I wrote this 4 years ago when Eli spent a month in the hospital and I was just realizing how relevant it is right now...I have been wearing the many faces of the hospital mom as we lay here in his room and I’m listening to him breathe and analyzing every breath, every number on the monitor, every movement
I was laying here listening to the labored breathing of Eli and realized I had on "one type of face" the face of concern and attention. Then it hit me, just how many differe...nt faces we wear as mommas in the hospital with sick babies.
We have one face for doctors & specialists...the face of knowledge, research, questions & unknowns
We have a face for our babies when they are awake...the playful, joyful face of everything is going to be fine
We have a face for when we are holding our babies as they struggle to breathe but cannot see us...it's the face of fear, love, worry & tears
We have a face for our nurses & PCAs...a face of understanding, camaraderie, compassion, truth, humor in the face of challenge
We have a face for close friends & family that visit...it's weary, hopeful, encouraging, faithful, informative
We have a face for visitors we aren't as close to personally...it's joyful, encouraging, playful, & grateful
We have a face when we are alone at night...it's painful, prayerful, fearful, exhausted, longing, lonely, torn by being separated from family, focused on answers & research, inquisitive
We have a face for restraining our child thru difficult procedures...it's the most dramatic of all because it's playful, laughing, distracting on the outside. While it's hurting, sad, feeling awful on the inside. To look into their precious face that is begging you to hold them, while they have so much fear, yet you have to hold them down in uncomfortable positions while the procedure takes place.
We have a face for other mommas we know that walk a medically fragile journey...it's an understanding, a hidden bond, hopefulness, relief to talk w someone that "gets" it, raw truth, emotional release
We have a face for God when we are talking to Him...it's raw uncut emotion, begging, pleading, laying it all out, it's tearful, joyful, hopeful, questioning, trusting, it's faithful
So when you see a momma at the hospital and you see a face that's ragged and worn, just try to understand how many times that day she has had to put on a different face... I promise it's more times than you probably imagine... Just hug her, tell her your praying, tell her you love her, tell her it's all going to be ok. Give her a moment when it's ok to relax her face and just be real.
We have pinned down the culprit in charge of the recent white blood cell and CRP issues. Eli now has a pseudomonas infection in his bladder. They have put him on a 2 week course of IV antibiotics to fight that off. His gut is still shutdown and he’s on complete gut rest. Which is very challenging bc TPN (IV nutrition) doesn’t make the hunger go away, so he’s really struggling w wanting to eat and being frustrated at me bc he’s not allowed to.
It’s quite safe to say that Eli a...nd I have had to spend too much time in a very small space together so he’s very quick to “let me have it” right now 😂😂😜
Neurosurgery is still on a wait and see, they haven’t made any decisions as to when his shunt will be put back in.
Happy Down Syndrome Awareness Day!! In honor of that I had to share Elis sweet friend Molly praying for him. She’s the sweetest and she totally ROCKS her extra chromosome!!!
The other videos are just to share his laughter and show how well he’s handling all of this
To all of my local friends, come on out and have a beer to support an excellent cause. Power of Play is the organization that helps Eli so much and I want to support them so they can continue to help all the “Eli’s” have as much fun and live as meaningful a life as Eli lives.
I am going to take a lil break from the hospital that evening to go support the event, I would love to see everyone and hangout for a while outside the hospital.
Yesterday ended in the most amazing way and soothed my weary soul!!
J Luke Cochran & Tommie John came to play music for Eli last night and it was exactly what we needed after such a rough day of bad news. It turned my attitude around and gave me the strength to keep on fighting for Eli.
It’s been a tough battle but we will make it thru. Anyone that knows me knows that music is my love language...it can always fix my soul...so J Luke thank you so much for coming up there and helping Eli and I have the strength to fight another day!!
Elis stomach is still shut down so he will be started back on TPN (IV nutrition) to keep him strong enough to fight this infection. We really need his stomach to start working again so he can get on the road to having his shunt put back in. It looks like we will be here for probably 2 more weeks.
Well unfortunately I do not have the good news I was hoping to share. Elis body is still fighting really hard to recover from everything but we have had a set back. His blood work has gotten worse over the weekend, his stomach is still not working, his urine output is low, fever coming back up & his Port isn’t working well. Now we have to figure out what is causing the issue and try to come up w a plan to fix it.
I am trying really hard to absorb all of this with a good atti...tude, but I am failing. I was really hoping his numbers were going to be better and he would be able to have surgery tomorrow and get out of here Wednesday. So I have been pouting all morning, please forgive me but I am over it. Eli and I are tired of being in these 4 walls. We have been here for 20 days now and no end in sight...longest 20min procedure ever....I apologize for my negativity but I just need some time to process this and then I will be fine. Eli is taking it much better than I am, I have so much to learn from him.
Rant over...sorry 😥
Eli had a good day today, he’s sound asleep now.
Tomorrow they will check his blood work again and see if it’s a go for surgery. Hopefully we will be able to get surgery on Tuesday and then go home on Wednesday.
We are ready to go home, everyone has been wonderful to us, but these rooms start to feel really small after awhile.
Prayer request for Eli. He had a real rough night last night and has been asleep all day. His gut has completely shut down and nothing is moving thru. He’s very distended and uncomfortable. We have discontinued all feeds and are giving him complete gut rest. He’s back on IV fluids to keep him hydrated but giving his stomach time to rest and recover. If you come to visit right now please don’t bring him any snacks bc it’s a bit of torture for him since he can’t have anything orally.
Unfortunately our stay has been extended, they had to cancel Elis surgery for today bc his white blood cell count is rising. I know it’s all in God’s timing, but still feeling pretty disappointed.
Hopefully his counts will get better and he can have the surgery at the beginning of next week.
Here is an adorable pic of Eli pointing out his ceiling tile in his room & you can see some of the cards that he has received.
Great news! Eli will be able to have his surgery tomorrow to re-internalize his shunt tubing. We don’t know yet if they will be able to put it back into his abdomen or if they will put it into his heart or lung. The general surgeon is also going to check on his new port while he is under anesthesia bc it’s not been working very well.
If all goes well... we could possibly go home on Saturday!!
Eli is very freaked out about going back into surgery after this last go around, please pray for him to have peace. My momma heart is also struggling a bit w anxiety about it. It’s been a rough couple of weeks and we are a bit gun shy right now. Eli is usually very excited about surgery so it’s hard to see him so upset about it.
Sweet Finley came to visit Eli this morning, he was soooo happy to see her. He has been asking for her since he got off the ventilator.
Eli is doing fantastic and getting stronger everyday. He will be completely off of the TPN (IV nutrition) and back to full feeds via his feeding tube by tomorrow. He is still weaning off of the methadone from the withdrawals but he’s doing really well with that. All of his blood work is fantastic and he will be finishing up with the IV antib...iotics tomorrow.
Right now the only thing holding us here is his shunt still being externalized. I’m really praying that Neurosurgery can fit him on their schedule for Friday to reinternalize it. If he keeps doing as well as he is and they can get his surgery done Friday we could possibly go home this weekend!! Praying hard for that...he and I are both ready to be out of the hospital, it’s been a really tough 2 weeks. But as usual Eli is a rockstar and has fought hard to beat the odds. This was by far the closest he has come to checking out in a really long time. It’s been a big reminder of how fragile life is and how quickly things can change. A reminder to love well and live for today, we are not promised tomorrow.
Thankfully God is not finished with Eli yet 🙏❤️
I know this amazing young lady and have been fortunate enough to be able to witness the beautiful mission she has been on for years now...her family is a blessing to all who have the privilege of knowing them...please help spread their mission to Forget The Frock and help feed the orphans...if you can’t afford to buy a T-shirt, that’s ok, by sharing this page you can help share their mission
Tobias & Eli
Tobias is super happy that Eli has so much equipment removed from him so that he can lay in the bed with him again. He has missed cuddling w his lil boy. It’s been a very scary and anxiety filled 11 days for all of us, especially Tobias.
Eli has had a really good day today and has been super talkative. He is still keeping his head tilted backwards to protect his airway bc his trachea is still very irritated. So that is why he is having a hard time driving, but I’m so proud of him for trying.