I know.....many days have passed since I have written anything. A thousand times I have wanted to, even knew what I would say....but somewhere between there and the computer I got busy, tired, distracted. We have been on an up hill journey lately..steep climb with Clara with lots of bumps. Jason and I have been worn down, waiting and waiting for a breather. Despite this, Clara still continues to amaze us. She has neither lost her spunk, determination or courage to battle with all of us who bother her :). Like I have said for many months, I love that about her! She is a little beauty with blue eyes, fuzzy light brown hair, and a smile that lights up your heart. She continues to plow straight through her obstacles, with Jason, Madeline and myself right along her. The obstacles..oh my the obstacles have reared their ugly head the past month. And we find ourselves back the waiting room...waiting ...waiting for progress, for encouraging news, growth, milestones, for it to be easy.
I have been back to work since April 5th. In so many ways it has been good to be back, my work friends, the students, staying busy away from worries at home, has been good for me. However....the load of it all is enormous. We remain on auto pilot, trudging through doing the best we can. I can't say enough about Clara's day nurses. They love her and are great to us all. Always so helpful, full of positive things to say about her day. They are such a blessing. The amount of work that goes in to Clara's day is a lot. 20+ minutes of stretching three times a day, trach care, play time with splints on her hands, just working working on developmental stuff.(sitting, belly time, grabbing), 2 breathing antibiotic treatments, meds, meds, meds, eye patch time, lengthy feedings, and then..... just other normal baby stuff. I will get through an entire Saturday (because we do not have Saturday day nurses) and still not have done everything!! Again we love our nurses.
Clara is now almost 12 pounds? She has bounced around at the 11 pound and ounces mark for quit a while. We have been back to Chapel Hill several times for various appointments, which always lead to a visit from her nutiontionist, saying she needs to gain more weight. We are constantly adding more calories, new recipes, and recently just changing the formula. No talk yet of solids. Hopefully next week at her feeding therapy we can discuss that.
Recently Clara has been back to the hospital, Wake and UNC for a two night stay combined. Turns out she had a trach infection, which made her a very sick little baby girl. We have had a good week since then, thanks to two antibiotics. She seems to be in a growth spurt since our hospital stay, eating more than ever. I can't wait until next week's visit, for a weight check.
Developmentally things have kind of been stuck. Clara is defiantly delayed for her adjusted age, which is almost 6 months. For a while Jason I have known things are not quit right. In May she had her first appointment in Special Infant Care. The appointment took 3 1/2 hours. Some parts went good, and mostly others were rough. They are very concerned with her development and we did not hear very many positive things from these new doctors we are starting to see. At one point I looked at Jason with his head down, and all could I think was we were back in the NICU listening. There were so many people in the room. I tried so hard to not get upset, so I tried to listen medically to everything they were saying, and tried to not take it personal. I did not want them to think I was sad or scared, for Clara. I would not give them that, however my heart was breaking with the unknowns.
Like I said earlier we constantly work on developmental stuff. We are hoping to get Clara some OT to work on fine motor and other developmental/ stuff, along with feeding therapy to work on drinking and eating (when the time is right). I December Clara was diagnosed with bilateral brain damage called PVL, Periventricular leukomalacia (PVL) is a type of brain damage that involves the periventricular white matter of the brain. Damage to white matter results in the death and decay of injured cells, leaving empty areas in the brain — called lateral ventricles, which fill with fluid (a condition called leukomalacia).
Approximately 60-100% of infants with periventricular leukomalacia are diagnosed with cerebral palsy
I have not mentioned this in the blog because it has just been so really difficult to understand how it was going to affect her. But I am now because maybe someone is reading this with similar issues and it can help to know we are going through it too. As these doctors were saying, her developmental issues are from the PVL, and have surpassed 25 weeker preemie stuff. So I guess we are understanding the Clara's PVL now. We are waiting to learn more about her vision, and she is wearing a patch to correct her lazy eye. Visual impairments can also be from PVL.
My days are good and sometimes hard. The past month or so has been difficult all around for Jason and I. I have said this a lot to others, the NICU was phase 1 and this is phase 2. We have taken steps back and stayed stuck for awhile. I have prayed so hard for just several weeks for growth, good health and good news! I continue to do so daily for my sweet Clara....who has the most amazing smile.
With all that being said. Since our last visit to Chapel Hill and that awful appointment, I have had to think, wrap my mind around it. and get fired up. "They didn't say one positive thing about our precious baby, after all they knew she has been through. The fact that she had smiled at all of them..they never mentioned, the fact that she DRINKS from a bottle...they never acknowledged, or the fact she SURVIVED..they never even honored! So next time good or bad news I will remind these women of just that. I have listened for 9 months to doctors and what they think, their doom and gloom, and all their worst case scenarios. I have let it get me down, scare me, and discourage me. And I am done with it. I will take what they say and use it as knowledge or for whatever I need it to be. But it changes nothing. I know Clara will sit, roll, talk and walk whenever she is ready.We will wait with her and never give up on her potential.
I am currently reading the best book ever, for getting through turbulent times. You'll Get Through this, by Max Lucado. It is about Joseph and how his "pit came in the form of a cistern" He was was abandoned by his jealous brothers and sold to be a slave, put in prison for years for something he never did, sold out, back stabbed, trapped, just all kinds of evil was unleashed on Joseph. But he never gave up, he never became bitter, nor seek ed revenge, never hated, always praised GOD despite it all, and gave him all the glory every time he was asked. Guess what "Joseph had the biggest bounce back in the Bible" (Lucado, 73) He became the second most powerful man, second to the Pharaoh in charge. "His life offers a lesson, in God's hands, intended evil, suffering, becomes ultimate good" (Lucado) God used Joseph's mess for the good, and he can do that for me and for you.
So the waiting room. Chapter 6 of the book Wait while God works, I recently read and it really spoke to me and where I have been the past several weeks, or really for the past 9 months. We have all been in waiting rooms at a doctor's office. Sometimes the wait can be quick, or last forever. My friend Marcy said she recently waited at Chapel Hill for an appointment for her baby, about 2 hours. When she asked what was going on, they said they didn't even know she was there (which is strange since she checked in!!). For her troubles my friend was given a free parking pass, and also an apology.
Anyway back to the point, well Max Lucado's point. We are sitting in God's waiting room. And unlike Marcy's experience there isn't anyone to give us an answer to what's going on, or how much longer. When I look around I see other's also in the waiting room. Waiting to finally get through a divorce and move on, someone waiting for a job interview, waiting for work because they have been laid off, parents waiting grieving the loss of their baby, some are waiting for test results and medical treatments , widows grieving, maybe a few waiting for the depression to final lift, a miscarriage or waiting to get pregnant, or for a marriage to get better, and a friend waiting and hoping for it to just get easier with her special baby too.
We are all waiting on God to come, heal, and help us. (Lucado, 60) Some of us are sitting forever in a waiting room. Then there are some who haven't had to yet, or don't have to wait long at all. I look at those people and think how easy it must be to come and go. Then I remember how easy it was for me before I had to stay. The fact of the matter is, we will all be here in the waiting room. Things will happen, we will suffer and have to wait on God.
In the waiting room their is plenty of time to grow bitter and turn against God. We grow angry and frustrated with his silence and the fact that he doesn't end it. Some wait for years. Like Joseph did. He waited two years for God and he never changed his commitment to God. He didn't walk away, give up, nor lost his faith. And we shouldn't either, because "while we wait, God works" (Lucado, 62)
"My Father is always at his work, " Jesus said (John 5:17 NIV)
Although we may hear silence which seems to last forever, he is working. He never take a break, slows down, loses interest, forgets about our situation. He is working to make your "mess" something wonderful and working through it to make you the person he intends you to be. So hang on, just as I tell myself, Jason, Madeline, and especially my sweet Clara. Hang on because it is going to be good. And as Max Lucado says in his book "you'll get through this. It won't be painless. It won't be quick. but God will use this mess for good. In the meantime don't be foolish or naive. But don't despair either. With God's help you will get through this."
Also in the waiting room, I have found and you can too, LOVE. I have people in my life that show up on a regular basis to sit with me, listen, encourage me, pray for me and for our family and make me laugh. I have parents and in laws who show up to help when I am alone with the girls, and bring dinners. Also.... greatest of all. I have a wonderful husband who sits with me every second, who loves me and our little family, lets me cry and be negative and never judges me with what I have to say. I found God's love in this waiting room. And although we will can not see him he dwells within us.
God says, Do not be afraid . Stand Still, and see the salvation of the Lord...The Lord will fight for you, and you should hold your peace. (Ex. 14:13-14)
And the great thing, as with Marcy and her parking voucher. We too will finally get out with victory holding our free voucher. Maybe in this lifetime or the next ."Whatever we may have to go through now is less than nothing compared with the magnifcant future God has in store for us" (Romans, 8:18)
1 comment:
beautiful. thanks for sharing .... for giving me the opportunity to walk along as I read your words. prayers are continuing for your family.
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