One week old

“In the book of life, the answers aren’t in the back.” ~ Charlie Brown

Today Chance turned one week old. He spent his one week birthday in a new room in pod 8 in the NICU. He’s now in a crib still sleeping on his belly. We arrived this morning to greet my baby boy all cuddled up with his panda and feeding from his feeding tube.

I don’t blame the little guy for fussing, I’m sure he’d much rather cuddle and feed normally too.

He didn’t fuss much though. He’s such a good baby boy and seems to usually only fuss when he’s hungry.

I admired Jason and Chance today.

Everyone who’s been keeping up with all we’ve been going through, especially this past week, usually thinks most of Chance and I and what we’ve been going through medically. I don’t think nearly as many people sense all Jason has had to endure. Sure he may not be going through much medically, but he has had to carry the weight of holding our family together once again. He’s had to juggle making sure the kids are cared for, numerous trips to the hospital to be there for Chance & I. He’s ran errands, picked up prescriptions, made sure everyone’s fed, kept up with housework and laundry. And to think he also feels the same emotional strain of watching our baby boy in the hospital, and now added worries about my own recovery. Yes, observing Jason today it was evident that the effects of the last week are beginning to wear on him. Thankfully he remains strong for all of us.

As tough as things have been, the mornings are when I am in the best spirits. I arrived ready to take photos of my little man. The nurse brought a chair and allowed me to lower the crib so I could photograph him. It’s the little things in life that make me happy.

That allowed me to take some really cute photos of Chance at one week old. As I sat and observed him he smiled several times, opened his eyes, and was just uber cute all around. I had my macro lens on so if he moved too much it didn’t give me time to focus, makes me bummed to know the really awesome smiles I just barely missed. This was the closest one I managed to take.

I adore when he purses his lips together.

When I had the camera focused perfectly to capture his smile I asked Jason to help me try to provoke a smile. It didn’t work, but I still love this photo.

Yes, I love my baby boy’s lips. I think they look more like Hope & Jason’s. Though I’m not so fond of him having the feeding tube in I know it’s what is providing him with the food he needs to grow stronger and is necessary for him to stay in the prone position so his back can continue to heal. I suppose it’s a love/hate relationship and only fitting that it make it’s way into this photo.

Chance is a smart little guy at just one week old. He heard my camera and heard me talking and he opened his eyes.

And smiled…

He seemed curious…

And then looked directly at me. Priceless moment to say the least.

MILK, MILK, AND MORE MILK
Now that Chance is back on the feeding tube I’m pumping more milk for my baby boy. I could be the one trying to take the easy way out and just rely on formula, but I know my milk is best for him. I hear so many say nursing is best for financial reasons – but really when it comes to pumping, bottles and more some may say it’s comparable. But I know after breastfeeding my first two kids that it’s the best for him. Not to mention, I do it also because of the bond it creates. Though I feel a bit cheated out of those moments in the first week of his life, I know his time in the hospital won’t last forever. So I find myself pumping every 3-4 hours. On average pumping 4-6 ounces every time. Today his feeding schedule has changed so he is now fed every 3 hours, 55 cc’s – which I believe is equivalent to about 2 ounces. So I believe I’ve reached the point now that so long as I can keep pumping, he can hopefully stay off of formula. Yes, the photo below was about half a day’s worth of milk pumped for Chance yesterday. Each bottle holds about 2 ounces.

Today Chance seems to be doing well. His back does not seem to be draining any since new sutures were put in. However, fluid did build up in his back around where the back was closed. Today his doctor requested consent to drain his back in hopes that it would prevent his sutures from opening or leaking again. Of course we agreed and continue to trust her advice is to continue to give Chance the best care to help us bring him home sooner. Tomorrow morning he’ll undergo another head ultrasound to see how his head is progressing. We continue to pray for my baby boy and hope he can be spared a shunt. I suppose I pray for once the odds can work in our favor instead of against us.

Hope’s teacher told me yesterday that Hope had written her weekly goal in her planner…for Chance to come home. It nearly made me cry. This morning she ran to me before she left for school to show off her goal, without me asking to see it. She let me take a photo of it.  I suppose the quote below her goal is only fitting for Chance.

THE HARDEST PART
Since learning Chance would be born with spina bifida I’ve had so many people that have went through the same tell me the hardest part was pregnancy. And that there’d be an emotional rollercoaster that followed but they kept saying the pregnancy was the hardest part. Since I’ve been home I have thought about these thoughts shared with me and have left me thinking more and more about it all…

• Sure the pregnancy was hard, but I don’t think it was the hardest part. I had worries and fears but my baby was safe within me. I actually enjoyed most of my pregnancy after I got past the emotional shock of him having spina bifida.
• Many have told me that next to pregnancy the NICU was the hardest part. I can’t quite say I agree with this either. I almost feel more reassured because I know he’s getting the best care in the NICU.
• The hardest part has been coming home and leaving my baby boy behind.
• Nights are the hardest for me. It’s when I reflect the most and miss him the most.
• Yes, it’s at night that things are silent. I find myself trying to rest and just over a week ago when I felt that same silence it was in anticipation of my son arriving. Now that time is spent missing him…being here. But also missing him …it only reminds me how much I miss him being safe within me. I miss the kicks, the hiccups, the times I’d beg for him to settle down and rest so that I might rest for more than an hour at a time.

MY RECOVERY
If you haven’t heard, my recovery has been challenging. It’s an eerie reminder of October 2009 after miscarrying and going through so much medically that month. Yes, one might think I’d begin to feel better since being discharged from the hospital this past Saturday. Unfortunately I’ve taken a turn for the worse. With each day more has been bothersome. My feet have been swollen every day and seems to be worse each day. I continue to feel pain, even under some very strong pain medication. I’ve been told of some discomfort that might continue after I left the hospital so I’ve hesitated overreacting and calling my doctor. Yesterday it was suggested by several people, even medical personnel that I should call my doctor. I thought I’d try to wait until Wednesday when I’m use to my doctor being in the office. And then I woke up this morning. As I tried to get up out of bed I had the most excruciating pain that felt like someone was stabbing me with a knife in my stomach. All I could do was scream and cry. I began to fear if I’d even be able to get out of bed, but thankfully I did. As soon as I got on my feet I called the doctor’s office and hoped one of my doctor’s that I’ve seen regularly would be in. Thankfully they were. I informed them what I had felt and they scheduled an appointment for my doctor to see me earlier this afternoon.

Before we ever arrived at my appointment we ran into my doctor’s nurse at lunch. She already knew I was on my way to see them this afternoon and I again had flashback of October 2009. I’m sure many patients may call with concerns after surgery, but those that know me know that I’m the one who tries to deal with discomfort as best I can and I only call the doctor when I truly feel something is wrong. I think bumping into her and the fact that I’m in more pain a week after surgery was a reminder for not just me, but for them of all I went through back in October 2009. She agreed they didn’t want to take any chances after all I’ve been through.

By the time I got to my appointment the effects of my medicine began to kick in. Even with medicine it hurt so much to walk, sit, and stand. It would leave me feeling as though someone was either stabbing me or I’d feel pretty intense burning, stinging, and a tearing feeling.  At times just sitting there I would continue to feel pain, cramping, and discomfort. I was miserable, even after pain medicine. It was like the only thing the pain medicine really did for me was made me more tired and dizzy. By the time I saw the nurse I felt so fatigued and dizzy and I just wanted to sleep. My doctor examined me and he said my incision from the c-section looked great, however, all around the incision I felt so much pain still. I did leave the hospital with the fear of an external infection around my incision, but now there’s a fear that I may have an infection going on within, possibly an infection of my uterus from surgery. Yes, I again had flashbacks of the surgeries and infection worries in October 2009 after miscarrying. That month of my life was so worrisome and something I fear. To be safe my doctor prescribed me an antibiotic that should help rid my body of any internal infection. Now we pray it works. I fear knowing what would happen if it doesn’t work…so we pray again. It was suggested I take it easy, and all the others I encounter at the NICU see me in pain and discomfort request the same. They all continue to remind me that they’re taking good care of my baby boy and they prefer I rest at night so that I can recover from surgery.

IN JUST ONE WEEK…
In just one short week of his life Chance has touched so many. I have been told it and I sense it. I can sense there are many who are out there silently reading, and perhaps may have been for quite some time. This morning someone from Winnie Palmer’s media relations stopped by when we were visiting Chance. Prior to leaving for the hospital I learned he had begun following me in twitter and I began to wonder what provoked it. I often have businesses and people follow me in twitter and always wonder “why” they care to follow me. So when I finally got the chance to meet him this morning I remembered his name thanks to social media. He informed me that he had been following my blog for several months and that there was a golf tournament coming up for fundraising and to spread the word about Winnie & Arnold Palmer hospitals. Apparently Channel 6 news will be doing an hour long special featuring some families who have been impacted by both hospitals. After following all we’ve been through with Chance’s pregnancy and now since his birth he said he felt our story would be an ideal one to be featured if we cared to share it. Of course here I am blogging…publicly…I see no reason to try to hide now. Perhaps Chance can touch a few more lives and perhaps in the process we can create more awareness about spina bifida. I’m still so shocked at how clueless so many are about what we knew our son would be challenged with so soon in life.

I suppose it’s time to get more rest…hopefully this update has helped you all feel a bit more in tune with what we’ve been faced with. Now we pray that Chance & I get better soon.