The Long Awaited Cart

I have often heard the old saying anything worth having is worth waiting for.  I don't know who coined that cliche, but they must have had a child in the hospital.  A couple of weeks ago, I was so excited when the resident told me she had ordered the car seat test.  Several other pieces of the puzzle came together earlier than expected which had me convinced that we would be going home earlier than expected.  

That idea was quickly erased when I found out that Brinkley had failed his car seat test and would have to be retested a few days later.  More waiting!  Six weeks had already begun to feel like an eternity and this set back made me wonder if this was all a cruel joke.  (You would think that I had this waiting business down after waiting nearly three years to complete Reese's adoption.)

Sunday night Bryan and I settled in Brinkley's hospital room for our overnight observation.  Because of some issues that he had during the day he was hooked up to a special monitor for an overnight test.  That obnoxious monitor going off all night and the poor little guy crying most of the night left Mom and Dad with no sleep!  We anxiously waited for 10 am to come around so that the monitor would be disconnected.  That didn't happen and we waited until a little after noon.  

The car seat test was scheduled to be redone on Monday, but I waited and waited and they never came.  No going home on Monday, but I was certain that Tuesday would be the day.  Tuesday morning rolled around and so did more waiting.  I waited until lunch time for Brinkley to finally be retested in the car seat.  That lasted an hour and then I was told that it would take an hour to get the report and then a Dr would have to read the report.  I knew that the report was not going to be good and wondered what this would mean.  After a few more hours of waiting a Dr finally came to confirm my suspicions.  Brinkley had failed again!  We would need to get a car bed to take him home in.  The Dr didn't want to send us home quickly with something we had never dealt with so we would be waiting yet again.  

Wednesday morning I walked in to the room and found the illustrious car bed.  This was a first for us and Ms Charlotte, Brinkley's nurse.  I didn't waste anytime finding the manual and getting it prepared for our little fella.  After leaving the hospital for an appointment Bryan & I returned and were soon greeted by Ms Charlotte and the long awaited cart.  We quickly loaded up the cart and waited for the paperwork to be completed.  

Around 5pm Ms Charlotte returned with the paperwork and we loaded Brinkley onto the cart for our trip down the elevator!  To our surprise, our wait was not over.  We had quite a time getting the car bed installed and probably spent an hour in the loading zone at the hospital.  It was nearly 6:30pm before I pulled out of the hospital.  About 20 minutes later we made it home!  Walking through that door with my little champ certainly was a moment that made all that waiting worthwhile! 

Ms Charlotte helping us getting Brinkley loaded up

A Cart, An Elevator, and A Car Seat

This afternoon I made my way from Brinkley's room to the elevator.  I have been going up and down this elevator multiple times a day for six weeks now.  Many times I see people getting on the elevator pushing carts full of flowers and other things they have accumulated during their hospital stay.  Typically, I don't think much about those carts.  Today was different.  Today seeing those carts brought tears to my eyes.  

Today, there was something different about my trip down that elevator.  I wasn't just going to the cafeteria or just going to the parking lot to drive home.  Today I was going to get a car seat.  That car seat marks a HUGE step in our NICU journey.  

I don't know how things work in the newborn nursery, but in the NICU it is a major accomplishment to have the doctor tell you to bring the car seat in.  Before a baby can be discharged from the NICU they must pass the car seat test and heart patients must pass an additional car seat test specific to their condition.  The doctors order these tests for your final days in the NICU.  Final meaning last 2-4 days.  Around 12:30 this afternoon Dr. Oliver (our Resident) came in and asked me if I had a car seat because she was writing the order today for our tests.  We've been waiting six weeks to hear someone ask for a car seat.

Six weeks ago today Brinkley made his early entrance to this world.  Monday, October 15th, was the day he was expected to join us.  Next week will mark the day he comes HOME!!  It has been a long, exhausting, draining, overwhelming, and incredible six weeks.  We have met some wonderful medical professionals and families of other NICU babies along the way.  I will miss the sweet nurses who have embraced our family and loved our little red headed wonder like he was their own. (These ladies have become dear friends and will continue to be a part of our lives.)  It will be hard to get back to life outside of the NICU everyday (as crazy as that sounds).  As much as I will miss seeing my new friends, I can't wait to have sweet Brinkley home.

Today as I got on the elevator to get Brinkley's car seat those carts brought tears to my eyes. Tears of anticipation.  I couldn't help but think the next time I see one of those carts, it is very likely that Brinkley and his car seat will be on it!  

Success!

Yesterday Brinkley celebrated five weeks of life with his first surgery.  Around 11:30 am Bryan and I suited up and escorted our baby down to the OR.  Several members of the surgical team spoke to us and explained their part in the surgery.  Dr. Gates, the surgeon, talked with us last and told us to expect Brinkley to be with them for about an hour.  

Bryan and I went to the cafeteria for lunch and then to the NICU waiting room.  Eventually Dr Gates came into the room and told us that everything went great and that Brinkley had been moved back to his spot in NICU 1 to recover.  He told us that our nurse was finishing up somethings and would be in to get us soon.  After a short wait, a nurse came and escorted back to Brinkley's bedside.  

I must admit that it was a little hard to see my baby with an incision and a tube coming out of his belly.  The thing that is helping me to be strong is knowing that this means we are one HUGE step closer to having him home.  This tube is going to allow us to relax and let him do this in his time when he is ready.  

Wednesday the Lord sent me a little confirmation about our decision to get the G-tube.  For Brinkley's 9 am feeding I was not the least bit concerned about how much he took of the bottle.  I knew that bottle was no longer going to be holding my baby captive in the NICU.  Brinkley took all but 7 ml of that bottle.  That is the most he had taken in almost two weeks!  I was completely relaxed and apparently that helped him.  My hope is that this is an indication of how things may go at home.  

I will share more about this surgery in the week to come with pictures of the tube.  Hopefully this will be helpful to someone else that may be struggling with this decision also.  For now, here is a picture of my little bit relaxing before I left the hospital tonight.  

I'd say he looks pretty comfy!

Thank you for praying for Brinkley!  I had a huge peace that he was going to be just fine and I know that your prayers contributed to that.  Our Cardiologist, Dr. Rauniker, reminded us before surgery that Brinkley was in the hands of The Great Physician.  There is no better place I would want him to be!   

Surgery= Making Strides Toward Home

The last thing standing in our way of bringing Brinkley home is bottle feeding.  We had finally worked up to completing two bottles a day and then we progressed to trying three bottles.  Lets just say that three is not Brinkley's lucky number.  Not only did we increase the number of times we were trying to bottle feed, we also increased the volume.  It was a perfect storm and now we don't complete any bottles.  

Working with our team of doctors, nurses, and therapists we have tried some different things and nothing seems to be helping Brinkley finish his feedings.  The poor little guy tries his hardest, but he wears himself out and just can't last long enough.

I have known for some time that the next step would be a G-tube.  This is a feeding tube that goes directly to his stomach.  He currently has a NG-tube which goes from the nose to the stomach.  I was very hesitant about this type of tube and really did not want to go that route.  This weekend, one of the nurses took time to sit down with us and show us the tubes and how they work. Let's just say I got a new perspective and feel very differently about it now.  It is not nearly as scary or intimidating as I thought.  

It's a good thing that she calmed my fears because I was greeted by a Neonatologist yesterday morning who wanted to talk to me about scheduling the surgery to insert the tube.  Later in the day our Cardiologist came by and talked to me about the procedure and how it would effect things from his perspective.  He encouraged us to proceed with it as it will help Brinkley to grow and be stronger for our pending heart surgery.  

Today I met with our Resident and the Surgeon and Brinkley will be having surgery on Thursday morning.  Please pray for him (and us).  He will have to be put to sleep for the procedure and on a ventilator.  When he comes off the ventilator we can begin using the tube gradually over a few days.  During that time, the nurses will teach Bryan and I how to use and care for the tube.  We anticipate this to be a one to two week process and then we will finally be able to bring our baby home!  

We covet your prayers as any surgery is nerve racking, but it is even more so when it is your 5 week old 4 lb baby.  

I subscribe to a couple of daily reading plans on the app You Version.  One of them is 

called Parenting By Design and this was yesterday's reading:

Daniel 3:17-18
17If you throw us into the blazing furnace, the God we serve is able to save us from the furnace. He will save us from your power, O king. 18But even if God does not save us, we want you, O king, to know this: We will not serve your gods or worship the gold statue you have set up.

THE WITNESS OF FAITH

When Daniel's three friends were told to worship Nebuchadnezzar or be thrown into a blazing furnace, their response spoke volumes about their faith. Although they trusted that God could deliver them, they didn't know if that would be His will. No matter what happened, however, they wanted the king to know they were willing to endure anything before they denied their God.

Some parenting challenges will stretch our faith more than others. Even though He has the ability to deliver us, God may ask us to walk through some of these trials. When we affirm His goodness in the face of potential suffering, our faith shines in a powerful and authentic way.

Let your children and those around you see your faith in the way you respond to trials.

This was a big encouragement and challenge to me.  I pray that I can be strong like Shadrach, Meshach, and Abednego and that those who I meet on this journey wouldn't see me, but my faith.  May this also be a challenge for you as walk your journey.

A Better Day

If you couldn't tell from yesterday's post, I was a little discouraged and felt a bit defeated.  Well, today is a new day.  I had a break down this morning before I ever got out the door, so I was afraid it was going to be a long hard day again.  One thing that I have learned over the last few years is not to be afraid to be real and ask for help.  I am a very private person and don't often let on when things are bothering me.  I like to deal with things on my own, so telling someone that I need help is really hard for me.  

This morning I sent a text to a new friend that I met a few months ago who has a child with Down's.  Her husband is also a pastor, so we had a few things in common to help us make a connection.  I asked her to pray for me and told her that the last couple days have been hard.  We exchanged a few texts and I knew that she was lifting me up.  I received the last message from her as I was pulling in to the hospital parking deck.  It was like I got an instant confirmation of her prayers.  A lady was pulling out of a spot right in front of me.  That may not seem like much, but it was the boost that I needed to know that things were looking better for today.  (Generally at 9 am the deck is almost completely full and I have to park on the far other side.)

I walked into Brinkley's room and saw the nurse's log sheet for the day and saw that he was 4 lbs 12 oz.  Yesterday he had dropped down to 4 lbs 8 oz.  On top of that our primary nurse was back on duty.  (In NICU it is important to have a primary nurse, because she will spend time learning your baby.  Our two primaries know him and his signs as well as I do.) This set me up to be more hopeful about his feedings.  His 9 am bottle went ok, not spectacular, but ok.  The most encouraging thing was that he was very alert and "begging" for his noon bottle.  

Because of his heart condition (it tires him out quickly) we don't generally give him two bottles back to back, but Nurse Charlotte thought that we should try it since he seemed so ready.  That was a GOOD decision!  He took it so well and hardly had any left.  I am so thankful for Charlotte and Connie (our other nurse).  They love my little guy and want to help me help him succeed.  I am not afraid to admit that I don't know much about newborns and I know even less about a special needs preemie.  Thankfully, God has put these ladies in front of me that do know and want to enable me to take care of Brinkley myself.  

I plan to go back to the hospital to feed Brinkley at 9 pm.  My prayer is that I will leave tonight feeling successful and hopeful for tomorrow .  If my new friend's prayers (and the prayers of many others) have anything to do with it, I think I will leave knowing today was a successful day!

Being Real

I get several devotional emails each day.  This is one of them from this morning: 

today's verse from the New Living Translation

"Then Andrew brought Simon to meet Jesus. Looking intently at Simon, Jesus said, 'Your name is Simon, son of John—but you will be called Cephas' (which means 'Peter')." John 1:42 view in context encouragement for today Jesus looked at Simon and saw not only who he was then—"You are Simon, son of John"—but who he would be: Cephas—Peter—the rock upon which Jesus would build his church. Jesus looks at you and clearly sees not only who you are now, but who you will become in him. He himself calls that forth in you. —Diane Eble, author of Abundant Gifts: A Daybook of Grace-Filled Devotions When I read this it sparked my attention and I moved it to the folder where I save the devotions that I think will come in handy later.  Well, later came sooner than I thought. For the last month (literally), I have spent everyday at the hospital in the NICU.  This is not something that I would have ever imagined for myself, but right now I can't imagine anything else.  We are so blessed to be where we are.  The staff at Greenville Hospital are top notch and are taking excellent care of us.  That, however, doesn't make a month long hospital stay any easier. Some days Brinkley seems to be super baby and he makes huge leaps towards coming home.  Other days it seems like he is in a rut and we are never coming home.  I have tried my best to take the good and the bad in stride, but the last couple of days have been really hard.  I have been so frustrated and I just want to go hide in a corner and cry.   It has been really hard to keep it together. I know that our situation is nothing like most of the families around us in NICU.  Brinkley has never been struggling for his life or facing many of the challenges that so many of the babies are dealing with.  My heart breaks for those families and I am sure that they would gladly trade places with me.  Knowing that, I can't help but feel selfish for feeling the way that I do. It is such a helpless feeling to have my baby lying in that bed connected to the monitors and not be able to bring him home.  I can't even freely walk around with him, not around the room, not down the hall, not even to the nurses station when I have a question or need help with something.  It's hard to even feel like his mother when I don't really have any control over most of what happens to him.  I didn't choose his formula.  I didn't choose his feeding schedule.  I didn't choose his brand of diapers or wipes.  Most days I don't even get to choose his clothes.  It almost feels like I go in that room each day to simply babysit for the nurses. Right now we are waiting on him to be able to take all eight of his daily feedings by mouth before we can bring him home.  He had been taking two bottles a day and the other six feedings through a feeding tube.  This weekend he did so well with the two that we were able to move up to three.  He didn't do really well the first night with the extra one, but our nurses assured me that he would get it within a day or so.  I held back the tears and trusted them.  Yesterday his amount of formula was increased, today's feedings were even worse.  Not only is he not finishing the third bottle, he isn't finishing the other two either because of the volume increase. I was so sure that he would be coming home this time two weeks ago.  The goal of the doctors is to get him home by his due date, but that is a little less than two weeks away and I am not sure how realistic that is at this point.  My heart is breaking as I want my baby home, but also I want to stop the madness of trying to juggle life at home and life at the NICU.  I am so emotionally and physically drained when I get home that I am no good for anyone (especially not for taking care of my house). In the midst of my frustration I have thought about that devotion all day.  I have to keep reminding myself, that just like Jesus knew what was going to happen with Peter, he knows what is going to happen with Brinkley too.  No, I may not have any control over who or what he will become, but He does.  One day I will look at my sweet Brinkley and the difference that he has made in his world and know exactly why we are on this unexpected journey.