THE GIFT|RIDING THE ROLLER COASTER

14681734_822082539352_729028567551864163_nI’m finding it very difficult to keep up with blogging and/or updates, but today something so monumental, so incredibly special, so close to my heart happened that I have to record it. I never want to forget this day, and I never want to forget God’s faithfulness to us even when we walk through the valley. I know a day will come when I will need to remember what happened on this day in order to get me through whatever horrible thing is happening on that day.

The Roller Coaster

Living in a children’s hospital is like riding a roller coaster. The constant up and down, good news and bad news could drive a person mad, if you let it. Sometimes I think I’m halfway there. Today started out with very bad news. The pediatric surgeons came in at 6:30am and told me they think they found an obstruction in Belle’s small intestine, and that they would likely have to do another surgery. I was crushed. We just got through a week of recovering from three procedures and we were finally ready to move forward. I knew this would mean waiting to schedule surgery, then probably rescheduling it 2 or 3 times. After it finally happened, we would then have to wait another week while she pretty much stayed in bed most of the day healing. It’s always one step forward, three steps back.

I began to pray, but these days, my prayers don’t make it too far past:

“Dear God,

Help. Please. Belle. Help us. Please ”

After a few minutes of repeating those chopped up words, I usually just resort to putting praise music on and meditating on the words, which is what I did today. I ย then contacted some of Belle’s many prayer warriors and asked them to pray because I know their prayers are probably a little more consistent and eloquently communicated then the few, choppy words I can come up with in my current state. (Pretty sure God doesn’t mind though. He knows what I’m trying to get at.)

A few hours later Belle’s Intestinal Care (aka ICare) team came in. They told me the “obstruction” could indeed be that, or it could just be swelling and bruising from the last surgery. Since we are basically bypassing her intestines at the moment, it didn’t really matter. It would need addressed down the road, but our best bet is to let her continue to heal and then do more tests in the future, since she has been through so much already. THEN…they told me the most wonderful news.

The Gift

Nursing is something that I haven’t really talked about. It’s hard for me to even acknowledge it because it has been a very painful subject for me. From 29 weeks pregnant, I was told, and believed, I would never have the opportunity to nurse my baby girl. It has taken me a long time to come to grips with that, but knowing it wasn’t best for her, I felt that I had finally come to peace with it. I am a huge advocate for nursing and I truly loved nursing my son for 14 months. I told myself I was blessed to have the experience as many women don’t get that opportunity, and to be thankful, even though it hurt to think I could never give that to my girl.

From the beginning, our Icare team told me that there is a chance we can give Belle breastmilk by bottle in very small amounts, so from day one, I pumped……and pumped…..and pumped, not knowing if it would ever matter. But even if I could only ever give her tiny amounts, it was at least something and some way I could provide for her. Eventually the hospital told me they couldn’t store my milk any longer and I’d have to take it home. 5 trips later, our stand up freezer is filled, as well as our chest deep freezer. Recently, I started just dumping milk down the drain because we are out of room to store it. Each bottle dumped down the drain was an emotional experience and a reminder of Belle’s disease, and what would never be. Something told me not to quit though.

I pushed to feed Anabelle milk from the first day we came to Icare. They reluctantly agreed to let me give her 5cc’s by bottle every four hours. It had to be by bottle so they could control the amount. At the time she had an NG tube and they don’t usually give babies, with a condition as severe as hers, and an NG, any milk at all. I was pushing it. I was so excited to be given permission though, and chalked this up as a victory, until I saw her bottle. Do you know how much 5cc’s is? I didn’t.

5cc=1 teaspoon

Belle got 1 teaspoon of milk by bottle every four hours for a few weeks. It was barely enough to wet her tongue but it at least forced her to make the sucking motion a few times. I then pushed to increase it. Reluctantly, they gave me 2 teaspoons. They kind of laughed at my persistence and excitement at such a small amount. The main purpose was to work on her oral skills, sucking, and to keep her from developing an oral aversion. To avoid confusion, let me be clear that Belle is not getting nutrition, or at least not enough to keep her alive, from my milk.

Once Bell had her surgeries, we were able to drain her stomach, so nursing, something I NEVER thought would happen, became a possibility. One of my doctors is currently nursing her son and she got the idea, right about the same time the possibility occurred to me. She actually cried when I asked and said it is something she has been thinking about so much and thought about asking me. I was shocked to hear that only one other Icare mom had ever tried nursing. She explained that it had to be kind of the “perfect storm” to be possible. Mostly, they get children who are a couple months old and have already gone so long without eating that they aren’t interested or have lost their suck. Or, the mother has stopped pumping. Belle being the youngest baby they have ever had, and me still pumping my brains out, was just the perfect storm to give us the chance.

So today, October 18, 2016, after 35 days in the hospital, my Belle got to nurse from her Mama. Baby girl was a champ and latched right on after only a few seconds. I was shocked and fully expected it to be a process that would involve a lactation consultant, probably OT, and lots of trial and error. That wasn’t the case. It was flawlessly beautiful. Who knows if it will ever be that easy again? I don’t even care.

Like so many days living in the hospital, today was a roller coaster of highs and lows. But the high was a gift I will never, ever forget. Praise be to God. <3

Disclaimer: If you find my blogging about breastfeeding disturbing, no worries. I get it. But since it’s MY blog, (not to mention 2016) I’ll write about what I want to ๐Ÿ˜‰

31 Comments

31 Comments on THE GIFT|RIDING THE ROLLER COASTER

  1. Nancy says:

    Wonderful news! Still praying!

  2. Amanda says:

    How exciting!! I can only imagine how you felt this evening ๐Ÿ˜Š We’re praying daily for comfort and beautiful moments as you guys continue your journey.

  3. Dawn Zellefrow says:

    Blessings are coming!! Continued prayers! If I can do anything please let me know. Your blog had me smiling & crying happy tears! I went through the same process when Bria was born. Our stories parallel in so many ways. Thank you for sharing. Blog away!!!

  4. Kylie says:

    Thank God for this large gift. What a wonderful and unexpected experience. Continuing prayers for all.

  5. Laura says:

    PTL!!! Offended by you breastfeeding, no way! We are praising the Lord right along with you! Wonderful news!

  6. Bri says:

    Absolutely beautiful. Brought me to tears. I love that you wrote about this so you could remember all of the precious gifts along the way. No doubt, you will be so glad you did so. Prayers are continuing!!

  7. Alisa says:

    I sat here reading this sobbing for a stranger. I understand your feelings better than some. My son was born with a left diaphragmatic hernia nearly 18 years ago. We went through something similar. The first time i got to hold him my milk let down so much that i actually had to return to the RMH to change not only my shirt, but my pants as well.

    I prayed for you while reading this and will do so again. You are right, God knows what you need. I believe we need only lay our troubles in God’s hands…he already kniws what to do.

    I could go on and on, but i won’t. I will leave you with two final thoughts….
    1. I, too, had too much milk. The NICU staff asked if i would be willing to donate breast milk to mother’s who could not produce enough. I felt pleased to be able to help.
    2. I believe that time made me a better person. My world was within those walls (And speaking over the phone with my daughter who was 3 hours away at home). It was like the world went on and i was in my own little universe. It made me focus. All i could focus on was my son. I let go of all of the negativity and ninsense in my life. To this day i remind myself from time to time of who i was then and strive to be that person again.

    My prayers are with you and remember the saying “God doesnt give us more than we can handle”? I remember hearing that and thinking that He was giving me more than I could take. God has given you a gift (not just your children). He has given you an opportunity to find a better you….to guide others who are on the brink (so many of us are). He will be with you through this even when you don’t feel like it. This is a chance to strengthen your relationship with Him. God Bless you and your family.

    • laurabisping says:

      Hi Alisa,
      Thank you for your very sweet message. I have connected with so many moms who have been in a similar situation and it is a great comfort to me.

      I’m looking in to donating. Thanks!

      I agree. God does give us more than we can handle. He wants us to be totally reliant on Him. And I too, have been so changed through this experience. I hope it has made me better in some way, or that it will some day. God bless!

  8. Sally Walbert says:

    Great news. I will keep praying.

  9. Kim Pivetta says:

    SO GLAD FOR EVEN THE SMALLEST OF THINGS BECOMES A GREAT REWARD FOR YOU ALL…..HUGS AND PRAYERS. GOD KNOWS YOU ARE FAITHFUL AND HE IS WITH YOU EVERY STEP OF THE WAY

  10. Judi Middleton says:

    Thankful to hear positive experiences for you and Belle today. Breast milk is “liquid gold”!!
    Any consideration to donate instead of dump? Milk banks provide for the tiniest babies with phenomenal health benefits.
    Blessings to you as you remain dedicated to your daughter, a precious gift.
    In God’s love, a neonatal nurse

    • laurabisping says:

      Hi Judi,
      Thanks for your message. I actually did contact a bank, but they wanted me to do a few things that I just don’t quite have time for yet. Now, Belle eats 4 times a day, so I plan on keeping the milk to give to her when we go home. If I have extra, I will DEFINITELY find a way to donate it once things calm down a little. I would love to help another family in this way.

  11. Chrissy says:

    PRAISE GOD!! I’m in tears feeling your joy!

  12. Laurel Glover says:

    I am sitting here with tears of joy for you. I will continue to pray for you and baby Belle. May you both have many many more of these victories and joys in your journey together. Sending love and hugs for you both!

  13. Sandy h. says:

    I can’t wait to meet your precious baby. Your family is much loved and in my thoughts and prayers often. Thank you for letting us be a part of your families journey.

  14. Mary Heckman says:

    I am so happy that you and Belle could experience this closeness and I pray that you will many more. She is such a darling little girl and very precious to so many. She will be our little miracle baby. Prayers to you and your family daily.

  15. Erica B. says:

    Praying for you and Baby Belle. Yay for small miracles!! I know that this is not how you pictured your life to be, but God only chooses the strongest. He doesn’t give you more than you can handle and I think (I don’t know you personally, but I feel like through your blog, we have been friends for years ๐Ÿ™‚ ) God made the right choice. You are an awesome example of how to take a crummy, horrible situation where anyone wouldn’t blame you if you threw in the towel, and rose above it. You fought for your daughter and look where it got you! I am so glad you got to nurse you’re little girl. Tears running down my face reading this ๐Ÿ™

  16. Merrilea says:

    Way to push through! What a gift! Praying for more. Thankful that God knows our hearts!

  17. Morgan Harman says:

    Praying for you and your baby girl! I know what it is like to basically live in the hospital with your baby. While my stay may not be as long as yours, I spent 85 long days sitting beside the incubator of my 1lb 11oz baby boy who decided to make his grand entrance to this world at barely 26 weeks gestation. We too experienced a roller coaster of emotions, struggling to know whether he would make it or not. But after 85 days, he finally came home! And now 9 months later, he is doing better than we ever could have expected. And guess what?? His name is Jonah too!!!! I pray for you daily and will rejoice in the day you can finally bring her home. I too pumped like crazy to give him nutrition through a tube since he was relying on a ventilator to breathe for him and was way too tiny to learn to eat at that point anyway. However, despite round the clock pumping for months, I never made more than a few ounces a day. I read that you make so much that you were dumping it out. Please, please consider donating your excess breast milk. So many babies could thrive from that gift. Please don’t throw that away. We will continue praying for your family and we are so excited for the day you post that you were finally able to bring her home!!!

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