I am so scared of having to look into her precious face and tell her that the baby sister she has been waiting for is not going to make it. As all you moms know, the pain we fear for our children far outweighs our own. I cried all the way home.
Kaitlyn knows that Avery is going to be sick and in the hospital when she is born, but she does not know nor could she understand the gravity of the situation. How do I handle this? How am I going to get through this?
We had a fun family day yesterday, but I noticed that Carissa was in deep thought all day. As I played with Kaitlyn at the Jump Zone, we noticed a few pregnancies around and I could tell it was really sinking in:
- Did she imagine Avery there playing with Kaitlyn?
- Was she angry about the entire situation?
- Was she exhausted from counting the days?
- Was Avery moving around a lot, and she was trying to push it away?
- Was she just overwhelmed with all of the above?
It is a helpless feeling seeing the cycle of pain, then joy. As a father and husband you want to shelter your family and take away the hurt...It is not that easy! Carissa told me last night that she was tired and ready for this all to end and just get here. My response was that it is not like a difficult test that you are dreading. When it gets here, it will be here for a while, good or bad.
She said when it does, she will probably hope that we can go back to this point- when Avery was happy and well in her womb without a care in the world-It broke my heart! I have decided to celebrate each week like our friends the Mooney's did for baby Elliot. This Friday is 33 weeks and Avery's birthday. Just in case we have to face the inevitable. After all, she is our daughter right now, and she can hear us, and feel us, and love us. So why not show her we love her back!:)
If you came to my house, you would have no idea that a new baby was expected in six weeks. Is that ok? I just can't do it folks. I can't decorate...I have not bought one single thing for Avery...and it makes me mad. It makes me mad at myself and I am not really sure why. I look at the beautiful daughter and husband that I have and I am so thankful and grateful and then the next moment it's like "why can't I have just this one other thing".
Bare with me guys...this is not a pretty side of me.
Touching something squishy!
Tomorrow, it is more doctor appointments and thoughts of what is to come. We have an ultrasound at 10:30am and then an appointment with my OB, Dr. Duke. I will be 32 weeks on Friday and it is pretty hard to believe how quickly we have moved through this pregnancy. Hopefully all is well. Rather than feeling excited about getting to see Avery, I dread each appointment in fear that I am going to hear more bad news.
In other news, I had a comical conversation with Kaitlyn this morning. Let me preface by saying that Kaitlyn has wavy hair that likes to collect tangles. Most mornings she cries while I try to brush. It is not fun! Well, this morning I said enough. We are going to get your hair cut today. Less tangles and besides, it's almost summer. So I say to her, "I think it would be a good idea if we get your hair trimmed today." She looks at me like I just stole her every breath of happiness and replies, "You are ruining my life!" She crossed her arms and ran out of our bedroom in tears. Shane and I looked at each other and tried really hard not to laugh! I have a 13-year-old in a 5-year-old body! Anyways, she got her hair cut and loves it. I will post some pictures in the next couple days.
“Concretely, abandonment to the will of God consists of finding HIS
purpose for you in all the people, events, and circumstances you
encounter. If God tears up your beautiful game plan and leads you
into a valley instead of onto a mountaintop, it is because He wants
you to discover HIS plan, which is more beautiful than anything you
or I could have dreamed up. The response of trust is “Thank you,
Jesus,” even if it is said through clenched teeth.”
Shane and I continue to have good days and not so good days. Sometimes tears come when we aren't expecting them and that's ok. I think that it is sinking in more that things are not going to just be ok. "It will be ok" tends to be my response to many of life's challenges. In this case, that phrase is not so helpful. It is hard sometimes to remind myself of all that is going on. All day long I field questions like "When is your baby due?" and "What are you having?" I just smile and answer and try to remain calm. I guess I just try to pretend that everything is normal. That way I don't fall apart when someone asks me questions about my baby. Then when I come home and I don't have to pretend anymore, I lose it. It's such a roller coaster of emotions. I look normal, I feel normal, but baby is not normal. It just sucks.
I've worked the past two days so today I am enjoying some down time. The house is quiet and I might just take a nap :).
I am excited for a calm weekend!
Ok, so the good news is that as of the ultrasound on Monday, Avery looks about as good as she could. For you CDH followers, her stomach and only a very small portion of the bowel are above the diaphragm. This is good news. For those not so familiar with CDH, the less number of organs above the diaphragm, the better. My amniotic fluid levels look good. We want those levels to stay in the low to mid teens. Anything towards the 20's creates problems. Mine was at 13. The last bit of good news is that we don't have to go back to Little Rock for awhile. My fluid levels can be monitored with my regular OB!
Ok, the bad news is that Avery has a small chance for survival. It is more likely that she will not make it. The combination of her CDH and particular heart defect are devastating to lung development and she will likely have very little lung tissue when she is born.
The ugly news is that Shane and I as well as our family and friends are really going to have to prepare to say goodbye to this little one. There is a chance that her lungs will be strong enough to avoid ECMO and remain only on ventilation. If this is the case, she may be strong enough to get through the hernia repair. She will then have to recover from that and look towards the heart surgery. It just does not look good.
After a long discussion with the heart surgeon, and with his expert opinion in mind, we have decided to not take aggressive measures to prolong Avery's life. Dr. Jaquiss (heart surgeon) believes that if she needs to be on ECMO, she will never get strong enough to do any kind of surgery. So that being said, she will not be placed on ECMO and will have to fight it out on her own. I would imagine that we will know in the first couple of days whether or not she will survive.
I know this all sounds like we have given up and I want to assure you that we have NOT. However, we are being realistic about the options and believe that this is what is best for Avery and our family. Hopefully, she will be strong and ready to fight. We are holding on tightly to those thoughts. Please stick with us through the next couple months. We are so encouraged by all of you!!
Both Shane and I took the day off to spend time with Kaitlyn. We both had a really hard time leaving her this time. It will be one of our greatest challenges as we travel over the next couple of months. I have lots of errands to do to catch up but I promise to spill all the details when I have a moments peace this afternoon.
Thanks for all the encouragment over the past few days!