Monday, August 31, 2009

Dear Ireland


Dear Ireland,
I love you. I love you sooooo much that I hate to open my eyes because then you're not there. If I close them, I see that special day that we had. You were smiling and talking to me, I swear. Your arms were going and your little toes were curling and it was just a good day for your Daddy and I. This is the time of all your too short 11 days that I will burn into my memory.

I love you. When I can't think of what to say...I just think, I love you. I struggle with what we decided. When they had us come to your bed and kiss you, I swore you were breathing and I really just didn't understand why all of the nurses and doctors weren't doing more for you. Your daddy says that you weren't really breathing and that your little lungs were full of blood. Maybe I should have paid better attention when the doctors were talking because I just don't understand any of this. Honestly, baby, I didn't want to understand. I just saw you looking beautiful and that is all I wanted to know. You are the cutest little girl that I have ever laid my eyes on. I hope you know how very much I wanted you and I feel that I needed you, too. ....I just love you soo much. I'm having a hard time today. I woke up early, around 5 and just started talking to you and seeing you. Around 7, your daddy started to wake up and I opened my eyes and the crying began. I was really sort of mad that the sun came up. That's probably silly but it didn't seem right to me......Ya know, I don't know when I'll ever stop hurting. With every corner, I see you because I just wanted you so very badly. I went to your room yesterday to comfort your brother when we got home. That was hard but I could see how much everyone loved you too. Your daddy made you a beautiful room. He painted it, put a border around, put a stubborn crib together and moved furniture a million times for me. As for your brother, he's dealing with this much better than I thought. He had a hard time yesterday morning when he saw me holding you, his ride home wasn't very good and he's not real thrilled with this new sad mom but he comes to let me know he loves me and loves you, that helps him and me.

Oh Ireland, I love you. Fresh tears keep spilling and I'm sort of sorry because I want to celebrate your too short life too. Your dad and I picked out some pictures just a bit ago to print out and that is what helped me get out of bed. We actually got to smile a few times, too. We so wish we would have taken more pictures. We just had no idea...I had no idea. I truly felt in my heart of hearts that you'd be coming home. I felt we'd have a long venture at the hospital but I really did think you'd come home. You have all of these clothes, things I've made for you, things that others made just for you, this beautiful room...we had this awesome life planned out and you were a huge part of that. I couldn't wait for you to sneak in my make-up, get into my shoes, want to have a tea party, and crawl in my lap to have me read to you. I had this major plot to turn your daddy into a complete sap when it came to you. Funny, you sort of did this one on your own.

I have imagined that you'd show me everything as new again. Colors were already looking a little brighter once you entered this world. Heck, we even had this gorgeous double rainbow one day...I felt certain that this was a sign of good things to come. I had already decided that you'd be a little fairy for halloween. I had you in this pretty green outfit with frilly tutu of a thing and a little head thing going around with little roses weaved in and out. You would of been the prettiest fairy. I understand your granddaddy Doss was calling you Tinker-Bell...how appropriate because I could just see you as this feisty, fun little thing.

I got a major cry when I saw that my inbox had over 100 messages. I'd imagine they're all about you and when I feel that I can breathe, I will read them and surely find comfort. I just can't do that yet and I hope you understand that I'm not being selfish,.............maybe a little, I'm just sad. I wanted you here with me.

Yesterday morning, after we saw you in your little bed, your daddy and I went into a room and they brought you to us. I had them wrap you in a little blanket that I had made. I don't know if it was the prettiest one you have but I made it for you and was so glad that it was there for you. You looked so cute and so beautiful and I swear you were smiling and just looking so dang peaceful. I didn't realize it at the time, but a nurse came in to check your heart beat and it was beating so I'd like to think that you knew your daddy and I were there. I hope that you know we were loving you ...I hope loving you out of pain and into what brought you that smile and that peace. I couldn't stop touching you and kissing you and when your daddy held you, he just rocked you. Your brother saw you too. He couldn't talk because you were his little sister and he wanted you too. He only stayed a bit but he was loving you too and I hope you know that. .....I love you. I think we gave you the perfect name. Ireland Rose. ....I think that is the most beautiful name in the world and I'm proud to say that I came up with that and gave it to you. Ireland wasn't just a name for a pretty island. It was the name of a celtic goddess. Her name was Eyre...the goddess of soverignty and if I understand correctly, that means she was a law unto herself....there are probably more in depth meanings but I like this. .....Ireland Rose. You were definitely calling the shots the entire time that we knew you. You showed us miracles daily and proved the doctors wrong more than once. .......That last day when we decided that we wanted you to not suffer and not be in pain and that all options were running out, because baby, I was willing to push your strength and test it but all options pointed to a road that led to an inevitible outcome of "this", so we had to make the decision to choose a life that was not to be had on this earth but elsewhere. It was the hardest thing. .......I love you. ........I really thought you'd prove the docs wrong again, they'd come get us and say "wow, she's doing great".....I really, really thought this. How dumb of your mommy to not listen to those smart doctors. .....They were really the nicest people and I'd like to think they gave it their all to save you. Goodness knows we asked if we made the right decision and all told us that we were brave and did make the right decision. ....I don't think we were brave at all. We didn't want you to hurt anymore but like I said before, I would have pushed you a little further had I thought we could have got through this. You have a stubborn mom and I felt that you had a fighting spirit in you. I want you to know that I thank you, my precious little Ireland. Thank you for my 11 days, thank you for showing me how you could overcome things so quickly....you will always be loved.....thank you for those times that you looked at us and for that day that you were speaking to us...there were not words heard but baby, I saw that you were talking back and it was a beautiful thing......thank you for holding on so that I could finally hold you in my arms and you were there...I know you were there. .....I just love you. .....I loved your daddy so much and was so glad that you came into this world. You were made through the deepest of loves. I hope you felt that. .....I feel like I'm not saying everything that needs to be said and I'd imagine that I'll talk to you forever...I know that I'll talk to you forever.

I promise to love you always and keep you in my heart with the happiest of memories. Your time was just way too short. I promise to love you daddy and your brother always. You can never be replaced. Pictures will never completely do justice to the beauty of you..to your complete adorable-ness and cute-ness. ....I've always been afraid of death even with religion or anything...I've just been afraid...maybe of what I'd be missing here on earth or maybe even because I wouldn't want others to miss me....right now and forever, I'm not afraid of dying. I'll one day get to be with you again and that will be amazing. Until then, I'll talk to you, love you, see you, remember you, hold you in my heart........I'll love all of our family and not take any of them for granted....I'll do my best to respect the life I have because you showed me how precious each day can be. Thank you Ireland. Ireland Rose. The most beautiful words put together and the loveliest gift I could have ever recieved on this earth. .......I hate ending this post, this letter....but, I'm not ending anything, right? You are with me and I with you. xoxo

Sunday, August 30, 2009

Sad news

This is Mike and Chanda's friend Meredith. I have been asked to update the blog for them today. I am deeply sorry to inform all of you of this, but Ireland Rose lost her battle with CDH this morning. Mike and Chanda had to make a decision that no parent should ever have to make. They chose to end the suffering of their beautiful little baby knowing that she would not survive without being on ECMO. I just want to say that my heartfelt condolences go out to Mike, Chanda, Tristan and the rest of their family. I pray that God will give them the strength to deal with their loss.
A memorial will be held at Myers Mortuary on 1900 in Roy on Tuesday, September 1 from 6-8 pm.

Saturday, August 29, 2009

Short update

I can't say much. Chanda and I have had to worst day ever here... Her morning try off ECMO went so wrong that we haven't stopped crying since then. Her poor little lungs filled with blood and we just about lost her.... They have put Ireland on a whole new ECMO machine now and we've really been told that if they can't get her off of it "soon" that we aren't looking at a very good outcome. It sucks that the machine that is keeping her alive is also her worst enemy because of the blood thinners that have to be used with it she is just bleeding every time they try to take her off. We are just at a lose right now. We still have hope but now the fear is very very real to us. She did very well on the transfer to the new machine and they were going to use less blood thinners to try and curb they bleeding and for now it seems like it has worked. They next 3-4 days will be hell, but whatever the result I love Chanda more than anything and we will be there for each other no matter what. Hope they can just let Ireland rest up and pray the next try will be the one.. LOVE YOU IRELAND!!!!!!!!!!!!

Being corny/sentimental

I have not been very good at posting on this blog lately. I've been tired and am constantly feeling a nervous wreck. Today we climb that mountain of permanently getting off ECMO (her life suppport/safety net). I'm scared and excited for her to be done with it. I really pray that we're not asking too much, too soon. If nothing else, Ireland has proved to be one hell of a fighter. She is amazing to me.....One of us will post once we know how well she did. Her trial went well last night with them just having to turn up the ventilator. Imagine that once she is off this ECMO that it'll do wonders because she won't be on all those nasty blood thinners anymore. .....Also, so unlike me to have such a small post :), but I just wanted to say that I'm so thankful to have a hubby like Mikey. He keeps everyone informed and has just been awesome to me throughout all of this, I'm going to hate when he goes back to work. He has been what I need on a daily basis and I'm just really lucky to have him. And then, I want to say that Tristan has been great too. He finally showed some major emotion last night and it was time. It's hard for a young teen to understand all of this and he's just ready for Ireland to come home. ....I love all of my family but this little immediate family of mine, Mikey, Tristan and Ireland...well, I'd give them the world on a platter.

Friday, August 28, 2009

thought morning would never come







Well our Ireland is still keeping Mommy and Daddy crazy. We went to see her around 830 last night and poor thing had quite a bit of bleeding going on from her intestines silo. Nurse changed the gauze pads and everything, poor thing. We wanted to spend some time with her cause with the surgery earlier yesterday and then they went back in to work on the blood loss, we didn't feel like we were there for her much. Well as things go at the NICU, we were there for about 10 min. then we were told that another life flight baby was coming into our bay and we would have to leave. AGGGHHHHHHH Just want some time with my little girl!!!! So we decided to go to the hotel and try... and I mean try.. and get some much needed rest so we could be strong for Ireland in the morning...10pm phone call from the DOC. Ireland's bleeding was much more than he wanted to see and he would have to go back in and try to find and stop the bleeding.. Now this would be the 3rd time in less than 12 hrs our poor sweet heart would have to go under the knife.... I hope so much that she isn't in pain and her little body can handle all these drugs they have to use on her. I feel like she is fighting so hard for her daddy and mommy and I just wish I could trade places with her. No parent in the world would want to see this happen to there little precious girl and I pray I'm not asking to much of her. She has given this daddy so much in such a small time that I can't wait for the days and months ahead. Sorry got off on a little tear fest moment there...Back to my baby... doc called back around midnight and said he found a small cut/tear on her intestine and a bleed on her stomach wall. He put a small stitch on both and it seemed to keep everything as dry as can be expected for what she is going through. Getting ready to see her this morning and will update all after wards. Lots of love to my brother in law Phil... He wishes so bad he could be here for Chanda and just know Phil you are with us through all your love and phone calls!!!!

Thursday, August 27, 2009

well long night

Little Ireland is just fighting and fighting. After her surgery her belly was swelling too much and the doc decided to go back in and open her belly cut to let some of her "guts" out to release her pressure. When he got in there her belly was full of her blood bleeding from her abdominal wall. We knew this was a big risk because of the ECMO machine she has been on blood thinners the whole time. So anyway, she is doing well and they have taken her "inners" out of the belly cavity and they being held in a wrap to keep from drying out. They will keep them this way so they can keep track of the blood lose and it will also help her lungs have the most room to expand to get her off of ECMO in the next 24-48 hours... This little girl just keeps us on our toes for sure!!!!!!!!!!!!

2 steps forward... of course a step back..











Well the Doc called us back up to the room during r lunch and informed us that they were going to have to open up her belly cut to relieve the pressure. He had thought at first that it would all fit and would be fine but after a hr it was swelled up pretty good and he was afraid it would start cutting off her blood flow. So they will just open back up the cut and let some of her innerds come out to relax the pressure. They will cover it up with a plastic wrap and in a few days slowing start getting everything back in.. Not a big deal... I know I'm saying having your guts out is no big deal right!! So hopefully we will get back in to see her in a half hr or so and see what has happened now!! But really no worries.. she's my tuff little girl... here are some before and after.. and later I will have some after after pics!! Mikey

One battle won so far!!!!

Well they moved up the surgery on us. Called at 830 to say it was at 10!!!! good thing we were down in SLC already heading that way. So it was good that it was sooner cause Chanda and I would have just been a wreck. Anyway Surgeon just came in and said the surgery went great.. she had just a small hole and he just sewed it up and everything fit back where it was suppose to be!!!. Chanda and mine tears are still running but tears of joy. we still have a fight ahead but today is well and we just thank everyone from the bottom of our worn out hearts... love to all..

Wednesday, August 26, 2009

PRAY

I am a basket case! I looked at all of our pics of Ireland tonight and our little girl has come a looong way! I forgot how huge and bloated she got on that first day of ECMO. My word!!! She was twice as big as she is now! .....I looked at what I'm calling the "many faces of Ireland" because she looks so different each day! And man, she is one beautiful baby. I am glad that she is relaxing now (although the fact that she needs so much sedative and morphine to get there sucks), but I really enjoyed that day when she was just kicking around and looking at us. I realized how much I love her that day. And ya know, she so knows who we are. We can hardly speak without her getting excited. And man, she knows who daddy is. Jealous as I am, I am pretty sure she wants to know where he is first........Today, Ireland started to wake up from all of her sedatives and such and gave us another peek of her beautiful eyes. You could tell that she was definitely on some heavy stuff but it sure was nice to look at her and have her look back. Too soon, it was decided to up her morphine and she was out again.

As Mikey posted before, she's having her surgery tomorrow. She is still on the ECMO. ....I have faith in the doctors and I pray for the strength to think positive come the morning. I want to be strong for her and whisper encouragement before the afternoon comes and with it, the surgery (3:15 our time). .........I have now pumped 3 times with no success. I guess its the stress. I mean, I get a drop or two that sticks to the damn suction cups and that is it. I've never really given a hoot about breast feeding but seriously, this was the one thing I felt that I could go out of my way and give to her. I can not for the life of me stop crying. I'd say my breast are shriveled and useless but anyone who knows me, well....they're far from shriveled and they hurt as if the milk's there and just won't come out....I don't know, Mikey says I just need to give up tonight and sleep.

I can't even call the NICU for an update...Mikey has to. After all the blogging that I've been doing for months, you'd think I'd be excited for this surgery and not such a ball-bucket/cry baby at any given moment...Mikey just called as I'm writing and the nurse said that she had to have some more morphine tonight, Ireland has to just be restless and sick of all of this, and other than that the nurse said she's nice and pink and resting.

Anyway, we have a room at the hotel for tomorrow night, Tristan is staying with friends and we'll be as ready as we can be tomorrow. I'm totally nervous and scared. I feel like my heart is just being slashed open and I wish we could just trade places. I so don't want her to hurt and I just wish she were home and that we'd never heard of CDH.

Totally can't write anymore and need to go to bed. Please pray like crazy for all involved tomorrow...Ireland, especially.

Surgery Tomorrow
















Well, no trial off today. They started to lower her ECMO flow and her BP just was too low. So they brought back up her flow and the Doc decided it was best to leave her on the ECMO and proceed with the surgery tomorrow @ 1515 MT. Thats 315 pm mountain... Chanda and I are starting to get pretty nervous but also believe that she is in great hands and that by staying on ECMO she has somewhat of a "safety net". She is looking really good lost alot of excess fluid so we hope the surgery will be pretty good. But of course tomorrow we will both be a wreck!!! So if you believe in praying, send one her way. Her are some pics from today. Fingers crossed for tomorrow....

maybe another trial off today or surgery tomorrow




Well Ireland looks really good today. She is getting pretty skinny so we are getting our real first look at what she really is going to look like. They talked today at the morning meeting about lower some of her ECMO stuff to prepare her for another trial off maybe this afternoon. Dr. Barnhardt who will do her surgery really wants her to do a couple of hrs.. more like 4-6 this time and have really good numbers or he doesn't want her to come off ECMO until after the surgery. So if the trial off goes well he may wait until Friday or Sat to try surgery. If its not so well he wants to do surgery tomorrow.. So we are just waiting to see how things go until this afternoon. Here is a pic of her today. she's kinda squishy in the pic. think she is sick of ECMO!!! lol

Tuesday, August 25, 2009

Sucky day

It really wasn't that bad, just a low I guess. Little Ireland had her little eye masks on that Chanda made all day to keep her from moving her head around. So we couldn't see those great blue eyes looking at us. Plus she was moving around way to much and we were all worried that she was grabbing for her two lines that go into her heart. So they had to start to sedate her but of course every time Chanda or I got close to her side or talk a little louder she would know we were there and start moving around a bunch more causing her BP to go up. Finally they upped her morphine and she was a zombie after that. Felt like we didn't get to spend what we would like to call quality time with her today, but when I sit back and really think about it any time I get to spend near her is great, great time. I realize that some of the good people who follow our blog have lost their little angels and that my whining about this is nothing compared to what they have gone through. So with that said, I will no longer bitch about any time I have with my daughter knowing that others don't have that chance. See this blog is good for something. It really puts things into a different light. On another note, today there was a new baby in Irelands area. A little boy named Joe. Guess he was born last night. Well we didn't see anyone with him which we thought was sad but thought maybe he was life flighted in and his parents were someone else. Well around 2ish his parents came in of course looking sad to see their little bundle of joy with vents and tubes. As fate would have it this little boy has CDH. I felt so much for them because they didn't know anything about it!!!! I guess this was a very late case of CDH because it was never found on her sonagrams. He was born and then they found out. Chanda and myself got a moment to talk with them and hoped to share with them what we have found out since we knew at 20 weeks. I can't imagine knowing what I know now and having this happen out of the blue. We shared what we could in the little time we had to talk and hope even the littlest bit we could share will help them at least through today... Time for bed here. Sending out love for another precious baby, Josheph, has he fights this demon called CDH. Also, would like to mention little maximus is having a very hard time after a pretty good start and my heart goes out to his mom and dad. Need anything please hit Chanda or I up... Good nite Ireland!!!!

RELAX

Just so my brother knows, I'm sleeping, just happened to get up and pump. And now blogging until meds kick in and can go back to sleep!

Yesterday was tough. We're told to expect the roller coaster...3 steps forward, 2 steps back...etc. It's just when it happens, you still are not prepared. ...Plus, I physically had a rough day. I went from being a few hallways away from Ireland to having to commute to see her, walk around the hospital for various reasons and no nap (except for the not so fun mini ones I'll tell you about).

Anyway, we arrived at the hospital and for once, did the whole valet thing so that Mikey could just wheel me up to Ireland's room. We sat through the morning meeting, where there were considerably more people there. You could definitely tell the difference between the weekend and a week day in a children's hospital!!! ...Well, first thing, our nurse said she'd been peeking through the one eye off and on all night. Of course, we begin talking to her and both eyes pop open and she just wiggles as if she really wants to get out of her lying position! And being so proud of her progress, we're in her face talking, smiling, tearing up and just touching where we can. She was such a "normal" baby at that time. I swear, it's like your heart will just burst any minute because you want to pick her up and just love on her!!!....Well, we sort of settle ourselves down because we know, as good as she looks, she needs to settle herself down. ...We start "half-ass" paying attention to the meeting...very hard to be in that meeting completely when your little baby is vying for your attention and just looking her best! ....There are serious talks going on. She'll have the trial to take her off ECMO sometime in the afternoon. There is also a debate about how much narcotics she should be given. ....ECMO babies tend to be in the hospital so much longer than the average NICU case (atleast for CDH) because of their addiction to some serious meds.....Anyway, the CDH babies at Primary's have typically had their repair surgeries (to replace the stomach, bowels, etc and repair hernia) while still hooked up to ECMO. Some of the surgeons are wanting to do their best to get her off of the ECMO because she'll be off the anti-coagulating drugs (these are blood thinners). This makes sense because even though they can deal with the extra bleeding during surgery, it is a minus-not a plus. Also, they truly feel that she can handle it because she's done so well on less narcotics during her entire ordeal of cooling (this was those first 72 hours when they were trying to slow down any negatives from the cord prolapse) and since she's been on the ECMO. .....Just to take a second on the narcotics topic, some CDH babies are given pretty high doses of morphine which once off, it takes about a month or longer to deal with what we like to call "baby-rehab". It is not necessarily a new practice of trying to reduce the narcotics but it is new at Primary's because their standard practice has been to just push the narcotics and do the surgery while on ECMO. Ireland has been watched hour by hour and her doses of narcotics have stayed at a minimum thus far so that they can reduce the time she has to deal with her "addiction" later on. .....

Anyway, I loved on Ireland for a bit, Mikey took her hand for some daddy time, and I went off to the "pumping" room. Well, that pump looked like something from the 50's!!! It was a giant stainless steel thing with hard plastic covering it...like it was some museum exhibit that is showing you how it's parts work...really weird. I had to read the directions and basically found this tube sticking out, placed what was obviously not a matching part but was the tube from my pump at home and connected the 2 as best as I could, turned the lever, and did my thing. ....I am soooooo taking the camera with me so that I can take a picture of this contraption!.....Anyway, I've already explained my pathetic output of 1ml to 2ml.....Sure enough, I wake up....YES, I fell asleep for about 10 minutes!!!...and had spilled that pathetic but precious amount of milk from the one side. I was just discharged from the emergency c-section the day before and am obviously still on percocet. In addition to the ibuprofen and some other thing. ....I had actually said I didn't need the oxycodene for the "breakthrough" pain. I felt that I was doing okay with everything else. Well, truth be known, I was tired all day yesterday and walking everywhere. This was sort of dumb but at the same time I need to get around. ...anywho, I finished what I could pumping. I got what I could and finished my pumping without major incident. ...I came back to Ireland's room. Mikey said the nurse had banished him from her bedside in favor of a chair off to the side. Apparently, Ireland can smell us too and when we're around she gets excited and her blood pressure tends to go up. ...So with that, we decided to go to lunch, the nurse (Jane) was going to locate a lactation specialist to meet with me, and then we were headed over to the U to retrieve some milk we had left over in their freezer.

Once Mikey and I had lunch, I decided to take a break from walking everywhere and Mikey retrieved the milk from the U. Once we finally got back to the NICU, we were told at the front desk that we couldn't go to Ireland. What the heck??? ...Apparently, they had started the trial of taking her off ECMO. ...This sort of upset me because even though we knew it would be sometime in the afternoon, we didn't know when. ....We went back to the family waiting room where I fell asleep on the couch for about 30-45min. ...I couldn't believe that no one had come back to tell us what was going on. I woke up sort of grouchy, in some pain and just upset. Yet another breakdown was coming on fast! ...After a few bathroom breaks, too much waiting and really getting whiny about not feeling well, I went to the NICU's front desk and asked if they'd forgotten us and if someone could retrieve my medicine that was in a bag I had left in Ireland's room. ...At this point, I should of pumped some time ago and I should have taken those meds atleast an hour before. .....I broke down at the dang front desk. I was tired, wanted my meds and felt that the doctors and nurses had been sneaky in not telling us that they were going to do something major on Ireland!!!.....Well, eventually, I was medicated and the nurse practitioner came to speak with us.

The nurse apologized for not letting us know when this was taken place and made it clear that from now on, they'd inform us when these things were going to happen. I let her know if it was in Ireland's best interest, do what you have to do....but a trial of turning off the ECMO was something that I would of liked to have known about.....hard to explain but at the same time, it was common sense to me that they could of atleast called and said that they were going to do this.
Well, apparently Ireland did well that first half hour and then not as great the last half hour. The decision was made that she should stay on ECMO for two more days and they'd try again. They began to suction some of her tubes and found blood when they suctioned her healthy lung. They'd run some tests. They still felt she was doing well but that she really just needed to rest. .......Well, fine. What can I do? ...Well, what I did was just cry alot. I think it was a terribly stressful day. I felt that maybe we shouldn't have done so much when she was getting excited to see us. When we went back to her room, I was scared to "stimulate" her by talking and touching her. I actually asked the doctor if we could continue to talk to her. He said to say our hellos and go back to just finding and arm and placing your hand there and that's it. Ouch! ....We were reminded that for her looking sooooo good that she is on major life support and with that she has umpteen additional meds and pumps supporting her support!.....They want to continue to keep her sedated but keep the narcotics to her healthy minimum which means she may still get excited when she sees us and pop those cute eyes open and wiggle and...well, we have to learn to not get excited because then she gets excited....you have no idea how hard this is!!!!...To step back is HARD!!!.......Luckily, we had to get home for Tristan. It was, afterall, his first day back to school and there were those gazillion papers to sign. We still had no food in the house and laundry was backing up....We also noticed that I really needed to get some rest, too. We made the rule that Ireland needed two days and so did I. I'm not going to be the martyr and hurt myself through this. I'll use the dang wheelchair a little more these next two days, ask for something to prop up my feet while at the hospital, and take the two percocet (not one). I'll try to take a nap after lunch somewhere, somehow. My mission will be to finally meet up with lactation. I skipped two pumping sessions last night in favor of rest. My feet were extremely swollen when I got home so Mikey and Tristan did the grocery shopping and I took a warm rice pad to my feet and laid back in the recliner.

Well, my meds are starting to kick in and I should go back to bed. I pumped just before getting on here (1.5ml, thank you very much). I'll give a quick call to the NICU and then sleep for (hopefully) 3 hours more before I start the day. Prayers that Ireland is relaxing and her little lung is healing and preparing itself for the next trial.

Monday, August 24, 2009

Both Blue eyes







Just putting a couple pics from this morning... She's opened both up for us.. She loves having mommy by her side..

Pictures


This is my favorite picture. If you haven't already, make sure you read Mikey's post from last night, just below this one. He added several pics and wrote beautifully about her first time opening her eyes and also touched base on things we can expect later today. I am up because I am hearing the call to feed her a la breast milk. Frustrating as it is, I'll continue. I managed to eek out 2ml before bed (this is double what I've previously had) and just before beginning this post, I may have gotten 1/2 a ml. We'll see what the lactation lady says...I'm going to make sure I meet up with her sometime today.
Anyway, it occurred to me that all may not view some of the pics we post as I do....as Mikey and I do. See, this one that I've posted. To me, She's got this precious little eye seeming to recognize my voice, my face. It's just a little sliver of dark blue, just like Tristan's were....don't go on about all babies have blue....Tristan's are still that beautiful. ...Anyway, she has this little expression. When Mikey was taking these pictures, I had just finished having a complete break down with the thought of leaving her for the night, she'd shown us both eyes open for just a minute and then allowed me the pleasure of talking to her while she wiggled around and would peek that one eye open and sort of look around and then focus on us. ....Ireland had been still as possible and her eyes swollen shut due to meds and ECMO up until that moment. They had been weaning her little by little off of certain meds and were trying out how her blood pressure could handle this. This was tweaked in extremely tiny increments because the doctor had made it clear that her cannula (spelling? term right?) that are through the neck and into the heart (ECMO) really should not move and that movement and stimulation could affect so many different things right now....A call around 6pm or 7pm to the NICU, once we were home, actually confirmed that there had to be a little more tweaking of the meds because her blood pressure wasn't handling too much movement that well.....A call I just made, 2 am, to the NICU said that she is once again wiggling a bit and trying to look around and she's handling all of this fine. Her fluids are going down further and she's just doing well. Her blood pressure is looking well. Anyway, going back to her picture. In this picture alone, I see my little princess. I can imagine putting bows on those scalp sensors (or whatever they are). I don't see the swollen side of her face so much unless I'm trying to envision it as someone else may see it..I just see that she is sort of winking and her cheeks are just truly adorable. Her nose is just this tiny little pug thing in the midst of all those cheeks. Her little ear looks almost elfish and I dream of her being a fairy or elf for Halloween. The tape across her face almost acts as a little mask that is hiding this devious little smile and that little chin is just somewhat covered by those tubes. I don't see the cannula so much...think they're pretty well hidden. ....These moments with her were like yet another miracle. I felt God had just given me a gift. It was okay to go for the night. She was in his hands, not just the nurses'. That she was going to be ready for stories and talks tomorrow. That the cooling they'd turned off and felt the need to do to save her from the asphyxiation was nothing to her. She was okay and really just ready to do what she needs to do to get home. ....this picture alone is priceless to me. I shared it with all of you because I thought you'd like it too. ....Anyway, when you look at pics now from when she began this journey (many that we decided it best NOT to share), you can see that there are less machines/towers (towers=yet another med). Instead of a jumble of tangled wires near those tubes, there is a neat set of tubing/wiring that I now understand (for the most part) what it is needed for. Pictures of her sprawled out in her little "bed" show how her color is looking so good. And many times, she's just beginning to yawn and throw her limbs out....Well, I need to get back to bed. I just wanted to see if I could explain the progress we see. I also am hoping that you truly see how adorable she is.

Sunday, August 23, 2009

Looking into my beautiful daughters eyes
















Well what a day today. Chanda was feeling very good about her "rock star" assets that have come in. Something about her being able to do or provide for little Ireland right now feels good for her and for me. Today was a very bitter sweet day though. We had to come home today because Tristan is starting school tomorrow and he deserves to have some time to relax at home and get ready for his first day of 8th grade.. Plus Chanda and I were running out of clean clothes and our precious little kitty's were home alone since tuesday and we were sure that their box would need some tendin too. Thinking of leaving her today was just not a cool thing at all... We spent a good amount of time this morning with her and she is doing really well. They are going to "trial run" her tomorrow and try to take her off of ECMO. Very good news!!! We are a little scared but they are just going shut the blood flow off from Ireland and see if her little heart has rested enough to handle life on her own. If she's not doing well within the first couple of min they will release the blood flow from ECMO back on and go from there. If she does well for a hr they will shut off ECMO and one battle won!! They are also talking of doing her surgery mid to late week if all goes well. We have been told to not get to upset if she can't get off of ECMO this time. Sometimes it takes 2-3 times before they can come off. Plus, usually they are on ECMO for 7-10 days and Ireland will have only been on for 4 and a half. So little nervous about tomorrow but things have been well so we feel good about it. Well the afternoon came and Chanda got her staples out and discharged from the hospital then it was over to Primary Childerns for the visit we didn't want... saying good night to Ireland and leaving to go home without her. I'm sure all the other CDH dad's and mother's before us that have gone through this understand how much that hurt....But wouldn't you know it little Ireland had something to make this daddy and her mommy's goodbye not as hard has it would have been. We walked in and Ireland had the little eye mask on that Chanda had sewed for her. I walked over to her and lifted the mask off and my heart just skipped a beat... She opened up both her eyes and looked at Chanda and I!!!... now understand that on friday she opened them but it was early in the morning before Chanda and I were around. We had been hoping since then to see her do it again... Needless to say this proud daddy must have looked like a big baby cause these eyes were running with some of the happiest tears I have ever had. Those big blue eyes just looked at me for a second but its all I needed. I don't know if it is possible to fall in love with your little girl even more than the first time I saw her, but my heart was just beating like crazy... So for the last hour or so before we left we just sat there and watched as she would open and close one eye for us. I said to Chanda now how I'm I suppose to leave now!!!!!! Little girl just doesn't know that she's got me wrapped up like a big xmas present.. lol... Its hard not to be down the hall from her and I know its so much harder for Chanda to leave that hospital without her little baby. We know we are going to be there in the morning but its just not the same.... Well with that I should get some sleep... big day tomorrow.. ohh and some more pics of the cutiest little girl that I have had to pleasure to have with my Beautiful wife... Love my girls!!!!!!!

various ramblings and introducing nurses

I woke up at 430am and felt like a rockstar. At 36, I have defied gravity and was able to produce 1ml of nutrition for Ireland. Laugh if you must, this is good news. I had a reduction at the age of 19 that had cut my milk ducts, so even with Tristan, I never produced alot. I had said, at the beginning of my pregnancy, that I wouldn't even try the route of breastfeeding due to the frustration of barely getting anything. Luckily (once again focus on the positives here), I will have enough for what Ireland needs. She will not even begin to be introduced to breast milk for several weeks and it'll be in very tiny increments (cc's) at that. ....Unless, a miracle happens and I begin producing as if all my ducts are working, I will not ever really breast feed but simply pump so that I can see how much I'm getting out of each breasts.

Our visit with Ireland was great last night. She has been weaned off just enough meds to start moving ever so slightly. She has what I'll call a quivering chin. Our baby will stick out her bottom lip and squish her tiny chin and it looks as if she's just about to cry ..when out of nowhere, the lip falls, it looks like she gives a little smile and then she's left with this little dimple in her chin and just the most peaceful look. It is the cutest thing I've seen in forever (probably about 14 years ago with Tristan). We're trying to figure out where she got the little chin dimple. Mikey nor I have this. ...Also, we can see her starting to try to breathe. If you have little ones at home, maybe you watch them when they're laying on their back sometime and watch their little chest go up and down....well, Ireland has started this movement but it is distinctly on the right side only. It is still good and what we expect. Her right lung is proving to be very healthy.

The doctors are beginning to talk about surgery and removing ECMO. Big things will be happening this coming week. It's frustrating because every time we talk to a doctor (remember there is an entire team...2 docs making the decisions for machines, meds, day to day going-ons; day and night nurse practitioners that are sort of a go-between/coordinator for the docs and various nurses and technicians; day and night nurses that actually carry out most of her care prescribed by the docs and technicians; day and night ECMO nurses/techs that care for all things ECMO; and various testing technicians, pharmacists, nutritionists, equipment technicians, etc.)...anyway, let me start over.......It can be frustrating because things can change hour by hour. The nurse practitioner, nurse, and ECMO 'lady' all agree that the surgery will happen sometime next week but doubt it would be Monday, despite that having been thrown out as an option. ......These 3 ladies (yet to have a guy for one of these positions), NP, nurse and ECMO, tend to be the ones continuously at Ireland's side. For that reason, they are always in the 930am daily meetings and they are the ones that can usually answer any and all questions for us. So far, these 3 positions (NP, nurse, ECMO) have been held by different people, but we're starting to have some consistency. The ECMO tends to change from day to day and shift to shift because apparently to maintain "certification" these technicians must keep up with the amount of hours that they work on the machine and due to (thank God) the fact that Ireland is currently the only ECMO patient in the NICU, they must rotate. The nurses will start being consistent. They each work 12 hour shifts and tend to work several days on and then a day or two off, and they are either a day or night shift nurse. All of the nurses tend to be older and more experienced, due to the policy that the experienced nurses work with the most critical babies. The nurses also can sign up to stay with Ireland (which apparently Mikey and I can approve or disapprove, based on if we like them and are content with the care they give Ireland and us). We've already had atleast 3 tell us that they have requested to stay on with Ireland and another nurse (make that previous number a 4) do this as well but she is also certified in ECMO (so we've seen her wear both hats).

For the life of me, I can't remember the name of the nurse that is both a RN and ECMO, think it is Anna. ....we'll call her Anna for now .....Anyway, like I said, Anna wears both hats and does the 730pm to 730am shift. She has 3 children of her own and is very east to talk to. She's been Irelands nurse atleast three times and has also been her ECMO 'lady' twice. Anna answers all of our questions in a way that we easily understand what she's talking about. She was the one that had to call me the night that Mikey and I had to agree to put Ireland on ECMO. She let me know that it was hard to make the call because she knew how badly Ireland needed it and sometimes parents just don't agree to putting their babies on the machine due to all the scary statistics of what can happen. We talked last night about the pros and cons of ECMO and she said that sadly she has to remind parents that even with all the fears of ECMO, that without even trying it, your baby will most likely not live....I respect Anna so much already. Her job is not easy but she said cases like Ireland's are what make her love her job. She is one that saw Ireland at her absolute worst. She was her initial nurse after the emergency c-section, her nurse on the night of ECMO decision, she stayed on during the operation of placing Ireland on the ECMO, and has been there in her various positions since the worst and lets us know how much better Ireland looks each time she comes to work with her. Love this lady, and really must figure out that I've got her name right....think it's because we just talk and only said our names once.

Jane is the daytime nurse that Mikey is in love with. She is much older and has worked at the UofU for over 25years. She is from Massachusetts and her hubby is from Virginia. I've spent some time with Jane but not as much as Mikey has due to I slept on the afternoons of Wed, Thur, and Friday (much needed rest and recovery time). Those afternoons were Mikey and Jane time. ....I just think she's funny. She is very motherly and let me know each morning that I saw her that my job was to get out of there, sleep, recover, eat and work on breast feeding. ...Honestly, I think she just enjoyed gabbing with Mikey on her own. .....Anyway, Jane was the first to let us know that she wanted to stay on with Ireland and she hoped that we would all get along. Jane is very much in charge and sort of tells you what's what. She tends to talk about anything and I have a feeling we'll know everything about each other's lives by the time we are done at Primary's. But when it comes to Ireland's care, ...this is going to be a tough one to explain because I like this lady....she knows what she's doing and I believe if she thinks we're not doing something right, she'll let us know without hesitation. She drilled me on the importance of the breast feeding and how I would be no good to Ireland if I didn't take care of myself. Trust me, I'm smiling as I write this. She's excellent at her job and I think she's great for Ireland. She is tender in her care with Ireland, flirts and charms Mikey, and makes sure I know what my job is at any given moment (is this my mother, wink, wink?).

I met Bonnie yesterday. She is another daytime nurse and she apparently was there as the daytime nurse on Ireland's first day at the NICU and also worked with Ireland in some capacity on the day she went on ECMO. That day was obviously foggy for me, so I guess Mikey met her on Wed and I just didn't remember all the people I met that day. ....Anyway, Bonnie is just gorgeous so she's out, totally not standing next to her again!!!.....Kidding. She was great yesterday. She let me know how much of an improvement she sees in Ireland and that she wanted to be her nurse from the get-go. Bonnie is extremely informative. Without having to ask, Bonnie explained every single tube that is on Ireland. All of them. She explained why it was there, what it did...and in plain english. She also started using the masks that I brought for Ireland, proclaiming them the cutest things ever (therefore, bragging on my amateur talents and instantly a loved friend). ...Bonnie also pulls out the computer if you ask about any test results so that we can see things for ourselves. We've actually seen her xrays and ultrasounds. We've actually been there during some of these tests (even befriending the ultrasound technician). Bonnie stays. Ireland will be really in good hands with her.

Then, we met Celeste last night. I was such a motor mouth with Anna (ECMO hat was being worn last night) that I only know a little about Celeste. She is an older, hispanic woman with a really beautiful smile. She seems the most gentle and emotional with Ireland (this is just going on first impressions). Every single time Celeste went to change some tube position, or suction something in or out of tubes, or change a setting on a machine, she'd go get some sanitizer, rub it into her hands and arms, go touch Ireland somewhere, anywhere, smile at her face and then proceed to do her work. This was enough for me to love Celeste and say that I was sure she'd be great with Ireland.

Anyway, pretty long post, huh? I wasn't ready to sleep after I pumped so got on here instead. ...Please continue to pray for all involved (family, drs, nurses, friends, techs, Ireland...anyone and everyone).

Saturday, August 22, 2009

Chanda and Ireland first hand hold




So far today is going really well. We spent the morning with Ireland and getting all the latest updates and plans for her. She is doing really well. They are just trying to get all the fluid off her now to prep her for getting off of ECMO. Right now they are hoping to take her off ECMO on monday or tuesday!! If that goes well surgery on thursday or friday to repair the CDH. Lots of positive thoughts and well wishes is so great and we thank you all so much!! It's just be on belief that people from all over the country and the world for that matter has been following our little girl and are riding the same emotions that we feel day after day. In a perfect world we would all care and love each other no matter what is going on, but for now it is just so great that we have the support of soooo many people that we have never meet. Thanks to all and I hope that our little girl's story/journey will continue to help other who are going to go down our path or even heal those who have already been were we are.... HUGS TO ALL!!!!!

Friends and Family

Sometimes, I open this little computer that we keep stationed in my room, and even I get excited. I had no idea Mikey posted last night and am so glad that he keeps all of the technical stuff updated for everyone. ...Isn't she adorable? She's still quite a bit bloated but it's such an improvement than what it was! ...Poor Tristan, doesn't that picture just tell you how tired he is?

I wanted to say thank you for all the prayers. I can say with utmost certainty that I have never in my life talked to God as I have in these past few days. And I dare say, I'm pretty sure he hears about Ireland throughout the day from everyone. Funny how this little one has really brought back my faith. How can she not? ...I can not stress enough how much each and every prayer must be helping her. She is doing unheard of improvements in a very short amount of time. Because of the asphyxia and CDH, she has every excuse to be pitiful and instead....she is just amazing.

I want to thank my family. Immediate, extended, the churches reaching out from the past and present (last count of just my Doss family, 5 churches). Thank you. For my immediate family(parents), Mama, Daddy, Mike and Tammy, Donna, Papa Broad and Reg.....I love you all soooo much. I know that we, unintentionally, hurt you by wanting this time alone to bring Ireland into this world. I know it's just as hard for you guys as it has been for us...maybe harder at times because we can see her and atleast touch her. ...I've wanted each of you here at times, who doesn't want a grandparent oohing and aahing over the prettiest little one ever? I've really wanted my mom here because I guess, something about me having a daughter has wanted me to be closer to her (my mom). I would of loved to see Mikey have his parental support...he's been a rock for us and I am certain that he could of been comforted in ways that I couldn't have provided, especially during those initial hours. I pray that all of you have slowly realized why we made the decisions that we did. .....I would have wanted to visit and look my best and spend time with each of you (what I've needed is rest). We would of struggled on who can see Ireland at which time (only 2 at her side at any given point). We would of wanted to provide you each with the best of accommodations and constantly lent you a hand on directions in the city, where best to grab a bite, where to get a quick rest in the hospital and soooo much more. We probably would of been harder on Tristan because the parents in us would of wanted him to look his best and act the man, when he's been just fine playing too many games this week or watching too much television. ....there are a gazillion reasons that (with each of you living so far from us) we felt this was best. .....life goes on and unfortunately, at this time, our living thousands of miles from each of you makes it to where we have had to make these hard decisions. ...I'll be discharged from the hospital on Sunday and sometime that afternoon we'll be leaving Ireland at Primary's while we go home and figure out how to make a routine. It will most likely be one of the hardest things we ever do. ...BUT, I'd imagine that a comfortable "life" routine that includes some level of normalcy will return and it will be so much easier on us to have everyone visit at various times. ....believe it or not, the terms "so much easier on us" feels selfish to say or write "out loud", but Ireland needs for us to be this way right now. We are grasping in the dark with our entire world at times. ......I am rambling. Sorry. ...I'm just doing my best to convey that I know that this journey is as hard on each of you as it is on us and that deep down, it would be awesome if you lived across the street and could be with us each day. That is just not the reality of our lives. ...I can't wait to see each of you when the time is right and you can visit. Unfortunately, with all that we post of Ireland's continuing improvements, she will be here for a long time. And with that, I really don't know what else to say. I love you all. Thank you for helping us and praying and really, being there for us at any given moment. ...In a month or two, when many have not necessarily forgotten us but they've seen that we're dealing with this just fine, they may forget what we need or for lack of me finding the right words, their lives will adjust and they will have to focus less on us and more on themselves....I have no doubt that during those times, each of you will still have us "front and center".

Okay...no more. I love our parents. I can't wait to see each of you and for Ireland to be held and kissed by each of you.

I meant to simply post a thank you to family and friends. Your prayers are working. It shouldn't "amaze" me to see this happening, but it does. It's truly, corny as it sounds, AMAZING. Her improvements are recordable from one visit to the next. The miracles within her are visible. Hour by hour, tubes are removed, medications are already being weaned off. AMAZING!!!

Anywho, back to thanking everyone!! THANK YOU! THANK YOU! THANK YOU!
...I had a perfect birthday. I've never had so many well wishes in my life.

We also had our first visitors. They couldn't visit Ireland due to the hours, but we loved seeing Meredith, Josh and the girls. More than anything, it was awesome to have the girls making each of us laugh and smile. .......And Jeannie and the kids came....Jeannie doesn't count as first visitor because she has become my Samoan sister, I can't wait for my parents to meet her :)

I hope everyone has a great weekend!

Friday, August 21, 2009

Still looking good











Well little Ireland has been doin quite well. She started off with 16 syringe pumps of medicine and now is down to 8! She's peeing like crazy so kidneys are working fine.. Doc were worried about them because of the lack of O2 during birth but she's fine on that. Her blood pressure is doin great. Echocardiogram and head ultrasound's have all come back a ok. Tomorrow around 9 am she is due to come off the cooling of her blood. The will start to heat up her blood back to normal temps. Right now shes about 92-93 degree's. As far as the ECMO goes she is doin really good on it. They have taken her down to about 20% on it and her BP is still very strong. They talked to me this afternoon about if she keeps up the pace they are trying to take her off ECMO on Tuesday or Wednesday and depending on how she is holding up may do her surgery to put the intestines and stomach back down on one of those days also. Still keeping in mind that this is all best case seniouo and something could change but as we have learned from everyone else here on the blogs that have been in our place.. take the good when you can and that is what we are doin today... Thanks to all for the well wishes and prays and whatnot... Your comments are great encouragement to both of us everyday...

Mikey

P.S. some more pics of "daddy's girl"!!

Running with the good news and happy birthday Chanda!!! xoxox

Its Mikey,

You all thought now that Chanda is back that I would just leave you all... well you can't get rid of me that easy people!!! I got some very much needed sleep last night thanks to my little girl having a much better afternoon and nite... We are on our way to the 930 get together with all the doc's and nurses, specialists etc... will post on the outcome later... thanks to all for the love and well wishes... Ireland says "THANKS"!!!!!!

Thursday, August 20, 2009

GOOD night

Well, Mikey and I did our night visit with Ireland and she was doing wonderful! I'm still heavily medicated and can only understand things to a point....so with ultra simplicity I present her numbers for you. The number that is supposed to be between 40 and 50 but best at 50 was............50!!!! The 2 numbers that were supposed to stay the same.....were flipping back and forth between the same and one off!!! And for the CDH mama's that have been there before me...she is peeing lots!! For those that don't have a clue about the urine output.....basically Ireland is extremely swollen from the ECMO (bypass) and she is doing very well passing these fluids. And mystery of all mysteries, our baby has pooped TWICE!!!! Those in the know, well yes, we're proud. For those that are learning, pooping tends to mean that the stomach and bowels (that are still in her chest cavity) are working properly! For the Brady's out there, yes, this confirms your genetics :) !!! .......I will sleep well tonight. Ireland's doctor did walk by and say that the pooping was indeed a mystery and something to look into further (must they all be so brainy and scientific)....but I choose to believe that this is going to prove our baby is performing miracles.

Yes, we know to be prepared for a roller coaster with many ups and downs but tonight feels celebratory! Your prayers are working. So thank you everyone!!!!

up til now

First off, Mikey has been incredible, huh?! I spent a good amount of time last night just reading what Mikey has written and also the post from our friends and family. Thanks so much for all the thoughts and prayers. We've needed them.

As for me, I am well as can be. My entire pregnancy has been healthy and pretty great. I've learned all I could about cdh and well..........what happened is beyond belief.

Mikey has pretty much updated step by step so I'm sure I'll be repeating things....but here is my story.

Tuesday morning we were up at the said time of 430am....I was up at 4 because this was apparently my body's own determined time. ....anyway, we all got ready, did our thing and were out the door by 5. We started our journey pretty dang excited and all that was left, was to call to make sure emergency c-sections wouldn't push us back. We called, were told no emergencies....great. Said we'd see them at 6am and the other end of the phone said "name again"..."Brady"...."oh, we've got you down for 1230pm, cut at 230pm".......this begins our drama.

I was pretty distraught. In hindsight, I was overly upset but lets remember that I'd been told 7am for atleast a month and was told in the recent week or two that I'd have to wait about 12 hours before I could see my baby after the c-section. .....Well, do the math. If I was being cut at 230pm.....who was going to take me to see Ireland at 230am? I was beyond upset!!! I was an official wreck. Well, we turned around, went home, called a few folks and tried to relax. Mikey and Tristan did much better than I with the whole relax thing...T slept until 10 and Mikey just about had to be woken up. I fell asleep for about an hour and then spent the rest of the time playing solitaire.
Well, we all got prettied up and decided to do our best of getting excited again. This was not as easy as you'd think. I was still under the impression of having to wait 12 hours to see her and who was going to wheel me to my baby in the middle of the night. Actually, I was beyond hysterics. Once the nurse had us in what was to be my labor room, I broke down in front of her and commenced to look like an idiot that wanted someone's job for not calling us when there was a major scheduling problem and then to reschedule us at a time that would make it hard for us to see our baby....well, I can not remember a time that I cried so hysterically. .........Fortunately, this irritatingly cute nurse had seen my type before and ended up being some sort of angel that had me calmed and assured in minutes. She assured me that I'd see Ireland as much as I wanted and that the nurses were there for me.

....to keep a long story somewhat short, the nurses have been here for me. Also, because I could probably write entirely too much for one post AND Mikey has done a good job keeping everyone updated, I'll just try to quickly update up to now.

Well, I calmed down and changed into my lovely hospital gown. I spoke with several nurses and doctors about various topics of c-section, CDH, baby names, important paperwork and recovery for myself and later for Ireland. I was given an IV and then the ultrasound machine was rolled in. Sure enough, Ireland had flipped to head down. Crazy girl, when did she do that?!

We were moved to the big room across the hall and back to plan one where I would have a vaginal birth. .........After 2 cervix softening pills (right inside you and pushed painfully into me , or it felt that way) that took 4 hours a piece to take, I had actually started contracting pretty much on my own. Some contractions were stronger than others, some were felt and some were not. I believe I was given one more of the cervix softening pills and the pitocin (contract starting medication) was give to me a little before midnight. The plan was a very small dose of pitocin and just a very gradual increase in the drug because the NICU would be better prepared in the morning and Dr. Silver would also be there. I sort of on and off napped during this time. At one point, I went to the bathroom just because I felt that I could really have a BM and truth be known, sitting on the pot was sort of comfortable. After a minute or two of comfort, I heard that swish and was pretty sure my water had broke. Mikey came in to look because the swish felt different and sure enough he saw quite a bit of blood in with the amniotic fluid. He called the nurse in and she simply had me go back to bed and she'd talk to the doctor on call and see what the plan was from there. ....good patient that I am, I went back to bed, slept some, and slowly got to that point where I was just whiny and uncomfortable. Nothing was working in the bed so I had Mikey help me to the bathroom again. I think I was there for all of 5 minutes, somewhat comfortable just sitting there when there was another swish sound and i knew more fluid was in the toilet. Mikey came to see what I needed and I said to just call our nurse, it was time to get something going...plus, she hadn't gotten back with us on what was the game plan. Well, I got back to the bed, the nurse had arrived and started to check me. The next thing I remember is hearing something about the cord, feeling as if someone had a fist inside me and having a mask slammed in my face where I just knew that I was supposed to breathe.

Many hours later, I wake up from a fog, ready to go back to sleep...stay up for some reason and start to talk to Mikey. He calls me Mama and precedes to let me know that I had an emergency c-section. Whoa!!! That was just weird because I don't remember any of that.

I had a tough time realizing that Ireland was born on a Wednesday and that I gave birth. Nurses are coming in giving me meds, I'm sort of in pain and I just want to see Ireland. Somewhere at some point, I sign some papers, Mikey kisses me and my baby girl is rolled in to see me. I only really see her legs and part of her chest. I see a cute little baby but not really, I can't see her face or anything. I can't get out of the too low bed and she can't be moved in her too high isolette. ....Mikey gives me another kiss, tells Tristan to take care of me and lets me know he'll take lots of pics and he'll be back soon. ........I am moved to yet another room, meet more nice nurses and just sleep. Tristan helps me with anything and everything and I see that my man/child is good. He's really good. Better than that even. ......My bestest friend, Jeannie has been there when nothing was happening and then becomes my sister, mother and nurse all in less than a morning and early afternoon. Mikey has become daddy. He's always been Tristan's #2 daddy and now he's Ireland's numero uno!!......I all of a sudden really want my mama here.........I learn that our beautiful baby girl has asphyxia (result of umbilical cord having been pinched off and taking away her precious oxygen to her brain), in addition to pretty severe pulmonary hypertension (somewhat expected with CDH but in truth we were expecting this to be a milder case). .......My throat hurts because a tube was inserted in my throat when I had to have anesthesia for the emergency c-section. My incision hurts....and I am so tired. .......I want to see my baby. Well, baby girl has been having a tough time getting all of her initial tubes and such in her body. Her veins are awfully tiny because she's been on a cooling blanket. She needs to be at 35-36 degrees Celsius to help ease what has happened to the oxygen that was cut off to her brain due to the asphyxia. .......Tristan has met his baby sister. Mikey has spent some time with daughter and is distraught because he can not do for her. Mikey has also been told to stay away several times because the doctors have been working on getting certain procedures to work on her. ....Some point during the afternoon, Tristan watches a movie and Mikey rolls me to the NICU so that I can properly meet my daughter. She's so beautiful and honestly, just fat and cute. She's actually 7 lbs 12 ozs and 21.5 inches tall. Perfect really. ....did I say that already?...I'm told to ask questions. I do this and with each question, I get the answer that they can't answer that, they just don't know, time will tell. I just had percocet about 1/2 an hour before Mikey wheeled me to Primary Children's, so of course the facts that they give me, I'm having a hard time retaining the information or even understanding. .......I'm pooped. We throw kisses at our baby girl and leave her in the hands of the good doctors and nurses. .....I see that Mikey is also exhausted. On the way back to my room at the UofU, Mikey and I decide that he and Tristan should go on to the hotel and that we all get a good night of sleep. It's still somewhat early, but they need a decent meal, Tristan needs a change of scenery, and I really could use some time to process all of this. .....Mikey lets me know that he'll come back a little later in the evening, so that he and I can see Ireland again before we go to bed. ......After too little rest, too little to eat, and having talked to family on the phone, Mikey shows up and we spend a little time talking and then we're off to wish Ireland a good night. ........She is so still now. She was given a "paralytic" drug. She had been fighting her machines nonstop and she needed to rest. .....We love her so much already! We say our good nights. .......Mikey is sent back to the hotel with some aspirin, love, many thanks for keeping everyone updated and a wish that he'll finally get the deep rest he needs. I go back to my room for some breast feeding 101 and then to try to rest. I read all that Mikey has been posting and just love him even more. .....I hurt but am also amazed that it isn't as bad as I thought it would be. ..........I am woken a few times during the night with pain and some meds. Around 3am my phone rings. It is the NICU and decisions need to be made. ECMO has entered our life. I'm at that time being checked for UTI and having a catheter inserted for a sample and needing to call Mikey....What day is it again?........Well, I take care of my basic needs and call Mikey and let him know that the nurses know that I'll be needing a wheel chair and that Tristan will be in the room......Mikey and I meet with the doctor and we agree to start ECMO (heart/lung bypass machine). This was our biggest fear but we know that this is what is needed. .......Apparently, asphyxia and pulmonary hypertension is a new one for all the big CDH docs. Our doctors have been consulting with the "cooling" experts to prevent further damage to Ireland's brain (due to the cord prolapse). The pulmonary hypertension that we thought would not be such a big deal with our "best case scenario" baby is now off the charts. ...Essentially, we had prepared ourselves for so much, while believing the best, and have instead landed in this vast place of newness and scary terms. ........The ECMO took a very long time to settle into place due to the complications with cooling. .....Mikey and I left to try to get some rest. I got a call sometime this morning that she was stable. With Mikey having been sent back to the hotel to finally get some sleep, Tristan wheeled me to Ireland. .......She is now very swollen and so very still. It's spooky to me. It's hard to look at this precious baby of mine. I'm somehow staying strong and ever positive. I listen in on a meeting of doctors, nurses and experts. I'm so tired. I'm hungry too. I take notes and don't really understand them. I stop taking notes because I really have no idea what I'm writing down. I talk to the nurse. I feel pride that my son is acting a responsible man and loving brother to this precious new life. I touch Ireland as I'm instructed while scared of hurting her or touching one of the flimsy tubes. I listen to that loud pumping Nitrous Oxide machine. I look at the bright red blood going into her neck and the darker blood that enters the ECMO machine. The good nurse is telling me that I should go get some rest. She's right. I'm so tired. ......Tristan wheels me back to my room. I talk to Mikey and we break down over the phone. My nurse takes more vitals from me, I'm given paperwork for a birth certificate, and I have a conversation that I don't really remember with a social worker. I eat a lousy sandwich and fortunately, for savings sake, they have an extra lunch and give Tristan a lousy sandwich too. Mikey calls and he's on his way, stopping to see Ireland first. ....Well, I'm hurting. The greatest nurse I can have talks with me a bit and out of nowhere, I finally break down. I hurt, I'm tired and my baby is at that hospital across the tunnel and I don't know what to do with myself. She hugs me and says it's about time because I need to grieve. I don't want to grieve but I know what she means. It feels good. ........She leaves, brings back some strong medication and explains the new pain medications I'll be on and at what doses. I laugh and say that I have no clue what she's talking about. She hugs me again, leaves and I write this post. Tristan has been my nurse and Mikey will be here at any time. .....I'm tired and plan on getting a nap now. .....I am told to not ask what's happening tomorrow or next week. I ask how the hours are going and if it was a good "shift". ....I feel guilty because I'm tired, wanting sleep and not standing over Ireland. ........I hope she can feel the prayers and love I'm sending to her. ...........this is it for now. I think I've caught up everyone. Please continue to pray for us, we need them. ...my eyes hurt.

Wednesday, August 19, 2009

some more quick pics


just wanted to put some more pics really quick...I thought those with CDH babies would appriecate the xray pic... shows the right lung looking good, they little left lung and the intestines on the left... also the wire tube is actually in the stomach were you see it curve back up... Then same pics of us with the little bundle of joy...Chanda is doin just fine.. Ireland's numbers have gone down since the morning... Guess they are having a meeting in the morning to decided on a few options... I still need to feel you all in on the actual happenings of the day after the c section and what went down.. right now we are both just beat and tired.. I feel bad cause me and T are staying at the hotel and leaving Chanda at the hospital but We all need some sleep very bad!! Lots of love to you all that have posted comments... you keep our spirts up... off to sneak on more look at my little girl before bed...








Her she is... Ms. Ireland Rose Brady!!

I have so much going on right now that I cant even begin to try and get it all on here.... The best I can do is show of the most precious thing my eyes have ever seen!!! Today I have found something the is more powerful that anything else in the world... The love of your child. I am greatful for what I have been giving and now understand what all the other fathers have felt at the first moment you see that bundle of joy... I cannot say what I feel.. therefor I give you Ireland Rose Brady... These Pics are worth a million words!!!! Daddy loves you!!!!!!!









Ireland Rose Brady has arrived!!!

In dramatic fashion she came... Chanda was in the bathroom and wanted the nurse and when the nurse came in she said Irelands heart rate was low.. so the doc's came in check her cervix and found the the umbilical cord was in her vagina.... so in a flash or blur to me.. they wisked her out of the room in for a emergency c section... I didnt get to go with her so I was a wreck... poor Tristan.. as soon has I heard umbilical cord I grabbed him and sent him out to the waiting room. They took Chanda out of the room in less then a min and I was left standing there going "What the F>>>>>!!!!! Well Chanda has finally came back into the room.. she doin as well has can be expected... We haven't gotten to much info on Ireland yet. From what I have heard she is struggling with her O2 level which we would have thought. Blood pressure seemed fine and she was kicking and trying to breath... I'm hoping to get a update from the NICU here at the U within the hour. I was told she has lots of brown hair... perfect round head and is beautiful... just like her mother of course!!!! Will update again once I find out more...