U is for what?!

Forgive me for my humor. I forget that not everyone in the world watches television and remembers silly commercials. I tried to find the commercial on youtube, but I couldn't figure out how. Some youtube genius can work on that for me...

U is really for Understanding:

There is a peace that passes all understanding. I feel we were gifted with that peace on Friday. Friday it was easy to pray, and easy to feel God's love and peace. We are thankful for that.

Maybe that fits U a bit better than unicorns. Or maybe it should be: always be understanding, unless you can be a unicorn, then be a unicorn? I like that. I think I will stick with it. It is hard to be understanding of other people, their situations. It is also hard to be understanding of myself and my situation. Sometimes it is a lot. But with that understanding comes more peace. Isn't life always a circle. I am working on being more understanding.

So what does the future hold. Well it looks like we might be in the PICU a bit longer. I was told this morning that Dr. M. doesn't really like to transfer patients on Sunday. Everything, as far as I am aware, is going perfectly for Mercedes. She is amazing. Her resilience and attitude is far beyond what I could have hoped for. She is doing great and really that is all that matters. Maybe we just need a bit more peace, inspiration, comfort and understanding.

 

P.I.C.U.

P.I.C.U. (Pediatric Intensive Care Unit)

P is for Peace. We have had an over whelming sense of peace since we arrived in the Day of Surgery waiting lounge yesterday. I am not going to lie, handing her over to the Anesthesiologist was really hard. Really hard. I don't think either of us were prepared for the emotions that went along with that. But ever since, and still, I have just felt an overwhelming sense of peace. I know as more uncertainty comes that peace may be fleeting but I will hold on to this feeling as long as possible, knowing we are constantly being lifted up in prayer and no matter what adversity comes; we can handle it.

I is for Inspired. We have had so many things to be thankful for over the past few days. In a time where I thought it would be hard to offer thanks, I have found that thanks is never far from my lips. The staff here, the people around the country praying for us, pictures, everything makes me want to shout a big loud thank you. I can't stop. Tim was so thankful he hugged the surgeon. Not sure if you have ever met a brain surgeon, but on a list of attributes and qualities "huggable" isn't probably part of their top 5.  The witnesses we have seen from so many different avenues has been such an inspiration to us. You can't help but want to be better when you experience the beauty we have seen over the past few days.

C is for Comfort. Mercedes is comfortable. That is worth repeating, Mercedes is comfortable. She has had a couple of doses of morphine- one right out of surgery and then again on the PICU floor shortly after she arrived here. Other than that, she has only had tylenol. When I came in, after getting some comfortable rest myself last night, she was all smiles ready to eat and be a little sweetheart to her mom. She had a rough moment this morning, where her tylenol wore off a little early, but once she got her dose she was back to smiling, cooing and blowing bubbles. Seriously, can't beat that. Tim and I are also very comfortable. The PICU room is nice sized. We played some cribbage. We are able to get out and walk around if we need to. We have basically a hotel room here at the hospital. That was really nice to go and get some sleep and wake feeling refreshed and ready to tackle the day. Even if the day started at 4am. If you know me. You know that's saying something!

U is for Unicorn, because you should always be yourself. Unless you can be a unicorn. Then you should be a unicorn.

Recovering Nicely

So we made it through surgery and waking up nicely. We were able to go to the OR recovery room. We missed her waking up by a few minutes and when we got there they started her on her dose of morphine. The morphine really knocked her out. She struggled with keeping her breaths per minute up, simply because she was so zonked. The nurses weren't worried but I couldn't really help but to watch her vitals.  This was the story the rest of the afternoon. It felt like the first 7 hours of our day passed in slow motion. You could have told me it was 14 hours and I would have said that went by slow.

After she nursed around 4, we layed her back down and we figured out her IV slipped and she got some fluids in her foot. Not a big deal but they had to take the iv out of her foot so they only have the IV in her hand now.

She has been sleeping peacefully since about 7:00 and no beeps to alarm us. She ate 3 oz of a bottle like a champ and hasn't had any morphine since she woke up. Just tylenol around the clock now and they will give her some morphine if her pain gets out of control.

In other news, Tim and I were able to get away after she fell asleep and it sounds like the only person we missed were the people drawing her blood. I am sorry, did I say missed? Her blood levels are doing well. They have dropped a little bit since her surgery but again the nurses aren't concerned. We went for dinner at the cafe. We also got to check out our room. The Ronald McDonald House is full. But we were lucky to get into the Helen Rossi house late this afternoon. Did I say lucky? I mean blessed. Very blessed.

We have felt an outpouring of love from our family and friends and even strangers. To say it has been amazing is putting it lightly. I understand what it means to have a debt that you can't repay. Kind of like the love of Jesus on the cross Thank you all for being Christ to us in this stressful time.

*we would like to post pics but the internet here isn't conducive. We will try to add some later!

Close

The Lord is so good. We feel so enveloped in the arms of his mercy. All of your prayers and texts and outpourings of love are such a comfort. I couldn't have imagined what this experience would be like. I can't imagine going through this without the love of our friends, family and of course, our Father in heaven. We absolutley feel this love right now.

We brought her to pre op this morning and they took her back right on time, 7:15. A funny side note, the assistant to the main anesthesiologist ran past us on the skywalk on our way in, shouting good morning as she made her way past. I made a comment to Tim that the stranger was friendly. She turned out to be a member of Mercedes surgery team.

At 9:30 she had her first incision. It took two hours to get all of her lines in and get her ready for surgery, which is about what we expected. Babies are tricky.  At 10:30 they let us know that they are closing her incision and she is being brought out from under the anesthesia. We are just praying that she comes out fine and we will get to see her soon. The doctor will be up soon tell us how it went.

Thanks again for all of your prayers and thoughts and love. We couldn't have gotten through this so peacefully without you. Truly, truly we are all connected in this Body of Christ.

ps. just got even more assurance of God's presence in this whole journey!
prayformercedes@gmail.com. Wow. That was just about all she could say. Wow.

Pre Op. All systems yellow. Proceed with Caution.

We had our appointments with the Neurosurgery clinic and anesthesiology today. Poor little Mercedes didn't like being poked and prodded. I told her that today looks like a vacation compared to the next few days, so she better just get used to it! She got a pass from neurosurgery, with the caveat that anesthesiology will have to clear her as well.

Keeping a baby healthy October/November has proven to be a little difficult. A few weeks ago she had a little cold. Then her sisters and brothers got a stomach bug, which she avoided thankfully, and then we had to go to the opthamologist to make sure her clogged tear duct wasn't infected. A week before surgery everything was looking good, then Monday she came down with another cold! So we headed off to anesthesiology fully prepared to hear come back in six weeks. And we almost did.  The nurse anaesthetist listened to her lungs and couldn't really tell if the rattling came from her lungs or her sinuses. We suctioned her nose and she listened again and all was clear-ish. The Anesthesiologist felt comfortable saying go ahead with the surgery, but watch to make sure she doesn't develop a cough, a fever or any thick green mucous. She said that if it were her daughter she would go ahead with the surgery, so we are. So continued prayers for Mercedes immediate health are much appreciated. Taking her out of her element and off of her naps schedule doesn't really help to keep her happy and healthy. But as we have said many times, this is in God's hands and if for some reason the surgery isn't meant to be tomorrow, we will accept that. He has yet to lead us astray!

Currently we are doing ok. We are both nervous, but again trusting everything will work out for the best. To bide his time, Tim is at the movie Ender's Game with my dad. Afterall, "This is my vacation!" Speaking of my dad, my parents came to Iowa City today for a meeting with my dad's foundation. They wanted to stay and be there for us tomorrow. Which happens to be exra awesome because we didn't get into the Ronald McDonald house today. We are on a waiting list for tomorrow, so hopefully that works, but in the meantime we are hanging out with them and will stay in their hotel about 25 minutes away. So thankful for this special blessing.

A look toward the future...
Tomorrow we need to be at the hospital at 6am. They will get us checked in and ask us the same questions three times (their words, not mine!). Then they will take Mercedes away at 7:15 to get prepped for surgery. They said we might be able to go back and be with her till she is under. THEN they described the process. No thank you, I don't think I want to watch that!  They will start surgery about 9:15 and update us about half way through. It is about a two hour surgery. Then she will be taken to a recovery room where we can be with her and will meet with the neurosurgeon to hear how it all went. When it is all said and done she will have the fused portion of the bone cut out and slits cut in the side of the skull to allow room for brain growth. She will also have one or two blood transfusions. We will get transferred to the pediatric intensive care unit for about a day and then moved to the pediatric floor for a few more days. The total hospital stay will be about 5 days. Obviously we will know more as time progresses, but I wanted to get you up to speed.

Tim and I are both on our cell phones and emails and are happy to receive calls, texts, emails etc. If we can answer we will, but please understand if we don't respond right away. We will get back to you when we can. Otherwise we will try to keep everyone updated with progress via the blog. It will be impossible/exhausting to call everyone so this seems to be the best way to communicate the endeavours of Little Miss Mercedes.

Cranio Synowhat?

Mercedes was born in July 2013. Shortly after her birth we noticed a bump on the back of her head. The doc said it was just a bruise from normal birth trauma and it should go away. Well the bruise went away but beneath it grew a large protrusion. We thought initially that blood was pooling under her skin from the bruise and the birth trauma so we wanted to get it checked out. We got a referral to a neurologist. After six weeks of waiting for that appointment (no rush there!) and a referral for a CT scan, we found out that our daughter has a condition called Cranio Synostosis at the midline suture. Basically babies are born with four plates making up their skull that are all separated from one another so as to allow the brain room to grow causing a soft spot. Mercedes midline suture is fused togther prematurely. This is evidenced by a ridge where the plates have fused, basically eliminating her soft spot and have caused her head to have the shape of a football. We (I) call her my little egg head and I think a heisman trophy pose picture is necessary.

But I digress. Surgery is  necessary to remove the fused parts and allow for her brain to grow properly. Surgery is scheduled for November 8th at a prominent children's hospital in Iowa. We are very blessed to be working with one of the best surgeons and are very confident that Mercedes will be O.K.

The Path

I realize that this blog used to be just cutsie stories about my family and pictures. Well that didn't work too well. See: four posts in the last two years. However, lately random blog titles have been popping into my head and I figure, I have a blog, why not write down the post that goes with the title. Viola! See: four blog post in the past four months (so far with none of the titles that initially popped into my head being used!). Now I ain't promising anything, but this is working as an outlet for me right now, so we will ride that wave. I have come to realize that wanting to write a blog is not the same as wanting people to read a blog that I write. If people read what I write, bonus!

So back to the title in my head:

I have my good days and my bad days. With my good days normally lending themselves to thinking about how I felt on my bad days and my bad days lending themselves to wishing I was having a good day. I have to remember that my days aren't good days or bad days, they are just MY days. Its just that when my days are hard, I seem to think that every day is going to be hard. That this is my life. And I am just a crabby person. Who is lazy. And doesn't like children. Who is a terrible mother. And I will always be like this from this day forward, for the rest of my life, the end. On the days that go smoothly, especially if "a good day" comes after having a "bad day"(which it seemingly always does) I think, now don't you feel silly for thinking that you will never be a productive/happy/loving/good mom ever again. The trick is, I tell myself, to REMEMBER on my bad days that I did once have a good day, and I will once again have a good day.Then my bad days won't be so bad.  But I am beginning to see that my days aren't divided into good days and bad days, they just are my path.

I read an obituary recently that said "...may you always remember that obstacles in the path are not obstacles, they ARE the path." My sister has said this to me a couple of times as well. This begs the question, what is the path and where is it leading. For me this answer is simple. The path is this life that I live and it is leading me to heaven and sainthood. Patrick Coffman from Catholic Answers has a tag line, "Be a saint! What else is there?" My good days can often fill me with pride and my bad days can often fill me with despair. So the trick I must really REMEMBER is not to just get through my bad days to get to my good days. And not just think about how awesome I am on my good days, and ponder how to avoid at all cost having a bad day. But to see each day as a part of the journey. Each day can offer something to me to help me reach my fullest potential and be the person I am supposed to be (a saint!). Whether that is joy and humility (good day) or  suffering and self sacrifice. All of these qualities are good and will lend themselves well as I proceed along my path.

Oh and another thing- acceptance is key. If I can, on my bad days, just accept the fact that I am having a hard day and change my course of action I will, ultimately, be better off. If on a harder day I pull an audible, if you will, do something different than my plan; put in a movie, splurge for ice cream or pizza (or both), I will  be far better off than if I just charge ahead come what may. Because if this obstacle that I see (my bad day) is really the path, and I am really giving my life to Christ, then he planned this day for me. It is a gift just like every other day I have, so I better use it for his glory. And wishing it away, or making it something it is not does not sound like using it for his glory. Pizza however, that does sound glorious!

While it is easier to see my good days as the path and not an obstacle, that doesn't make everything that happens on a good day worthy of praise. In fact, it is often said Pride goes before the fall!  Proverbs Chapter 16:18-20 "Pride goes before disaster, and a haughty spirit before a fall. It is better to be humble with the meek than to share plunder with the proud. He who plans a thing will be successful; happy is he who trusts in the LORD." No wonder my good days are often followed by bad! HA!  So if I can, on my good days just accept with joy the gift of the day and make my best use of it to his glory (who knows, that might mean pizza too) then maybe I will begin to see my days as just the path and not obstacles in it.

While I am sorry that I didn't post any cute pictures for your viewing pleasure, I did post plenty of links for your reading enjoyment!!