Wednesday, November 30, 2011

Birthday Boy

Today is yet another birthday milestone.
Today is not only Eli's three week birthday, but it is the day he was actually supposed to arrive.
My dad picked up a tiny cupcake to celebrate.
Eli celebrated with a bath.
His first sorta-real bath. He didn't seem to mind at all and enjoyed the water.
Eli is also celebrating today by finally having some eyebrows and eyelashes appear. Such a good boy.
We have even caught his dimple during a few fleeting smiles.
Happy the boys have matching dimples. Jackson is even excited to one day wear matching outfits. I plan to take advantage of this before he changes his mind. Jackson is so in love with his tiny brother. He loves to kiss the top of his head and I catch him breathing in his brother's scent. He is so happy to tell him all about Christmas.
In the meantime Eli's appointments are shaping up. Eli will have his echo cardiogram and chest x-ray at the end of the month as well as his SoonerStart evaluation. Hopefully all will go well.
Eli is still such a funny breather. It is hard to watch the spells and even harder to not stare at his chest/belly all day. I am trying to learn to trust him to right it himself. Most times he does, other times I just can't wait that long and have to give him a nudge.
He is still nursing like a champ and sleeps well ... during the day that is.
He is definitely one of those babies that spits up quite a bit/often but we are working on that and as always are open to any tips/advice.
His eyes are looking much whiter/less jaundice and are open for longer periods of time.
They are a beautiful shade of blue.
Happy birthday, baby.

Sunday, November 27, 2011

Thanksgiving

Thanksgiving has always been my most favorite holiday.
It's always been a time for family and reflection.
A time to be thankful for all of our blessings.
This year it has become even more so.
To have our baby home for the holiday, was the greatest blessing of all.
We are so lucky.
We were sad to not see all of our family over the holiday and kept sweet Stella in our hearts - sending thanksgiving prayers to Conway every day.
Since Eli can only handle a short time in the car seat we decided against the five hour drive to Arkansas. But we were so lucky to have my parents here helping us with everything. It made for a lovely holiday and mom managed to create a true Thanksgiving feast.
Eli has been doing well. He has been nursing frequently. We were instructed to nurse Eli on demand, which can make for a crazy schedule. But we are just thrilled that he wants to eat. Not all of it stays in, of course. He spits up a lot and he gets the hiccups all the time - numerous times a day, really. They say hiccups don't really bother a baby but I disagree. They make him spit up more, gurgle and choke - all things that just add to the craziness.
It has become apparent that we were spoiled by Jackson. Eli is not always an easy going baby. He has his fussy spells and particularly in the wee hours before dawn he just doesn't seem to know what he wants - sleep, eat, cramp, etc.
But it is my job to help him figure it out. It is exhausting, but a privilege considering there were so many nights I couldn't be there for him.
He still has episodes of what is called periodic breathing. He will have fairly lengthy spells where he starts to breathe very fast as if he is trying to catch his breath. It scares me every time and I can't stop staring at his belly moving up and down until the spell passes. The doctors explained that because of his rough start into the world he doesn't have any reserve in his lungs and that it will take time for him to rebuild his lung capacity.
We have been using a breathing/motion monitor that rests on Eli's diaper when he sleeps. If his movements stop for more than 20 seconds, it gives him a tiny vibration and if he doesn't respond to that it goes off.
It helps me sleep, too. Or at least helps me stare at him less.
I may make him wear it until he is 18.
We celebrated Eli's two week birthday on Wednesday. His belly button is healed. He is starting to stay awake a bit more and have moments where he is very alert. SoonerStart is to begin next week. I'm interested in learning how I can help Eli with some of his developmental issues - particularly a few of his reflexes.
I am planning on taking a picture of Eli on November 30 - his original due date. I'm interested to see what he would have looked like had things gone a little closer to the plan.
He seems to enjoy having so many birthday milestones. He gets that from his mother.
Besides if you came into the world with such difficulty I think you deserve a birthday cookie every Wednesday.
He coos and complains.
And we love to hear it all.
He is our thanksgiving.

Monday, November 21, 2011

Follow Up

Today was Eli's first doctor appointment after his NICU release.
He has gained a tiny bit of weight and is now 20 inches long. He was not thrilled about the cold stethoscope, but the doctor was able to get through his outburst. He is still a tiny bit jaundiced right now, but nothing abnormal.
While the doctor did not hear a heart murmur at this time, Eli will have a follow up echocardiogram in three months to see if the hole in his heart has closed. The hole should close naturally in time, but she wants to be totally sure due to his rough start. Hopefully, it will close on its own and it won't have to be surgically corrected.
Tomorrow, Eric and I will have to take the NICU's required CPR class. And in February, Eli will have his NICU follow up clinic where they will assess his developmental progress. We have started his PT exercises at home. He doesn't seem to mind them too much, but the pacifier really helps the overall process.
Jackson is positively thrilled to have his baby brother home. He is in charge of burp cloths and will dash to the nursery when you need one. He also loves when it is time to change a dirty diaper. He is front and center handing me a fresh diaper, desitin, clean outfit, etc. When Eli gets fussy, Jackson reassures him that "it's ok, your big brother is here, buddy."
For the past two days, we haven't been getting much sleep as Eli is supposed to eat every two hours.
I'm exhausted but could not be happier to have our family together.

Saturday, November 19, 2011

Introductions

Mama, why is Eli crying?

I'm not sure.

Is it because he doesn't know you are his new mama?

I don't really know.

Maybe you should tell him your name.

What do you mean?

Maybe you should tell him your name so he knows who you are. Tell him you are Amanda Houk-Copley and you're his mama.

Oh, ok. Eli my name is Amanda Houk-Copley and I am your new mama.

Friday, November 18, 2011

Friday

Where do I begin?
Maybe I'll start at the end.
Today, Eli came home.
Today our family is complete - all together under one roof.
When we arrived at the NICU this morning. Eli was in the middle of his car seat tolerance test. This is a 90 minute process where his vitals must remain stable. He did so well the first hour but his oxygen saturation level took a dip at the end of the test. So we had to wait for the doctor to approve his results.
In the meantime, Eli had to try to nurse again. Today, he only nursed for 5 minutes but they weighed him before and after eating and he had eaten 25mls in those few minutes. The lactation consultant was very pleased.
Next Eli had to have his PT assessment. He passed some areas but is having trouble with some reflexes. Not sure what is going on but the PT said there may be some developmental issues or nervous system issues. We will have to start weekly therapy and begin his PT work. Not sure what lies ahead for Eli, but we are ready to start therapy and get this boy caught up.
The doctor approved Eli's car seat test and suddenly I had to call Eric at work because we were about to be discharged.
I will be honest. I was so happy to take our boy home but I was terrified.
How can the NICU send home my baby? How will I be able to care for this baby that has been so very sick? How can I live without the monitors constantly telling me what his vitals are? If he cries, will his heartbeat go back to over 210 like it did before? What if he chokes? What if he stops breathing in his sleep? How can I ever sleep?
On the car ride home, he did have a little choke/stop breathing moment but I was riding in the backseat and gave him a little talking to. Eric chauffeured us and for me it was an excruciating 15 minutes. I kept watching for respiratory distress and realized that I would never be able to tell if he was turning blue because his entire outfit was blue. So did his skin just look blue? Was it normal? Or is that a little blue around his mouth?
Welcome to my mind.
Welcome to my whole new kind of crazy.
I wish your baby could come home with a free NICU nurse.
We were so lucky to have had such amazing care from the St. John's NICU nurses. They are truly angels in scrubs. I have so many stories to tell about how they helped us, held our hands, held up our hope and held our baby. Eric and I are forever grateful for them.
They saved our baby.
That and all the love, hope, energy and prayers surrounding him. Thank you so much for lifting up your hearts, your voices, your love and your energy for our boy and for our family.
Not sure if I will get much sleep tonight as I will be staring at Eli.
Staring because I will need to check for his tiny breaths every few minutes - staring at a baby I thought might never come home.
Staring with pure joy in my heart.

Friday

Yesterday, I got another chance to nurse Eli. He was able to nurse for nine minutes before tiring out. Definitely progress.
I am on my way to the NICU right now but when I called this morning they said he took 50mls of milk last night. His biggest meal yet.
We also had his first physical therapy session yesterday. He will have to continue pt for a while considering he was early and was sedated for so long. It really tires him out and I hate making him do these exercises but I know he needs them.
He also has gained a tiny bit of weight.
They will weigh him again this morning and we will see if he is using his all of his food.

Wednesday, November 16, 2011

Wednesday

Once again, Eli is full of surprises.
Today was his one week birthday, yet he was passing out the gifts.
This morning they removed the cannula forcing air into his nose. So far he has not needed it back and is breathing room air. His breaths per minute remain unstable and he still has episodes where he stops breathing. But we are so proud of his progress we will cut him some slack.
The NICU offered us another surprise this morning when they told me I could try to nurse Eli.
How can I explain what it meant to me to be able to nourish my sick baby? To provide for him? I simply can't express the joy.
Of course the lactation consultant said it would have to be brief, but I was still thrilled. He did so well and nursed for four minutes. It was four amazing moments that during our darkest times I thought would never happen.
He had a little choking difficulty afterward, but we will keep practicing. The nurses were mostly just pleased he didn't tire out during the brief session.
Later this evening, Eric was also given a chance to feed Eli his 8 pm bottle of milk. Their first meal together......I'll let Eric explain....


Every time I see him he looks better, the room looks better. You don't notice the room at first. First you just notice him, and it takes my breath every time - just for a second, but it's audible. It doesn't matter if it's been an hour or a day later. After the initial shock of his equipment wears off, you start to notice that gradually there are fewer machines surrounding him, fewer tubes coming out of him, fewer cannon sized syringes being fed into him from green faced machines. He still has his IV placed in his scalp and his monitors tracking all of his vitals, but his improvements over the past 24 hours have transformed his room.
Every time the machines become less, he becomes more.
Today was special.
I could see his perfect little face with no vent strapping him down, no feeding tube blocking my view, nothing major keeping me from holding my son. Now we are getting to what I know how to do. Although I consider myself pretty smart, I tire and know nothing of these milliliters and grams, straps and protocols. Just give me a blanket and a bottle, and I can tame a baby into submission.
So I was not hesitant to hold this baby, Jack long ago beat that out of me, instead I just reached in and swooped him out. Something I desperately wanted to do his first night in the NICU - just instinctively grab my baby and run.
But tonight I held him up to my chest and just breathed.
Probably for the first time in a week.
Eli started rooting. He was hungry. I mean really hungry. Like "I just got voted off the island" hungry. This dinky little 30mls wasn't going to cut it. He knew it. I knew it. He stared at me the whole time and sucked down dinner as if he had straw instead of a nipple. It took less than a minute. I threw him up on my shoulder and proceeded to expel all the demons from him with a series of hearty back slaps. Amanda looked a little worried but Eli loved it and talked the whole time. Now this stuff is what I know. Two burbs later, we are reswaddled and ready for relaxing.
I knew if we could just get him to this point, we might be okay.
It's hard to keep this faith when you are watching strangers pour liquid into your newborn's lungs and suck it back out strangling his cries of protest.
You helped me do it.
Your prayers, your concern, your hope is getting my family though this and I cannot thank you enough.
Now I have to ask for more.
A lot more.
My baby sister needs you, all of you more than ever.
Stella's cancer is growing and it has to stop. I can hear her tiny Tinker Bell voice saying " I love you Uncle Eric!"
She is too sweet and so it ends here and now.
Our faith will win this time.
Eric

Tuesday, November 15, 2011

Tuesday

Today was a very special day.
There were many tiny NICU milestones. First, Eli's heated bed was turned off to see if he could regulate his own temperature. He was able to do so all morning so they decided he was ready to move to a bassinet. Also, now that he is controlling his own temperature, today was the first day he could wear a tiny tee, socks and be wrapped in a blanket.
These are such simple things, I know. But to see him in these things is so comforting to me. Instead of a sedated, unclothed baby covered in painful looking wires and tubes, he is beginning to look more comforted.
They started the regular feeds again this morning. He is only eating 5ml at a time. And while he isn't using everything he is given, so far they have not pulled any more blood from his stomach. So maybe his system is starting to learn to digest a tiny bit. We will find out more tomorrow. They are taking it very slowly.
He is still on a bit of oxygen to help his air flow. He hasn't mastered his breaths per minute as they are all over the place, but he continues to work hard at capturing those breaths.
His body is still trying to get to know this crazy place.
But the most amazing moment happened when they told me they would be switching Eli's bed this morning. They asked me if during the switch would I like to hold my baby.
Can you imagine?
Did I want to hold this baby?
It was the most incredible feeling in the world.
Even though his little body was so full of wires and cords and tubes, they brought him over to me and placed him on my chest. With his tiny fist over my collar bone and his little ear resting over my heart, he snuggled in and it was as if we had never been apart. I could feel his little breaths and hear his soft mews. I held him for an hour. It wore him out, but the nurse noted how stabilized his vitals were when skin to skin. I will forever be grateful to her for handing me my son for the first time.
Later this evening we decided it was time for Jackson to meet his brother. We wanted to wait until Eli was more stable and his machinery looked less scary, but the hospital has a strict policy that children are welcome to visit the NICU until the first RSV case has been reported in the hospital. There were rumors that a RSV case was pending so we wanted to get Jackson up there before the policy was initiated for the rest of the season. This was the first time Jackson got to see his baby brother, since Eli had been whisked away after his birth.
Jackson handled it very well. He had several questions about Eli's machines and IV fluid but he never seemed apprehensive. He was excited to touch Eli, even if it was only the top of Eli's blanket. He got to see him open his eyes and was so happy to hear his tiny noises.
Eric then read a story to both of his boys.
It meant so much to have the family all together at last, if only for a few minutes.
While we are not out of the woods yet, it was the first time we felt like there was more good than bad.
I don't want to tempt fate but we wanted to share this moment with everyone to show you that your prayers and positive energy are working.
Your love and prayers are truly gifts.
It made this moment happen...



Thank you.

Keep sending your gifts of prayer to our sweet Stella Rose, too. Her treatment begins tomorrow. We are sending her and her parents prayers for strength and healing.

Monday, November 14, 2011

Monday

Eli has been hard at work.
At 5 this morning, they decided to start taking him off of the vent. Eric and I were terrified. It is hard to let go of a machine that has been keeping your baby alive. But the doctors explain that a vent, while helping you breathe, continues to bruise your lungs, so much so it will take more than a month to recover from a vent.
When we arrived at the NICU, he was still off the vent. A big accomplishment. As of this blog entry he is still off of the vent.
I must admit I waited to write this post as I am so afraid that at the end of these graphs, something bad will happen. Every time we walk into the NICU we steel ourselves for the worst. But so far today, Eli has been working hard. His tiny chest struggles with each breath but he is doing it. He is working those lungs. It looks like so much effort but he must learn.
We pray that Eli keeps up this hard work. He tires easily and once during his occupational therapy session he stopped breathing. After a gentle reminder from the OT, he jumpstarted himself but it was terrifying.
He is still on oxygen. And they had to stop feedings today as there has been blood in his stomach. They plan to start feedings again tomorrow and hopefully he will respond to it better. The doctors think this may be due to his body trying to handle everything that has been happening to his tiny body.
We have been told to minimize his stimulation and keep things quiet. But tonight was very special as I got to change his diaper. Hard to believe something I would normally be happy to have someone else do was the most precious moment of my day. They let me take his temp and soothe his forehead while he was weighed. He now weighs 6 lbs and 13 oz.
He was not happy to be moved to the scale and complained loudly.
Music to our ears.
Eric settled him down by reading him Seuss' Oh baby, the places you'll go. He seemed to respond to our voices as he has slowly started opening his eyes. It was very emotional to watch Eli listen to the ups and downs of the story.
We pray he keeps making these baby steps toward healing.
Miracles are happening every second in this NICU room.
We pray they keep happening for our two year old niece sweet Stella, as well. She is starting a difficult journey fighting brain cancer today. Please pray for these sick babies. Our family feels under siege right now.
Pray

Sunday, November 13, 2011

Sunday

Today I am being discharged from the hospital. Today we are going home without our baby. This is the hardest thing we have ever had to do. We take comfort knowing that Eli continues to get exceptional care and in knowing that we will be calling the NICU every 30 seconds.
Eli's numbers have remained the same which is good. In fact, it means the doctors were ready to start weaning various medicines.
Last night they began slowly weaning the two blood pressure medications. By this afternoon he is off the blood pressure medications.
They also decided to start weaning the nitric oxide. His level was at 20 and they began taking down the level by one every hour. At midnight he was at level 18 and the weaning was going well. By 6 a.m. however his blood gas came back and they decided to go back to the nitric level of 20.
This is the NICU roller coaster. The one step forward one step back dance.
Because this afternoon they wanted to try weaning the nitric again. His level has been taken down to 15. This may go back up again but right now we are happy to see this progress.
They are also starting to tweak his vent rate. The goal is to keep lowering his rate so that he will start to breathe on his own. They have also lowered his dose of sedation so that he wakes up a tiny bit more and can learn how to take over the use of his lungs. We hope Eli will take on some of his responsibilities.
These things have all happened in the last few hours. We are terrified that this is just the top of another roller coaster drop.
It is so hard to rejoice when darkness lurks.
Your joyful and loving words are what allows our hearts to soar if only for a stolen moment. Our minister, Father Cutter, came to Eli's room today to pray over his tiny body. We hope Eli can feel how much he is loved.
This feeling of helplessness is overwhelming. When you can't comfort your baby, can't touch your baby, and can't breathe for your baby, you are truly lost.
All we can do is pray. We feel your love and prayers. They are working.

Saturday, November 12, 2011

Saturday

Eli's numbers, machines, blood gases, pulse ox and oxygen rate have had no change.
We have been told this is a good thing. While there have been no major improvements...there have been no further deteriorations. This is how we get closer to stable.
The long term goal is to get him stable and then eventually wean him off his numerous medications and machines.
But for now, we focus on the fact that his information stayed the same throughout the night.
It is difficult to see him like this. Every time we visit him we want to scoop him up into our arms.
It is impossible to believe that I have yet to hold my baby.
But I know he is where he needs to be. Those machines are tiny miracles.
The nitric oxide is our miracle. We have even heard the NICU nurses refer to Eli as The Nitric Baby. So far it appears as though the nitric is working to relax his artery.
Our happiest moment came early this morning when we learned they had decided to start giving him small feeds of breast milk. We would like to think that this small connection will give him more strength and love to heal.
We continue to pray and hope for our sweet Eli.
It means so much to us to hear your encouraging words and prayers. We keep them close to our hearts during some of the darkest moments.

Friday, November 11, 2011

Eli Fletcher Copley

Things can change in an instant.
Our baby boy was born Nov 9 at 10:35. He weighed 7 pounds and 13 ounces. He arrived three weeks early. But appeared to have enough poundage for a safe delivery.
He arrived with quite a healthy cry. His healthy cry gave everyone a sigh of relief. We were thrilled to hear those healthy sounds. Eric stayed with him while the doctor finished my surgery.
We would all meet up in the recovery room.
When I was wheeled in to the recovery room, no one was there.
I was told Eli had to be taken to the special care nursery because he had started grunting to get the fluid out of his lungs.
Everyone remained positive.
After an hour the nurses came back to explain he was not absorbing the oxygen he was receiving and they bumped his intake. Eventually they would put him on a cpap.
He was taken to the NICU.
By the end of the night he was put on a ventilator.
Things can change in an instant.
That night he was monitored and it appeared he was going to be able to be weaned off the vent. More sighs of relief.
The next morning he took a turn for the worse.
We have been told that Eli has PPHN. Persistent pulmonary hypertension of the newborn.
Basically the blood vessels in his lungs are not dilating enough, limiting the amount of air pumped to the body.
They have begun to give him nitric oxide to help open those vessels. An echo cardiogram revealed his pulmonary artery is too constricted. The nitric will hopefully help relax this artery and help his body restore itself.
He is hooked up to many machines and is sedated to help limit his stress levels.
You can imagine this is a horrifying sight for us. But we remain focused that these things and the amazing staff at St. Johns are doing everything they can for Eli.
We are in for a long process but are trying to stay hopeful. We were living breath by breath. Now we are living hour to hour. These are the small steps that we must rejoice in.
Eli had a good night last night as there were no drastic changes. These are the things we focus on right now. Getting to stable.
We will update his progress here as much as we can.
Please pray for him to heal. Pray for his body to recover. Your positive energy and love are helping.
He is such a beautiful and amazing little boy. Pray for Eli.

Thursday, November 10, 2011

Eli

Our son Eli was born a few weeks early yesterday at 10:35a.m. He is 7'13". Sadly he is in the NICU and is fighting for each breath. It would mean a lot to us if you would send him some positive energy and say a prayer or two for him to get well.