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.