Critical

I’m sitting in the NICU as I write this post. Mary is in the chair next to me taking a long overdue nap under my hoodie.   It’s been an extreme lack of sleep all week for both of us, especially the past two days.  It’s my first night back here since Monday evening.  My work schedule didn’t really allow me the time to get into the NICU.  The feeling of emptiness in my heart lingered with me all week, but I was grateful to be working, and at ease with crew I was with.

Tuesday morning started off as a tough one.  Our little buddy Jake, my cat of eleven years was not doing well the previous two days and it was noticeable.  He had been struggling with heart and liver disease for almost two years, but never really experienced any extreme pain.  My parents took him to the vet, while Mary was at the NICU, and I was working.  The news was short and sad.  Jake never made it back home.  He was in pain and had to be put down.  We knew this was coming eventually, but it was more sudden than we hoped for, and it hurt like hell, especially since we we weren’t with him in his final moments on earth.  I saw him for a couple of hours on Monday evening before my visit at the hospital and gave him some of my pork chops, one of his favorite dishes, and he fell asleep purring in bed with Mary later that night. I haven’t been home yet, but I can feel the void, knowing he is no longer with us.  I’m actually going to miss him trying to eat our dinner every night.

Meanwhile, Remy was not having the greatest day Tuesday.  Things remained a puzzle.  Mary arrived early to be there for her biopsy, but it was postponed until Wednesday. Remy was still struggling to get anything out and still unable to take any feeds.  Mary kangarooed with Remy and felt her experiencing heavy twitching once again.  The next day Remy had her biopsy, which went without a  hitch. We are awaiting the results.  Later that day she would be put back on EEG for the second time.  Unfortunately, it confirmed she was experiencing seizures.   Fortunately, they were not nearly as frequent this time.

With respect to so many details during the past three days, which I could write several posts about, I am skipping over them to get up to speed Remy’s current condition.  As of this morning Remy is in critical condition.  She has an infection, and is very sick. She is  intubated and being administered nitric oxide.  The intubator is giving her constant puffs of air through her lungs, 420 per minute to be exact.  The EEG is running and another machine is keeping oxygen in her lungs while releasing carbon dioxide from her lungs, at a rapid rate.  Her heart rate is extremely high, steadily between 200 -220 per minute.  Her blood pressure is extremely low (her maps are about 14 and we need them to reach at least 32, 33 before we can let out a sigh of relief). One of the biggest goals, right now is to get her blood pressure up.  Just to paint a small piece of the picture, when I was last here on Monday night, there were nine open outlets behind her incubator.  Not one is open at the moment.

Remy is on just about every and any antibiotic that she can possibly be on.  I do mean that literally.   She is getting blood drawn in order test her blood gases every two hours.  She has I.V.’s in all but one limb.  She has an A-line in her left arm, which just a few hours ago was in her right arm, and several drip lines entering the I.V.s in her feet.  She is being administered fluids such as Dopemine, Epinephrine, Phenobarb, Keppra, caffeine, sugar, fats, electrolytes and more.  She has leeds covering her head, two tubes down her throat.  One is breathing for her, and the other suctioning out bile.  She has a catheter, an oxygen monitor on her foot, four monitors on her chest and a pad covering her eyes from the light.

It is medical technology at its best and Mommy and Daddy’s worst nightmare all at once. It’s an experience that Remy is clearly uncomfortable going through. She looks as if she is in a coma, for the most part. She is not, thankfully! The small occasional grunts,  slight hand grips and toes curls on our finger show signs of strength.  Her white blood cell count is down and she is slightly nuetropenic.   Over the last few hours she is showing signs of improvement.  The NICU nurses and doctors are working very hard.  I cannot express enough how grateful we are for them! Lillian, a frequent nurse of Remy’s, has been with her for four nights straight and has been taking such good care of Remy, and us for that matter.  She is our superhero this week!

This is a tough day!  The toughest day we have faced yet. While willingly and gratefully going back to work, getting back here to be with my girls could not have come soon enough.  I did not expect it would be in this state.  We are with Remy and by her side.  We talk to her softly and tell her to keep fighting hard and keep getting pissed off when a needle pricks her.  We are scared, and upset for the pain out baby is experiencing.  Who knows how much we’ll sleep tonight but who cares.  We just hope she continues to improve through the evening.  This is not an easy experience by any means, but we know our baby will fight!

Rather than show pictures of what she looks like now, I wanted to post a cute video of her, please check out this video from last week of  sticking her tongue out and making us laugh.

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10 thoughts on “Critical

  1. Pete & Mary,
    What to say? I’m so sorry that Remy,and you guys have to go through this! I wish I could make it all better! All I can say is she definitely comes from a tough family and will fight through this! So will the two of you!
    It’s been a long time since I had a little one and never quite a little as Remy of course, but I do love the idea of Kangarooing and hope you will be able to resume soon! Today and every day until Remy is well and at home I will be praying and sending positive thoughts and strength her way. I wish you all well,and hope to see you soon, xoxo Debi
    PS. So sorry for your kitty, we have 3 of our own and I can sympathize!

  2. Sorry to hear about Jake – it’s always sad losing a pet. And I am really sorry to hear about Remy. I wish I could wave a magic wand and make her problems go away. But she is a little fighter and I’ll continue to pray that she battles through this. As I said to Mary the other day, I’m gonna have so many cute clothes for her when she gets out of the NICU so she’s got to hurry and grow big and strong so she can wear them 🙂 Big hugs to you and Mary – wish I could give them in person but for now give each other a hug for me, ok.

  3. Pete, I am so, so sorry you guys are going through this! I wish all these setbacks would just go away. Remy pops into my head quite often, and I always give her a cheer. I am rooting for her so hard! And even though I know you are a fighter, I am wishing for an extra dose of strength and courage for you and Mary to get through this tough time. I’m also sorry about Jake- losing a pet is so hard. When it rains, it really pours. I read a quote once form Churchill: “When you’re going through hell, keep going!’ I figure you eventually have to come out the other side. Hoping you guys come out the other side very quickly! Hang in there. Sending good thoughts for much better days ahead.

  4. I know we dont know eachother, I am a friend of Angela Shull. I saw your website on her facebook and when I read this it brought chills to me because I have been in a very similiar situation with my son who is now 3 and very healthy and crazy ha. Its weird how we dont know eachother yet can relate to such a scary situation. Nothing can ease your worries until you get to bring your sweet baby home but just know she is strong, a lot stronger than we give them credit for, and there are happy endings. I will keep you and your family in my prayers.

  5. Thinking of you and your little one. My daughter was born at 26 weeks last September. I know not all preemie NICU stays are the same, but I know so much of what you are going through. Know that you are not alone. Feel free to contact if you would like!

    (Friend of Shawn Mize)
    Single mom of an ex-26 weeker

  6. I am praying for your family. It is very tough for such a young girl to go through and your blog is reaching out to people all over the place. Just know many are praying that soon your family can be at home together.

    –Brandy

  7. Pete and Mary,
    We continue to pray and send positive thoughts to Remy, Mary and you. We’re so sorry to hear about Jake. He was one of the few cats I was actually down with.

  8. Remy and you both are in our prayers, hearts and thoughts. I am just catching up on all the posts and can’t imagine how difficult it has been for you both. Please let me know if there is anything we can do to help in any way.
    Love, Rhoda and Chris

  9. Hello Pete and Mary,

    Although we dont now each other I wanted to reach out and just say you are in my prayers now after reading this. (friend in common, Donna Tine) I know you are both in the scariest place right now, my husband and I went throught it also. My son was born prematurely at 24 weeks 840grams on 7/22/09. He was in the NICU for 5 months…..the nurses said its always one step forward, two steps back and that sure was the truth. Everyday is a rollercoaster and there are so many uncertainties. Just reading your post about the oxygen, TPN, etc brought me right back. They are resilient little fighters, never forget this. They dont give up, so you cant either! My son is now 19 months and doing well. He does face challenges due to his prematurity but he is alive and healthy, thank God. Hang in there, be positive and follow your gut instincts when it comes to the doctors and their advice. I am praying for Remy and your family, be well!

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