Miles of Smiles

Home Sweet Home!! Words cannot describe how good it is to be back home. It was a whirlwind 4 days. Although I had a gut feeling that this was "coming", it didn't quite prepare me for the reality of it actually happening. Even worse, nothing could prepare Meghan for what was ahead. It is a particular form of anguish that I had not yet experienced as a mother- watching this sweet little girl go through hours of painful but necessary procedures, hunger, and discomforting touch. To not be able to protect her from that is heartbreaking, and to not be able to explain it to her was so much worse. All we could do was love her through it, and in return, when she wasn’t too uncomfortable, she was smiling. It brings tears to my eyes to think of all she went through, still smiling.

We were discharged yesterday, the day after her surgery. By that night she was smiling, and the next morning I tell you what, it was so obvious she felt better than she did even before the surgery! She could hardly stop smiling. Her fontanelle felt so much better- it hadn’t been so soft in weeks. She nursed contentedly, and slept peacefully. Today I had to go back to work, but Joe said he had one of the best days he has ever had with her- she was so happy! Her poor little head looks pretty sad- a new incision, a very swollen shunt site, shaved hair, hair I had to cut to get the dressing off, and to top it all off, she has these little circular bald spots left by the fiducial markers from the MRI (removed while she was still asleep after surgery thank goodness!)- but all of that fades away when this little girl grinsJ

The new information we have from the MRI was disappointing to hear, however I am glad that we know sooner rather than later.  Her Chiari malformation is a type I, where part of her cerebellum is lower than it should be. It’s the “best” kind to have, and her neurosurgeon thinks that if we correct the hydrocephalus we may see that it resolves on its own. The tethered cord is something that we will look at when Meghan gets closer to a year old, with another MRI. Dr. R. thinks we will likely have to correct it surgically. It involves removing a piece of her spine, and cutting the part of the end of the spinal cord that is connected abnormally to the bone. It is necessary though to prevent neurological damage as she grows, and the cord stretches. As for her underlying brain issue- it’s hard to say. It may be something called colpocephaly. We’ll know more as time goes on, and her brain grows in more as the fluid from the hydrocephalus decreases.

I’m at the point though of ceasing to care- that might sound strange, but medical mommy, and Meghan’s mommy are two different people. All of her diagnoses aside, she is pure, sweet joy, and I am so lucky to be her mother. I am grateful for so many blessings today- family and friends that loved us all through this week, and answered prayer in countless ways.  I am not sure I would have ever learned to truly appreciate the faithfulness, and goodness of God without Meghan. We are home, she is better, and TODAY was a very good day.

“And you will say in that day: “Give thanks to the Lord, call upon his name, make known his deeds among the peoples, proclaim that his name is exalted. “Sing praises to the Lord, for he has done gloriously; let this be made known in all the earth.”

Isaiah 12:4-5

I know this was on the last post, but she looks so stunning in blue polyester I couldn't resist...
Smiling before the MRI...

Smiling while waiting for a bed...

Smiling after surgery...

Smiling the day after surgery....

Smiling this morning. Pure joy:) 

Surgery Plan

Forgive me if this is brief, and makes little sense, but Meghan did not quite understand the "NPO after midnight" deal.

Yesterday was a very, very hard day on both of us. She had to endure at least 9 needlesticks, 2 IV's, not being fed before her MRI, and general anesthesia. She did well, and came out of it without any problems. We found out just some preliminary information from the MRI- she has something called a Chiari Malformation, and a fatty filum that looks like a tethered cord. Both may require further surgery. She also said that her brain doesn't look like purely hydrocephalic either. There may be an underlying issue in how it is forming. We don't have any more information yet as she was still waiting for the official reading.

We were supposed to be first in the OR today, but there was an emergency so we are waiting for her new 12:00 OR time. I will try and update as soon as she is done and we know she is well.

Thank you everyone for praying for us. This means more to us than words can express.

Complications, and Courage.

What a day. Today was the kind of day that has me appreciating even more the couple of great weeks we had with Meghan.  Just like that, we’re headed for the hospital tomorrow, this time to be admitted. When we turned her shunt setting back down several weeks ago, Meghan’s symptoms went away for the most part. We all expected that her fontanelle’s would sink in again, and that the swelling around her shunt would go back down. They never did, but she was acting better- smiling, laughing, improving her skills- we thought that maybe it would just take some time. The last few days she has been a little off- almost hard to put your finger on, and everyone knows babies have off days. Yesterday her shunt was really swollen so I emailed the neurosurgeon and she scheduled us for another Ultrasound- this time of both her brain and her abdomen, to check and see if the fluid was absorbing in her belly as well (this could be another cause of shunt malfunction- both ends have to work correctly!). Unfortunately, the ultrasound showed that her ventricles had increased in size from the ultrasound she had last month- a sign of shunt failure. There is also something “weird” in her ventricle by the shunt catheter. It’s difficult to tell what it is, and some possibilities might be infectious material or blood. So in the office today, Dr. R. took some of the fluid off of her shunt with a needle and sent it for analysis. After we got home, she called and said that the white blood cell count was high, and the glucose levels were low- indicating an infection, however they didn’t see any bacteria when they looked at it under the microscope. So our plan now is to be admitted to the hospital tomorrow morning, have the MRI done under anesthesia, and have a consult with Infectious Disease. Dr. R. says that the shunt will have to be replaced and it will just be a matter of when and how it happens. Right now Meghan is scheduled for surgery Friday morning for a shunt revision, but it’s hinging on what the MRI shows. We should know more tomorrow after the MRI.

This is the part that gets hard. It was scary when she had her first surgery at 5 days old, and believe me this is not any easier.  It is impossible for me as a mother, (and I am sure ANY mother facing a health issue with their child) to understand why this is happening. Joe reminded me on the drive home today that God already knew this was going to happen, and it is His plan for Meghan, and for us. Although I do not know what will happen yet in the next couple of days, I do know that He has shown Himself to be faithful and will carry her through. “Trust in the Lord, and lean not on your own understanding” (Proverbs 3:5) I am claiming that truth today.

We are praying for strength, protection, and wisdom for everyone involved in her care, and thank everyone who is praying right along with us.

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."(Joshua 1:9)

My sweet girls!

Why we were worried...

Being a major trooper for her ultrasound, and this was AFTER they did her brain!

A bit of a stretch.

So we’re halfway through July- the month of follow ups with nearly every specialist Meghan has. Joe and I both agreed we’ll be glad when this month is over. Appointments are not always easy on Meghan, and multiple appointments in one day are challenging. We had 5 appointments in 3 days this week, and we are working on recovery! I’m a bit of a believer in babies liking their schedules and the familiarity of home. Meghan seems to agree, although she has been a major little trooper through all of this.

The month started off with a visit to her regular pediatrician for her 4 month appointment. She’s up to 11 lbs 3oz, which despite the adorable little rolls on her thighs is not quite up to where they want her. We are trialing some different nursing techniques to increase weight gain for a couple weeks to see if that makes a difference.  I have heard that many VACTERL kids remain on the smaller side, and she is still gaining weight and burps like a college pro so I am not too worriedJ

At our visit to her ophthalmologist, he diagnosed her with pseudoesotropia- a fancy name for a condition in which her eyes themselves are aligned correctly, but they appear to cross due to her asymmetric face. Her eyes are a little weak, but he said that it’s because sight-wise she’s still developmentally like a 2 month old.  He also said that because of the severity of her hydrocephalus, her smile is a miracle, and that he got chills when she smiled at him. He mentioned that he took those things for granted with his kids, and that he knows how important that is for Meghan. If he only knew how much my own heart is filled with joy every time she smiles at me…

Meghan was also seen by her geneticist. All of her initial genetic testing came back completely normal, but the doctor is convinced it’s a genetic issue because of everything that is affected. We were offered complete Exome mapping. This is where they take Joe’s blood, my blood, and Meghan’s and compare all of our genetic material to look for things that might not have been translated correctly when those first cells were formed. We are still in discussion mode about having it done. Not only could it potentially identify what’s wrong, there is no guarantee that it would, and it might also identify a gene that Joe or I have for a disease that could- or could not- develop in the future. There are definitely some pro’s and con’s to mull over.

Lastly we saw her neurologist. He was very pleased with her cognitively, but noticed the tremor that she has in her right hand. Apparently that is an unusual finding “for hydrocephalus” and he wants to expedite her MRI and schedule it this month instead of next month. She is delayed in her gross motor skills, but he said that between her head size and the scoliosis in her neck and upper back that it is not surprising. This makes PT and OT that much more important! We have some great therapists that work with Meghan, and we know they will help her reach her full potential. The MRI will be of her brain and entire spine. Although it will have to be done under sedation (not something I’m looking forward to), I am hopeful that it will show us how her brain is growing, and give us a clearer picture of what is wrong with her spine. We should find out next week when that will be.

The last couple of weeks, in addition to becoming a super-smiley, giggly girl, she has started to actually reach for toys. It’s an action mostly from her elbow, and not the smooth motions that typical babies have, but she is DOING it. This little girl, with her thin rim of brain tissue, and her musculoskeletal limitations is knocking my socks off. I cannot begin to express what it feels like to be her mom in these moments. I am flat on my face grateful to God for answered prayer. After weeks of PT/OT and stretching at home, she has begun to relax the muscles of her upper body enough to start to learn. It is definitely a stretch for her, and you can see the concentration it takes. Watching her start to accomplish these things makes the way in which I have been required to stretch my own self physically and emotionally as I learn how to be her mom seem insignificant. I don’t know what’s ahead for her, and that is so totally ok, because I am really grateful for what God has allowed her to do today.

"May the God of hope fill you with all JOY and peace in believing, so that by the power of the Holy Spirit you may abound in HOPE." Romans 15:13

Working my core! And my neck! And totally rocking my hairdo!

I can DO it!

This is what 3 appointments in one day looks like...

And this, is pure JOY.