4 months old

It's hard to believe that Thomas is 4 months old (and 11 pounds, 6 ounces). I remember so vividly the day he was born...the fear and anxiety. And it is so clear to see God's hand over that day and the days that have followed. Some have been more bumpy than others but it is very clear and reassuring to remember that this is the path that He chose for our family and T in particular. We have settled into life with 3 boys at home. I can get every up, fed, dressed and to school most days...although sometimes I look like I just rolled out of bed myself. Thomas is a pretty easy baby...easier than the other 2 boys were!

He recently began smiling- it's always nice to know that your baby actually sees you and can give a little back! I've been trying to capture a smile in a photo but have failed miserably.

We seem to be slowly checking out Thomas's whole body...one specialist at a time. Here is the latest on T's health:

1. Cardiology- we will go back the end of May to see if he will have the ballooning procedure. If they decide to do the procedure, it will likely happen late summer/early fall.
2. Nephrology- He has high blood pressure which is common in preemies. We will keep an eye on it but the doctor thought his kidneys were okay.
3. ENT- We went to the ear, nose, throat doctor on Monday and he scoped Thomas and saw that he has laryngomalacia. This is a floppy tissue/structure above his vocal folds. This is causing the "squeak" we have been hearing while he eats. It usually resolves by 12-18 months. However, it often causes difficulty eating in the meantime. This is what we have been seeing at home. So, we are keeping a close eye on his calories and are adding another night feeding (yea). I will keep taking him for weight checks just to be careful. Thankfully, even though we aren't getting in the target number of calories, he is still gaining weight! T will have an upper GI to see if he is having reflux episodes while eating also.

I'm getting pretty good at navigating Le Bonheur's clinics and carting a baby to doctor's offices. Thankful that Le Bonheur is just down the road.

Thanks for praying. I am trying to practice gratitude for all of this...some days (and nights) it is a struggle. But, we have much to be thankful for both in this life and in our Father's provision for the future. 

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.