Stupid Rules

Sometimes i think the doctors and nurses around here should be shot.  Or at least have to walk in a paarents' shoes for a day.  Whoever thinks its a good idea to wake a sleeping child, one with a 103 fever, to make them stand up and get a weight check is insane.  And of course it was me, not them, that had to lull her back to sleep after she was so upset she vomited all in the bed.

Today has not been a good day.  Baby girl has run a fever off and on, which means extended antibiotic and it pushes our 48 hour fever-free mark out even further.   Lucy slept for more than 24 straight hours, only waking to potty.  Hemoglobin was 6.8 this morning.  She needed blood so badly and it took until 3:00 this afternoon.  They are just now hanging her platelets.
  Sometimes i want to scream about the speed at which things are done here.  Good grief!

After only waking for about 2 hours she is back to sleep and I am getting settled in for another restless night on the couch.  I long for my home and family so badly tonight.


  1. Sorry about the unthoughtful interruptions to Lucy's sleep. I know these things are necessary but they can all be worked around her and when she's awake. Getting things done while working with the patient and also in a speedy fashion makes for a much happier person and family.

    I've been reading your blog for a few weeks but just now commenting for the first time. A nightly prayer for Lucy is always on the docket after I found this blog. NO family should have to endure this. It's simply not fair. You're one strong mama and I admire your grace, strength and faith. Keep up the great work.

    Wishing you peace and restful dozing tonight, as I'm sure sleep is going to be hard to find when your baby feels so stinky. Many hugs & prayers coming your way.

  2. You are almost there Kate. Soon you will be home and Lucy will be strong.

    Praying for you!!

  3. Praying for you and Lucy from California.

  4. Oh Kate, I was just settling in for the night and wanted to double check to see if there were any updates. So sad to hear that it was a rougher day than usual. I hope that despite that horrible, uncomfortable couch, all the beeps and jabber at the nurses station, and crazy thoughts racing through your head, that you find peace and rest. Real rest. Tomorrow is a new day. Let's hope it's much much better! Sending love your way!

  5. It's Ok to be upset. It's ok to let it out. You have that right. You are a strong mother!

  6. I have not commented before but have been following Lucy's story closely and praying everyday. I will send up extra prayers tonight- thinkning of your and your sweet girl and hoping you are both able to get some well deserved rest.

  7. I'm so sorry for your (this word seems inadequate) frustration! I first heard about your family & blog through Allison Rodgers, and I've been reading & praying for months. One of my favorite Bible verses comes from Psalms. I'll have to find the exact verse, but it says, "Turn your ear to me, Lord. Come quickly to my rescue. Be my rock of refuge, a fortress of safety." I'm praying tonight that all your prayers will be answered quickly, and Lucy's recovery will be swift & certain. Thank you for your ministry through your open & inspiring writing. I have two girls, who are younger than yours, but around the same distance apart, and my husband is a celiac. Maybe one day when this is all over, we can swap gluten-free recipes. I have felt called to read your story & pray for your family daily. I cannot tell you how it has challenged me to examine my own faith & commitment to trusting God with every aspect of my life. Thank you! I will continue to remember you all in my prayers, especially tonight! Go Lucy Go!

  8. Sending love from Sydney, Australia. We have never met but my daughter and I think of you everyday and marvel at your strength.

  9. Thinking of you and praying for you, Lucy, and the rest of your family! Keep remembering that God is by your side. May you feel His loving presence always!

  10. Praying for Lucy's fever to break and all her counts and numbers to be where they need to be for a healthy start to the rest of her life! I'm also praying for you and the rest of the family for rest, peace and patience. It's always the last part of a journey that seems like the longest.....I'm praying you will all be home very very soon:)

  11. I'm so sorry for all your rough nights, especially the ones still happening at the end of this long journey. Praying for an end to Lucy's fever and your frustration. Take care and God bless you.


  12. Kate,

    I wish I had to words to make any of this easier, but I don't. It sucks. I can't imagine the frustrations of loving your baby girl and the slowness that others take at times. I would want to pull my hair out!:) My husband and I are praying for your strength to wake up and take the steps you need today, and tomorrow, and the day after....Praying.

    Jessica and Nate Stemm

  13. Praying for your beautiful Lucy! You are so right -- how ridiculous that they would wake poor Lucy up for a standing weight!!! Hoping and praying today is a MUCH better day for Lucy and you both.

  14. Praying for you and sweet Lucy, you are almost done with this monster!!

  15. Kate, I am so sorry. I remember this same feeling when my Audrey was in the hospital last December. They wake them up at ridiculous hours of the night for a WEIGHT check!!! SO dumb!! And then they leave the mother to deal with the aftermath...which is a tired, grumpy, screaming child who was woken up. I've never understood this....and I am a pediatric nurse.
    Praying today will bring a nice long nap where you can cuddle and snuggle with your sweet Lucy.

  16. I understand your frustration at the staff completely. My own daughter has had 3 open heart surgeries. Each time I wanted to go directly from the ICU to home, instead of going to the regular floor where the care becomes "routine." I distinctly remember wanting to strangle the tech who would show up every 2 hours to do blood pressure, temperature, etc. Who's crazy idea is this?! I would think. If they didn't wake her up, they woke me up, usually after I had just relaxed enough to fall asleep after the last "routine." Your days of being home and being in charge of your child's care (which is at the heart of every Mommy) are coming. I'll pray sooner than later. :)

    Melissa (Eden's Mommy)

  17. Have you seen this? When I first read it I thought "Wow, there is someone who knows EXACTLY how I feel."


    1. Please don't ask me to leave my child's side. I can't rest or eat knowing that something could happen while outside the safety of my arms. I need to be there.

    2. I need to be part of my child’s care team. I am there everyday. I am used to being in charge. At home, no nurses or doctors are telling me what to do. Help me be a part of the team.

    3. I am not stupid. I may not understand all the words that you use, but I am willing to learn. Teach me. Help me understand what you are talking about. What could be more important for me know?

4. I am not overprotective. I am a parent. I see my child struggling to survive. I was given this child to protect and love. If I am doing something excessive, then kindly, gently tell me that it is not necessary. But do not tell me I am overprotective. Those words are fighting words.

5. I don't know if you believe in God or not, but I hope that you do. While my child is under the care of your hands, I am in the waiting room asking for God to guide your hands and your mind so that you can save my child’s life. I pray for you.

    6. Caring for a child with a chronic illness isn't what I bargained for when I was planning a family. This is the hardest thing I have ever had to deal with. I am not just my child’s parent. I have many roles and wear many hats. Please understand this problem has touched every facet of my life and is challenging me in ways that you cannot possibly understand or see.

7. I am grieving. This is not what I planned. My home is waiting for my child. Clothes hang in the closet; toys and books are waiting to serve their purpose. Please be kind while I try grasp what all of this means and while I mourn the life my child should have had.

    8. I trust you. I have handed over the most helpless and important person in my life. I know that you are not God, but I am hoping that through you, God will work a miracle.

    9. I have hope. I don't care about statistics. There aren't two children here at the same time, having the same surgery. There is one, and that is my child. Don't tell me that you don't think that my child won't make it. Tell me, that you'll do everything in you power to help my child survive.

    10. I know you don't have a crystal ball. When I ask you for my child’s prognosis, I am asking you for reassurance. Every parent wants to be a grandparent one day. Don't get irritated when I ask you about the future. Tell me I'm doing a good job today.

    11. If it is God's will to take my child too soon, don't be afraid to let me see you cry. Your tears will help to cleanse my wounded heart. I need to know that you cared.

    ----UNKOWN AUTHOR...


  18. Oh Kate, my heart hurts as I read your post. I just wish so much that you and Sweet Lucy were not having to go through these times that I know feel like torture. In those times, remember that "This too shall pass" and know that you have SO many friends lifting you up to our Sweet Lord and walking with you through the good & bad times, LOVING you and your precious family. Please know that you are covered in prayer and love EVERYDAY. We KNOW and BELIEVE that soon, LUCY WILL BE WELL!!!!!! I pray for U, Lucy, Erik, Ella & Jack a day of Sweet Blessings.
    XOXX Tracie

  19. I agree with you let that baby girl sleep Nurse's and Doc's! She needs her rest to get well! I know this is not the same as what you are going through with Lucy but I know what you mean by Stupid Rules at Hospitals. My baby girl was 7 weeks Premature (born 1-5-11) and the things we went through with that Hospital was terrible. Not letting us see or hold her but during feedings and keeping her 38 days without good reason just to name a few. They need their parents no matter what and you are doing a Great Job taking care of Lucy dealing with the Stupid Rules and all. I hope and Pray her fever goes away and ya'll get to go Home Soon! Praying always!

  20. I am so sorry you are going through all of this! Please don't be afraid to speak up when this happens. I had to be a bit pushy at times when things like this happened. You need to for Lucy and yourself. I know you are just so exhausted. I am so sorry. After my son had his kidney removed at 5 months old they booted him off the PICU due to number of patients(no not the NICU as it should have been) and put him in a room with an older child with only a hurt eye who screamed all hours of the day for Mcdonalds, to go play, wants to see his friends, he hates him mom..blah blah blah. Ugh! I get so mad just thinking of it....again I was the bad guy to go get him moved to a roommate who also had cancer. Seriously! A five month old with cancer and this performance! Ahh!. So sorry I am rambling, just know there are so many people praying for you all and thinking of you. Hang in there and we are all cheering for you! Tons of hugs and prayers!

  21. Kate, there was a great article in the Readers Digest once about a man who stayed with his baby son who had RSV. He finally blocked the door of the hospital room and would not let anyone touch his son while he was sleeping. It was great!
    Maybe you need to do the same if what they need to do can wait.
    God bless and I'm still praying.

  22. As a mother of a child who had a critical heart problem several years ago, I well remember the frustration of nurses coming in, just as I had gotten her to sleep. They wanted to measure or weigh her. I became a mother bear and sometimes, just told them this could wait. And that was ok...