Conversation with our nurse….

So our nurse sat down with me around 5:30 because she is also one of the ECMO coordinators and is well versed with CDH babies and wanted to answer any of my questions and make sure we understanding everything. Here are some of the highlights learned…

1. We are currently in the honeymoon period, so we don’t really know anything yet…
2. Finley has mild to moderate pulmonary hypertension- no one had explained it that way yet.
3. She had a very bad hour today around 4 when she tried to move her to her side and her heart rate went up high and it took Finley over an hour to come back down- that was not good.
4. It is really important to keep stimulation to a minimum for Finley – that means lights, voices, etc.. We will need to keep her visitors to a minimum and if we do let you see her, remember to keep your voices low and don’t be upset if we don’t let you stay in the NICU for very long. Also, things can change quickly so we may tell you it’s ok to visit and then it’s suddenly not ok.
5. She really wanted me to know that I need to leave the NICU every day and see the world outside, I need to keep myself healthy (if I am sick I cannot see Finley in the NICU), etc.  She said to have people maintain a single point of contact for information (IE – this blog) so that I don’t have to repeat myself with the same info and drain myself further by saying the same stuff over and over…
6.  We also talked about typical issues CDH babies will face down the road, respiratory, feeding, physical, etc…  Some things I knew, some things were new.

All in all, it was a really good conversation – though very heavy and took it’s toll on my emotions which are already very raw today – I think my milk is very close to coming in on top of all the other hormones going crazy in me, and a slightly stressful situation. So I have cried a lot today.  Going up to see Finley at 8:00 after the shift change to bring her some gifts from home, see her diaper change and bring her more pumped goodness – finally getting out enough colostrum to deliver to the freezer!

Spent some uplifting time in prayer with Jeremy & Erin Cowan and Cody Schuman today – so thankful for the many, many friends, family, and others we don’t even know sending up prayers on Finley’s (and for Jon, Rowan and my) behalf. Prayers are our food and water.


4 thoughts on “Conversation with our nurse….”

  1. Just got home from our family get together & hit the computer first thing. Sorry she had a rough afternoon but glad to hear she is pushing forward.

    The nurses are right, take care of yourself. Alicia wound up with a fever from an ear infection one day and was very upset the whole day she had to stay home.

    Many in our family are adding your family to their prayer lists. Where two or more are gathered….

    Shelly Moore

  2. Praying for Finley and your family. Fight baby girl fight! Finley is still doing great from reading your posts, a strong warrior princess for sure! Look at it this way, Finley knows you are there…she gets excited “stimulated” to hear your voices, to feel your touch and can’t wait to be in your arms. She is dreaming of that day too. Stay strong for your baby girl! The nurse is so right about taking care of yourself. Right after my son had his CDH repair, I came down with a really bad cold and was banned from the NICU. They wouldn’t let me risk getting my son or other babies sick. That was very hard. My son just had surgery and I was being banned and couldn’t even wear a mask. Do take care of yourself and get plenty of rest, for Finley needs her mom healthy and strong. Limiting her visitors to just grandparents and immediate family is good too, for you are limiting the germs being brought into her space. An infection in a NICU enviornment is very hard for our little ones to fight off and will be even after you bring her home.

    Thinking of you and praying for your family! PRAYING FOR STRONG AND STABLE DAYS FOR FINLEY!
    Much love,
    Tracy, Ian’s mom from CHERUBS

    1. Praying for your heart. This time of separation and reunion (over and over) is SO hard but not impossible. Christ makes all things possible.

      Good job with pumping!! Keep it up. You are doing such a wonderful thing for Finley right now. Breastmilk is life to medically delicate NICU babies. Remember that even though your touch, your voice, and your physical presence are limited right now, you are giving her the world through your commitment to pump for her. And take heart that regardless of what you are exposed to “out there”, even if you come down with a cold that keeps you away for her for a bit, you are providing precious immunity to Finley through your breastmilk that she would be absolutely unable to get without it. That is such a gift you are giving her!

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