Friday, December 30, 2011
Wednesday, December 28, 2011
To catch up, Eli had his SoonerStart assessment last week. It was quite a process and exhausted him (and me!).
While he has made a lot of progress physically, like being able to hold his head up when on his tummy, he still ended up qualifying for SoonerStart care. He does not display a few reflexes, particularly the walking reflex. While he did not track for them (he has for me at times at home) he did however show excellent hearing. They will begin coming to the house in January for therapy sessions. In the meantime, we are to start working on grasping, reaching out, smiling, tracking and more tummy time.
Eli also had an extra appointment last week at the pediatricians due to an infected tear duct and a herniated belly button.This kid cannot catch a break. On a positive note, while getting some drops for his eye the doctor and I discussed his spitting up and constant crying. She gave us a script for Axid to help with the reflux. We started it Friday night and so far it has seemed to help. He still spits up. A lot. But his moments of painful crying have become fewer while his sleeping has become less fitful. Hopefully we are on the right track digestively.
Thursday of last week, Eli had his follow up chest x-ray. We are happy to report that the radiologist and the cardiologist both said the x-ray looked clear. This was a huge relief for us, as Eli continues to make his soft grunting noises so we weren't sure how his lungs have been progressing.
Today was the big day though as Eli's follow up Echo was bright and early. He did so well during the procedure. He made me look foolish when I told the tech how fussy he was and of course he ended up dozing in and out the whole time like a perfect baby.
The cardiologist said that while one of the holes in his heart has closed on its own, the other remains. She said about 20% of people live with this kind of hole. It may still correct itself and we will have to continue to monitor it. In the meantime, according to our pediatrician, Eli can go about living a normal life. He cannot however, ever go scuba diving.
The cardiologist also noted a bright spot on one of his ventricles. She said this is a calcification most likely due to all of the IVs,tubes and catheters he had in the NICU.
Our pediatrician said that a calcification is basically a blood clot. She feels that Eli's body should be able to break down the clot on his own. This is what we are hoping for... and that the hole in his heart closes itself.
Thinking positively, the doctors said it does not effect his oxygen levels or functioning. So I feel like today has been a positive one. Eli's EKG looked good and we will continue to keep tabs on everything else.
We wrapped up the day with his two-month vaccinations. He now weighs 11 pounds and everything went as can be expected.
I told Eli it was ok to eat through his pain.
Hearing his cries, one would never have imagined this baby dealt with a diminished lung capacity. And while I wouldn't mind catching a few more hours of sleep, I sometimes catch myself smiling when his tiny face is pink with a raging cry because I know there was a time when he could make no sound at all.
Scream on, Eli.
Sunday, December 25, 2011
Monday, December 19, 2011
Monday, December 12, 2011
It takes a bit of convincing - but he does eventually sleep for a bit.
In the meantime, Eli is still spitting up a lot. He is quite fussy when it comes to eating. He is either not happy because he hasn't gotten enough, or he is grumpy because he is so uncomfortable until he spits up what seems like half of what he has just eaten. Then he is furious because now he is hungry again since half of breakfast is down his shirt. And so we start all over again. It is has been really hard to get him on any kind of schedule with this unpredictable mess.
Plus it is no fun to see your newborn so unhappy. This morning was the worst as he got so upset he spit up through his nose. Twice. Yuck.
Hopefully he will begin to outgrow this. We plan to bring it up at his next appointment at the end of the month. Reflux is something our niece and nephew both had so maybe it is our turn to deal with.
It makes for a lot of wardrobe changes - for everyone.
We try everything. Shorter meals, sitting up while eating, burping constantly, soothing white noise, vibrating bouncy seat, staying still after eating, swaying, patting, whiskey.....!
Today Eric is picking up a baby swing we found on craigslist in the hopes that this may help settle his tummy a bit more. He seems to respond to movement so hopefully this will help. He does settle once in the car for a few minutes. Getting in the car seat is not a happy thing - which I think is typical newborn. But once we get to the stop sign he has decided he might like this and begins to doze. Unfortunately we still can't drive anywhere more than a hour. After being in the seat for a while he started to choke again. I try to wait it out a bit - again hoping for self correction but he is not quite there yet.
The other night Eric had to work very late so Jackson snuggled in bed with me and Eli. Turns out he was a better helper in the night than Eric!
He would happily dash off for a diaper, an outfit change, another burp cloth (we go through several a day), etc. He loves to help and is always concerned about Eli.
When Eli cries, Jackson always asks me to tell Eli not to worry "big brother is here."
We are so lucky to have Eli home with us for the holidays. Our boys are the best gifts.
Wednesday, December 7, 2011
Tuesday, December 6, 2011
Mama, if Eli spits up or throws up you just call me at school. You just tell them at school what happened and they will come get me and I will come home to help, ok? You just call me.
My parents left Sunday morning and I made it until this afternoon before taking Eli to the doctor.
He has had some congestion and I swear I keep hearing him go back to making those tiny grunting sounds that he made when he was born and had such trouble breathing. Eric heard the grunting sound over the phone and I consider myself lucky to have a spouse that encouraged me to call the doctor instead of telling me I was imagining things (entirely possible we all know considering our situation).
So I took him in and the good news is that Eli is gaining weight. He is now 9 pounds. The bad news was that Eli probably does have a cold. However, the doctor decided to be extra cautious and take his pulse ox which was 98 - good news. Also at this time his lungs sound good - however since he is more susceptible to respiratory distress, the doctor wants to keep an eye on his little cold. As if I'm not keeping a crazy eye on him all the time anyway.
When my parents were here they really helped me control the crazy. I think I did pretty well making it almost three days before caving in. And the doctor agreed it is important to be overly cautious considering Eli's roller coaster ride.
When I am by myself with the baby I get nervous. His tiny grunts, or short breaths, or little pauses in breathing are magnified when alone. My parents were such an amazing help these past few weeks. It nearly broke my heart when they left Sunday. My dad had been taking Jackson to and from school, bringing back breakfast, helping with projects around the house, picking up tiny sweets to celebrate Eli's birthday milestones, taking Jackson to see Santa, driving me around before I got cleared to drive again and even getting us some scales so we could see if Eli was gaining weight.
My mother managed the household while I recovered physically and mentally. She cooked for every meal, cleaned the house, unpacked boxes, kept the laundry under control, got the groceries, got Jackson dressed and fed for school, helped get the Christmas decorations up, basically ran the house. The lists are endless. We miss them so much. Jackson keeps asking me why Mam and Grandad don't live with us anymore.
Most importantly they really helped me feel safe. Safe about Eli. It's comforting to be able to say to someone who has been around Eli if they think that soft noise is grunting, if he looks blue, if he is breathing ok, etc.
I know I could easily make myself crazy with all this baby business and I am working on trying to relax. I just need a little more time. Mostly I need Eli to get a little bigger. A little stronger. I feel like once he gets a bit bigger and maybe less fragile I will feel more relaxed. That's my plan anyway.... again here is where I am always open for advice...
Hopefully I will last longer than three days this go round. I don't think I can convince the doctor to allow for a weekly Eli appointment for the next year or so.
In the meantime, Eric and I are trying to get back to a sense of normal even though we are still unclear on what Eli's normal is or will be.
With everything that has been happening to our extended family right now, we just don't ever seem to reach normal. We are living at a heavily-emotional state. Not a healthy place in the long run.
My parents helped maintain that sense of normal- especially for me.
I really miss my mom and dad.
Wednesday, November 30, 2011
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
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
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
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
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.
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
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.
Tuesday, November 15, 2011
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...
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
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.
Sunday, November 13, 2011
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
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
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
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.
Friday, October 21, 2011
Thursday, October 20, 2011
(And when I put a tiny dab of alcohol on his skinned knee he then cries out: Oh no! It's poison! It's poison!)
Hey guys? I'm scared for my whole life! If you don't come up here right now, I am going to come down those stairs and call the cops!
Wednesday, October 19, 2011
It was as if Jackson had been waiting for four his whole life.
Monday, October 17, 2011
Saturday, October 15, 2011
Thursday, October 13, 2011
Dishtowels though. I have found all of those. Who knew we had so many dish towels?
So many things have happened since forever ago which is when I think I last posted.
The biggest item on the list is that we have moved.
It has been a long process of major decision making and worrying and waiting and recalculating but in the end I think we have made the right decision.
We loved our little Midtown home.
It was just right for us and in a great location to all of our friends and fun stuff happening in our area. Sure, it was going to be a bit tighter with the baby on the way, but we thought maybe we could make do.
But now Jackson is approaching school age and we began to consider our options, districts, transfers, etc. They didn't look so good.
And then there was the high-speed traffic cruising through the neighborhood. Again, Jackson is riding his bike and gaining more independence. Not a good mix.
It was agonizing to decide what to do. Do we wait until the baby arrives? Do we rush and get it done prior? Do we stay and muddle through? Do we move and enter a whole new world? Away from town and our friends?
But we realized: safety, school and size. We needed to relocate.
We thought we would just see what would happen if we put the house on the market. Buy us a little time to think things over.
"Let's just see," we said.
11 days later the house was sold.
"Oh, shit," we said.
So the search was on and once we found the house we eventually moved into, we knew we were on the right path. As anyone who has dealt with real estate knows, there are always bumps and set backs along the way, but eventually things fell into place and before I knew it my mother arrived with zip loc baggies, rubber bands, packing tape and a sharpie.
Our lives were boxed up and ready to go.
The new house has a large backyard, sits safely in a cul-de-sac and is in an excellent school district.
Although Jackson is most pleased about his new bunk bed. In fact after we set it up, he would go to check on it every few hours just to make sure it was still there being fabulous.
Now we begin unpacking and settling in.
Hopefully we will have the crib together soon as a whole other countdown begins...
Sunday, September 11, 2011
Saturday, July 30, 2011
Thursday, July 28, 2011
Amanda: You know, with just your forearms.
Jackson: No mama! Daddy doesn't have four arms, he has two!
Tuesday, July 26, 2011
One of the things I love about Jackson is his dedication. He works to finish a job.
Not only does he love to be helpful and is thrilled to participate in yard work, house cleaning, etc. But he also knows how to commit to a theme.
When his school called for it to be Cowboy Day the boy wants to be 100% authentic. He wanted to wear jeans and really deck out in the western wear. But I had to convince him that the 105 degree temperatures just don't agree with the theme de jour. So he settled for shorts and a neck tie.
But what really warms my heart is that at the end of the day when I came to collect him from school my boy is not only sweaty, tuckered out and romping around in the gym in his cowboy boots, but he still has on his 10-gallon white cowboy hat.
Dedicated to the end.
If there is one shared gene that Eric and are sure to have passed on, it is Theme-Commitment.
Sunday, July 24, 2011
Mama God makes people. Not you and Daddy.
You don’t put all those parts together in there to make someone. God makes someone.
So who made God and Jesus?
Uh … well ... let’s call your godfather.
Yeah, ‘cause he’s like God.
Well, no … but this is why I hired him.
Monday, July 18, 2011
I've thought about how to put it all into words and sometimes it is too daunting to even approach. I relive some of it every day.
The sadness, the procedures, the beginning of beginnings. But it is too draining to locate and pluck out just the right words.
So I realized the best way to sum up the last year would be through the retelling of a conversation I had with Jackson on a car ride back from Fort Smith.
We had just visited Eric's parents for Memorial Day weekend. On the way back, it became apparent to us that Jackson had been listening to some of our grown-up conversations because the conversation started like this:
Mama, you're not pregnant. You have to have a baby in there to be pregnant.
But I am pregnant.
No, you just ate a lot.
No, there is a baby in there.
Yes. But what if I told you there was a another baby? That we are trying again with another baby?
A new baby?!!
A new baby in there?!!
Can I touch it?
Mama, I gave your baby a kiss.
You are such a sweet boy.
Mama, I hope this works out better. You better get lots of sleep and eat all your vegetables because that baby is hungry.
Sunday, July 17, 2011
Saturday, July 16, 2011
Do you think you are going to have a little sister or a little brother?
A little brother.
Well, you're right! It's a boy.
When can I see the baby?
Would you like to see the pictures?
Yes. ... How come you can see his penis?
Because the picture shows everything and that's how we find out if it is a boy or girl.
Where are his clothes?
He doesn't have any.
He is naked in there?!
Doesn't he get cold?
Friday, July 15, 2011
Thursday, July 14, 2011
I know. That's because people sometimes like to call you Jackson or Jack or JT or Jax.
So which one do you prefer? Jackson, Jack, JT, Jay, Jack-Jack, Jax?
Um .... I want to be called J-Man.
Wednesday, July 13, 2011
Tuesday, July 12, 2011
He disappeared only to return wearing his bicycle helmet.
Ready for kitchen duty:
Monday, July 11, 2011
Sunday, July 10, 2011
Thursday, June 23, 2011
Wednesday, June 22, 2011
Thursday, June 9, 2011
No, mama my listening ears broke and I had to order new ones and the package hasn't come in the mail yet.
Eric, did you hear me?
Are you listening to me?
Not really, but I think some of it got in anyway.
*That is the phrase they use at school.
Wednesday, June 8, 2011
Tuesday, May 31, 2011
And then when The Great Dane gets word and the passing along of information....it's just too much!
Makes me weepy every time.
Once, in my teens, when I was baby sitting a little girl during the summer, I took her to see the re-release of the movie in the theaters. During the Twilight Bark, she could barely contain herself and began to bark herself. Loudly.
Disney can be intense.
Friday, May 27, 2011
Thursday, May 26, 2011
Wednesday, May 25, 2011
Friday, May 20, 2011
I finished reading this about two weeks ago and it is still sitting with me. I still think about the characters and wonder how they are holding up. I worry about Dr. Stone's relationship with his son. And how is Marion's mother?
It is a story of Ethiopia's past while following twins born joined at head. Crazy, huh?
Family and friends work at the mission hospital and the author is able to transform medical procedures into poetry.
I'll stop there.
I almost hate giving a brief recap because a general overview actually makes the tale sound unappealing to me. In fact, when my mother recommended it to me I was all, "Meh."
Nothing about it made me want to start it.
I'm not really into African history and politics. And medical stuff? No way.
But I trust her recommendations. She knows my reading tastes.
So I picked it up and eventually could never put it down.
It was amazing.
Verghese is truly skilled at gently birthing each character from nothing. His simple writing techniques have you joining a character on a plane ride home and by the end of the flight you understand why she could never marry him and how complicated the relationship with her parents is.
Ethiopia's landscape and political duress also become characters of their own as does surgical procedures and cultural traditions.
You'll just have to trust me on this one.
It is a journey of a book.
Thursday, May 19, 2011
Wednesday, May 11, 2011
After a bit, a little girl arrived who was Jackson's age. In her little green and white striped bathing suit, she slowly ventured over to the slide.
Later, I turned away from grown-up discussions about crazy cats and book clubs, to see the two of them sitting alone together in a corner of the play area deep in conversation.
Her mother and I studied their body language and surmised they were comparing wounds.
With such serious faces, they were swapping injury stories. Jackson had some impressive scrapes from recently slipping out of a tree and she had acquired a few band aids on her knee from a tumble at school. They were like two tiny, water-soaked vets one-upping each other.
They talked until cake time. Only the promise of chocolate-chip ice cream and birthday cake could pry him away.
At the end of the party all the children had been fished out of the water and were crowding the picnic table getting dried off.
Jackson's new friend was sitting on the bench, her wet feet covered in clinging blades of grass.
He studied her speckled feet.
"I just LOVE your dirty feet," he proclaimed.
Thursday, May 5, 2011
We've noticed it has been happening little by little but over the weekend it solidified in to a true ability and it may just well be one of the greatest moments of my life.
Jackson can secure himself in and out his car seat completely by himself.
This is no small feat as my mother is still only 80% skilled at it.
These contraptions are not only so complicated and intricate, but require large amounts of dexterity and obscene wrist strength.
Plus he still dose not weigh enough to move into the simpler car seat designs, so we have been using the same car seat for quite some time.
So when Jackson finally informed me he can buckle up himself, a joyful tear or two slid down my cheek.
Wednesday, May 4, 2011
Tuesday, May 3, 2011
Monday, May 2, 2011
Saturday, April 30, 2011
Friday, April 29, 2011
Thursday, April 28, 2011
Wednesday, April 27, 2011
Thursday, April 14, 2011
Monday, April 11, 2011
Sunday, April 10, 2011
Saturday, April 9, 2011
Friday, April 8, 2011
Sunday, April 3, 2011
He has been working on it for a while.
While strumming his guitar in the living room, he began stringing together phrases he has picked up from various songs with what I think may be actual day-to-day experiences.
When I realized an actual song was formulating, I grabbed a pen and paper to jot down the finished product. What was even more hysterical, was that in between jam sessions he would walk over to peruse my notes and check the lyrics before starting over from the top again.
Unfortunately, I didn't get the finished product on video. I was too busy filling out his liner notes.
His title: Old Song Running Down the Road Turn the Page
When I came home,
You were here.
I love you.
Like a ball fell in my head.
Like a rock and roll.
Like a talking bowl.
I love you.
Saturday, April 2, 2011
Sunday, March 20, 2011
He knows every crack in the dirty sidewalks of Whineville.
Yes, I will admit this is an inherited trait.
My parents have regaled me with tales of my never-ending whining. So as the cycle continues, now it is my turn to hear the whiny-whine-whine that comes with snack requests, bedtime stalling, fears, don't-want-tos, etc.
Whining is the name of his game.
We tried some traditional tactics like pretending not to hear him when the first syllable whines its way out of his mouth. It worked sometimes but was really hit or miss. And his frustration from feeling as though he wasn't being heard would overcome any thoughts about actually stopping the whine.
So then we tried mapping out a plan and explaining thoroughly that "every time you whine, we are going to ignore it." He agreed. But again the strategy to de-whine the boy was never consistent.
There's been a load of compromising. It's almost as though he can't help it. He doesn't even realize he is doing it.
So during most whine-isodes I would just stop him and say "I can't understand you," until the whining would stop and the request would start again at a much better pace.
This was still hit or miss. And frankly not really fun for anyone.
So we have a new method.
Dare I even blog about it lest it jinx our wonderful new plan?
I have to.
Its awesomeness must be shared.
I'm not sure how it even came about, but one day we were listening to some music on youtube and Eric was just selecting a few oldies when he started to play a little of fellow-Arkansan Glen Campbell.
Suddenly the classic Rhinestone Cowboy song came belting into the room.
Jackson was memorized with the song.
What's not to like? Weird strolling cowboy, beautiful white horse, a rose-embroidered rodeo outfit and a chorus everyone loves to belt out.
And speaking of belting, we love to randomly belt out in song regularly in our house. Sometimes as a response in any conversation or sometimes for no reason at all.
Can you see where this is going?
After all that being silly and singing stuff, later in the evening Jackson began to request for something. I don't even know what it was because all I could hear was whinewhinywhine. So I broke into his sentence with a little: Like a rhinestone cowboy!
And suddenly the whining transformed itself into a normal conversation. He restarted his request with a normal tone.
It was like that white horse had just star-spangled its way into my kitchen and waved a magic wand.
I tested out my Glen-Campbell-hypothesis a few more times.
It worked. Every time.
The best part: I didn't have to be the bad guy.
Now, all I have to do is belt out a little Whinestone.
No whining and highly entertaining for myself.
Really a parenting win-win.
Who knew Glen was so good with kids?
Extra credit: How many Rhinestone Cowboy lyrics are in this post?
Friday, March 18, 2011
Yes, it's dead. Got too cold for it.
Yes. We'll have to pull it up.
Yeah. My friend Carlos's dad died.
Yup. He died.
Do you know what that means?
Yes ... What does it mean?
It means to be gone forever. So be careful saying that about people, ok? It's not nice to just toss around about people if it isn't true.
It's true. He died.
Ok then, how did he die?
He got killed.
Uh .... UPS?
Sidenote: Jackson has no friend named Carlos. He does however, have enemies in the postal industry.
Thursday, March 17, 2011
Once there was a boy who had asked me out many times but we were always in the wrong place: geographically and emotionally. So when things finally did get lined up I was excited to get this party started. He took me to a fancy spot for dinner. It was a Swiss-Italian restaurant that had an ever-changing menu.
During conversations at parties or over the phone or even through mail, we always clicked and shared the same interests and sense of humor so I felt this would be an evening of good conversation.
A major dating plus.
Things were off to a good start. Lots of chatting, Lots of witty repartee. He was polite, chivalrous yet smart and funny.
And then we perused the menu.
One seasonal menu item that sparked some dialogue was a meal of kangaroo.
Yes, Kanga. Roo.
I realize people around the globe eat kangaroo. But, I was dismayed. As an animal lover, I expressed distaste for such an item. While not a vegetarian, I thought the beastly choice was over the top.
I said as much.
My date laughed and began to tease about ordering the dish and so forth.
I really did not want to sit across from Miss Kanga and think about her baby Roo wandering the Outback alone.
I said as much.
This continued until the waiter arrived to take our order.
“May I take your order, sir?”
"Uh yes, I'll have ... The Roo," he said.
So yeah….it didn’t really work out.
Sunday, March 13, 2011
Saturday, March 12, 2011
Well ... I guess ... uh ... really, God made the whole body all together so he just added bottoms, too.
Yeah but how does he do it?
Like how does he make them? On a table or a floor or a rug or a couch or outside or on a porch?
Friday, March 11, 2011
While I love the overall message and the endearing characters, I'm not thrilled with the name calling.
But who doesn't love Toy Story? I swear, I cry every time we watch it.
I also love the fact that Jackson has a Woody cowboy (also from Niki and Tim) and a Buzz Lightyear (garage-sale find) that he pals around with.
The other night, while tucking Jackson in for bed I picked up Woody and tucked him under my arm to put away.
Jackson was most concerned.
"Mama! Woody does not like being in your armpit!"
Thursday, March 10, 2011
Wednesday, March 9, 2011
I really do.
But everybody knows some things just fly from your lips before your brain can calculate the damage. Especially in the middle of an elaborate tale or heated discussion.
Who doesn't love some colorful language every now and then?
We are, and have been, pretty careful around Jackson. So much so that really the only word he catches me with is "freakin'."
I say "catches" because Jackson has declared himself The Boss of Bad Words, The BBW.
The BBW runs a strict program. His tight regimen includes checking to ensure we aren't saying "weird" or "kill" or "dead" or "shoot" and so forth. It seems our efforts to keep him from name calling or using not-so-nice phrases with his friends has started to backfire.
However, when you get down to it, a three-year-old has so little power in the household, we allow The BBW his rule.
But I'm beginning to worry there has been a coup d'état.
The BBW is overtaking the county and he is wielding a bar of soap.
While I have mostly dropped the last remnants of my salty language, the other night after a lively birthday dinner I was regaling my mother-in-law with a tale or two and let it slip. It was a quiet slip - but those little ears are like bats picking up on the tiniest echos.
Immediately, after the bat-eared BBW busted me dropping the Shirley-Temple-side-of-the-F-bomb, the boss man went to work.
Mama! We don't say freaking.
You're right Jack. I shouldn't have said that.
Mama and Daddy, I am going to have to sleep in your bed tonight just to make sure you don't say any bad words in your sleep.
Monday, March 7, 2011
Wednesday, March 2, 2011
Monday, February 28, 2011
I am sitting on the far corner of the couch and you are curled up like a kitten on my chest. Still sleepy. Fresh from your afternoon nap, your mop of bedhead rests just under my chin, your arms at my sides. It is silent. We say nothing.
There is just holding. There is just being held.
Suddenly from the right, the setting sun bursts forth with its last call.
In its slow fall toward the horizon, it has slipped a step and stretches between the tree branches and through the blinds. Its last breath casts a warm glow across the whole room. It catches the top of your head. It cuffs you on the ear. It holds my hand on your back. It has captured something. Something I know that in seconds will disappear behind the tree branches. The ones already turning black in their Sunday-evening silhouettes.
And I realize this is it. I am still, but my heart races. I run my fingers through your hair, quickly before we lose the light. I watch the sun rifle through it like late-summer wheat. It is a race. How can I memorize every second? I can't. But I will not let this one escape. This is a moment to tuck into my locket. To keep forever. To revisit when you have left the nest.
It is all mine.
We explained that he may save his change and at the end of each month he may take one dollar from his treasure to purchase any item he would like from the Dollar Store. The rest will go into his own savings account at the bank. Each month it will start all over again.
He agreed to the deal and finally at the end of the month he carefully placed his quarters into a zip lock bag and carried them into the Dollar Store. You would have thought he had won a golden ticket to Willy Wonka's Chocolate Factory. He was practically giddy and could only just contain himself.
He danced into the store and right away he latched onto a bag of jelly beans before even glancing around and I had to intervene.
We decided to do a little browsing before making any heavy decisions. Eventually he became so overwhelmed by the shelves upon shelves of brightly-colored trinkets he had to ask me to hold his money so he could inspect everything.
He inspected yo-yos, tiny puzzles, cars, whistles, squirt guns, nets, bug houses, pool floaties and cans of silly string.
Every item was met with: "Ooooohhh! Mama! What is THIS!?"
Eventually, he settled on a device that shoots a tiny car and matching airplane into the air. He proudly stood in line and handed over his money.
It was quite an event.
Sunday, February 27, 2011
Saturday, February 26, 2011
(warning! spoiler alert!)
With nary a single contraction in the colorful dialogue, the movie stays so true to the book, we felt we had read the original piece afterwards.
The Dude skillfully brings it home one-eyed-Rooster style like nobody's business, and the Arkansas references made us smile even causing one audience member (not us) to audibly provide a Hogs shout out.
The horse dies; I sobbed.
We give this movie four out of five apostrophes.
Friday, February 25, 2011
Thursday, February 24, 2011
He said, "No, mama. I'm playing with my airplane right now."
So I playfully tossed the socks to him anyway.
Apparently during the time the socks left my hand and landed in Jackson's general direction, he became 13 years old.
He looked down at the socks now resting at his feet, then up at me and said:
"Really, mama? You're going to throw those socks at me? Really?"
Wednesday, February 23, 2011
Yes, you can have a few.
(quietly munching) Mama? How can I get these Skittles out of my belly?
Yes, how will they get out of my belly?
Well, I guess ... when ... you ... go to the bathroom? (I immediately regretted my answer as I instantly foresaw unsanitary fact-finding missions in the bathroom. But it was too late. The damage was done.)
There are Skittles in my poop!
No! I mean ... no. Not really. They are kind of ... well ...
Oh mama! I know! They're melted in my poop?
If I can't even handle a poop talk, how will I handle the birds and bees?
Tuesday, February 22, 2011
Saturday, February 19, 2011
Yes, I know.
When I grow up, can I be a construction man?
(sigh) Of course you can.
Mama, I want to be an engineer.
Oh yes, let's be that.
I want to be an engineer AND a giant excavator man.
Well, you can always have a double major.
Friday, February 18, 2011
Thursday, February 17, 2011
The other night while perusing the tiny cards, he slowly started to examine one in particular. I thought he was inspecting the mermaid floating across the top but instead he was studying the letters below.
"Mama!" he shouted. "This one is from Kelsey. Look it says 'Kelsey'."
"Let me see," I examine the pink and blue Valentine. "Why yes, it is from her. Jackson! Do you know what you just did?"
"You just READ her name," I shout, practically jumping up and down. "You were READING!"
There was a long pause while Jackson processed this new piece of information. Or at least I thought that's what he was doing, when he finally lifted his head from inspecting the card and with a big grin said...
What a weirdo.
Tuesday, February 15, 2011
We are grown-ups.
Eric and I now have yearly appointments to a dermatologist.
Being pale and freckled, I started going two years ago.
With weekends at the lake, visits to Gulf Shores, Ocean City, hanging at the pool and maybe even a few tanning beds (like maybe once before prom...ok twice...seven times....) I've collected plenty of sunburns in my portfolio of skin damage.
I stopped sunning ages ago, slap on the SPF and am as pale as the piles of snow we are still digging out of. I've tried to learn to embrace my paleness. But those rays from bygone days are catching up with me. So much so I had to have a few freckles removed. While they weren't unsightly, they were something to catch early.
But did it have to be Valentine’s Day weekend?
So for our romantic dinner that same night, we made reservations for three: Eric, Me and the band-aid slapped across my face.
And I'm not sure if it was the sheer thrill of being able to go to a restaurant that didn't have a kid menu, or the fact that Tulsa has begun to thaw, but I was giddy and emboldened to tattoo my blemish suitable for the holiday.
However, during Eric's first appointment I think he was giddy about being covered only by one of those ridiculous paper towels they provide you with. So much so, he immediately texted me a photo.
You know ... to get the Valentine's Day romance started.
Friday, February 11, 2011
But with this outrageously cold weather we have been having, I was getting a little worried about him and his home underneath the deck. And while he and Eric may disagree about who is actually in charge of the tomato garden during the summer months, it has been below zero for days and blizzard conditions for weeks now and I hated to think of him hungry and cold.
Sure enough, just after sunset, Peter was very grateful.
Monday, February 7, 2011
Friday, February 4, 2011
However, he had a blast.