20/20- Matthew's Story

Present Day- "You may want to consider a therapeutic abortion." Back in August, those words were spoken to me and as I sit here holding my newborn son, those words ring in my ears.  Me, mother of one already, woman who wants MORE children, ME.  How could this have happened?  At a mere 4 weeks pregnant, those words still stung me to my core. I was comforted by a verse read to me a few days earlier by my mother, 1 Peter 1:6. “Be truly glad. There is a wonderful joy ahead." God knew I needed just a tad bit more reassurance in those seconds of silence on the phone with my doctor, and the words to Hillsong's Oceans, which I just sang at church a few days prior started overpower the sentence that had just been spoken to me.  "You've never failed, and you won't start now". God began telling me in those moments to trust Him.  To look back and see what intricate plan He had been working on.  All of these thoughts flew through my head in literally seconds. With tears in my eyes and a shaky voice, I said to my doctor, "No, that's not an option."

June 2015- I started having some issues with my pacemaker.  I'm admittedly stubborn and when I finally went to the doctor in July, it was determined by my cardiologist, I needed a specialist to determine what was wrong.  Despite the specialist being booked until mid-August, I got a call the next day asking me if I could take an appointment that very week because his schedule had suddenly opened up.  Coincidence? I think not.  At this appointment, the Electrophysiologist quickly discovered the problem.  He was able to do a “quick fix” that stopped the symptoms I was having and explained that there was no immediate danger.  The problem could be fixed whenever I wanted.  I could wait 18 months until my battery life was lower, I could wait to see if the problem got worse, or go ahead and get things taken care of in the next few months.  After some prayer and discussion my husband, Rob, and I came up with some questions for my doctor to help determine what course to take.  Number 1 on the list- What if I were to get pregnant in the next 18 months?  The answer was simply stated “We cannot do the surgery if you are pregnant.”  Although we were not trying or planning to try, 18 months is a long time.  We decided we would schedule surgery for some time in September.  God intervened again, and my doctor with the jam packed schedule, gave me a surgery time a week later, for my non-emergent pacemaker switch out.  The timing wasn't ideal for me. I had things I wanted to do the rest of the summer and recovering from surgery wasn't one of them.  I resisted, was angry and annoyed that my plans were getting messed with.  God likes to laugh at my plan to make a plan mantra; He often reminds me that His plan reigns supreme.  I tried to fight the fact that I knew this is what was happening, but after some angry tears and rationale from Rob and my mother, I accepted the surgery time.  The timing although not ideal for my wants, was ideal for everyone else.  My mother who works during the school year, arrived to stay for a portion of my recovery time to help care for me and our 18 month old son.

August 3^rd- I arrived at Hopkins.  Standard pre-op procedures were done, including a blood pregnancy test.  My results were negative. The surgery went well.  There was an additional complication with my pacemaker that was not detected beforehand.  My doctor found and corrected that while he was in there.  This added an additional hour and a half to my procedure.  While I was in recovery, the doctor reported back to Rob saying, "It's a good thing we did this now, with the other complication there were more risks with waiting that we didn't know about”
August 5^th-  Now home recovering with my prescription pain meds I had a random fleeting thought.  What if the pregnancy test was negative because God knew I needed the surgery, but I really am pregnant?"  I don't know exactly where the thought came from and it went as quickly as it came.  I shared with Rob, who immediately laughed and said I was crazy.  I wrote it off as hormones, pain meds and lingering anesthesia. 
August 6^th- The thought comes and stays longer this time.  By mid-day I had rationalized to myself that I needed to take a test because I didn't want to continue with my heavy pain meds until I had confirmation.  I truly didn't expect a result different than what it was in the hospital, but 3 minutes later I saw those 2 pink lines and began to weep. Panic set in.  I had undergone radiation, anesthesia, heavy pain meds and to top it off, I remembered the words of my doctor, "This surgery cannot be done while pregnant."  Questions flooded my head. What had I just exposed my child to? Why had God allowed this? How in the world am I pregnant?! After taking 3 more positive tests, there was no denying it.  I was pregnant.  I called my OB and explained the situation and they told me that if I had a blood negative just a few days prior, these at home tests were wrong and I needed a blood test confirmation.  I called my regular doctor and went in for yet another test and blood draw.  Their initial testing was also positive.  The next day, my growth hormone level was high enough that there was no way it should have come up negative just a few days before.  I called Hopkins where I had my surgery, and asked to have my blood test results read to me again.  They were negative.  Now having processed this chaos I found myself in, the word shielded became a powerful one to me.  As I had cried to God about why He'd let this happen, another thought was impressed upon me- My baby was fine, God has shielded them from any harm.  My confirmation to this thought came a few hours later as my mother had a verse pop up on her computer- Psalm 119:114 “You are my hiding place and my shield. I will wait for your word.” I began to cry again- God shielded my baby.  Everything would be fine!  A call from my heart doctor came soon after this.  After hearing my situation he explained why this surgery isn't done on pregnant women.  There was a constant radiation flowing through my body for the entirety of the procedure. He explained that at such a high volume he felt that irreparable damage was likely caused. "You may want to consider a therapeutic abortion".  He was doing his job of course, and he was respectful of my decision to not pursue that option, and I still see him for my heart issues. I hold no ill will towards him.  He didn't know what I did.  God shielded my baby, and my baby was fine.  Confirmation once again came soon after in the form of the verse of the day in my mom's devotional. Psalm 139:16 “Your eyes saw me when I was formless.  All my days were written in your book and planned before a single one began.”

August 26^th- My pregnancy was not drama free. At 6 weeks I began to bleed.  I thought for sure that this precious baby that God had shielded was going on to be with Him before it even had a name.  I prayed all night that God would save my child, or at least allow them to feel  and know it was loved and cherished during its short time here.  As I sat in the waiting room with other pregnant moms waiting to catch a glimpse of their child's face on an ultrasound, I cried as I waited to find out if mine was even alive.  As soon as the ultrasound began I saw that flicker of a heartbeat and the nurse turned up the volume for us to hear that beautiful beat.  God reminded me of His power, control and compassion in those moments. "I've never failed, and I won't start now." 
November 19^th- My OB recommended I see a Perinatologist for multiple reasons during this pregnancy.  One of which was the radiation exposure.  At our first visit with him, he told us that he felt the timing was literally "just right" for NO harm to have been caused to our child, however he wanted to keep a close eye throughout the pregnancy.  At our 20 week ultrasound, he confirmed that no damage had been caused and felt we were in the clear.  I prefer to say that we were in the palm of God’s hand.

Present Day- Matthew Robert "a bright gift from God” is now here with us, healthy and perfect in every way.  He is a constant reminder of how God has woven each of us together with great care, love and intricacy. He makes no mistakes.  Hind sight is 20/20 and even better than that, God is always 20/20.  As I look back over Matthew's story I see God in all the tiniest details, to the largest ones.  His timing is perfect, His plan is perfect.  From opening an appointment so I could see my doctor sooner, getting my surgery scheduled at the "just right" time for no damage to be caused, a timely false negative pregnancy test that we've been told scientifically should have been positive, the daily confirmations like special verses or song lyrics that would come to my mind. Through all of those things and more, God showed me how to relinquish my own control to Him and rely fully on His grace, power and perfect plan.  To say our healthy son is a miracle, feels like an understatement.  So many people rely so heavily on science, but Matthew’s story defies it and makes me want to lean deeper into faith instead of reason.  Every time I look at his sweet face I remember what the Lord had brought our family through to get here together, safely, held in the palm of His hand.  It’s easy to go day to day not realizing what God is protecting us from.  Since this journey unfolded, I have found myself more and more grateful for His protection and plan for my life and my family’s lives.  I pray that God will use my life and Matthew’s life to reassure those around me that He DOES have a plan, and that it is so much greater and more perfect than our own.  No matter what you are walking through friends, be reassured that the Lord Almighty is walking it with you, shielding you from things you could not be aware of and things you cannot see.

 

 

 

 

#Spicalife

I think every parent pictures a perfect child when they are imagining their child coming in to this world.   You don't picture body casts, helmets for flat spots, open heart surgery, seizures, strokes, brain tumors and the inability to hear.  Are our children still perfect when those things become obstacles that they face? ABSOLUTELY! A RESOUNDING YES!   This is something I've thought a lot about (specifically regarding  the above scenarios because I have friends who's children have such issues, but this does not exclude anything else that a child or parent may face).  Our kids are perfect because they are suited PERFECTLY to us.  Their obstacles, their challenges, those things shape who they are, AND who we are.  God has used Eli's hip dysplasia to shape who I am as a mother, and how my faith in Him has grown.  Do I HATE hip dysplasia and Spica Casts? HECK YES! But at the same time, I am thankful for them.  I am thankful that there is a way to fix hip dysplasia.  I am thankful that it has forced me to remember that God is control, and He shows us grace and mercy when we try to take the control from His capable hands, into our own.  I am thankful that He has gifted so many doctors with the understanding of medicine, and has given them the skill and knowledge to advance the medical field, heal, and better the quality of life in the above mentioned obstacles and even more.   I am MOST thankful, that when I am weak, God is strong.  I could not handle these things without Him.  It is not on my power that we made it through 12 weeks of Spica life, and it's not on my power that we will make it through the next 6.  Now, I'll be totally honest- the night we came home from Eli's first procedure and spica cast placement, I crumbled.  I was mad.  I was hurt.  I felt inadequate and incapable.  I left Eli with my husband, my mom and my friend and I locked myself in the bathroom.  I got in the shower fully clothed and let the water wash over me for over an hour.   I let myself have that time to grieve.  I picked myself up, and I cared for my child, and decided that even if I couldn't handle it, God could, and WOULD.  

Spica life is not fun. It's frustrating.  I can remember the first time I held Eli when he went into his cast.  I couldn't feel HIM, all I felt was fiberglass.  For a first time mother of a mere 2 month old, you can imagine how much that hurt my heart.  I felt (and still feel) jipped out of 12 weeks of Eli's life.  There were 12 weeks where I held and cuddled with fiberglass, instead of my baby.  Now in reality, every day is the last time you will hold your child at that exact size, but I missed 12 weeks worth of exact sizes, and I struggle with that.  Everyday spica life at home was difficult.  Some things that were difficult got easier, some did not, and I am dreading having to do again.  A few things that were challenges right off the bat were burping and feeding.  The standard cradle position for feeding was hard.  I've known other people to not have as much trouble, but I couldn't really manage it.  Whether it's arm length, cast shape or most likely, strength, I wasn't able to cradle him.  Instead I would sit him strangling my knee facing me and hold his bottle to his mouth with my right hand, and tilting him back with the left. I probably got carpel tunnel in my wrist from that! For the sake of any other Spica moms that may come across this- this time around, i plan to sit him with his back to me  so he is against my body rather than all his weight on my wrist,  at the time I was more concerned with keeping him reclined enough for eating than the pain in my wrist.  Burping was extremely hard to do.  Eli's cast came all the way up his back leaving a little below his neck exposed.  The prime spot to "hit" for burping was covered.  My innovation led me to try walking up and down the stairs.  I discovered that when my heel would hit the next step (going down) that would cause Eli to burp.  Standard bouncing up and down didn't work quite as well.  I think it was the change in elevation combined with the abrupt "jolt" from my feet hitting the stairs, that made this work.  Next we come to the challenge of finding comfortable positions for Eli to be in.  We rolled hand towels, washclothes and receiving blankets and put rubber bands around them and kept them on hand at all times to put underneath him.  The different sizes helped us to eleviate pressure points from the cast.  For example- his arm pits, tailbone, his right hip/thigh and his left ankle were all problematic areas.  We had to rotate him and change his position and elevation (with the rolled towels and blankets) frequently to keep him from getting sores from the cast rubbing and putting pressure on those areas.  I read on a Spica blog, that a beanbag chair was a "must-have" for any child in a spica.  The chair forms and molds to the cast and helps older kids sit up and younger ones to lay down comfortably.  The blog I read was 110% right.  Both soft, and firm pillows were very helpful as well.  Playtime was very hard at first but as time went on, and we got more used to the cast, ideas on how to give him opportunity to play got easier.  We cut the side of his bumbo so that he was able to sit in it.  We got a booster seat with no sides that when you put a rolled towel between his legs worked GREAT for playtime.  Tummy time was not really an option until about 6 weeks in to the cast.  The cast was too high up and made him top heavy.  This made it hard for him to bring his head up and from side to side.  As his neck strength got better from being carried on my hip at 2 months old, the easier it was for him to have tummy time.  He didn't fit in to his car seat and we had to get a special one made for spica kids.  The stroller we have (baby jogger city mini) worked fairly well because the sides are low.  A towel roll was needed to make it work though.  Now we come to the part that I am DREADING about the next 6 weeks.  Diapering.  This was an ordeal.  It involved, 2 diapers, 2 incontinence pads, flipping him like a pancake, vinegar, the blow dryer and paper towels.  This happened at least every 2 hours around the clock.  Although I did it so many times I could probably do it in my sleep, it was not easy.  On the plus side, kicking baby legs were NOT an issue!  It was so important to keep the cast clean and dry to avoid Eli needing to be put back under anesthesia and recasted, it was an endless task.  In the end, I was commended on it being the cleanest cast that Eli's doctor had ever seen.  Boy, did those words make me feel like changing (at least) 1,008 diapers was worth it!  

Now, a lot of people have said "it's so great that he can get it done so young because he won't remember".  This is absolutely right and it is a blessing.  I know that it is said out of love and truth and an effort to make us feel better and in some ways, it does.  In other ways, even if it's selfish, it frustrates me.  There is definitely a plus side to the fact that he won't be traumatized by this or struggle with feeling like there is something wrong with him, and for that I am thankful that he is protected.  On the other hand though, WE will remember.  This is part of who he is, and why every time he runs on a soccer field, slides in to home base, or kicks a field goal, mommy will shed a tear.  I will remember that I sacrificed 12 weeks of holding him.  I will remember that I didn't want him to have to go through this at all.  I will remember seeing him laying there helpless and confused.  I will remember the trauma it caused US.  I know of 2 people who have had hip treatments when they were young.  They don't remember it at all.  They are however, eternally grateful for their parents, specifically their moms, for taking care of them through that.  I find solace in that.   As a parent, you know that time is a precious gift.  The baby stage doesn't last forever.  It goes even faster when it is broken up by surgeries and casts.  I want so much to slow things down, but when it comes to the Spica Cast, I want to fast forward.  So I say again, I feel jipped, I feel like I am in a catch 22 of not wanting to miss a single second, to wanting to jump ahead to when this cast business is all behind us.  I recognize the fact that this all must sound selfish, but I think that a lot of moms don't allow themselves time to grieve, and feel jipped.  We think to ourselves, "it's not about me, it's about them", but guess what?! THEY are a part of us. You don't have one without the other anymore.  You are not being selfish by hurting for and with your child.  You are not being selfish for realizing how this not only effects your child, but how it effects you as well.  Don't dwell on it, but don't ignore it either.  Ignoring it won't be good for you, and in turn won't be good for your child.

While Eli won't remember his experiences in the cast, he will see pictures and hear stories.  I've said from the start that I didn't want Eli to feel like life stopped when he was in his cast.  I want him to see joy, fun and stability.  So we go on adventures, take pictures and I inundate Facebook and annoy people with them.  I don't do that for anyone except Eli.  He is not a burden, although the cast is.  He is not the cause of my hate for the cast.  He brings us joy, he teaches us about resilience and strength, he shows us what courage and determination really are and more than that, he is the picture of overflowing joy, love and trust.  He knows nothing other than the fact that mommy and dad take care of his needs.  I don't need to reassure him that none of that will change during Spicalife, he just trusts.  What a picture of what our relationship with God should look like!  When our life circumstances change, and we feel trapped and restricted that shouldn't affect our trust, our joy, or our love for God.  And yet, it does.  I pray that Eli's spica cast is a reminder and representation to all who hear the story or see him in it, of love, joy, resilience, strength, courage and TRUST in God.  This way, even though he may not remember, everyone else WILL remember what Spicalife taught us. 

The Calm After the Storm , The "NICU Normal"- Part 2

     I have struggled to write this blog, and have attempted a few times but had to stop.  Even now, being on the other side of the NICU, I struggle with a multitude of emotions. I can remember the way he looked.  I can remember the dread in my heart that hit when I realized he was going to the NICU.  I remember the things I DIDN'T feel right away.

     When I left you in the first part of this story, Eli had just been brought back to the NICU.  After this, Rob and I went back to recovery for me, and waited anxiously for my half hour to be up so we could go see him again.  We talked about what he looked like, trying to piece it together since we saw him for such a short time.  We talked about his strong cry, and the fact that we thought that was a good sign.  We talked about how big he would have been if he had gone full term.  Then we comically discussed how all modesty goes out the window with child birth and the new level our marriage had just gone to.  We laughed, and disguised the dread.  When the half hour was up, we were wheeled through the NICU on our way to my room.  When we got there, Eli was hooked up to a number of tubes and wires.  He was distraught.  He had rapid and shallow breaths.  He was purple.  Somehow in my new found motherhood I saw all of this, but it did not register.  I wanted to take pictures.  Rob on the other hand, was terrified.  He actually wondered for a second if this was even our son.  We spent a few minutes looking at him before the nurses gave each other a nod that I remember now, but don't remember seeing then.  On we went to my room.  Once we were there and got settled, my parents arrived.  I told them about Eli, and showed the them picture I had taken and about how I was feeling, and asked my nurse when I could bring them back to see him.  Eli's doctor came in to explain Eli's condition and ask our permission to do a procedure to help his lungs.  I could see my Mom sitting across from me with a strange look on her face.  Eli's doctor had a thick accent.  For better or worse, I couldn't actually understand much of what he was saying.  My mom however, she could- which I now know, was why she had that look on her face.  I happily agreed to whatever it was he wanted to do.  A little while later despite being incredibly nauseous, we took my dad to see Eli.  My mom opted to stay in the room because she thought she might be getting sick.  I practically jumped out of the bed into the wheelchair.  On the way to the NICU (only a hallway away) we stopped twice because I got sick.  When we got to the NICU, I stood at my son's incubator.  Pain, nausea, and wobbly legs didn't matter.  Later that night,  my in-laws arrived and Rob took them to meet Eli.  Family was there, our baby was there, and my meds were starting to work.  I was on cloud 9.  Somehow the NICU wasn't as terrible as the lingering dread and angst in my chest led me to believe...Or so I temporarily thought...

     Throughout the night, Rob and I woke up and wondered how he was.  Rob at one point said to me, "Do you think he'll make it, are we going to lose him?".  I started crying but managed to swallow it long enough to say "I don't know, but he HAS to." That realization that he was struggling with that thought hit me hard.  It wasn't an option in my mind, but the reality was, it WAS an option.  At 6am, I called and spoke to Eli's nurse for an update.  Then around 11am, we went back to the NICU.  I started to feel empty.  I started to feel like a terrible mother.  I had slept and ate breakfast and carried on as if I hadn't had a baby.  I HAD a baby, but I didn't HAVE a baby.  Such a strange feeling.  Such a strange situation.  You don't prepare for that.  Its not part of birthing or baby classes.  I was mad at myself for not staying up in the NICU with him.  I was mad at myself for being in pain and having that hinder my ability to go see him.  I was mad at God that the glorious moment at the end of child birth- HOLDING YOUR BABY, didn't happen for me.  I DIDN'T feel like a mom. 

The next part of this post was written in "real time".  I took the facebook and prayer request updates that I wrote each day and put them here.  It explains things better than I could looking back at the experience.  You'll notice that I never posted that original picture I took of Eli when he was struggling/fighting for his life.  It's a picture that I saved away in a folder I don't look at.  This is a picture that only immediate family has seen.  Its a reminder of how far God brought him, but still too hard to look at.


1/25/14
Eli Update: His issues are standard for a baby born at 35 weeks but are issues none the less.  He has some fluid on his lungs and as of last night was considered to be in respiratory distress. He also had a very low blood pressure.  We just checked on him (around 6am) and he was given a special treatment because he was still breathing rapidly in the 120s but is now down to 80-90, so it's comfortable, but still not where it needs to be which is around 60. Blood pressure is stable on his meds. They haven't been able to decrease those but haven't had to increase either which is also good. They were able to lower his chamber temperature because he has a very warm core like his daddy! 
Overall things are looking ok. Please pray that God would strengthen his lungs and whole body!

1/26/14
Eli Update-  Eli is a fighter. His nurses jokingly complain that he is constantly trying to take off his wires and tubes. Just when they have a method of keeping him from reaching things he finds a new way of taking them off. Using his foot is one of the ways he has figured out how to take his nasal tubes out. He sure is good for a laugh!  His levels are all still maintained with the help of medications but the biggest excitement right now is that his blood pressure meds have been lowered significantly and he is maintaining the level well.  He got some of mommy's milk today through a syringe and thoroughly enjoyed it which was encouraging for me.  I feel far away from him and kind of helpless bc I cant hold him but this and helping soothe him with a pacifier in the incubator while the nurse changed him really helped me feel close to him and like I'm helping him.  Tomorrow he gets a routine brain ultrasound to check for any abnormalities or bleeds that may have been caused over the past few days of respiratory issues. Please pray with us that he passes this with flying colors.  He will be in the NICU at least until Friday when his weeklong course of antibiotics will be over.  Thank you all for your concern and love for our baby boy.

1/27/14
Eli Update- Our funny little boy continues to make us laugh with his determination to get his tubes off. He is very sneaky about it but we are starting to catch on.  One of the most wonderful things we have experienced so far is that when we come in to the room near his incubator and start talking he immediately starts reaching out for us. He flails until one of us holds his hand.
Medically he is doing very well. His head scan came back NORMAL! He is off his blood pressure meds completely. His chest X-ray shows some effects of his RDS (respiratory distress syndrome) but no fluid. The nurse tells us it is normal to still see those effects at this point so it's nothing to worry about.  His glucose levels are normal now as well.  Today, they will take off his cpap machine and replace it with a mask that just blows some air up his nose. If he does well with this we may be able to hold him as soon as tomorrow!

1/27/14
Eli Update- I was discharged from the hospital this morning at around 1030. This was bitter sweet because having been in the hospital since Wednesday I was going a little stir crazy but it was very hard to leave Eli behind.  We made plans to come back later in the day to see how he was doing.  When we left him this morning (as I said in my previous update) the plan was to see how he did without his cpap machine/mask and replace it with another that just blows air up his nose.  When we returned to visit this afternoon the nurse told us she had a surprise for us... She lifted the covers on his incubator and to our surprise we found a MASKLESS FACE! Not only did he do well without the cpap, but he had no need for the other machine either. They also took out his umbilical IV which meant we were free to FINALLY hold our little boy.  I was able to feed him (he ate like a champ for 25 minutes) and we were both able to hold and snuggle him! We are over the moon about how much God has healed our little fighter in the past few days. Thank you for your prayers, love and support! God is good, and boy is He working fast!

1/28/14
Eli Update-  Eli is continuing to do well and there is not much to report, which in my opinion, is a good thing!  His bilirubin was borderline high today. They will recheck that tonight and decide whether he needs a biliblanket tomorrow. The obvious hope is that he will not need it at all but if he does need it, please pray he is still able to come out for feedings so we are still able to hold him at least for short amounts of time. We're getting kind of attached to the little guy ;-). Thank you for your continued prayers! Here is a picture of him totally zonked out after lunch. Gosh, our kid is cute!

1/29/14
Eli Update- I spent the majority of the day at the hospital with Eli. While this was WONDERFUL its also a little overwhelming because it makes me want to bring him home even more.  His bilirubin levels were slightly higher today however his doctor still was not terribly concerned and decided to retest again tomorrow before deciding whether he needs the "biliblanket" or not.  His IV rate was decreased today and his glucose levels were still normal after a few hours of this so they tell me this is great news as well.  Eli's nurse today was one who was there the night he was born.  She expressed to me how amazing it has been to watch him fight to do so well. Given her experience in general as well as with Eli, I gathered enough courage to ask how long she thinks he might be in the hospital.  She explained that given how much he has been through he has gone through a lot of his "energy stores". Little things exhaust him. They want him to be able to do those little things without getting exhausted before he can come home. She told us to prepare ourselves for him to be there another 2 weeks but to remember anything is possible and everything is day to day.  Please pray with us that he is there as long as he needs to be but that he continues to fight and can come home as soon as possible.

1/30/14
Eli Update- As you may have seen in the picture earlier, Eli did end up needing the biliblanket to bring his bilirubin levels down.  The doctor expects it to take 2-3 days to come down.  He also is out of his spaceship (incubator) and now in the open air and maintaining a normal temperature.  The other big news is that he is no longer on IV fluids as of about 3pm today and his Glucose level was still normal this evening! 
He is eating very well which is a good thing but now that he is off the fluids it is even MORE important that he continue to eat well because there is nothing else going in.  Please pray he continues to maintain his body temperature, eat well and that his bilirubin levels come down!  Thank you all again for following along and praying for our little man!

1/31/14
A week ago today our whole world changed. A week ago a little man came crying in to our lives and stole our hearts with his first little cry before we even saw his handsome face, adorable ginormous hands and sweet chubby little feet. In a matter of 30 seconds our minds went from thinking - "you will get to go home from the hospital today" to "you're having a baby today". I started frantically tidying up the hospital room and Rob went home to get a few things and tidy up the house bc those were the only things we could do to show any amount of control over what was happening.  Our son's name means "uplifted because The Lord is gracious". Over the course of the last week, we have seen the beauty of our LACK of control and the complete joy over God's total control over our little boy and we have never felt stronger about the meaning of our little boys name. Eli John, mommy and daddy have uplifted you to The Lord because HE IS GRACIOUS and he gave us you. We love you little man, happy 1 week old day!

1/31/14
Eli Update- Pray Pray Pray! Eli is astounding his doctors and nurses with how fast he has been improving since they told us to prepare ourselves for another 2 weeks. If you've been following along when I would post about ultrasounds you know our boy is stubborn and my parenting method of choice will have to be reverse psychology based on his personality. WELL- today he needs to pass a 90minute carseat test and a second bilirubin blood test at 2pm and THEY WILL LET HIM COME HOME TODAY!!!!!!!

1/31/14
"I'm comin' home!!!!" Thank you Jesus!
                                           


     As I look back at these updates, I'm struck by God's gift of strength to me.  I didn't know at the time that that's how it looked outwardly when inside I thought I was anything but strong.  I was so stuck on my own weaknesses, angers, emptiness and disheartened state.  I can see how my joy returned after holding Eli the first time.  I see what an unexpected gift that God gave me in not understanding the doctor through his accent, so the fact that Eli was literally fighting to survive was not something I actually understood until a few days later. When I was physically weak and my mental state fragile, was not the time to find out my son was fighting for his life.  The idea of thinking that before I was even able to hold him and tell him I loved him, brings tears to my eyes even as I type it.  Another unexpected gift was being able to go home and recover from my C-section, and sleep uninterrupted for a few extra days before my 2 months of sleep deprivation started.  What a gift to look back and see how active God was, both in and through this situation.  We had wonderful nurses.  We had wonderful and skillful doctors- that I was able to understand after the first night!  We live close to the hospital and going back and forth was easy.  We had meals provided to us by our church family.  We had family with us for the entire first month of Eli's life.  We had people all over the U.S. praying for us and our sweet boy through the powers of facebook and prayer chains.  Even in the midst of weakness, anger, hurt, chaos and uncertainty- God is good.  It's in the calm after the storm when God sends His rainbow so you can look back and see the beauty that the storm brought forth. 

Out of Control, The "NICU Normal" - Part 1

I am a planner.  I like to know what's going to happen and when, and if I can't, I like to be able to at least plan for the unknown and various situations.  Things being out of control makes the hair go up on the back of my neck.  It's chaos, and as a planner, chaos is both a pet peeve and a frightening concept.  None the less, things are often out of control and despite my best efforts of planning for all scenarios I am still caught off guard more often than I care to admit. Like most parents awaiting their little bundle of joys' arrival, Rob and I didn't want to think of the possibility of a NICU baby, and therefore we didn't.  I can remember going for our hospital tour and passing by the NICU thinking, we won't have to worry about that, and swallowing that twinge of fear that we would.  It was one scenario I didn't want to plan for.  

     Eli's arrival was to be a scheduled c-section due to my pacemaker.  (Later we found out he was breech and would require a c-section anyway). I was not a high risk pregnancy but was a high risk delivery due to the stress of labor on the heart.  Despite the fact that my pacemaker fixes my heart problem, my doctors felt it better not to risk stressing the pacemaker and causing that to malfunction.  Part of me was bothered by this because I never thought about giving birth in any way other than naturally, but the planner in me was thrilled.  I would know exactly when my baby was coming, get the doctor I wanted for the delivery, would have everything in the house ready for him to come home, and our parents who are both from NY would definitely be there in time to see him right after he was born.  The pros outweighed the cons to this planning brain of mine.  My due date was 2/25, and my c-section was scheduled for 2/21, just a few days early to ensure I didn't go into labor.  I had planned to have my baby showers early so that I would be able to have all of his stuff put together, all of my diaper baskets for each floor and car ready for action, and his clothes washed and ready to wear.  One of my brothers, my mom and my friend Sam came to help me get organized and put things together while Rob was away for a youth group trip from 1/17-1/19.  On 1/20 I went to the chiropractor for my continuingly painful left hip and sciatica from pregnancy. We also went out for my little (who isn't really little) buddy Hunter's birthday.  On 1/21 I had a snow day from work and we used that time to finally finish Eli's room.  Everything was ready, I was happy and I had a month to relax before my little man's arrival!  Little did I know that a few short hours later, my plans would be foiled.

     Rob and I are both stubborn. I like to joke that Rob's stubbornness is more of a desire to do the opposite of what you want him to while mine is more of a determination.  Either way you look at it, our son got both versions and we knew that well before he was born from watching him during ultrasounds and feeling, or rather not feeling, his activity when we were looking for it!  A few times I felt contractions and I would go pack my hospital bag to use the power of reverse psychology on him. Clearly they were just Braxton Hicks contractions but they went away as soon as that bag was packed, so I like to think my theory worked!   At 3am on 1/22 my theory was NOT working.  I had woken up to contractions about a half hour earlier, and tried to ignore them thinking they would go away.  They didn't.  I got out of bed and got my hospital bag packing lists (one for Eli's things and one for my own) which were sitting on my night stand and began packing my bags.  My contractions were still not letting up.  Knowing I was due to be at work early that morning, Rob had dug my car out from under the snow from the storm the previous day at around 10pm so it would be ready for me in the morning.  We were soon out the door and in the car on our way to the hospital.  The roads were slick with ice, and I was screaming in pain.  My nerves were getting the best of me.  I had not planned for this.  I was scared, in pain, excited, totally overwhelmed and all of a sudden very nauseous.  There was a cup of iced tea I had forgotten to bring in the house and quickly I rolled down the window, threw the iced tea out of the car and got sick in the cup.  Not the peaceful  or delightful ride to the hospital I had planned out for the morning of my c-section, THAT'S for sure!  We arrived at the ER doors in total disarray.  We were whisked back to Labor & Delivery.....with the car still running outside the ER (as I said, TOTAL disarray!).  Once we got back to where I needed to be, Rob ran back to park our car that we hoped hadn't been stolen (haha) while I was triaged.  It soon became evident that it may not have been my nerves getting the best of me, but instead it was a stomach virus.  When I was finally able to lay down to be hooked up to the baby monitor, my contractions had stopped.  I was not in labor, nothing was effaced or dilated.  My doctor, who was on call that night, theorized that my contractions were a result of my stomach bug.  I was sick, exhausted, freezing and embarrassed.  
The doctor decided to do an ultrasound to check on things anyway.  There was a lot of silence from what I remember as I drifted in an out of total blankness in my mind due to my exhaustion and focus on trying not to get sick during the ultrasound.  Eli was fine, but my amniotic fluid level was not.  They tried to make him move so they could remeasure fluid pockets, but he was playing his stubborn card.  Then they looked for practice breaths.  I didn't know what that meant but after a half hour of waiting, he wasn't doing that either.  The doctor decided that I would be admitted, and put on IV fluids for 24 hours to bring my fluid levels up.  He was hopeful that the level was low because of my being sick.  No reason for worry, Eli was fine, and his heartbeat was strong and happy as my doctor liked to say! (Little did he know what foreshadowing that was!) 24 hours later, my ultrasound revealed that things hadn't changed, and again, no practice breaths from Eli.  At this point I started to make plans for delivering Eli early.  I figured they would want to get us to at least 36 weeks, which was 5 days away.  We called our parents and told them that was a possibility.  I made a list of things I would need from home in case I needed to stay in the hospital, things I all of a sudden felt need to be done in preparation at home and I felt ready again.  I could be excited about the earlier arrival of my little one.  

    Another 24 hours later my next ultrasound also showed no change, but THIS time, Eli was showing off his practice breaths like a champ.  All seemed on track according to our plan for waiting until 36 weeks to deliver.  At about 10:15am, another doctor from my OB/GYN practice came in.  She apparently didn't know I already plan, and had one of her own (funny how doctors do that ;-) ). She told me that Eli was safer outside than he was on the inside.  She didn't see the need to wait until 36 weeks.  She couldn't send me home to wait because of the risk of Eli getting an injury, or worse, with my low fluid levels and clearly IV fluids weren't helping so there was no point in me staying in the hospital and waiting either.  She said "you're having that baby today!"  She was ready to wheel me off to get ready that second but I had already eaten, so I was scheduled for 3pm.  My mind went a thousand different directions- it was out of control! I looked at Rob and started crying and through my tears called my parents while he called his.   Everyone was in shock and didn't really now how to respond, but then again, neither did we.  All parents were on the road within a few hours.  They weren't going to make it for the birth but would at least make it that day.  I started with my lists again and sent Rob home to execute them and be back for pre-op.  I took a shower, blow dried my hair and started tidying up my room.  I was nesting in my hospital room that wouldn't even be mine after the delivery!  I couldn't sit still. The clock was ticking and I couldn't focus on one thing long enough to feel prepared.  Of course I was excited, but fear and chaos were filling my mind.  Despite the chaos, the only thought I truly remember was that I continued to brush off the idea of Eli being in the NICU.  I kept thinking that he was strong, he was practice breathing, he was ready.  I would hold my baby boy in a few hours.  

     At 3:40pm, to the tune of Fireworks, by Katy Perry, Eli John entered the world at 5lbs 6oz. 17.5inches long.  He came out crying like a champ!  It was good and strong.  I can still hear it when I close my eyes... Mostly because he does it almost every night at 3am!  In my drugged up state I remember hearing him cry and thinking that was a good sign.  I can remember the anesthesiologist telling me he looked like a good size baby, and that was a good sign to me too  I remember watching Rob's face brighten when he saw him for the first time.  I remember ripping off the arm strap  that the nurse was taking too long to take off when they brought him close to me so I could touch him.  I remember his color looked normal.  I remember Rob holding him....for less than 30 seconds....before he was whisked off to the NICU....

     Some of you may wonder why I had to tell you this part of the story to explain our NICU normal.  God continually showed us that despite things being out of control, they were only out of OUR control and were in HIS control every second of this journey.  The only way to truly show you this is by sharing the WHOLE story.   Due to the length of it, I'm going to stop here, and my next post will be part 2. Until then, I hope you take notice of the little details I included in this story because each of them were included for a reason. They were included because looking back, I see God in all of them.  Eli being breech was a better reason to give the insurance company who wouldn't cover elective c-section.  Everything was ready by the time Eli came, even though I thought I had more time.  Rob was back from the trip he took the weekend before.  My hip was feeling better because  of having just gone to the chiropractor, so I was able to walk to and from the NICU.  Rob had already cleared away the snow from the car so no time was wasted on doing that.  If I had started with the stomach virus symptoms before we left the house, I wouldn't have gone to the hospital.  I would have assumed that was what my pain was from instead of being from contractions.  If I hadn't gone to the hospital we wouldn't have known my fluid level was low which could have caused a lot of harm to Eli.  The silly iced tea cup was still in the car, and Rob didn't have to be worrying about how to get the smell of vomit out of the car.  My doctor was on call the night I went in, which helped to calm me down.  I hadn't eaten much in days, but actually ate breakfast that morning allowing me to have a few hours to "plan" and feel more ready rather than a few minutes.  Eli showed off his practice breaths exactly at the right time, had he been born a day earlier, the lung trouble he had (which you will hear about next time) would have been much more severe than it was, and had he been born a day later my fluid level would have been too low.  He was born at the right time, even though it wasn't because of my planning, it was perfect because it was God's planning.  

Freedom IN the Change

     Let's face it, change, isn't easy. It's difficult, it's uncomfortable, it's frustrating, and it's scary.  We go from what is familiar to something unknown. It's hard to let go of what was. We go through a phase where we want to go back to what we know.  There is an inner battle that we go through as we adjust to the change.  We can hold bitterness, resentment, fear, anger towards the change and the people who caused the change.  Sometimes the anticipation of a potential change causes these feelings and we don't allow the change to occur.  It doesn't matter whether it is good for us, or something that God is calling you to change about yourself, about your church, about a relationship or a whole plethora of other things.  We want what we know.  In our human-ness we get stuck.  We don't want to be uncomfortable or challenged.  BUT, if we embrace the change and choose to live IN it, our attitudes change and God reveals a whole new realm of possibilities and opportunities.  If we live IN the change, we are rewarded.
     We have been living in our new normal of Eli sans his "bucket" for a week now.  I would like to tell you that it was all amazing and joyous and easy for all of us to adjust, but it was not.  All of the things I just explained about my observations of change, I have witnessed and experienced first hand during this past week. 

     When Eli woke up from anesthesia after his cast removal, he was distraught.  He was inconsolable.  While some of this can be contributed to the disorientation caused by anesthesia, it was more about the fact that he was uncomfortable, in pain, cold, scared and confused.  He did not understand why one moment he was cozy (although stinky) in this contraption that had held him before, and now none of those feelings of being secure were there.  He didn't remember what freedom felt like and that he had actually lived like this for a short while already.  He was not excited like his mommy and daddy were for him to relearn what freedom was. 
     I tried to console him.  I tried different positions, feeding him, tried to make him smile or laugh- but nothing that used to work, was helping now.  I felt helpless. We both had an inner struggle of wanting back what was familiar, what we knew.  My baby wanted his cast back, and in that moment... I did too.  That was NOT something I expected.  I have been looking forward and counting down to this day since the day we were told he would need the cast.  How in the world could I possibly want to go back to that? I hated the cast.  I was happy that it would fix his hip, and I found joy in the situation but I did NOT like the cast.  

     For the next few days we had to relearn how to take care of Eli, and he had to relearn how to live in his new normal of freedom.  I loved that I could feel him breathing against me, and I could play with his legs and tickle his belly, but it was not all fun, games and excitement over the fact that my child could finally wear pants.  I struggled because I kept trying to do the things I did while Eli was in the cast.  I wasn't living IN the change.  Things that used to console him, or be comfortable for him, no longer were, yet I kept trying them and getting frustrated when they wouldn't work.  Eli was frustrated too.  He would startle and scare himself when he would move his leg, or when I would carry him, and he would get excited and wiggle but fall backwards a little because there was no cast to catch him.  He had to realize that the things he used to be able to do and even the things he couldn't do had changed.  We both had to start living IN our change in order for us to enjoy it and find our freedom. 

     That discovery and my decision to embrace it has made a world of difference.  Now we are enjoying our freedom.  We are enjoying the new opportunities, like going to the zoo, and in the pool.  We are enjoying the new possibilities for Eli like trying to roll over and having more tummy time where he can push with his back legs and strengthen them so he can eventually scoot, crawl and walk.  We have found our freedom in the change and are no longer longing for what was, but instead looking forward to what will be. 

http://youtu.be/CzUpQCzG8TQ

http://youtu.be/0jy-azGUV2o  (he started at the bottom of the mat)

http://youtu.be/eQF0Ooszoe0 (getting closer to rolling over!)

A New Normal

     "Normal" is defined as "The usual, average or typical state or condition".  I've discovered (with the help of a friend who gave me the phrase "new normal") that normal is relative.  My normal is not your normal.  Your normal is not my normal.  While reflecting on this concept I've also discovered that what is normal CHANGES.  Right now, I would define my normal as "married parenthood".  However, within that normal, my circumstances have changed my daily normal 5 times and counting.  Right now, I'll give you the general overview, and over the course of the next few weeks I'll tell you about each phase of our normal in more detail. 

     My son Eli was born at 35 weeks.  He was whisked off to the NICU after a few second reprieve of being held by his Daddy while I was cleaned up from my C-section.  In addition to the new normal of being a brand new parent, I was unexpectedly being thrown into the normal of a NICU mom.  This normal thankfully did not last as long as we were warned it might.  After a week, the next normal I encountered, and welcomed with open arms, was being a mom with a newborn at home.  This unfortunately only lasted 2 weeks.  At 3 weeks old, Eli was diagnosed with Bilateral Hip Dysplasia.  He went into a Pavlik Harness in an effort to correct his hips.  This was non-evasive and as "easy" a method could be to correct his hip issues. The harness was to remain on him 24 hours a day. I had just gotten the hang of being a new mom with a newborn and I was being thrown the curve ball of how to care for a newborn I was unable to cradle in my arms, pump his legs to relieve the gas pain he was struggling with, or change a diaper without him crying in pain and frustration.  This normal lasted for 3 weeks.  We (Eli, my husband and my self) were finally getting used to things when the doctor determined this method of treatment was NOT working and if left on longer could potentially do more damage than good.  The doctor explained to us that the next step for treatment was called a closed hip reduction.  This procedure would be done under anesthesia, but was minimally evasive.  A dye would be injected into Eli's hips to highlight the socket and then his hips would be manipulated into place.  In order to allow the hips to solidify where they are supposed to be, a body cast called a Spica Cast would be placed and he would stay in it for 12 weeks.  Our 4th new normal was the 2 week reprieve we were granted free of the harness prior to having his procedure to place the body cast.  2 weeks to play with his toes, give him baths, do normal diaper changes, and have him wear ALL of his 3 month clothes he wouldn't be able to wear in the cast so I didn't feel stupid for having already taken off all the tags.  Once again we were just getting into a "normal" routine and it was time for Eli to be put into his cast.  I met this new normal with serious apprehension, and even more when the next complication with Eli's hips came to light.  During this procedure the Doctor discovered that Eli's right hip was MUCH worse than his left.  The right would need extensive surgery when Eli was closer to a year old and yet another body cast would be placed after that.  Eli came out of this procedure with a cast up to his arm pits and down his left leg.  This is the normal we have been living in for the past 12 weeks.  It presented more challenges than I ever imagined but it also brought more joy and lessons about resilience in the form of a sweet and smiley baby in a "bucket". 

     Tomorrow begins our 6th new normal.  Tomorrow Eli's cast comes off and we have a 6 month reprieve before his surgery and next cast.  I am beyond excited for this new normal.  Of course this will present its own challenges, as I have gotten used to my little one not being able to roll off the couch, changing table etc.  Seeing my son kick both legs, and wear pants, and being able to tickle his tummy and rub his back are so "insignificant" in the grand scheme of parenthood until you are unable to do them.  Tomorrow- that all changes.  Tomorrow, I'm going to change Eli's shorts every hour, pump his legs and watch him kick them. tickle and blow raspberries on his tummy every time I change his shorts, and rub his back and hold him close.  Tomorrow Eli is going to find me the most annoying Mommy in the world, and that's HIS new normal.