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Showing posts from November, 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.
E…

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 sa…

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 …

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

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 a…

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

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 e…

Tuesday

Image
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…

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 remi…

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…

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 lik…

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 ve…

Eli

Amanda Houk-Copley 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.