Tuesday, August 25, 2009


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.


  1. Oh sweetie, I feel your pain. In so many ways. First, if your milk doesn't pick up, try the Fenugreek supplement. You'll be shocked! The first time they trialed Carter off of ECMO, they had us wait in the waiting room for hours and hours. Finally, a resident Dr. came out and apologized...he was only off ECMO for about 20 minutes but they FORGOT to come out and tell us!

    It took Carter 5 attempts before he was finally able to make it off ECMO, so don't give up hope. Baby rehab stinks, but she'll get through it. When you get to that point, a lot of patience and snuggling will help.

    Hang in there and take your meds!
    We'll be thinking of your family.

  2. I love you Chanda, and your right, I don't think anyone but those who have shared your shoes know how hard it is not to be able to love your daughter the way god intended. It is our instinct to want to wrap our arms around our children and love them. At least you know that she is loving you back even though her excitement has to be controlled, the truth is, it is progress!!! and it is just another step in the miracle of her existence. I am going to pray that the time flies for you to get through these rough first few weeks. You and Mike are going to be forever changed by this experience and every trial you make it through will find you more aware of the "wise old soul" that has been stowed away within the recesses of your spirit.

    So many people are here for you. Don't hesitate to ask those who are near you for help. Let people bring you dinner, let them help with laundry, Believe me so many people are aching to help you and to be a part of comforting you in anyway you will allow. I wish I was there to cook, clean, and rub your water retainin swollen feet!

    Hugs and Love, Tree

  3. The first time the nurse told me to NOT touch or speak to Kayla- I cried and cried- it was awful!! How do you not speak and hold your baby the way you know she needs? I totally understand...it's hard- but it's best for them. Once you get her home, you can snuggle all you like... unless she is like K and doesn't like to snuggle- haha

  4. Hope Ireland has a good day today! You do have to take it easy and heal Chanda, for you don't want to come up with a cold or get so run down. The nurses banned me from the NICU, for I came down with a cold after Ian's surgery and was not allowed back until I was perfectly healthy, for he couldn't risk getting sick in his condition. That was so hard. Don't let her not coming off ECMO get you down. They ended up doing Ian's surgery on ECMO (which we didn't plan)...we came in one morning and they started telling us surgery was today and they were doing it while he was on ECMO. He did great and was able to successfully come off the second time, 2 days after his surgery. That is great they are on top of her narcotics, sounds like they have changed in that aspect. We had to bring Ian home on morphine and continue the weaning at home...no fun at all. Thinking of you all and praying hard for Ireland that she continues to heal and is getting stronger!!

    Hugs, Tracy

  5. Your story and this little baby Ireland is touching my heart and soul!!! My prayers are with you and this adorable child~

  6. We keep praying and thinking of Ireland and you guys everyday.Hang in there and be strong. Lots of Love

  7. BEen thinking of you and little Ireland!


  8. Thinking of you and praying hard! I know you're sick of hearing this probably, but get some rest. Ireland needs you rested! Keep the faith!

    Kamryn's mommy