It just doesn't get easier

Eli has continued his long road of medical complications since he came home from the hospital. The poor boy just can't get a break :( I don't want to dwell on Eli's health issues, it just depresses me. I apologize for not updating earlier, but I needed some time to mentally & emotionally sort things out for myself before I shared things with the world.

Eli's eyes

We had Eli's appointment w/ his ROP doctor on Tuesday and got some good news. Eli's eyes are finally mature and he got to the go ahead to go have his vision checked at the pediatric ophthalmologist. I really thought Eli was in the clear, as almost eye problems due to prematurity are related to immature retinas (ROP). Most preemies that have ROP develop nearsightedness (like Genny), but their vision is easily correct w/ corrective lenses. I was very shocked (to say the least) when we spend over 3-hours at the pediatric ophthalmologist on Thursday.

I knew things weren't going well when the doctor didn't talk, at all. I tried to make small talk, since we were in the exam room for such a long time, but the doc kept saying he would explain things when he was done. So, I agonized over every thought while he kept leaving for find more lenses, lights, and special equipment to examine Eli's eyes. Eli was such a champ through the whole thing. He fussed a little bit, but for the most part he found the bright lights and Mommies goofy singing amusing.

The conclusion from the exam, Eli can't see. He is extremely nearsighted, -9.0 (most "normal" babies are nearsighted to about -4.0). That diagnosis was sort of expected, and then the harder news came. Eli has cataracts in both eyes; high left being significantly worse then his right. The cataract in his right eye is covering over 50% of his field of vision. His left eye is much worse, but the ophthalmologist said he couldn't define a ridge around the cataracts. He said he is unsure of why, and spent over 90-min just looking at his left eye over and over again.

Eli will need surgery to remove the cataracts, but it's not an option at this time. The doctor said he needed to consult some other specialists before he decides on a game plan for Eli. Another issue Eli has to deal with is ambylopia (lazy eye). His brain has basically shut-off signals to his left eye b/c of the severe cataracts. Eli was unable to track any light with his left eye and only to ~45 degree angle occasionally with his right.

The ophthalmologist suspects that Eli may have a neurological impairment that is interfering with his sight. Basically his right eye should see well enough to track some light, but his brain isn't "firing" right. We have a referral to a neurologist for further diagnosis. We got sent home with patches for Eli's right eye to try and retrain his brain to use his left eye. Eli is supposed to wear the patches for 1 hour 3x day when he is awake, but due to other health issues this week, he hasn't started his vision therapy. We got back to the ophthalmologist in 3-weeks and hopefully we will get a more clear diagnosis.

Please continue to pray for Eli and his sight. It is so heartbreaking to know that something is seriously wrong, but even the specialists don't know enough to correct it. I left the ophthalmologist on Thursday fearing that my baby boy will never be able to see. In the back of my head my motherly instinct knew something was wrong w/ Eli's sight, but it is very hard when that feeling becomes reality.

Eli's gut

Eli is in another rough stage of chronic diarrhea. I posted before about problems Eli has with diarrhea and Synagis. He basically starts pooping (20-40+ times/day) and can't stop. It takes a long time for Eli to make up the lost weight and fluids, especially when on a "good" week he gains ~5-7 grams/day.

Unfortunately, Synagis is like a double-edged sword. Eli has very compromised lungs due to being on a vent & oxygen for such a long time. RSV could just be enough to take over his frail little body. So, we want to make sure he is protected the best he can be during RSV season (Sept-April). Synagis is given as a monthly injection, but whenever Eli gets synagis he gets so depleted due to the side-effect of diarrhea. For right now his pediatrician still feels the benefits of RSV protection outweigh the consequences of poor weight gain and massive fluid loss.

So, Eli got his Synagis shot last Friday (1/5) and his flu shot Monday (1/7) as scheduled (the flu shot has basically the same side-effects and same reasoning behind why Eli needs it). Then the diarrhea started, as expected, only this time things has been much, much worse. Eli lost a significant amount of weight in a very-short amount of time. The Friday before Synagis Eli weighed 3290 g (7 lbs 2 oz) and in 8-days he was down to 3007 grams (6 lbs 10 oz). Eli definitely did not have any grams to loose. The recent weight loss caused his little body to shrivel up and become very, very frail (I won't be descriptive and I certainly didn't take any pictures. It's very hard for me to look at my precious little Eli in this state, and I am the mother of some very thin babies.)

I have been in constant contact with Eli's doctors this past week trying to figure out the cause and plan of action for Eli’s diarrhea. We were in the middle of transitioning Eli onto Neocate formula the week prior to his weight loss. We kept Eli on 2/3 Elecare (old formula) and 1/3 Neocate w/ 3% pectin (new formula, which is basically the same as Elecare except the type of fat. The thought pattern was the long-chain fats in Neocate would potentially be better absorbed and provide slightly more calories- 9.0/g compared to 8.5/g).

In theory, this change shouldn't have caused such drastic weight loss. Eli stayed on the normal concoction of formula until Friday (when he lost yet another 40 grams) and the dietitian suggested going back to straight Elecare w/ 3% pectin and mixing it to 24 calorie/oz instead of 22/cal. Eli is already over the maximum volume of formula for his weight (calorie wise he is getting almost 4 times the amount of calories/weight then "normal" newborns).

Now we can just pray that Eli is able to absorb enough of the 24 cal formula, decrease his dumping (higher cal concentrations often just causes more stooling in short bowel children), rehydrate, regain the lost weight and continue at his growth pattern. Eli says that sounds like a lot for a little guy, so lots of prayers are always appreciated.

The traumatic trip back to Children's

When I last talked to Eli's dietitian and GI doc on Friday (1/13), they were both in agreement to allow Eli to stay home and hope the formula change & a decrease in his diarrhea allowed him to start to gain again. Eli had been into his pediatrician on Monday, I talked with his GI doc on Weds & Fri, I checked in w/ his dietitian every day that week and his home health care nurse from Children's was at the house on Friday. It was so stressful this week watching my little boy become depleted and knowing that there was nothing I could do for him. I was up most of the night Friday holding my fussy, lethargic little man and I made the decision that if Eli had lost weight again I would take him into the hospital.

Saturday morning came, I weighed Eli and he had lost another 40 grams (down to 3020 grams, 6 lbs 11 oz). When I undressed Eli and saw his tiny sunken body, I just knew I had to bring him to Children’s. Shawn was able to stay home with the girls, who were very upset as we had planned to do "something fun", and I drove my baby back to the hospital we knew all too well.
It was very bittersweet being back at Children’s. I knew Eli needed fluids, but it was very hard feeling like he had been "captive" there his first 3.5 months of life.

The ER visit was not fun, to say the least. We entered the ER at 1 pm, I had to beg the admitting nurse to put us in a room right away (I surveyed the lobby, with all the hacking children waiting during in RSV season, all I could think of was a breeding ground) and we waited for almost 2 hours before we actually saw a doctor. The ER doc was extremely understanding of Eli's complex medical needs. It was sort of a wake-up call when I went through and recited all of Eli's surgeries, dates, meds, times last given, doctors/specialists names & addresses, complications, etc all by heart. Eli got the diagnosis of "medically complex".

The good thing was the ER doctor actually listened to me and felt that I knew Eli best. He asked what he could do for Eli, rather then me being told the tests they want to perform on my son. Eli had the normal run of stool cultures, IV fluids, and x-rays to check for bowel obstructions & GT (feeding tube) placement. It was pretty hard watching Eli get poked and prodded. The poor little guy had to be poked 5 times before they could get a good vein for an IV and it ended up going behind his ear. Eli had a lovely blue head wrap to hold the IV and lots of cotton taped to his body. He looked so pathetic, but after just a bolus of fluid, I could tell he was starting to feel better.

We were in the ER a little over 4-hours when I decided to go ahead w/ admitting. Eli was benefiting for the IV fluids and it was such a struggle to get the IV in that I just couldn't do this again in a few days when he got dehydrated again. The plan was to balance out Eli's stooling w/ IV fluids and watch how he tolerates his GT feedings.

We got a room on the med-oncology floor, thankfully not short-stay again. I was able to get a bed and stay in the room with Eli. The night was as best as it could be in the hospital. Eli decided at ~11 pm he had it and wanted to go home to his swing. Nothing would settle him down. I ended up walking back and forth the tiny room for 5-hours until my legs ached. Eli would fall asleep for 5-minutes, long enough for me to set down with him, and then wake up in a blood-curdling scream. His heart rate would shoot up over 190 bpm, making his alarm sound, the nurse would run in & flick on the light, and then Eli would blast out a massive poop. I did manage to get almost an hour of sleep when I put Eli in his car seat. Poor little guy just wanted something familiar.

After our long night we got some better news in the morning. Eli's labs looked well, again, very surprising how he somehow manages to keep normalcy when he poops so much and looses a lot of weight. All of the stool cultures came back negative, which is good except it made it harder to pinpoint the cause of the massive watery diarrhea. Eli looked a lot better w/ the extra fluids. It is strange how a little amount of IV fluids "plumped" his back up.

We saw his GI doc's & ped's partner and got the go ahead to go home. Eli was still having the same extreme watery diarrhea, but he said there wasn't much they were doing for him in the hospital. If I felt comfortable caring for Eli at home, that is where he is safest. So, I didn't hesitate to sign Eli out of the hospital. I am very glad that Eli isn't "sick", but still very concerned about his stooling/weight issues. He is still having the same diarrhea, I just pray that he won't get to the same state he was in yesterday.

We have our scheduled appointment w/ Eli's GI doc on Tuesday and ped Friday. Eli's ped wants us to device a plan for when he gets dehydrated. It's probably not in Eli's best interest to be admitted to the hospital due to his high susceptibility to hospital infections (RSV, rotavirus, etc). His ped wants a standing order for when Eli goes into the ER for dehydration/diarrhea, they are to put him in a room ASAP, give him a bolus of fluids over 4-hrs, and let him go home (unless Mom feels he needs labs/x-rays/to be admitted, etc). It gets complicated explaining to every healthcare professional "Eli's story" and what "normal" is for Eli. It's nice that healthcare professionals are recognizing the parent’s role w/ medically complex children; I just wish it didn't have to happen with my son.

A long update to say that life stinks for little Elijah this week. I know God gave Eli to us for a reason, it's just very hard somedays to watch him go through the things he does. Eli is the bravest boy that I know and I'm so proud God gave this little miracle to me. Please keep Elijah in your prayers and I pray our next update can bring some better news.