I hope the close of this day left momma's feeling loved, pampered, and appreciated! You all deserve it. I feel very blessed to be surrounded by so many examples of beautiful moms, all different, but all amazing in their own special, God-gifted ways. In my family, the women are all headstrong, independent women. Dave's side is full of compassionate, tender-hearted women. Dave and I are grateful for our moms, grandmas, cousins, and aunts. To the ladies of our families: you are amazing, and we love you.
Now then, the babies.
Emmett and Owen have been very busy boys, making us a very busy family! Let's start with Owen.
This little guy continues to impress us with his tube-pulling and trouble-making. Both babies still have central lines for fluids and in case of emergencies, and Owen's line had nearly worn through. Luckily, we caught the wear-and-tear soon enough and a simple tube repair was the only preventive maintenance needed.
Owen's diet had to be adjusted because he is not gaining weight like he needs to. He's kind of skinny! They increased the quantity of his intake, which increased the caloric intake, so hopefully, he will pudge up like his brother. I think his activity level is preventing him from gaining weight - he's such a wiggle worm!
Owen has also begun Passy-Muir trials (speaking valve) and he is doing so great with them! I LOVE hearing him talk! And being the terrible momma that I am, I made him go from sitting up to laying down JUST SO I COULD HEAR HIM CRY!! Oh, my. We both cried - Owen from frustration, and me from the joy of hearing my baby after 8 1/2 months of silence. He has such a sweet little voice!
Owen's J-tube is giving us fits as it really doesn't want to stay in place, and it is continually pulling out just a little bit forget, then a little bit more, which has ME giving the nurses fits because I don't want it to become displaced. I am hoping that he doesn't come home with a fragile functional J-tube. I have a feeling hat if this is the case, we will be visiting the hospital frequently.
Now for Emmett.
Well, if you thought OWEN was a busy-body, just you wait.
When we arrived at OCH, Emmett had pseudomonas (a bacterial infection, not uncommon to hospital setting) but it was treated, and he began doing better. Soon after he started Passy-Muir trials, but has not tolerated these trials for more than 20 seconds at a time. It is believed that he may have a super-stoma granuloma (a growth of tissue in the opening of the airway where his trach tube sits) that is blocking air passage around the trach [the air that passes around the trach is forced through the larynx (voice-box) and allows him to create vocalizations]. At any rate, all of that to say that he will be having an ENT consult to confirm or deny this theory, and then hopefully once the issue is addressed, he will allow us to hear his sweet little voice, too.
The other big news is that this little, innocent, adorable little boy pulled out his feeding tube Friday evening! He had to take a short trip back to Medical City on Saturday to have it replaced. He left around 9 am and was back at Baylor by 4pm, and as with all of the other procedures, he took it like a champ! The nurse told me today that the babies did NOT like being separated from each other, and that when Emmett was brought back to their room, they both started wiggling and flapping their arms. What brotherly love! Today, Emmett was sitting up, playing, and laughing!
The other issue that Emmett is havin has to do with his G-tube/drain. If you will remember, both babies have a J-tube (feeding tube into the upper intestines) and a G-tube (feeding tube placed in the stomach that is being used to drain the bile from their stomachs to prevent them from throwing it up, or from having a tube down their nose/throat. Well. Owen has a Mickey button that gives us very little trouble. Emmett has a flexible tube (that is supposed to e replaced with a Mickey button) that gets clogged, or sits wrong in his stomach, or gets pulled out too far, or conversely pushed in to far... And then he throws up. Every. Day. Often, multiple times a day. Let me just tell you that my child should not have to throw up every day. Especially when there is something that can be done about it. As a mother, I HATE that my baby has to feel yucky like that; as a speech pathologist, the PURE BILE (i.e. stomach acid) that is passing through all of the soft tissues of his throat and mouth is going to become increasingly damaged because this issue is not being addressed as succinctly as it needs to be. Yes. I am upset. Because the solution is a very simple one. I will stop there. That is enough.
Both babies are continuing to do well in occupational and physical therapy! They are tolerating tummy time for a little longer with a little less fuss everyday. It is still a 30-45 minute process to get them both out of bed and situated for floor time, but I am hoping to get them both down very soon. Child-life, OT, and PT are VERY good about getting them out of bed, but I want them to be in bed for a smaller portion of the day every day.
Both babies are on trach collar trials (off the vent) for 11 hours now, and they are doing it with flying colors! I cannot wait until we don't need those tubes anymore! It will be just a little more freedom for them.
And now, the question you are all waiting for:
WHEN ARE THEY COMING HOME?!
Well. It's complicated. The doctors believe that te babies are ready to come home now, but not without 24 hour nursing care. Unfortunately, our insurance won't pay for THAT much nursing care. So we are waiting to be approved for insurance that WILL cover it. My babies are slightly high maintenance, and I just can't handle them all by myself. I come home from the hospital WIPED OUT. And they are still medically fragile. So, long story short, it's still going to be a couple of months before we are able to bring them home. (unfortunately that means no NICU reunion this year...but there is always NEXT year!) In the grand scheme of things, it is not that long. To my impatient little self, it's too long. I just want them home! But, we are on God's time. And that, my dear friends, is precisely how it needs to stay.
In other news, Liam officially turned 2 this past week, and what a handful he is! He has to speeds: running/climbing/falling and sleeping. He is such a sweet baby, though!
We are going to have a family birthday party for him in Arkansas this weekend.
Oh!! And as per our M.O., there can't be a move without a van crashing into a building. (Last time it was during our move to far North Dallas. This time it was just down the street from our new home!) Watch out Grand Prairie, the Ezell's have arrived!! No really. Watch out. :D
I mean... What are the odds that a van crashes into a building near our home twice in less than a year? Ha! We are THAT kind of special!
Last but not least, 3 good things:
1.) Our God is an amazing God.
2.) My mom. Dave's mom. All my grandmom's.
3.) Dave and the kids for helping me make it through a rough Mother's Day.
May God bless you this day and every day, till next we meet again.