Saturday, June 20, 2015

What the Nicu robs

We have been home for 26 days, two days longer than our 24 day Nicu stay. A long, hard, emotional, and draining 24 days, over a month total away from home. As hard as it was we are so so thankful for all the staff at Lucille Packard Children's Hospital at Stanford. All of the nurses, doctors, surgeons, repository therapists, child life team, and social workers, went above and beyond for our family. We could never thank them enough.
Henry is doing so well now and I hope to write a future post about his birth and a more detailed description of our Nicu stay. But for now I'm going to process through what I feel tonight.
Tonight I feel robbed. I look at my seven week old and notice all the ways he has changed since birth. That biggest two being his size and weight. I am so happy and relieved that he is growing and gaining  but his newborniss is slowly leaving and I feel like I missed out on it. Yes I have been with him every day since he was born but those first 24 days were such a distraction and stress filled that I feel like I was robbed of his newborn days. We didn't get to bring him home and lay low in the house with newborn snuggles, and a quiet sleepy home. We didn't get to show him off right away to friends and family. Instead we sat on worn out rockers in a bright florescent room surrounded by other sick babies and beeping machines. There we sat staring at our baby missing those first days at home. I feel like I missed out. Like I sat there in that  rocker filled with worry while missing out on the joys of being home with my newborn. Maybe this is more of a fantasy. I know all moms miss those newborn stages but for me I just feel robbed of them. My baby is quickly growing and I long for him to stay little forever.

A Divine Encounter

It was a week after my family and I started living in a motor home. An amazing brand new gorgeous motor home. James parents bought it for future family trips and for our immediate need for housing down in Palo Alto. They drove it down for us  and took us to half moon bay for the weekend after my doctors appointments. We then camped out in a RV park about 20 minutes from the hospital, waiting for little boy to arrive. We were able to stay busy with family outings and this helped us to not miss home and all its cozy amenities so much.
What had really been amazing though is how God had shown up and reminded us that He has a plan and a purpose. On Monday I had a non stress test (nst) where they monitor baby's heart rate for 30 min. I had had several before so this was routine and I went alone while James stayed with Kareese. During this nst however baby's heart rate was pretty low so they ended up sending me down to labor and delivery for longer monitoring. As I waited in the hallway for the nurse to call in a bed I wasn't worried, it was weird, I just knew that everything was fine. At that point a woman sat down next to me and we could hear the nursing talking on the phone to labor and delivery, "yes I have a mom here who's baby has a suspected bowel blockage possibly due to Cystic fibrosis. Mom already has one child with cf. Today the baby's heart rate is low....." At that point the woman next to me leans over and says, "I don't mean to eavesdrop but is she talking about you?"
"Yeah" I reply with a slight laugh.
"The baby I am carrying has cf. We just found out and had my care transferred here."
We quickly ask each other questions back and forth, where we are from and how many kids we have, until the nurse takes me down stares. As I leave I give the woman my phone number and tell her to contact me later.
A few hours later as I'm sitting in l&d still on the monitor the woman texts me. I reply with a " yes it was so nice to meet you.....I will be praying your little one grows strong and healthy."
She responds.."it's crazy that you mentioned you were from Redding because my husband and I were LITERALLY JUST talking about making a trip up there to this awesome church."
BAM! I immediately realized why I was sitting in the l&d bed with a baby who's heart rate was normal..... For this divine meeting. What are the odds? Right!? It was definitely a divine meeting and I can't wait to build a friendship with my new cf mama friend!!
We have since ran into each other at the hospital and have continued to stay conected through this crazy season.  Its awlays so ecouraging when the Lord brings people into your life.
This momma, baby, and family are currently in the Nicu with other non cf related health concerns. Please be praying for this family. The Nicu is a tough place to spend your days.

Monday, March 9, 2015

As of Wednesday...

Last Wednesday James and I drove down to Stanford for three appointments related to this pregnancy.  The first was a level two ultra sound, then a meeting with a neonatologist, and finally an MRI.
During the ultra sound the radiologist confirmed the diagnosis of dilated bowels in baby Henry and labeled them as moderate to severe.  There are currently two significant sized blockages about 3x the size the bowel should be.  With the bowel being this distended it runs the risk of the bowel turning and twisting on itself.  There is also a risk of the bowel rupturing although the radiologist said this is "rare".  James and I don't like that word....rare.  To have a child with CF is rare, to have them born with a miconium ilius is even more have a second pregnancy just the same is RARE.  We don't know rare.
What really blew our minds and gave us peace after it sank in was that they would not induce the pregnancy at this stage if the bowel were to rupture. Wait, what!?  That's the total opposite of what we were told with Kareese.  The radiologist (Chief Radiologist of Pediatrics at Stanford, so I believe what he was saying) said that there is more of a risk to the baby to take him out this early than it is to leave him in.  He explained that the rupture would be contained, sterile, and that the bowels will even calcify and close off the rupture in time.  It would be more detrimental to have a very premature baby on our hands and then be dealing with bowel issues on top of that. Totally makes sense!!  Now if we are full term and the bowels become more swollen then it could be beneficial to induce then, like we did with Kareese to avoid a rupture.  With Kareese we were under the impression that if her bowels ruptured then she would go septic and it would be emergency surgery for both of us.
After that bit of encouraging news we met with a neonatologist and a neonatal nurse practitioner.  They gave us the run down of what possible care will look like for the baby after he is born.  There will be a Complex Care Team at the birth to asses the baby. If he is stable at birth we will get some bonding time, skin to skin, but no nursing. Then they will take him to the NICU where he will be placed on monitors and have an IV line placed through his umbilical cord, which is great because it is painless for babies there.  Then at that point surgery will probably asses him and come up with a plan for care.  If he is not stable at birth, a very distended stomach can put pressure on the lungs and make breathing hard or if he is throwing up bile then then they will have to take him right away to pump his stomach and get him comfortable.  In both situations though James will get to go and be with him the whole time.  This is giving me so much comfort because there were times that we weren't allowed to be in the room when they worked on our daughter Kareese.  The nurse practitioner then gave us a tour of labor and delivery and the NICU.
When the tour was over we rushed over to my MRI appointment.  I was tired and exhausted to begin with and almost didn't take the Valium the doctor had recommended me to take because I figured I would just sleep during the procedure.  The MRI tech encouraged me to take it as it would also help the baby to not move around as much.  So I took it because I did not want to have to do this again if they didn't get good images the first time. The MRI is able to capture more accurate images that the radiologists are then able to manipulate to get a better idea of what is going on inside.  I still freaked out in the MRI tunnel. Oh man it was awful and the emotions of the day almost sent me into a bit a break down.  But I held it together and the tech gave me special goggles to  watch a movie during the MRI.  So that was amazing!  All I could see was the movie, Confessions of a Shopaholic, and didn't have to think about being in a confined space.  Then I had an amazing nap while my husband drove us home in rush hour bay area traffic.
The following day the radiologist called to go over the result of the MRI.  It confirmed the size and distention of the bowels and showed lots of thick sludge like meconium in the bowels.  The images also revealed an under developed colon due to the lack of meconium to help stimulate growth and function.  At that point the radiologist hinted that surgery may be needed to remove the blockage but that pediatric surgery is who ultimately determines that.  
That was hard to hear and something I am still processing through...or not processing.  I'm a little bit exhausted emotionally.  It will be two weeks tomorrow since we stated this journey of knowing our baby has a blockage and I just don't want to talk about it or think about it.  It's scary and painful and I just don't want to go there some days.  There is also physically nothing I can really do but spend extra cuddle time with Kareese right now and just enjoy Henry moving around inside of me.  The next couple of months are going to be rough and I just can't live there yet, I know it's coming but for right now I'm just going to enjoy my messy living room and think about what to make for dinner.  Something easy because James and I have our second night of a marriage course we are taking.  This class has come at the perfect time, automatic date night and an opportunity to build our communication skills and reconnect before we enter this new season.
Before our trip to Stanford I woke up in the middle of the night, like I always do to go to the bathroom and had the song, Hope's Anthem, stuck in my head.  I hadn't heard it in a while but I know it was Gods way of reminding me that He's got this.
"My hope is in you, God.
I am steadfast, I will not be moved
I am anchored, never shaken
All my hope is in you"

I can sit and rest in today because I KNOW Hes got my tomorrow....

Friday, March 6, 2015

"They Should Just Adopt"

Driving home from our long day of meetings and tests at Stanford, my husband James looks over at me and says, "So...are we going to have more kids?"  We both kind of laugh and I reply, "uhh...I don't know..."
You see  years ago, like 5 -I know not long but trust me it feels more like a decade at times, James and I discussed how many children we wanted.  We always felt like three sounded like a good number.  It was never set in stone but 2 didn't feel right and 4 felt a little crazy. So we just went into life and parenthood with that number on our hearts.
After we had Kareese, parenthood quickly looked a lot different than what we had planned, hoped, dreamed of, or imagined.  Kareese was born with a meconium ileus (bowel blockage) and after no poop for two days was life flighted to UC Davis where she spent 8 days in the NICU on oral medication and enemas to break up the blockage, and they worked.  She was later diagnosed with CF and thus began this journey.....but that's a whole other blog post, or several!
Anyways back to parenthood.  No parenthood for us looked so different.  It hurts way more than we could have EVER imagined but it is also so much more joyful and fulfilling than I could ever put into words.
After we had Kareese we said, "Ok if our next baby has CF we might have to rethink this whole 3 kids thing."  CF is hard.  Watching your child take countless medication and do hours of therapy a day is not fun.  Its work, so much work.  But, watching your child grow and thrive is amazing.  Seeing her run, laugh, grow a nice little chubby belly is so fulfilling. Hearing people say, "Wow! she looks so healthy!" or, "She doesn't look sick."  Fills us with pride and a sense of accomplishment,  "Take that CF *fist punch*"  The joy far out weights the pain.
The last few days I have really been wrestling with this, "Why don't they just adopt" idea.  No one has said it to my face, I think they know better, but I have heard that some have made that comment and that is totally fine.  Yes to some extent maybe adoption would be easier, maybe the pain of parenthood would hurt less....but does it every hurt less?
Adoption is great, and so needed in our broken world and someday we may go down that road.  But that road will not be without pain.
For me, right now, choosing adoption looks like living in fear.  Its saying, "Whoa Lord, I don't know you got this.  I don't think you have a plan for my life or for my children.  I don't think you can do what you HAVE promised to we are going to try this instead."  Until the Lord calls us to adoption we will continue to have the babies God has called James and I to have.
If we lived in fear.  If we had chosen to NOT try to get pregnant again....we wouldn't be where we are now.  I wouldn't be writing this blog.  I wouldn't be growing a sweet little boy inside my womb.....inside, he is a part of me.  If I lived in fear I wouldn't feel his precious little hiccups throughout the day.  I wouldn't fall asleep every night to his rhythmic soft movement in my belly or wake up to his little bicycle kicks each morning.  If I lived in fear I wouldn't be feeling another soul growing inside of me, inside...we are one right now.
If I lived in fear I would be missing this opportunity for the Lord to show his love for my family.  I would miss all the ways He has provided for us and all the subtle ways He has been preparing us for this baby.
If I lived in fear......I would probably be able to skip over this sizable heart ache.  But I have been here before, two years ago exactly.  And friends, it is soooo worth it.  My babies are sooo worth it.  They bring so much joy and hope into this world.  They are changing lives and ushering in Gods love to this broken world.  There is beauty in the pain.  And I wouldn't give up this pain because I would be missing out on so much joy and beauty.  
None one knows the struggles each of us will face, the pain that lies ahead. The healthy babies with no genetic mutation who may fall ill.  But once you work through the pain the beauty and joy is so sweet!

For anyone not reading out story up to this point, I apologize. My blogs might be a little confusing.  I hope to add to "our story" and "about me" pages soon for more clarity!

Monday, March 2, 2015

We were not prepared for Tuesday

We were not prepared for Tuesday.....Tuesday started with so much hope and expectation, and ended with sorrow and heart break.  On Tuesday we had an ultra sound.  On Tuesday my ob found two loops of distended bowel in our sweet little baby boy...two.  Kareese was born with one.  He said two, he found two and that they were bigger than the one Kareese had.  We were numb, shocked, and couldn't believe what we were hearing.....this is not what we were expecting to hear.  
The Sunday before, during worship at church, I heard the Lord tell me that my sweet boy would have freedom from CF.  Freedom.  Loops of Distended bowel = miconium illius....that's not freedom, that's CF.  Did I hear wrong? No.  I have heard the Lord speak to me before and those promises came true.  What did freedom mean then?  I was lost and confused.
After the numbness and disbelief wore off I began to feel the Lord minister to me and remind me of who He is.  He reminded me that He has a plan, and a purpose for my children.  He knows their name.  He knows every hair on their head.  He knows when a cure will be found.  He KNOWS when healing will come.  He KNOWS when they will have freedom.  HE knows.  His promise I heard on Sunday is still true.  I took the word freedom literately and expected it to happen right now.  But I am beginning to realize that his promise of freedom was a reminder that He has a plan and He is in control.  It is my job to put my faith, hope, and trust in Him.  He saw us through this same situation once with Kareese and He can and WILL see us through it again.
Now with the Lord on my side I begin to plan and prep for the next 10 weeks of pregnancy and the journey that will follow....
I love Stanford. LOVE LOVE LOVE them. I was told to wait 72 hours for the referral to go through and to get a call from the Fetal Center.  I received a call within hours of them receiving my referral.  I talked with their patient coordinator at length and we set up a plan. Plans are great!  And at Stanford we are not the only patients they have ever seen with this like in my obs office.  This is everyday to them and they know what to do.
On Wednesday James and I will go down to Stanford for a stage two ultra sound, a meeting with a neonatologist, and then a possible MRI depending on the images they are able to get from the ultra sound.  Then later in the month we will meet with surgery (in case we have to go down that road) and the ob clinic.  We will probably have to relocate down there at 37/38 weeks of this pregnancy in order to deliver down there.  We will know more after Wednesday.
For those of you who don't know, a distended bowel/miconium illius is when the mucus in the bowels hardens the miconium and creates a blockage.  With Kareese we were able to avoid surgery and break up the blockage with a drug called mucomyst, which she still takes.  Cystic Fibrosis (CF) affects anything in the body that is lined with mucus, but mostly the lungs and digestive system.  CF mucus lacks salt so it becomes thick and sticky.
Please pray with us as we prepare for Wednesday.  We are praying that the blockage is gone and broken up.  We are praying for the perfect team to care for us and for housing to become available for us if we need it in May.
As I finish my first ever blog post "You Make Me Brave" by Bethel Music has begun playing:
"You make me brave
No fear can hinder now the promises you made"

Here we go...