ve got. We need them calm and sedated. We’ll worry about ECMO only if the red cars are ridiculously low and the lungs just can’t do the work at that time. We’ll worry about the surgery when she can handle it.

Well, hope that wasn’t too confusing or even too elementary for those that have walked before me or those learning just like me. I’m sure there are way better technical ways to explain all of this but this is what worked for me. I didn’t necessarily feel that I went back to square one but I was shook up a bit. Also, maybe others have explained this and I was just too dense to get it. I don’t know really. I was in a sort of Utopian mind set that all was going to fair well and with haste. Truth is we’re looking at a typical situation of anywhere from 2 to 4 months at the NICU. The doctor did say we could have an exceptional case of just one month but he wanted to be realistic. I honestly appreciate that. And another thing that I thought was that I’d steadily sit at my precious baby’s side day and night on constant vigil. It was discussed that I can feel free to do this but that they recommend going home and getting on a schedule. This was discussed a little more than just a sentence thrown in the wind and after some basic thoughts on what is best for our situation, I understand the logic of this. Plus, I have a husband and son that will need me during this time as well. And, I’m sure that I’ll need them. We’re trying to figure out how to afford the drive back and forth and are considering monthly passes (about $170 apiece) on what is known as the ‘UTA’ system out here. Basically, I take a sort of train to Salt Lake City and then transfer to a track system (like 3 connected trolleys) that takes you straight to the doors of Primary Children’s Hospital. We’ve decided that we’ll take this route our next few trips to the U of U to get me more comfortable with this. We’re also trying to decide if I should try to get a hotel for the first week or two that will lead up to Ireland’s surgery. We figure these will be the hardest weeks. We really don’t know and welcome advice from those that have walked before us here.

Anyway, we ended up touring the NICU. I was teary through most of that and was in a sort of fog and still processing what Dr. Scaife had said during our surgical consultation. It seemed nice, aesthetic for sure, and just a wee bit sad. The charge nurse spoke rapidly and was giving us a ton of facts that I’m certain I’ll recall later on. She was awfully nice and I do remember her saying that Ireland will be assigned two nurses that will work 12 hour shifts and be at her side constantly until this is deemed not necessary.

Well, I’m going to stop posting for now. I felt my little health lesson was important and hope that others will spread this bit of news to those of us still awaiting the arrival of our CDH babies. And for those just supporting us, this is what we know now. It’s a lot to think about.