Sunday, August 23, 2009

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).


  1. Thanks for introducing us to Ireland's caretakers. It's awesome that you and Mike are so comfortable with the nurses and can feel good about leaving Ireland there. We will continue to pray for her and look forward to your updates. Love you all.

  2. I'm glad that you have nurses that you like, and one's that are requesting to be with Ireland. We had a couple that really stuck with us, and led us being the blind into what we needed to know. They arranged group meeting with us, and all of the people involved with Kristen into one room every couple of weeks so that we could really get clear idea's of what was happening. I'm happy to hear that Ireland will potentially come off of ECMO and be repaired next week. I again thank-you for allowing me to follow in your journey, and allow my emotions to rise back again, (as strange as that may be it's quite healing even this far past) I can't wait to see more of the beautiful pic's of her!! Take care! Bobbi

  3. Those primary nurses become family that is for sure. So happy you have found nurses you like, for it makes the days and nights easier for you and Mikey. Praying for a good week for Miss Ireland and that she will have her surgery and come off ECMO too!!! Keep fighting Ireland!!

    Thinking of you,

  4. Thanks for the update Chanda. Did you ever think of writing a book some day? You are great with words and I look forward to these updates. We are praying that you all will have a great week (Lynsee has been praying for her every night, too). Love, Bonnie

  5. You are so wonderful! I feel like I am totally getting play by plays. I love your long posts and feel so much closer to your situation through your communication and descriptives. I am just so grateful for your love of writing and your willingness to be so open. God only knows how much comfort it provides to those who wish we could be there to ease you through the process is some sort of way. It's good to see that these givers of care and comfort (Nurses) are filling shoes in a way we could not.

    Please keep writing; I love reading!!

    Your family is soo very loved, Tree