Don’t Give Up On Me Now

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Latest update on Lil’ JaMonkey. She seemed to be doing well. In fact they told us yesterday that we will probably get to take her home in AT LEAST a week. We WERE so excited.

In order for her to be able to come home there are a few things that Preemies have to be able to do before they will release them. They have to be able to sustain their own body temperatures without the heated bed. Breathe completely on their own without any help. Take all their feedings by bottle or breast. And what the NICU refers to as “Outgrowing their As and Bs” (Apnea and bradycardia).

So far she is off any breathing machines or oxygen. But occasionally when we hold her her stats have dropped and she turned blue. Me and the nurses then had to stimulate her to take a deep enough breathe.

Her feedings are currently every other feeding. So every other is either a bottle feeding and the others through her NG Tube, which I’m happy that that was the only tube on her for the last week or two. She nurses from me normally for only a few minutes. She is so tiny and if you’ve ever met me in person you know my breasts aren’t small so it’s very hard to nurse such a tiny baby. A nipple guard helps but I’m fine with her bottle feeding because she is still getting breast milk.

She hasn’t had any trouble since they started putting her in clothes. When she gets a little chilly they throw the hat on her and she gets nice and toasty.

Now the As and Bs are an entirely different story. Lil” JaMonkey is currently on 2 different medications. The cardiologist told me (along with reading lots of support group posts) that most infants only require 1 medication to help regulate the heart for the SVT attacks. He then told me that she was being especially difficult. The medications that she are on are causing her heart rate to be low but now they are dropping too much and too many times.

I mentioned that they have to find a happy balance in her meds so that it controls the SVT but also doesn’t cause such bad Bradycardia’s. It always seems to be looking good until the last minute!

We had an SVT attack (heart rate above 250) on Monday that was broken by a Vagal Maneuver called the Diving Reflex (Ice on the face). Thursday she had another right after I left that they had to do another maneuver called Knees to Chest. Today she had two while I was holding her but she was able to break them on her own. But among all those there are lots of Bardy’s (drops in heart beat). Bardy’s tend to also cause oxygen and breathing to be affected also.

Needless to say that is causing a longer stay. They have also told us that she will be going home on a heart monitor to will alarm when she goes too high or too low.

Today however after we left today the doctor called to let us know that they gave her some kind of vitamins and iron and it didn’t agree with her at all and she spit up so bad that they had to aspirate and mask her to help her breathe. The doctor called to let me know that she was alright and the nurse was in there when it occurred so they were able to help her fast. (Heaven forbid what would have happened if she wasn’t in there.) But this showed her that Lil’ JaMonkey is not ready or close to going home. That incident was going to push it out at least another week.

So for those of you that have kept us in your thoughts and prayers please don’t give up on us yet. We need your strength. Thank you for keeping me positive when it’s REALLY hard to keep my head up.

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7 COMMENTS

  1. Ariel used to pull that NG tube out, she hated it. They had to replace it more than others. I’m so glad to hear you guys should be able to take her home soon! Make sure you are still doing kangaroo care that should help with regulating her breathing. I had the same problems with nursing Ariel but of course no one really helped me at my NICU, unless you count the nurse that came and squeezed my breast really hard to squirt breast milk in Ariel’s mom. UNASKED FOR and UNWANTED.

  2. Just want you to know that I am praying for you and Lil JaMonkey. I hope she grows stronger every day so that she can come home and be with her family really soon.

  3. Megan, I’ve been following your mom’s updates on JaMonkey, on FB. Glad you have a page, so I can get more info. Have been keeping you and the whole family in my prayers. God bless you and the whole family. Praying that JaMonkey will be able to become stabilized enough for her to come home soon. I know this has to be hard on you.
    HUGS!

  4. Oh, I am so sorry. It is such a roller-coaster ride. But, just remember we are never given more than we can handle. I know how hard it is and how emotionally draining it is. We spent 4 1/2 months in the NICU with Princess Daughter. I was lucky that she was my first and I didn’t have other kids at home.
    She was very funny; when she had decided she was done with something, she would get rid of it, i.e;
    when she didn’t want the ventilator any more, she pulled the tube. After we had her home (on oxygen) for a few months, she kept taking the nasal tube off and would have a fit when I would try to put it back on. So, I took her to the doctor and her sats were in the mid to high 90’s so we got to leave it off of her. I remember one night at home, we were sleeping so good and the heart monitor started going off, we flew out of bed and ran in her room and she was laying in her bed laughing & kicking. She had pulled one of the wires loose. So, the next day we called and set up an appointment for the night study to see of we could get rid of the monitor. It was over and done.
    So, it may not seem like it right now, but it will get easier and as the years go on, you will be amazed at far you & her have come.
    One more thing, I don’t know how it is at your NICU, but at our’s (23 years ago) they had everyone pretty much in the same area. When Princess Daughter was 4 weeks old, they brought a baby in that was soooo sick and put her right next to us. I was sooo mad. After 2 days, I finally told the nurses to move us. It was not fair that we had to go through ALL this again! Princess Daughter was starting to do better and that other baby was incredibly sick.They didn’t know from one day to the next if she was going to make it. It was fair to us to see her going through that and it wasn’t fair to those parents to see our’s (finally) doing better and their’s not.
    Keep your chin up and I continue to keep you in my prayers. xoxo

  5. It sounds like you have a little fighter on your hands! I know you’re anxious to have her home, but I’m glad she’s in such good hands at the hospital!

  6. Oh Meghan, that’s so hard to have the roller coaster of good news and not so good news, especially about your adorable little baby. She’s definitely fighting, isn’t she? I wish it were an easier path for all of you, and I hope and pray that it will be soon. You are definitely staying in my thoughts and prayers, and I hope that the next post we see on her is a joyful one filled with good news.

    And ick to the heart monitor at home! Go L’il JaMonkey!

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Meghan Cooper is a writer, content creator, movie critic, and geek living in Atlanta, Ga. She loves movies, traveling, and lots of coffee. Member of the Southeastern Film Critics Association, Georgia Film Critics Association, and Atlanta Film Critics Circle.

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