Thank you so much to Mike Olbinski Photography for capturing our first family portrait during our last day in the NICU. Lucas, Jill, and I are all home now, and it feels great!
Tomorrow is the big day! Tomorrow Jill and I will sleep at home for the first time since the night of March 19th. But tomorrow night will have one big difference from that cool spring March evening so many weeks ago – tomorrow we’ll have our miracle baby by our side!
There are so many emotions to the entire thing, it’s really just difficult to put into words. I think if I had to pick only one word it might be terrified, but that sort of short-term feeling leaves so many of the other bigger emotions out. Thankful. Excited. Hopeful. Relieved. Blessed. Those are probably all better words.
Jill and I had a great night last night rooming in with Lucas and everything went well. All his feedings went great. This morning we had a feeding that didn’t go as well. The compromise is that the docs are sending Lucas home with a portable heart monitor. It will allow us to monitor his heart rate while he eats which will help us have the peace of mind that we aren’t missing his other cues. Tonight we are spending another night rooming in with Lucas at the NICU and practicing with the take-home monitor.
Tomorrow is going to be insane. It has been a long road, but we already know it was worth it. Other notes:
- Lucas passed his car seat study. They put him in his car seat for 90 minutes while on the heart monitor to make sure his vitals stayed good. Lucas is barely big enough for his car seat. The buckles literally go from his crotch to his chin. It is both scary and super cute.
- Lucas got a visit from the WNBA Phoenix Mercury players today complete with cameras and TV crews. Lucas really hammed it up for the ladies. I was impressed by his suave nature. The players said it looked like Lucas was going to be tall. Kind of strange to be on the receiving end of this type of charitable visit, but it was really really fun and definitely lifted our spirits.
What a week! It was a week ago today that Lucas ate for the first time. The doctors started him on 10 ccs every 3 hours and he seemed like he wanted more. The next day it was 20 ccs, and the day after that 30 ccs. We knew his goal was 45 ccs – which he hit on Saturday. On Sunday, Lucas moved to on demand feeding and he started eating 55, 60, even 77 ccs. There is one constant with every nurse, resident, or neonatologist that sees Lucas – amazement. How could a baby that didn’t even have a connected esophagus a few weeks ago eat so vigorously? We’ve learned that usually it takes several weeks or even months to get most babies with an atresia to eat. In Lucas’s case, I’m pretty sure he would have taken a full bottle on the first day.
In fact, somewhat ironically, his vigorous eating is now his biggest issue. Lucas eats so fast in fact that he has difficulty breathing. Over the last few days, he has had a few spells where his heart rate drops dramatically (from 150 to 50-60) and his oxygen saturation drops with it (from 95%+ to 75% or so). Let me just say – looking at a blueish, limpish baby is definitely not a fun experience. There are two possible causes for this. The first is prematurity. Premature babies don’t always coordinate suck, swallow, and breath. Sometimes they only do two out of the three. Sometimes, preemies just “forget” to breath. If this is the case, Lucas will soon get much better with his feeds – after all, he’s only had a handful of days of practice with full feeds. The second possible reason for the heart rate and oxygen drops is that the repair on his esophagus is closing – something we are obviously praying is not the case. If this is the case, Lucas will probably continue getting worse with his feeds.
Now, we have a decision to make. It is a great “problem” to have, but it is very difficult decision. The docs just love how Lucas is doing. His arterial line is out, his chest tube is out, his feeding tube is out, his PICC line is out. He is pooping (a lot), peeing (usually when is diaper is off), and gaining weight (now 5 lbs 11 oz). Throughout the day, Lucas does great. The only time Lucas has any issues is during feeding, when we are watching him. And specifically because Lucas only has issues when we are watching him, the docs are letting us decide. If we want, if we are comfortable, we can take take Lucas home… tomorrow! If we are not comfortable, we can let Lucas stay in the NICU until he stops having drops in his heart rate… maybe that will be Monday or maybe weeks from now. It’s a big decision.
We’ve had a lot of big decisions over the past four months. A lot of things to worry about. A lot of times when the right thing to do wasn’t totally clear. The one thing we’ve learned through this struggle is the power of prayer. For me, asking God to take away my worry and give me peace has been the only thing that worked. And asking God to give us answers to the difficult questions is the only thing that has ever brought us any clarity.
Tonight, we are “rooming in.” St Joes has a special room in the NICU recently remodeled by the Phoenix Suns organization. It’s awesome – from the basketball court flooring to twinkling stars in the ceiling. Tonight, it is just Jill, Lucas, and I in this room – and only us. It’s a practice night. It’s handling our miracle baby by ourselves knowing that the safety of the incredible St Joe’s nurses are just outside the door. It’s our first night as parents. And if God answers our prayers once again, tomorrow will bring some clarity for our big decision. Is it time to go home?
Lucas is proving to be an impressive eater. He’s allowed to eat as much and as often as he wants. He’s enjoying 55 – 65 cc’s every 3 hours. I think Lucas has a goal of becoming the biggest baby in the NICU!
Another big day. This morning, Lucas passed his hearing test. The nurse told us the test could take 2 hours or more depending on if a baby is cranky or calm. Lucky for us, Lucas is a relaxed and happy baby. He completed the test in less than 3 minutes. In fact, we didn’t even realize the test was being performed. We thought the nurse would give us a heads up before it started. In the time it took me to take a few pictures, the test was done. Once again, he’s an A+ patient!
Lucas is handling the feedings extremely well. So, the doctors approved for him to eat as much as he wants. The normal recommended food dose is 45 cc’s every 3 hours. Lucas enjoys having 50 – 65 cc’s! Since his food intake and weight gain is holding strong, the doctors requested for his PICC line to be removed at 6pm. So exciting! We no longer have wires to avoid whenever we want to pick up or hold Lucas. We’re in heaven!
Today, we increased Lucas’s feedings to 45 cc’s every 3 hours. This is the end feeding goal. Yippee! Now we need to wait & see how his body handles the increased food. He is such a food lover! At the end of most feedings, he is still wiggling around and wanting more. This is one of the rare traits he gets from me. 🙂
I can’t resist sharing some adorable pictures from today of Lucas sleeping. These are the moments when I call him my “Snuggle Buggle”!
Bryan has done a phenomenal job creating & updating the blog! So, I better step up to the plate and make my 1st post. Here we go…Lucas is exceeding my wildest dreams! We are only 10 days out from the surgery and have accomplished all of the following:
– Chest tube removed.
– Feeding tube removed.
– Ventilator removed.
– Photo therapy removed.
– PICC line installed.
– Eating up to 40 cc’s of breast milk every 3 hours.
We received amazing news that Lucas tested negative for all syndromes and chromosomal issues. In addition, his heart, kidneys, brain, and all other organs are working perfectly. We feel so blessed that our only issue to overcome is the esophageal atresia which appears to be repaired!
Lucas has stolen our hearts! Going forward, his happiness & health comes before ours. We are going to raise him in a home with an abundance of love & happiness. We are so grateful for all of our blessings!!! Thank you for the continued prayers & support!
Super awesome! Dr. Graziano is really good at giving the news you want fast. This time the first thing she said to us was “Super Awesome!” His esophagus looked great and worked exactly how they wanted. No leaks. No stricture. It was the kind of news that immediately brought tears. We found out about Lucas’s esophageal atresia on Wednesday, Feburary 6th, and in the months since that day, we never really knew if Lucas would ever be able to eat. Now, we knew he could.
The doc went on to tell us that Lucas took the barium “like a champ.” She was clearly impressed by his unexpected skill. She previously had told us that they would probably need to inject the barium through his feeding tube and let the natural reflux that all TEF babies have bring the barium up to the anastomotic site for visualization. After all, Lucas never had a chance to practice drinking amniotic fluid in utero. If they needed to, the radiologist would also slowly back the barium filled feeding tube up the esophagus to get a better look. However, we told the doc that Lucas loved sucking on his pacifier, so they decided to give him a chance to just drink the barium straight from a bottle. Well, he was hungry for his first meal. In fact, he shocked us all when he not only drank the barium, but gulped it down so fast that he evidently took more than they really even needed for the test. The doctor joked that she hoped there was some nutritional value to the barium, because he got a full feedings worth.
Dr. Graziano then told us even more amazing news. In just a few short hours, they would let Lucas drink some breast milk for the time time. Our little miracle baby could finally eat.
Lucas always likes to have big events on Wednesdays. From the day we arrived at hospital, to his first big heart rate decelerations, to his pediatric surgery – all Wednesdays. Tomorrow is no exception. Tomorrow afternoon, we will try to get Lucas to drink for the first time. Unfortunately, it will not be breast milk, but rather an x-ray florescent like barium. The docs will then, in real time, watch his little esophagus glow, see how it looks, and see how it performs.
There are two key items they will be looking for. The first is leaks. If his esophagus leaks, test is over. We do nothing, wait another full week, and try the test again. If the repair still leaks a week from now, Lucas would probably end up with a G-tube until he was much, much older. So of course, we really don’t want any leaks! The second item they’ll look for is a stricture, especially at the anastomotic site (where they did the connection). This could require dilation, but I’m not sure when they would do that type of procedure.
So big prayers for Lucas’s big Wednesday tomorrow! No leaks!
Today at 11:06 a.m. Lucas turned 1 week old. Happy Birthday sweet miracle boy. We love you! 🙂
So much for baby steps… yesterday, Lucas took huge leaps! Since St Josephs is a teaching hospital, we have both residents and neonatologists here. When the docs do their rounds, the residents will sometimes give report to the neonatologists on the state of Lucas right in front of us. It is kind of like a scene from the TV show Grey’s Anatomy. This morning, the resident said, “Well you’re not going to believe this or recognize him, but this is Lucas Cox.Yesterday, Lucas went off phototheraphy, got a central PICC line placed, had his ventilator removed, and moved from a radiant warmer to a crib. Huge leaps!”
And after making huge leaps yesterday, it is no surprise that Lucas got to experience kangaroo care today. I’m not totally sure who enjoyed it more, but Lucas seemed to love it just as much as mommy. His heart rate went down and he was just really relaxed and sleepy while still oxygenating at or near 100%. It was awesome. Of course, mommy was over the moon getting the opportunity to hold our little boy skin-to-skin. Daddy is anxiously awaiting his turn and called dibs on the next round. 🙂
Well Lucas decided to go out in style on the 5th day of his life. He started maintaining his temperature on his own earlier today so the nurses moved him from a radiant warmer to a crib. The nurses refer to it as a Big Boy Bed. We also call it Milestone #2!
To go home, Lucas needs to breath on his own, be able to maintain his own temperature in an open crib, and eat and gain wait. Milestones #1 and #2 are now already complete! Of course, Milestone #3 – eating – should be a little more difficult for our little miracle, but at this point, I wouldn’t put anything past him. 🙂
Wow, Day 5 has been HUGE!
Milestone #1 compete! So just a few hours after that last post, Lucas said goodbye to his ventilator. It was pretty intense. I’m pretty sure Jill and I were holding our breath as Lucas began to breathe on his own for the first time post-surgery. And he loved it! He immediately seemed a lot more comfortable and his respiration rate and oxygen saturation never skipped a beat. It couldn’t have gone better.
One of the big concerns when removing the ventilator was keeping his feeding tube in place. Since his feeding tube goes down his esophagus past his surgical repair, it was very important that it not be disturbed. The issue, naturally, was that the ventilator and feeding tube initially share the same pathway. So, the nurses secured his feeding tube tightly before removing Lucas from the ventilator. Our primary nurse asked the docs what she should do if the feeding tube came out accidentally during extubation, to which the doc responded, “just don’t let it come out.” So, yes, Jill and I held our breath as we watched Lucas begin to breath, but the nurses here at St Josephs again demonstrated their exceptional skill in neonatal care and the process went flawlessly. And we are ecstatic!