Friday, June 15, 2012

Day 5

My heart still hurts.  It seems like its been more like 5 weeks and not 5 days since hearing the news.  Last night I couldn't sleep.  The tears just kept falling--and I had made it the whole day without crying.

I started looking at blogs of other CDH stories.  I found some that were so encouraging.  And then I came across some that just completely destroyed my hope.  I should remember not to do that so close to bed time. 

Shawn, the boys & I had to go to Amarillo yesterday to get the boys shots.  What a nightmare!  Ryder, my youngest, was the brave one.  He hopped right up there not really knowing what was about to happen.  Poor guy cried.  I tried to distract him while Shawn had to wrestle Cooper up onto the bed.  Shawn said that boy is STRONG and has abs of steel.  Since he was fighting, the nurse has to jab, and I mean jab, both his legs at the same time.  He screamed so loud!  I thought he would never stop crying.  The strange thing is--Cooper is super tough and Ryder is....not.  I did not want to get all 3 of the shots Cooper needed that day because I do not care for mixing that many things in my child's body.  So now we have to go back in mid August for one more. O M Gracious.  I dread that day.

So afterward we took them to Toys R Us--because that's what we promised them.  I never had intentions of buying the crib set from there but I wanted to look at them anyway.  They have the most beautiful girls set; changing table, crib, and dresser.  Its white and has bows raised in the wood.  Shawn would have bought it right then and there--although its way more than we planned on spending and the fact it may never be used.  I told him we had to wait.  For what?  I don't know. 

So as I was laying there last night I made a decision (at least for now) that I am not going to decorate her room.  I am not as strong as some women.  I read a blog last night where this woman's baby lived 6 weeks and she was at peace with her babies passing and knew it was in God's plan.  I know if I came home to a baby nursery and have to do something with all of it--sell it or whatever--it would send me into a place I do not want to be.  So for now, Sunni's room will look like Ryder's room and if someday I get to make it pink--it will be a happy, happy day.

Its just amazing how fast life changed.  Last week I was so excited for this summer.  I was going to keep busy with sewing, working on a nursery, making the boys rooms into 1 they could both claim. I pray this changes but right now I feel hopeless and almost depressed.  I am not enjoying my pregnancy anymore.  I had to actually think of how far along I was yesterday.  I feel Sunni kick and I just get the saddest feeling because I know she only has a little bit of time left to be pain-free, unless of course God decides to take her with him. 

I feel so ashamed to feel all these feelings when I read other people's blogs that have been positive the entire time and trusting in the Lord to heal their babies.  I could very easily lie and convince everyone that I am totally ok but be screaming on the inside.  I am not good at hiding things like that anyway.

I read last night that on average these babies have a hospital stay of 2-3 MONTHS!  How is that going to happen.  I have two boys to take care of, a husband, a job, and my baby will be miles away?  Possibly Lubbock or maybe Dallas?  This equation is not adding up for me.

I really hope next Friday answers some of these questions that I have.  My mind is working overtime.  My kids need me.  They are tired of seeing their momma cry.  They do not understand what is going on and I am not real sure I want them to. 

Please continue your prayers for both baby and I.  I hope that one day (soon) these blogs are less sad and more positive.  These are my true emotions though--laid out for whoever wants to hear them.  It really does help to get them off my chest.  Thanks for reading, praying, and hoping.


  1. This breaks my breaks my heart hearing how depressed you are getting and the fact that you've decided against decorating her nursery :(

    I'm praying for better news next Friday, I pray that they lift your spirits and you change your mind and have a whole new perspective on things. Sunni is going to be just fine...we're going to be watching her and Hailey play barbies together one day :)

  2. That would mean so much more now than it did before.

  3. Whitney-
    Please please please let me know if I can help in ANY way! It is scary, it is overwhelming, and it is devastating. You are more than allowed to feel all of those things and whatever else! I am by no means an expert on anything, but I have been where you are. Always ready to lend an ear if you need one!! Many prayers for you!

    1. Thank you Abby. Your blog has already helped me in so many ways. I am closely following you (Parker) and Baby Bee. Those precious babies have given me a lot of hope for Sunni. :)

  4. Found you through Leslie/Bonnie's blog. :)

    I remember where you are at. I remember it in my whole body and spirit. I cried every day and worried that my boys saw me cry so much. I mostly tried to be "normal" for them during the day and I cried at night while I read and researched and prayed. I wanted to be hopeful but I found that so painful - the experience of hoping and falling again was devastating. So I asked my friends to hold hope for me and I just focused on nurturing our baby.

    Yes, these babies can survive. Samuel had a damning MRI at 22 weeks that led our doctors - so many wonderful, intelligent doctors - to predict that our Samuel would live hours at best. Now Sam is 16 months old. He is on no oxygen, no tube feeds, and the only way you would know of his CDH battle are the scars of his repair surgeries and that he is a bit small and still catching up on some gross motor things from his time laying in a hospital bed.

    Hang in there. I think Samuel was a couple of months old before I realized that he wasn't going to die and that I hadn't cried that day, or maybe even the day before. Whatever happens, you will be okay. I have linked Sunni's story to my blog and want you to know that you will be held up by me and by the amazingly beautiful people who held up Samuel and our family. You can do this. It is hard, but us mamas can do hard things.


    Mama to Samuel, lcdh survivor, Feb1/11

    1. Corrine,

      Thank you for writing me. Its comforting to know I am not alone in the feelings I have been having. I really thought something was wrong with the way I was feeling. Samuel's story is so touching. I have not got the time to read much except for the recent happenings. I love looking at his pictures. I definitely shed happy tears when I see these little fighter babies. I am glad you have continued his blog. What a happy little boy that has beat all odds. I will be keeping up with him. Thanks again, it really means a lot to be comforted by mother's I have never met that have went through the same thing I am.

  5. I just found your blog through other CDH blogs. It is almost one year to the date of yours that I found out my baby had a diaphragmatic hernia. I can still remember it so clearly. It is devastating news and I was the same exact way you were. My pregnancy was no longer fun, it became stressful and I was scared beyond belief. I did not decorate our nursery until after Matthew was home for a few weeks. I needed to know that he was going to be OK before I did any decorating. I didn't even buy any clothes or anything else. I didn't let others buy things for me.

    Matthew was born October 25, 2011 he had his repair surgery at 3 days old and they had to use a 2 in. patch. He only had about 20% of his diaphragm. He did not end up on ECMO, just the high frequency ventilators. He was in the NICU for 59 days. He is now almost 8 months and doing great. He is on oxygen and he does have a feeding tube.

    You can see our journey here.

    There is hope out there and that is what will get you through this. It is the hardest thing I have ever been through, but these babies are truly amazing. The fight they all have is incredible. I hope you can find strength in others stories.


  6. Jamie--

    I am so grateful for all the CDH mom's that have reached out to me. It has helped SO much. Matthew's story is such an inspiration. No ECMO? Thats great! I am going to read more about him right now. Thank you so much!

  7. Hang in there!!! Keep the Hope and faith!!! God has got this!!! You got this!!! Don't let yourself get too down. I know exactly what you are going through. We have been there (Jason and I) We will be praying for you daily. Know that there are so many success stories out there. My little girl Esther did pass after a 20 day battle but I can tell you all the other ones fighting at our our hospital are making it. God will use your story no matter what and he will carry you. Rest in the peace of our father right now. Knowing that he will carry you through this. Take a deep breath- one day at a time. You are stronger than you know and God will bring you closer than ever before. You can read our at It doesn't make it any easier but know that You are in the best hands. Let me know if you have any questions on anything. We are here for you!!!

  8. Hang in there. I found your blog through baby center. I am a litttle ahead of you in the journey. I am 31 weeks pregnant. Here is my blog Hang in there, slowly but steadily things will become clear, not sure better, but clear. It is a tough journey and we cna help each other through this. I have seem more success stories than not. The tough part is not knowing which one you will be. We decided not to get any baby gear. I will the day they tell me he is ready to go home. Hang in there.

  9. Whitney, this is Denicia. I dont know the right words to say or the proper way to encourage you at this time all i do know is that we serve a MIGHTY God and whatever happens from this point in your life forward just as he has in the past he will get you through it. He will take care of your precious daughter whether its here or in heaven and he will take care of your heart in the process. I will definitely be praying for you and your beautiful family! I pray that God's peace will come over you all so thick that it's incomprehensible. Let me know if you ever need a single thing... Anything at all!

  10. Love her name!! My Sunny will be 19 on Saturday, she is not my CDH'er, but the oldest sister of my CDH baby. My CDH baby is now 8 1/2 years old. He had his repair at 5 days, no ECMO, and went home at 30 days old. No feeding tube, no oxygen, no pulmonary hypertension, he was breastfeeding and doing very well. Sadly, we discovered at 17months that he had suffered an inutero brain injury and has
    cerebral palsy. I know that you are in an overwhelming and scary place. There are lots of parents in the CDH community that are willing and ready to reach out to you. It is hard to be away from your little ones while your baby is in the hospital. Out of the month that Sawyer was in the NICU, I went home only 1 night. My other kiddos came up to see me with my husband (we were 3 hours from home)as often as possible. Other than that, we had to rely on extended family and our church family to help out at home. Hold on, you can do this.

  11. Just catching up on some CDH babies and stumbled across you... Our CDH survivor will be 17 months old tomorrow and she is active, healthy and strong! She spent 22 days on ECMO, and we were told multiple times she would not live. But after 78 days she came home, nursing and growing. It's been tough, but I think we're through the worst of it now and you're right that your life and perspective on everything changes. Don't lose hope! These babies are fighters. Praying for you and sweet Sunni.

    Please please please let me know if there's anything at all we can do to help, questions we can answer or anything at all!

    mama to Clara 3/23/11
    LCDH/ECMO Survivor