Miles is healthy!

Give thanks to the LORD, for he is good! ~ Psalm 107:1a

This morning, we got everyone finally loaded up and made the short trek to Peoria.  If you’re wondering, Frozen is the exact length you need to get you from our door to my parents house.  We pretty much drove in silence as I whispered prayers over and over.

We are so so thankful that my parents rearranged their schedules and took time off to watch Owen and Ellison.  Not having to worry about them was wonderful.  When we arrived, they rushed immediately to the basement where the toys are. :)  I nursed Miles, grabbed some food, and William and I headed out to downtown Peoria.  OSF Saint Francis Medical Center and the Children’s Hospital of Illinois is just about 15 minutes from my parent’s house.  We filled out paperwork and got in pretty quickly.  A nurse took the standard length, weight, and head circumference measurements.  I was thrilled to see that he was already up to 10lbs, 1oz.We waited for awhile in a small exam room and then met the super nice Jen Tarpinian who is a genetic counselor.  Here’s her staff picture more so I remember. :)She started by asking a ton of questions about the pregnancy, birth, and our family history.  All while making little genetic looking diagrams on her paper. :)  When she paused and asked how Miles was doing, I said that he was great, I was the one who was a mess.  She immediately put down her paper and said “while I still need to confer with Dr. Hoganson, the blood work I’ve seen looks fine.”   And cue the Kleenex.  We talked a bit more and she said she would be back in shortly after looking over the last round of blood work results with Dr. Hoganson.

Then the long wait began.  She popped her head back in to ask if we had gotten an urine sample and it was “pending” or we needed to do one today.  I told her how we had done it a say later as the lab hadn’t realized they needed it.  Then a bit later, she came back and said they were doing a large blood draw on a baby next door (hence the screaming we heard) and when it got quiet we could expect to be next.

Dr. George Hoganson came in with Jen and while quirky, he was very kind, knowledge, and easy to understand.  He started by telling us a little more about the newborn screening.  He said that because thousands of infants are screened in the state, there are bound to be cases that pick up borderline kids like Miles.  His metabolism was definitely not all the way matured, as witnessed by his jaundice. This was likely why he had elevated C3 acylcarnitine.  (don’t you like all these fancy new words I’m learning to use?)  He said a lot more big word things too, but I basically tuned as I understood that he was almost “apologizing” for our trip.  Miles was ok.  I tried to hold it together.

I did quickly tune back in when he said that all of Mile's’ blood work had come back in normal ranges and they had tested his urine for ketones and it too, was fine.  He had to do a physical exam while we were there.  We mentioned the cleft palate so while Miles was screaming and giving us a good look, Dr. Hoganson checked it out.  And guess what, more good news.  He said he wouldn’t even classify what Miles has as a cleft palate as he thinks the entire palate is intact.  He threw out a few other suggestions like maybe bifid uvula (although this doesn’t look anything like what I see) or just an indentation in the soft palate, but definitely wouldn’t call it a cleft palate.  He said to follow up with our pediatrician and watch it as he grows.  I’m pretty sure I told him that I wanted to hug him at that point.  At that point, he said Miles looked great and he would be closing Miles’ file with the state.  cue: more tissues.I asked Jen to take a picture of us before we headed out.  She did and then said she couldn’t be happier to close a file and never see us back here.We packed everything up, hugged, called William’s parents and drove in silent happiness back to my folk’s house.  I walked in and simply said “he’s fine” to my dad who burst into tears.  Followed by more tears from my mom.

Thank you Jesus.   It was a good day.

My breast milk could be “poison”

Yes, it’s a dramatic title.  But I’m hormonal so forgive me. :)

Just when we get this little man home from the NICU and think we’re pretty much in the clear with major health issues, I get a call from his pediatrician's office on Wednesday, May 28th.Every baby at an Illinois hospital has a blood screening at 24 hours and before leaving the hospital.  I saw both of Miles’ screenings being done.  They use a heel warmer to get his blood flowing more easily and prick his heel.  Then they squeeze his heel hard and fill in each one of circles with his blood.  This card gets sent to the state where it is screened for all kinds of genetic disorders that may not “show up” with physical signs at birth.
The nurse who called informed me that Miles’ blood screen came back positive for genetic disorder called methylmalonic acidemia.  In plain English, people with organic acid disorders cannot break down protein properly.  This causes harmful substances to build up in their blood and urine.  It would mean an immediate end to our breastfeeding and would mean a lifelong of medicine, special diets, and possible g-tubes and organ transplants.

I had to have her repeat the name of the disorder several times because I felt like I was in shock.  She could tell I was trying to not burst into tears on the phone and tried to reassure me that the screening could be a false positive if the initial blood sample was too small or the test was performed too early.  She gave me some symptoms to call about immediately and told me the specialist’s office would be calling very soon.  She thankfully encouraged me to keep nursing him until I heard otherwise.

Later in the day, I talked with the doctor’s office that will be taking Miles’ case.  Dr. Hoganson is a pediatric endocrinologist.   He practices in Chicago and Peoria and thankfully, we were able to get an appointment in Peoria for this Thursday, June 5th at noon.  My parents will be able to take care of Owen and Ellison so we can both be fully present at the appointment.

The day after we received this call, we had to go do a huge round of blood work that got sent to Peoria.  When I went to the lab, I asked them if they used the heel warmers before pricking him.  She said, oh we need a lot more blood than that.  One nurse held him still while one drew a ton of blood.  Thankfully, she only had to try once to get the needle in!The next day they called back to apologize that they had not completely read the orders to see that they needed an urine sample.  So another trip to the doctor and we got a u-bag and I spent the morning nursing, checking, nursing, checking and finally getting a sample to take back in.  And now we wait.  We know nothing except that we will be meeting with Dr. Hoganson, a geneticists, and a dietician tomorrow.Some of the people I know are asking how I’m doing.  Honestly, I feel like I handled the birth and NICU stuff pretty well emotionally.  And then this was the “straw that broke the camel’s back.”  The first day I just cried and cried.  Ellie kept saying “mommy sad?” which made it all the worse. I did just a little Google research just to find out a little more about it and prepare myself to ask questions tomorrow.  I also tried to find real stories of any infant who has had this to see if nursing was possible (it wasn’t).  As of today, I’m just crying when we have a sweet, quiet nursing time.  Every time I get a chance, I just lay hands on him and pray that it was simply a false positive on the screening.  I’m just choosing not to ‘go there’ yet until I have to tomorrow.

I know that many moms choose to not breastfeed or can’t for a multitude of reasons.  And they and their babies turn out just fine.  (And more power to you mommas for ANY way that you feed your babies)  But to love something so much and to be told I possibly won’t be able to do it anymore is just heartbreaking.  Not to mention thinking about what this lifelong disorder could possibly look like for Miles and our family.  It’s a little too overwhelming to process.

So if you are the praying type, I beg you to pray for us as we head to OSF in Peoria tomorrow at noon.  Pray that it was a false positive on his screening.  And pray that if he does have this, that God will provide everything we need to be able to process this news and move forward to be able to do what we need to for Miles’ health.  And just pray for my momma heart. 

*for more info you can check out - www.newbornscreening.info/Parents/organicaciddisorders/MMA.html and www.oaanews.org/mma.htm

Miles’ Going Home Day!

Friday, May 23rd was a good day!  When the doctors did morning rounds, I asked begged that we be allowed to go home.  Dr. Stratton agreed!  The last thing on this little guy’s list was his circumcision.  Save the worst pain for last, right?Around 11, a very nice doctor came and explained the procedure and I signed consent papers.  The nurse gave me a meal ticket .  I ran downstairs to the cafeteria and grabbed a quick bite and got back upstairs just as Miles was getting back.  Now all we had to do was wait until he peed.  Wouldn’t you know…my child would take 4 HOURS to simply pee.  We nursed and nursed and checked his diaper again and again, nothing.  The second he peed, the nurse swung into action and we were ready to leave in about 5 minutes!
Since William had the kids, it was easier for me to just drive him home myself.  They don’t let you carry the car seat out, so he got his first wagon ride down while I went and pulled up the van. We got loaded up and I thanked God as we drove away from our home away from home.When I got home, Anne D was just leaving after dropping off a delicious meal and diapers!  Owen and Ellie attacked the car seat the second we walked in the door. Owen wasn’t too interested in holding him.Daddy sure was though!He finally got a little wash down and I tried my best to get all the little tape off him left from all his wires. William had a hard time letting him go as he had barely seen the little man all week.We are so thankful for the amazing care he received in the NICU.  But we are even more thankful to be home!

Miles Grayson’s birth story

Introducing:
Miles Grayson Pool
May 19,2014 at 4:12pm
9lbs 11oz
20 in
*All TMI warnings apply.  This is a birth story.  Duh. 

**Throughout this story, the beautiful pictures were taken by Holly Birch Photography.  The regular pictures were probably taken by William.

To use a quote from my dad, the theme of Miles’ birth has been: letting go of expectations and trusting God.  But let’s back up just a minute, shall we?  It’s hard to believe that I am getting the privilege of writing my third birth story.  I love birth.  I love birth stories.  And I’m pretty crazy about the babies that come with them. :) 

As the end of my pregnancy with Miles drew to the end, I would drive by Carle and get all giddy thinking of how few weeks it would be until we were there learning what his story would be.  Owen and Ellison's births were probably the most powerful days of my life and I’ll forever be marked by their entrances into to world.  So I was excited about what was in store for #3.  But to be honest, I thought it would go like Ellie’s.  Show up, get in the tub, give birth, go home.  Little did I know that my little man wanted his very own story, one that was unlike his siblings in any way.

On Monday morning around 4:30am I woke up and had to the use the bathroom.  No surprise there, right?  But I laid back down and felt like I had to go again immediately.  Then I realized I was having pain that was a little different than normal.  By about 5:15 I was getting a little excited that it might be the day.  It was starting exactly as Ellie’s had started!  I got up and showered and got ready enjoying the quiet and getting a little excited as the contractions came about every 7-8 minutes, mild but consistent.

I woke up William around 6:30 and told him he was likely not going to work.  We went about our morning with kiddos but started making all the phone calls to my Aunt Toni who was watching kids, my parents, and Holly my photographer.  After talking with the midwives, we decided to come in and be monitored/checked and meet with Ray.  Toni came about 8:30 loaded with fun things for the kids to play with.  Contractions were easy to deal with but consistent.  I thought about staying home for awhile more, but with being GBS positive, I knew I’d need antibiotics and honestly thought that with #3, you just never know how fast it could go (hahaha).  So we packed up, said goodbye, cried just a bit, and took our last picture as a family of 4.Things felt like they slowed down a bit when we arrived around 9am, but after getting hooked up to the monitors, they were still showing as coming every 7 minutes or so.  We walked around for a little bit while we waited for Ray to come over.  At 10:10, he arrived and checked me.  I was “stretchy” 3-4cm and he joked he could probably make me anything I wanted to be.  He told us to go walk for an hour while he called in staff for the 4th floor.It was a bit chilly to walk around the park, so we just checked out the new cardiology wing, walked a few floors, and stopped to get Starbucks.  A girl in labor’s gotta keep her energy up right?  We ran into my parents who must have booked it from Peoria.  We walked around some more with them and then decided to head on up to the 4th floor.We met our nice nurses (Emily and Sheila) and got hooked back up to more machines.  We answered the million admission questions and I got my first round of GBS antibiotics and just chatted with my mom and dad and tried to pinpoint when Holly should come in for pictures as things were going a bit slower than I had anticipated. I put my mom to work on decorating Miles’ bed (spoiler: he never used this). And my dad followed tradition and got the board all ready.Holly came up to the room around lunchtime and I got busy walking.  And walking.  And squatting.  And walking some more.  Some laps with William.  Some with my mom.Ray came down for about a minute and asked why I wasn’t in the shower and I told him I was trying to walk this baby out.   Things were finally starting to feel a little more real. I finally conceded and got in the shower. (not a Holly pic)  I alternated doing nipple stimulation and squats trying to get things to pick up.  William kept asking how I was doing and I just said “I’m bored!  Let’s get things going!”  After about an hour in the shower, my contractions were finally starting to hurt pretty bad.  I decided to change into my swimsuit top and fill up the tub.  William got me a few tub pillows and I had a couple good contractions in the water.  Ahh, loved being in the water.

Ray finally made it back to our room about 3:30.  He asked if I wanted to be checked and maybe we could break my water and get this party started.  Can you tell I was excited?So at about 3:42, Ray checked me and broke my water.  And thus began the beginning my “letting go of my expectations.” He looked at me and said, well I have good news and bad news.  I looked at his face and said “there’s meconium, isn’t there?”  He said there was, and lots of it.  “But the good news is that you’re 8 to 9cm.”  While I was thankful to hear that I was nearing the end, my heart was breaking inside.  I knew I wasn’t getting back in the water.  And Ray confirmed that.  I would have to have consistent monitoring because of the meconium and the NICU team was on the way to be there for after Miles arrived.Looking back, the best way I can describe the next few minutes is like a little God bubble.  Time seemed to stand still for just a bit.  I told everyone I just needed a minute.  I cried.  I told Holly she could keep taking pictures.  .  . it was all a part of his story. I had one or so contractions and I knew I needed to regroup.  He was coming out and I knew laying on the bed was not going to work. So I got out of bed and changed out of my swimsuit top.  Looking back, it was a little symbolic of changing gears and wrapping my mind around birthing in a different way.  The next few contractions were seriously intense and William helped by putting a ton of pressure on my lower back.  Ray had to go back upstairs to another gal who was pushing.  I kind of knew he wouldn’t make it back in time.Within another contraction or so, I was starting to feel the need to push through the end of the contraction and I knew the end was coming.  When I told Emily (my nurse) she said she’d have to call someone else because Ray wouldn’t be able to make it down in time (shocker). The next contraction, my body was pushing by itself.And then in walked Dr. Dillard.  I could tell how great this was going to go down when the first words out of her mouth were “I’m not delivering a baby over that hard floor.”  She repeated this several times while telling me I had to get up on the bed.  I’d like to see you get up on the bed lady.  Grab a pillow and throw it down.  Or have William catch him for pete’s sake.  I’m just glad I couldn’t look at her face.

Sheila my nurse was great.  She was right in front of me and was whispering things like “you can do exactly what you’re doing, just on the bed,” trying to be super encouraging.  I finally conceded and they helped me up on the bed.  But I heard that her eyes got huge when I did not lay down on my back, but stayed on all fours with my head against the back of the bed. 

*these next few pictures I will spare you.  So sorry you had to see all that Holly.*

I stayed that way and with the next contraction or two, his head was out.  But then his shoulders would not come.  A few good pushes and they weren’t budging.  I wasn’t too worried yet but a frantic Dr. Dillard yelled that I needed to flip.  Umm, is that even possible with a baby’s head out.  But then they all flipped me and pulled my legs back.  I get furious thinking how Dr. Dillard didn’t give me one good shot at pushing in this different position.  Oh no, she pulled.  And he came out (bringing a nice 2nd degree tear with him).  There was a TON of meconium that also came with him.

She let William very quickly cut his cord.  And the NICU team went to work.  I could tell from my bed that he was having a really labored time with breathing. I delivered the placenta pretty quickly and Dr. Dillard got to work on my stitches.  Another huge strike against this lady, she would not tell me what kind of tear I had.  Just said things like “just a few stitches and you’ll be fine.”  I am thankful that I am a “seasoned” momma and was able to resist sitting up and punching this lady in the face.  I made a mental note to be more thankful for the care I’ve received with the midwives.  And mentally started writing my letter to Carle. :) William didn’t leave the little man’s side. From my bed, I heard lots of things being thrown around and then heard cleft palate.  My mommy brain immediately pictured a cleft lip or a huge cleft palate that would make eating impossible.  This kind nurse (don’t know her name) came over to explain a little more to me:She explained that it was a very small one in the back of his mouth.  Like this:They got him stable enough to transport him upstairs and I finally got to hold my sweet babe for the first time. And about 2 minutes later, he took his ride up to the NICU, leaving me in tears trying to process everything that had just happened. Thankfully, I had my mom and dad there who prayed with me and were in general amazing!  They had planned on heading home but rearranged things and were able to spend the night with Owen and Ellie.  I knew I was going to need some help from William navigating the NICU and also not being able to move around quite as quickly as I did with Ellie.

They stuck around while William kept us posted from the NICU.  He texted that Miles weighed 9lbs 11oz and I about fell out of my bed.  I did that?!  And the nurse joked that Miles probably would’ve weighed more had he not pooped it all out before his exit.  I ate a quick dinner, (as all I had to eat that day were some Cheerios and coffee) pumped, and got cleared to go up and see my baby.
Ray eventually made it back to our room. I said "nice of you to show up." :)  He apologized.  He said that while he was more invested in my birth, the gal upstairs needed him more emotionally.  I thanked him for that vote of confidence.  He also joked that they were thanking me for giving Dr. Dillard PTSD.  Seriously, has that woman only delivered babies with women on their backs with their feet up in stirrups?!

After Ray left, I finally got wheeled up to the 9th floor.  There is nothing that quite prepared my heart to see my sweet Miles like this for the first time instead of snuggling him on my chest getting ready to nurse.From the get-go, the NICU nurses were amazing and kind and knowledgeable.  We learned he was a “respiratory” case because of the meconium and his trouble breathing.  (This list of problems would soon be added to when I arrived back the next morning.)The NICU "closes" to all visitors from 7-7:45 am and pm when the nurses change shifts.  So William ran home to help get the kids settled in and grab some overnight stuff (as he hadn’t planned on staying).  When he got back, we made our way up right back up.  I finally got to hold my baby at 8:50pm, nearly 5 hours after he was born.   He got lots of kisses and tears dropped on him.The nurse said he was doing really well and would likely even be moved to room air before her shift was over at 7 the next morning.  He was getting “food” through his IV so I wouldn’t be nurse him until the next day.  I finally was able to break myself away from him as I knew I wanted to get pumping again.  We settled in for the night and I tried to wrap my mind around everything that had happened. 

I was in a place I didn’t expect.  In a place I didn’t choose.  Instead of being supported my a midwife, I had a doctor who didn’t listen or even treat me as if it was my birth.  Instead of having pictures of another great water birth, I was going to be recovering from a tear I wasn’t expecting to have.  Instead of a baby on my chest, I got to see my little guy in a plastic box.  Instead of getting ready to go home the next day, I was preparing to figure out how to live in the NICU with two other kiddos at home.  While I felt extremely sad that it was a far cry from the birth I had imagined, God immediately brought to mind Psalm 118:24 - This is the day the Lord has made. We will rejoice and be glad in it. 

Miles was here.  And we wouldn’t be like some of the families upstairs that are dealing with NICU for months.  I wasn’t pregnant anymore!  I could sleep on my back that night.  William’s boss had given him the whole week off so childcare wouldn’t pose a huge issue when I wanted to be in the NICU.  I naturally birthed a 9lb11oz baby!  It was still my sweet baby’s birthday and I tried to rejoice.

The beginning of Miles' story is one of learning to let go of what I thought was going to happen and to trust God.  It's one of choosing to say that God is still good, all the time.  And trusting that while I was surprised by all these events, God was not.  And as you'll read in future posts. . .it's a theme that is going to be a recurring one already in his short life.

Welcome to our family sweet Miles Grayson.  We love you more than I could ever write into words.  We anticipate that God has big things in store for you.  And I look forward to the things that God is going to teach me about himself by giving me the opportunity to be your momma.

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.  

Romans 8:28