Grow, grow, grow!

7 lbs 4 oz

We made it into another day with weight gain! Eli plumped up another 40 grams making him 3306 this morning. (OK, Eli will likely never be plump in his life. The adjective just sounds better iso describing how frail his little body really is) He is still below his highest weight of 3380, but we are almost there.
I started to get a little worried yesterday now that he's returned to the bloody stools. They don't seem to be bothering him any (well, no more painful then his pooping has been) and the weight gain this morning is a good sign he is still tolerating his feeds. I pray every diaper I change that I won't see the return of the devastating diarrhea.

I don't think there will ever be a day that we don't worry about Eli's weight. All I can do is rejoice each morning when he gains and pray for it to continue.

Eli is napping(by himself!) in his swing. He has OT tomorrow, so hopefully he will feel well enough to do his exercises. I haven't pushed Eli on his vision or range of motion therapies for a few weeks. Eli is such a delicate little guy and we all would rather see him grow & thrive and worry about his development issues later.

We see the pediatric opthamologist next week, so hopefully I will have more updates on Eli's eyes. I've been noticing a white pupil in his left eye in several recent pictures. I called the opthamoligists office and the appt next week is the earliest possible. Please pray the appointment goes well and we don't have any new catastrophic news.

Witnessing God's miracles every day

Look how strong Eli is!

7 lbs 3 oz and sitting!

It's kind of hard work Mommy

I still have tears in my eyes from when I just took these pictures, he is such a little miracle. Eli was coughing a lot on his back, so I tried holding him upright to help with his reflux. He was throwing his head forward and getting very upset, so I just thought I would try and sit him upright before he vomited all over both of us. Well, he sat, and liked it! Normally his muscles are so tense that his back arches and his head flops back. I can't believe my little man sat up on his own! I refuse to believe the grim prognosis (as far as development) that his doctors have laid out for Eli. Eli continues to amaze everyone with his immense strength and resilience.

Eli has been better the past two days. The best news is that he actually gained weight. His weight was 3180 Monday, 3212 Tuesday and 3266 today. He is still below his weight at the beginning of the month, but I am praying this trend of weight gain continues. Eli's normal pattern is a gain for 3 days then he looses weight for 3-4 days. I am still praying for a miracle, that Eli will be able to tolerate his feedings this time and continue to gain.

The other great news is Eli's pain seems to be more manageable. We are still doing scheduled pain medications every 3 hours, but he hasn't done his high pitch & inconsolable scream all day. Eli still requires a lot of Mommy TLC and I love that I am actually able to calm him. He was even flashing me some of those precious little smiles this afternoon.

I know God is watching over my family and little Eli. It's so hard to believe that just 3-days ago it looked like our baby boy would be recovering from his 7th surgery during this time. Eli continues to be a strong little fighter.

My happy boy

Fingers are so fascinating

Getting back to normal, sort of

Pouty lipThe stare that melts my heartMy little goofy goober

Playing with his new hospital hippoLove my lavender hippo

Eli is starting to settle back into life at home. He is still very irritable, which makes it pretty hard on Mommy. Eli is fine when he is sleeping in his swing (1-2 hrs max) or if I am holding him, rocking or singing to him. He screams in pain whenever I try and leave him- unless he's in a deep sleep. I feel so bad, I am only able to give him pain meds every couple of hours and I do my best to comfort him. I can tell pooping is still very painful for him. Eli screams for 1 hour+ before he is finally able to poop and then I can usually get him back to sleep for an hour. I just pray this will pass soon and Eli will be more comfortable.

Eli was 3182 grams this morning (7 lbs 0 oz). I know this is probably a more true weight then those we were getting the past 2-weeks due to his dehydration/obstruction extremes.

I talked to his GI doc's nurse this morning and she relayed the message that he wanted a central line placed in the near future. I really don't think this is best for Eli, but I am losing docs that also feel this way. I talked to Eli's dietitian and she agrees that there are more options to try with Eli's enteral feedings before we resort to TPN. It seems unfair to Eli to judge his growth over the past month when he has had so many issues (independent of his absorption issues) that set him back. We are not planning on doing Synagis this month, so I just pray Eli won't get anything that sends him into his awful diarrhea spiral.

We are still trying the 24 cal formula w/ 3% pectin. We just added 1 tbps Benefiber/ 4 oz formula to try and take advantage of Eli's intact colon and help slow things down. I know there are more options to try and plenty of prayers to be said to get Eli to grow.

Set free

Eli and I made it out of the hospital at 6:30 pm. The attending ped wasn't happy about discharging us, but the hospital wasn't providing Eli any care that I couldn't do at home. We have follow-up appointments Mon w/ his ped, GI doc in 1-week and surgeon in 2-weeks.

We are praying that Eli will recover and be able to start gaining weight. Please pray he won't have to endure another bowel surgery or central line.

Our little man was happy to be home, but he screamed the entire time Mommy took a shower. Eli settled right down as soon as I was out and holding him. Eli needs lots of Mommy TLC, along with prayers.

Mommy does her happy dance

I talked to the ped early this morning and she was ok w/ us going home if the GI doc said it was ok. Well, the GI doc just left the room and he said if Eli tolerates his home formula regimen then they weren't providing him any care that he can't get at home, so we'll be free to go.

I will be so glad to have my baby boy back home. We are sandwiched between 2 RSV patients and our rooms share a bathroom. The GI doc and I agreed the risks outweigh the benefits of staying in the hospital to get IV fluids. The hospital is just not a good place for our very fragile little guy.
We just switched Eli over to his home formula, 24 cal w/ 3% pectin running at his rate of 24 ml/hr. He was tolerating 20 cal @ 24/hr, but he still isn't pooping normally (for Eli). I can tell that his bm's are very painful. He hard screamed enough to burst a blood vessel along his eye, hopefully the motrin & tylenol will help prevent this from happening again. so hopefully his little gut will tolerate his "thick milkshake". The GI doc said if in 4 hours his belly isn't distended and Eli proves he can tolerate his food, he will write the discharge orders for early evening. Eli and I are hoping 5 pm :)
Eli has been
The GI doc and ped are still very concerned about Eli's failure to of weight gain for 6-months now and recent hydration issues. There was a push to place a central line so he can get IV nutrition again, but I really don't feel this is best for Elijah. Please pray Eli can get home, recover and start to grow!
I just spoke w/ the surgeon and he said Eli likes to ride on thin ice. His x-ray from this morning still showed partial obstructions, but if he is able to get stool passed they won't surgically repair them (for now). I got the sense from all of Eli's practitioners that no one wants to open up his gut again. Every time you have a bowel surgery there is increased risk for even more adhesions (scar tissue that sticks the intestines together), a greater chance they won't be able to get his intestines to function again, decreased absorptive potential of his remaining intestines, and all the other risks associated w/ normal major organ surgery. The surgeon said if Eli has another obstruction they will have to surgically remove it. The risks of surgery are less then the risk Eli will perforate his intestine again given the significant amount & degree of adhesions he has. The Lord has continued to watch over Eli, and I just pray that he will not have to face this hurdle.
I am still waiting for the wind the fueled the storm to return. Eli isn't on his anti-diarrheal medicine, but the GI doc said he doesn't doubt he will need it within 48 hrs. I just pray that we don't go from obstruction to massive diarrhea or worse. Please continue to keep Eli in your prayers. I hope to update when we get home and show off some pictures of our little trooper.