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

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.

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.

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!!!!!!!