Home at last

Thomas has been home for over a week. He sleeps most of the time. His brothers were very interested in him at first, and helped a bit too much. But, the newness has already worn off and they often forget he is around until he starts crying. Thomas seems to be adjusting to life outside of the hospital fairly well. He still sleeps most of the time, which is good for everyone!

We will follow up with his cardiologist again in a  few weeks to see how his PDA (hole in heart) and pulmonary valve look. I hope they will give us an idea of what to expect in the next few months.

I'm doing my best to keep germy hands off of Thomas, as he is very susceptible to RSV and other respiratory viruses. That's a challenge since William has a constant runny nose!

But, we are so thankful to be together under one roof...and just in time for the holidays! God has been so good to us and has held all of us in his steadfast hands. Thankful that even the smallest of us are in his care!

 Many hands helping

 Katie, one of our favorite nurses on discharge day.

Happy to be at home!

Almost ready

We are so very close to discharging! It has been a long road...today is day 66. Thomas's nurses and doctors have taken such great care of him. Yet, I will be so ready to wave goodbye! Here is the quick update:
- Thomas's bottle feeding "light bulb" went off last week and he began taking his bottles without any trouble. 2 days ago he pulled his feeding tube out of his nose and it has been bottles only since then. Poor guy, I'm sure he was tired of that tube.
- he hit 6 pounds yesterday!
- They did another ECHO Monday. The PDA (hole in the heart) has not closed yet. But this actually might be working in our favor since they did see the pulmonary valve stenosis (which they didn't see last time). So in an abnormal way, the two are balancing out. We will see the cardiologist in a few weeks to discuss the long term plan.
- he has had high blood pressure the last few days which may be because he doesn't like the pressure cuff or could be related to the heart. Again, we will wait and see if cardiology want to give him anything for that.

So, unless something changes, we hope to be home tomorrow or Saturday! Thankful for God's mercy. Praying for his continued provision for us and Thomas. It will be a real delight to celebrate Jesus's birth with this baby in my arms.

Thomas

Today marks 36 days in the NICU. It feels like Thomas has become a resident. I'm an expert at scrubbing in, silencing alarms on monitors, finding supplies, unhooking his cords to hold him, etc. Not exactly the skills one usually gains with a newborn. The last week has felt very slow. Changes have been minimal...increasing his tube feedings by small amounts every few days. His weight gain has finally started to improve. Today he weighs 3 pounds, 11 ounces. He feels less fragile, or maybe I am just getting used to holding a 3 pound baby.

Today they began weaning him off of his heater. He has been in an isolette that is heated. Due to his weight gain, they decided to see if he is able to maintain his body temperature. So far so good. Today he put on clothes for the first time. While the preemie clothes still are huge, he looks pretty handsome.

I think they will begin some trials with bottle feeding in the next week or so. That will be our next big hurdle.

Thank you for thinking of us, praying for us and loving on our family. We are thankful that God continues to meet us where we are and give us grace and strength for each day.

3 weeks old

Thomas was 3 weeks old on the 26th. He continues to struggle with gaining weight. He surpassed his birth weight Wednesday (3 weeks old, 2 days) but was back down to 2 pounds 14 ounces yesterday. The roller coaster ride continues. He is still off of oxygen but has episodes of desaturations and tachypnea (fast heart rate). His goals in his room in the NICU say "rest and grow."

I find that some days it feels like he has been in the NICU for so long. Today is one of those days. I so badly wish for all of my boys to be home. One day soon...until then I will enjoy one in the morning and two boys in the afternoon.

I'm off to William's Halloween party, followed by James's soccer game. James claims that Halloween is his favorite holiday...hope the rain doesn't spoil the fun!

On the mend

Last week was a doozie. William came down with hand foot mouth, which is brutal. After about a week of crying, sleepless and no daycare, we are back to "normal." Thomas had a good week last week. His oxygen was removed early in the week. His growth continues to be slow. Today he's 3 weeks old and is almost back to birth weight. They have been adjusting the calories in his milk and the amount of milk hoping for the right combination to help him gain weight. Today he weighs 2 pounds, 12 ounces. The goal for the next 2-3 weeks is to gain weight and to slow his respiratory rate. But overall, he is doing great...thank you for praying! God has a plan for this little one and He is confident in his plan, even when we are not. I'm reminded everyday that God loves and cares for Thomas more than I do...I should always rest in that promise for all 3 of my boys.

"We went through fire and water, yet you brought us to a place of abundance."

pictures

 This is how I spend my mornings.

 He likes to sleep with his mouth open, like a little old man with no teeth.

One of his sweet night nurses (that I never see, only talk to on the phone) took this and had it waiting for me when I arrived the next day.

great ECHO report

We are so thankful and really amazed...the ECHO showed no pulmonary valve stenosis in his heart. As a friend reminded me when I said it was too good to be true, God is able to work miracles even in this tiny baby. We will monitor the pulmonary valve over the upcoming weeks and months but as of now, it is looking like they will not have to do anything to his heart.

So, Thomas is getting held for an hour and a half each morning by his mom. He continues to have an increase in feedings (through a tube, not from a bottle yet). His oxygen levels are holding steady. He continues to struggle to gain weight. As of today, he was 2 pounds 9 ounces.

Please continue to pray for progress for him. We are so grateful that he is stable and moving in the right direction. I know the road ahead is long. Pray for our little family as we are spread pretty thin between the NICU and home. I never feel fully present in either place.

I'll post pictures tomorrow. Thank you for praying for us, for loving us. We are clinging to His promises for each of our boys and for us. Thankful Thomas is in the hands of his loving Heavenly Father.

Update on Thomas

Here is a quick update on Thomas:
- he's a week old today
- he has started gaining weight back after losing weight most of the week. Still not back to birth weight
- his lines in his belly button were removed today so I was able to hold him for an hour today!
- he was never on the vent but is getting oxygen. They have been turning down how much he gets, and he has tolerated this well.
-He is up to 11cc per feeding (as of this morning)
- He had an ECHO of his heart this morning but we have not heard from the cardiologist.

 This is before his belly button lines were taken out.

Again, this was yesterday, before I could hold him.

I'll try to take better pictures tomorrow morning.

Thomas Clark Byrd

Last Sunday, Isaac and I enjoyed a quiet house as the boys were in Tupelo with their cousins. We read, lounged and enjoyed time together, even on bed rest. Around 7:30 PM, the house was quiet and they boys were asleep. I had another bleed and we called in the troops to stay with the boys while we went to the hospital...again. The doctors thought my irritable uterus might be causing the bleed and they decided to put me back on the magnesium. I took this like a death sentence...it was too fresh in my mind. So again, I battled "mag," as it is lovingly referred. The flu like symptoms, being bed ridden, the IVs, no food, etc. Isaac held my hand, read to me and talked me off the ledge many times. By Monday afternoon, neither of us had slept, showered or relaxed in almost 24 hours. Isaac was preparing to go home for a shower and to feed the dog when my contractions picked up (from 2 an hour to every 3-5 minutes) and I had a large, scary bleed. 30 minutes later I was being poked and prodded for THREE IV lines. A slew of doctors and nurses were prepping me for surgery. I was freaking out yet again, and Isaac was talking me off the ledge. Around 5 PM we were in the OR. There were at least 15 people present. Thomas Clark was born weighing almost 3 pounds at 28 weeks, 4 days. He squealed (not cried). I saw a blur of his blonde hair as he was wheeled to the NICU. Then Isaac and I waited and waited for my surgery to be completed. After 2 grueling hours, he was asked to leave to they could put me to sleep. The next thing I know, I wake up in the ICU. They tell me I had placenta accreta, a hysterectomy was completed, and I lost a lot of blood. I hurt all over. Apparently my face looked like a tomato (thankfully I didn't see this). And I began what has seemed like a slow recovery. I learned later that there was a group of friends, siblings, family in the lobby praying for me and for my baby boy during my surgery. I still don't know who was there but thank you. The week since that is a blur of headaches, recovery, and yet in the midst of that sweet time with my siblings, parents. Food and drinks have appeared out of nowhere. My boys have had a blast with cousins and grandparents...they are tired and out of sorts but happy. Thomas is stable and we are so thankful for that. Another post to follow about him. Thank you for praying...for feeding us, for checking on us, for loving us. We are weary in every way yet so thankful.

so thankful to be home

It's amazing what perspective you gain after spending over a week in the hospital. Bed rest at home is not easy, but it is a vast improvement over bed rest at the hospital. Mentally and emotionally I am so much more stable...I see my kids every morning and evening, I sleep in my own bed, I can look out my window and even venture outside to my lounge chair, the sound on my tv doesn't come from a remote control, I can take a long hot bath, I see my husband every day, I can read to my kids before bed and kiss them every morning. I realize that in the blink of an eye, I can and may be sent back to the hospital, so I am trying to count every day at home as a gift. I spend a lot of time obsessing over numbers (such as today is 42 days until 34 weeks and 56 days until 36 weeks). But, every day is a day closer to normal life (or at least normal life with a new baby).

So, what does one do with a day full of nothing: I've read 2 Harry Potter books and watched the first movie, I have watercolored (too bad to show you), I've crafted some Christmas ornaments (everyone will get one for Christmas), I've updated my address book, I've watched some less than edifying Netflix, I have an adult coloring book (thank you Jackie), I'm trying my hand at embroidery, I write thank you notes, I watch the news (although local news is very depressing), I listen to podcasts, I try to play with my kids from a horizontal position (which is a bit challenging).

There is an army of people who are feeding us, taking our kids to bowl, packing lunches, cleaning our house, washing clothes, and keeping me entertained! They are being the hands and feet of Jesus to our family-it is humbling but so good for us to lean on others. So, thank you!!

Magnatiles have been a big hit with James and we can build them from a lounging position

This is what you bed/bedside table look like when you are on bed rest: medicine, vitamins, sound machine, books, crafts, toys, water bottle...anything and everything within arm's reach. Not exactly the peaceful oasis but it works!

Here is the gift that you will all be getting for Christmas...and yes, it looks like a 2nd grader did it. I won't tell you how long it took me. Craftiness is not my gift.

Christ Methodist daycare has come to the rescue for William, letting him enroll mid year. He seems to love Ms. Tracey and is happy to go every day.

BEST news ever!

Yesterday started like any other day on hospital bed rest. They took my vitals, listened to the baby's heartbeat, gave me my line up of pills. One of the nurse practitioners from my high risk doctor's office stopped by and said she was going to ask the doctor about sending me home. She came back a few minutes later and said "sorry, he said he's too nervous about that placenta." Shockingly, I didn't cry, I was totally prepared for this since I'd been assured that I was there for the duration. I even made a paper chain (and it was really really long) counting down the days. My mom stopped by on her way out of town. My sister came in with crafting supplies, food and good company. Around 1:00, my "conservative" high risk doctor popped his head in and said "so, I'm sending you home." I was silent, thinking this was the meanest, most cruel practical joke EVER. But, he was serious. So 2 hours later, we packed up ALL of my junk, took the kid art off of the wall and we were headed home. I felt like it was a jail break and that they were going to come chasing after me at any moment.

So, last night James picked coming home to see me over soccer practice (which made me so happy) and we had dinner together as a family for the first time in almost 10 days. I read them books before bed, kissed them good night. We went to bed and woke up under the same roof. Isaac and I have had more than a 10 minute in passing conversation. I took a bath and slept in my own bed. Things are looking up today!

I'm trying to take every day home as a gift and an unexpected mercy, as I know another bleed is possible/likely and will mean no hope of going home until baby boy arrives. In the mean time, I'm enjoying the sound of chaos and little feet. We have a long way to go. But, it is good to be reminded that I am powerless, not in control. I can't make the days go faster, I can't take care of my kids, I can't stop bleeding or contractions, I can't make this baby or his heart develop...but my Father can. I'm reading the Psalms backwards as a countdown to 36 weeks (which is a lofty goal). Yesterday's was Psalm 63

Earnestly I seek you. My soul thirsts for you. My mouth will praise you with joyful lips...when I remember you upon my bed (kind of funny, right), and meditate on you in the watches of the night for you have been my help and in the shadow of your wings I will sing for joy. My soul clings to you, your right hand holds me.

the boys are back in town

William and James made their debut on the antepartum floor today. Thanks to my mother who drove them from Louisville to Memphis and straight to the hospital. Biggest attraction was the movable bed and the cabinets.

James decorated my room and jumped on the couch.

Thank you to dear friends who stocked me up on toys and crafts...the boys were well entertained. I fed them treats and sent them home sugared up. I have missed them so much and am sad that I can't tuck them in and wake up with them tomorrow. It's amazing how quickly the things that are mundane and a "hassle" can become the things you long for the most.

Grateful for hugs, sticky kisses (note the melted ice cream on William's shirt) and a little excitement.

MRI results

Late Monday night they did an MRI to determine if the placenta is attached to and/or growing outside of the uterine wall (it's called placenta accreta). So, yesterday I anxiously awaited the results and passed the time with various time killers (tv shows, podcasts, TED Talks, reading, and even trying my hand at calligraphy). The high risk doctor came in early last night and said that it doesn't show signs of growing outside of the uterus but it is "bulging" and they can't rule out that it's attached. So, while I am very thankful that I don't definitely have placeta accreta there is still a lot of unknown, which is hard for control freaks like me.

So, what's the plan? Take it day by day and week by week. There was a glimmer of hope that I might be able to go home if I don't have another bleed but it was only a glimmer. So, I'm trying to mentally prepare for 50 days here- that takes us to 34 weeks. So, any reading lists, computer tasks, tv shows, craft projects that can be done from bed...send them my way.

The boys come back to Memphis today and are coming to visit this afternoon. Please pray for me to not be an emotional wreck when they arrive and pray for them as they adjust to their new "normal."

If you need me, I'm in room 408 at Methodist Germantown. Come visit!

here we go again

As you can tell from scrolling through the archives, this blog has very intermittent activity. But, for the next few weeks, it should be back in action and here is why...
I found myself having a bit of dejavu Thursday as I quickly drove to Methodist Germantown and told Isaac to meet me there. I was admitted for bleeding and other pregnancy complications. It was all too familiar, almost exactly 5 years ago I was admitted for different complications during my pregnancy with James (see the last post). This time at only 26 weeks we had the same scary conversations with doctors about extreme preemies, NICU, and feared another very early delivery. After 3+ days of steroid shots, magnesium, countless needle sticks, and sleepless days and nights- things have slow down and stabilized. I was told that due to my placenta previa and its risks, I should settle in for the long haul...until delivery. So yesterday, Isaac stocked my mini-fridge, we began sorting out childcare, and I began to realize what this means for me and my family. So, I'm trying to find ways to occupy my time, my brian and my emotions. I'm letting go of what I thought I had control over (my kids, my schedule, my family's life) and I will learn to wait and to trust in new ways, to lean heavily on the community around us and to rest in my Father's love for me, this baby and my family. So here is where I will sit and wait...come visit me any time...I'll be here.