Monday, June 22

Pity Party

Some days it's so hard not to ask why. I know I need to be strong for Bryce, and for Caleb too but easier said than done. Bryce has had a hard night and is following up with an equally rough morning. His oxygen needs and ventilator settings have risen dramatically, to the point that there isn't much more that can be done to help him breathe. It's so hard to sit here and watch the monitor alarm because he isn't getting enough oxygen but know that there isn't anything we can do.

I talked with our NNP this morning about my concerns because he had been doing so well yesterday, despite the partially collapsed lung. Unfortunately, sometimes there are no good answers.

She suggested we begin considering steroids because if he continues to worsen this could be fatal for him. That is absolutely the hardest thing I've ever had to hear or type.

Please pardon me my pity party this morning but as I sit here researching the many side effects of steroid use (brain bleeds, Cerebral Palsy, hypertension, hypoglycemia, developmental delays, and the list goes on and on without any concrete evidence linking dosage, birth weight, timing of use, preexisting conditions, etc) I can't help but wonder why.

As I bookmark an American Academy of Pediatrics study I see my bookmarks folder titled, "Nursery." That's what I'm supposed to be doing right now. He's supposed to still be inside my belly, where I can protect him, where I can breathe for him and let him grow to be big and strong all on his own.

Even though I know in my heart of hearts that everything happens for a reason I can't help but feel cheated. All I want is to take him in my arms, to hold him and comfort him, to let him feel that I can make everything all right - to let myself feel that, too.

16 comments :

  1. Katrina, Caleb and Little Bryce,
    I know your having a difficult time at the moment and my heart aches for all of your. But, look at the positive side !!! You do have options, if necessary, that will help him breathe easier and may not have any serious complications. Eveyone has your family in their hearts and prayers, and God does listen.

    All our love,
    Jackie, Dennis, Noah & Jacob Pulley

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  2. Katrina,

    First of all, you have been way stronger than most. If you want to break down, then break down. Scream if need be. You are completely aloud because this is your little angel we're talking about. So I don't ever want to hear you say that you're having a pity party. This is far from a pity party. It's a mother will real feelings concerning her child. I cry all the time thinking about it. Both tears of joy and fear. You have been so strong through this long hard battle. Be sad, gather yourself and start over. You have so many people that admire you. Myself being one of the biggest.

    Secondly, Bryce has been fighting very hard. I have no doubt this is yet another obstacle he will overcome. Have faith. Sometimes that's all we have and need.

    Let me know if you need anything!

    I love you very much, Katrina!

    Jennifer

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  3. Hey there,

    It's not a pity party at all! It's a mother who is worried about her child. You're all so very strong, Bryce included. You know that, so keep hoping, praying and cry when you need to, it's OK. We're all still out here praying and hoping right along with you all. You have a strong support team out here :o)

    Hugs and thinking of you all always!
    Weslea

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  4. Dear Katrina, I am sorry I have not posted a comment on your blog sooner but I have been following Bryce for about a week or so now. My name is Chelsea and my son, Travis, was born on July 29th, 2008 at 23 weeks 2 days gestation. He was 1lb 3.5oz and 11 in long. Our journey through the NICU was an extremely difficult one with many obstacles, ups and downs, etc. He suffered from a pneumothorax at 6 days old and was transferred to a Children's Hospital 4 hours from home. We ended up moving there so that I could be with him at all times. He spent 2 months on a ventilator and a total of 142 days in the NICU. He also had 2 rounds of steroids that quite likely saved his life. Does your NICU use Nitric Oxide? Travis was on that for a very long time and that also helped him tremendously. My sweet little micropreemie is now a chubby 16lb 11 month old now! He is doing incredibly well! He came home on oxygen,a feeding tube and a monitor. He is only on oxygen while he sleeps now and the feeding tube is out. We no longer have him on the monitor. We still have many residual issues but they are not bad compared to what they could be. Feeding being one of our biggest. I don't want to make this too long, but PLEASE...email me if you want to hear more about him. I am praying for Bryce and for you and your husband. The NICU is a roller coaster that you cannot even fathom until you are there. Be strong and take care of yourself as well. Love and prayers from Chelsea and Travis! army_wife1008@yahoo.com (you can also use this to add me on yahoo messenger if you have it, I would be happy to chat with you anytime!)

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  5. Katrina & Caleb,
    I've been following your blog and my heart goes out to you. Your posting is not a "pity party". It is a mother who is in pain for her child. You both are incredible parents! My thoughts are with you.

    Laura Booth (Weslea's mom)

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  6. I am praying for you. I have been there and I know what you mean. "Why me?, Why him?" God has a plan, and we can't see it but we have to trust. That is also easier said than done, that is why I am praying daily for you and your husband and your sweet baby boy. You are allowed as many "Pity parties" as you want, because it is hard to be in your shoes. Hang in there, and lean on God.

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  7. Trina,

    This is not a pity party post. Lets call it venting. A least your getting it out which is much healthier than keeping it in. You are entiled to any feelings you may be experiencing. Take a look at this post as a need for some extra prayer. This I know all of you will get. Keep chin up and vent anyway that you feel you need to.

    Loads of Love & Prayers,

    Shawna

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  8. It would be so totally unnatural for you to remain positive and upbeat through what you are facing. You have handled this like a champ. And sometimes you have to just give in a little. Not much different than Bryce right now. I have no doubt he has worked his tiny little body to the core and now he just wants a tiny break. He will be right back and fighting in no time, just like his Mommy!

    This might be your moment when you have to stop walking next to God and ask him to carry you for a bit.

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  9. Hi, you don't know who I am, but I am a friend of your cousin Andrea Claire Hernandez. I went through the EXACT same thing last May with my son Avery Christopher. I have to admit when I saw the pictures of your son with all the tubes and all I began to cry. Avery was 15 oz. when he was born, and in the same situation. I don't think here is appropriate to say the outcome but you are more than welcome to ask Andrea. She knows the whole story, but I have a really good feeling about your little guy. He looks great and you and your family will definitely STAY in my prayers. The most important thing is to stay strong and positive, and lean on each other for support. I will make it a point to check your blog to see how he is doing. Your story has really touched my soul, and coming from someone who went through the same thing its not easy. But you seem very strong willed and determined and like I said I have a really good feeling about Bryce. Take care and God Bless you and your family

    Imani Aguirre

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  10. Trina,

    We are all praying for Bryce and all of you. He is a fighter and will continue to fight. He has many who love him and will continue to pray for him. Your feelings are natural- you want to protect your child. We all wish we could help him and you. I know that the best thing any of us can do right now is pray and send our love to shine on him. Love you, Trina

    Gene, Lolo and Timmy

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  11. Lord let me walk with You
    Although my steps are small
    Stay beside, hold my hand
    And never let me fall.

    Amen.


    xo,
    Drea

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  12. Katrina,
    You are such a strong woman, but even the strong need to rest, unwind or even unravel. You have been carrying a tremendous weight for 2 solid weeks. It may be time to set it down and let God pick it up. I know that faith alone can become hard to rely on. I wish at times there was something I could do for you besides pray. But I believe that prayer is the best thing we can all do for you, Caleb and Bryce. I'm glad you are able to open up to all of us out here so we can try to support you where you need it most. I love you!
    XOXO,
    Mary

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  13. The closest experience of God's love that we here on earth have is a Mother's love. How fortunate Bryce is to have your love.
    Every day I pray to be gentle of heart and merciful; to have the courage and discipline to face the challenges of each day and the grace to make wise decisions. I pray the same for all of you.
    It was so special to see you all yesterday. You remain in our hearts and prayers.
    Louis, Grace, Erica and boys

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  14. You don't know me, but I posted last week. I also told some other NICU mommies about you and we are all praying for you. It isn't a pity party at all, and I think every NICU mommy feels the way you do right now. My son was only 4 weeks early and spent 9 days in NICU, a few on a vent and the rest on CPAP. But I still had some of the same feelings of being "cheated" that you do right now. I just wanted you to know you are not alone in your feelings and it is okay to feel that way.

    You, your husband and your sweet boy are in my prayers.

    Lisa

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  15. More prayers from the McCulloughs! Lean on God for strength, peace and clarity in the decisions you have to make. You are so much stronger than you think, and so is Bryce!! Just know you've got such a big fan club out here praying for all of you.
    Love,
    Bristelle

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  16. Katrina,

    I posted yesterday on the good news portion of Bryce's brain scan. You are NOT having a pity party. Having a preemie, especially a micro preemie is very difficult. It's okay to break down and have days where you just feel defeated. It's natural to feel cheated. When your child is born early, you are cheated of so many things. The urge to just pick up your baby and love on them only gets stronger when you know that they are having a rough time. It's your mommy instinct.

    Cayden, my son, was born as at 31 weeks, but had severe IUGR and was only measuring about 23/24 weeks in size. He was 1lb 5.9oz at birth and 12.5 inches long. We spent 124 days in the NICU with multiple ups and downs. He had an extremely difficult time saturating with his oxygen. His vent settings were very high and he was on the oscillating vent becuase the traditional vent was too rough for him. They used Nitric Oxide for him and that was a miracle drug for him. It saved his life.

    Cayden is home now, as of the first week of May. He came home on oxygen, a feeding tube, and an apnea monitor and multiple meds. He is pushing 11 pounds now and growing well.

    Don't give up hope. There are lots of us out there praying for Bryce. These little ones surprise the heck out of you.

    If you need to talk, or have questions, feel free to email me or find me on yahoo messenger. TxsChatterbox@yahoo.com

    *hugs* and prayers...

    Tami

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