Three Month Letter

Milo,

Sometimes when I think about you I can't believe that you are already 3 months old, and then sometimes I feel like you've been with us for so long that you should be much older.  I feel like you've been a part of our family forever, and I really love it.  These last few weeks have been incredible for you.  You've made huge progress in lots of areas and we're all so proud of you!

You had your surgery last month, and just like I knew you would be, you were a total champ.  Honestly, it was hard. And it was hard for a few weeks, but you recovered much faster than I expected.  You handled the pain of recovery pretty well while you were being given lortab.  After a few days of being home we stopped the lortab and started giving you just tylenol.  You didn't like that.  You were still in pain and started crying all the time, just like you did before you had the surgery.  But luckily, after just a few days the crying suddenly started to lessen with each passing day and now you rarely have those big long crying fits.

You used to cry all the time.  But now...well, you act like a totally different baby.  A lot of the time you are content to just lay on the couch and watch what's going on around you.  I could never put you down before the surgery because you would scream and scream.  Now I can put you down and play with you and get you to smile.  Cooper loves holding you, and it's much easier for me to let him hold you now that you're not screaming bloody murder all the time.  I'm so glad that you're feeling better and that the surgery helped take away some of your pain.  The doctors told me that it might not fix your pain - but I am so grateful that it did! You let out the biggest cheesiest smiles now and they just make me beam with pride.  I'm so proud of you for all that you've been through and so glad that you're finally feeling happy!

We are working on tummy time with you.  You can't quite hold you head up on your own yet, but I'm cutting you a break on this one considering everything you've had on your plate.  But, no more excuses, k? Hopefully with all the tummy time you and cooper do together you'll be holding that head steady in no time!

Sleep.  Oh, sleep.  You actually sleep pretty good for us, sweet boy.  Most nights you go down for the night around 9 or 10 and you sleep until about 6 or 6:30 if we're lucky.  I'm so glad that you are sleeping so well and I really hope you make a habit out of it!

You hate your carseat - just like your brother did at your age.  You scream and scream.  Sometimes you scream so hard that you make yourself throw up.  Those days aren't fun for anyone.  I try to limit the amount of time you have to spend in the car seat, but sometimes we gotta run errands and get out of the house! The last few days you've started to do a little better with is, so hopefully the trend continues.

You and your dad.  Boy, he sure can get some big smiles out of you! You love it when he comes home from work and plays with you.  He's kind of like cooper in the sense that he gets right down to your eye level and hangs out with you in your own element.  He's such a good dad to you.  You're lucky to have him - so take it easy on him in your teenage years ok?

Buddy, I love you.

Love, Mom

Spinal cord surgery

 As with any surgery, Milo could not eat anything after midnight.  We needed to be to the hospital to check in at 6:30.  We were nervous about him being starving and crying - but our little champ surprised us again.  He slept from 9PM until 6AM.  We had to wake him up to put him in his carseat and head out the door. Surgery was scheduled to start at 8AM and at 7:58AM we were walking down the hall with the anesthesiologist towards the OR.  Talk about being on schedule.

We went to the waiting room and were anxious to hear if milo would be woken up and have the procedure cancelled or if he would finally get his spinal cord fixed.  After being in surgery for 1 1/2 hours we finally felt like he was doing well and they decided to proceed.  Uncle Matt came up to the hospital and sat with us for a few hours. It was so nice to have him there and supporting us!

We got a call around 10:30 from the nurse in the OR and she said that everything was going great and that the doctor was just finishing up and it would only be another 30-60 minutes before they were done.  At 11:00 Dr. Brockmeyer came and got us to tell us details about the procedure.

He was able to completely untether the fat mass from milo's spinal cord and was also able to remove a considerable amount of fat from the bump.  Before, during, and after the surgery milo was hooked up to electrodes that they would occasionally shock to make sure that the spinal cord, brain, and muscles were all communicating the way they were supposed to.  Dr. Brockmeyer told us that he got great responses from every region while doing this except for the sphincter region.  The sphincter controls bladder and bowel function.  The lack of response during the procedure doesn't necessary mean that he won't have control over these things, but it means that it's something we need to watch out for and pay close attention to as he gets older.  But, all of his other muscles and neurological responses were great!

By 12:00 we were up in our recovery room and he was getting comfy in his new room here at primary children's hospital.  He has been in quite a bit of pain, but they have been giving him lortab as often as they can.  He has to stay completely flat for 48 hours after surgery.  He is almost always laying on his tummy except for when he is eating, then he's flat on his back.  His eyes have begun to swell and get red due to all the pressure on his face and head.  Hopefully the swelling can be controlled for the next 24 hours until he can be in other positions.

We are expected to stay here for 3-4 days while he recovers and then we'll be able to take him home for the remainder of his recovery.

MRI and Lipomyelomeningocele

Shortly after milo turned two months old he had an MRI done on his brain and pelvic/lumbar region. The MRI was looking at the bump on his back to see what it was connected to and how extensive it's connection was as well as looking at his brain for some key signs of spina bifida.

We had been anxiously awaiting this MRI because we were hoping it would answer all sorts of questions for us.  It was frustrating to have to wait until he was two months old to get the test done, but we wanted what was safest for milo - and the doctors assured us that it was worth it to wait.

Finally milo turned two months old and we had an MRI scheduled and then the night before got a phone call telling us the appointment was cancelled due to his recent hospitalization with RSV.  Apparently RSV hangs around in your lungs for quite sometime even after symptoms have gone away and with sedation or general anesthesia the respiratory weakness becomes quite a worry.

We had to wait an entire week before we could get the MRI done and still had to get a few of our doctors to pull a few strings for us to get the procedure done.

The morning of the MRI we were prepared for milo to go under general anesthesia for two hours and to be intubated during the test.  Much to our surprise we found out that our little man didn't even need to be intubated after all! He kept his vital signs nice and steady all on his own!

That night we were told that milo had a condition called lipomyelomeningocele - a rare form of spina bifida.  This condition typically manifests itself with a large fat mass on the back with a little dimple in the middle and a red birth mark. Exactly what milo had.

Milo's spinal cord was extra long and hung down further than the vertebrae and dura (the body parts that protect the cord). This left the cord exposed and vulnerable.  The fat mass on milo's back had tethered itself to milo's spinal cord and was pulling on the cord.  Now, the doctor said that this doesn't typically cause babies pain.  However, we really believe that milo is an exception.  He has clearly been uncomfortable and in pain for a considerable amount of his time here with us and we think it's due to this condition.  Call it parental intuition.

We met with the neurosurgeon a week later and he explained all the ins and outs of this condition.  He said that there are simple cases of spinal cord tethering and then there are difficult and complex cases.  Milo was right up there in the difficult and complex category.  This condition can weakness and tingly in the legs and even the inability to move or control the legs.  It can also take away the ability to control bladder and bowel functions.

He gave us the good news that he could operate within just a few days and the procedure was scheduled.  Again, there were concerns with milo's ability to handle surgery after dealing with RSV to recently.  Protocol says that doctors don't do surgery until 6 weeks after the end of RSV symptoms.  It had been 5 weeks since milo was discharged from the hospital.  The anesthesiologist told us that if she didn't feel comfortable with the way milo was breathing or holding any of his vitals as she started to put him under anesthesia that she would wake him up and re-schedule surgery for a few weeks later.

Blessing Day

Dallin gave Milo the most heart-felt tender, and loving blessing.

Considering everything that Milo has been through in his short life, I know that the words that came out of Dallin's mouth were truly inspired. I wish that I had the blessing word for word - but Cooper escaped Nana Jolley's watch when she closed her eyes for the blessing and before I knew it Cooper was half way up the aisle.  I had to chase him and caught him just in time. So, unfortunately, I don't have all the words that were spoken.  But, I do have the memory of the spirit that everyone felt that day - and it was strong.  So strong that it nearly brought tears to my eyes.

A few family and friends came to our house afterwards to celebrate and Milo could barely handle all the attention!