It’s been a few weeks since our last post.

Mostly, we’ve just been trying to work on feeding and Gi issues. Overall, it has improved. We had quite the challenge getting the food pump to work – Ella is too mobile. I had this suspicion the last time we left the hospital and I was correct. Once we had her home for a couple of days, she would start to move and literally the IV pole holding the food bag and food pump (stands over 5 feet tall) would come tumbling down, almost wiping out Ella a few times. I decided that scenario was not worth it.

From there, I tried to switch and feed her more at night and just do small feeds several times per day during the day. Anytime I would use the food pump at night, even if I was just delivering water, she would wake up and fuss intermittently all night. That got old, real fast. Plus, Josh has been thoroughly enjoying his new job (praise God) and so when I’m up all night with Ella, I have no reprieve the next day. With most of us, that is fine for a few days. But after days and days in a row, it can make you a little squirrly.

Now, we’ve worked up the bolus feeds so that we are having feeding sessions about 7-8 times per day. We’re also trying to keep her upright for at least 15-20 minutes after a feed to help the food drain from her tummy. This seems to be working ok although I know Ella is still uncomfortable. Her reflux has gotten worse – now when she retches after a feed, we are sometimes getting food coming up too which has never happened before. This means that her nissen is getting looser and it puts her at a greater risk to aspirate.

I guess I’m trying to say that this is still not an optimal feeding schedule for either one of us, but it seems to be the best compromise with life at this point. I have to say, feeding my daughter is one of my least favorite things to do since it usually involves a high degree of discomfort for her. I look forward to the day when this part gets easier ~ it’s always been a challenge for us.

Along with the feeds, her stool has improved too. I don’t know that it would be considered “normal” (still some mucous), but I have not seen any blood. So whether it is the food itself or the sulfasalazine (new GI medicine) or a little of both, she seems to be in a better place than we were a month ago.

She’s not sleeping at night like she used to in the past – 9-10 hours at a time. Now, I’m lucky if we get 6-7 hours. When we went for her GI follow-up appointment with her doctor, I asked if sulfasalazine could cause insomnia. He noted that is not a side effect he normally hears about, but it doesn’t mean that it could not be playing a part. The GI doctor wants us to stay on our current regiment, increase the amount of food versus water in the diet (increase calories) to help Ella gain back some of her weight. So far, she gained less than a half a pound in 3 weeks (went from 13 kilos to 13.2 kilos, about 29 pounds). He wants to see if we can improve that number. Also, he wants Ella to go for allergy testing. We plan to see him again in September to review and reassess where Ella is at with her weight/feeds/stools. Please pray for the Bun to get better sleep and increased feeding tolerance.

A fun surprise over the past couple of weeks: I will leave the play area to walk into the kitchen. When I come back around the corner, Ella is crawling more and more. She seems to have this newfound freedom with crawling all over. The real surprise is that our physical therapy exercises have been paying off – almost too well. I will come back around the corner and a few times now, Ella is climbing the stairs! She is getting the hang of going up them but hasn’t quite figured out how to get down. Because we have an oversized curved staircase, it makes it tough to block it off. Although I’d rather not impede any urges that Ella has for mobility. I guess it just means that I have to really be on my toes now!

In between the new job for Josh, he also went and had surgery last week on Thursday to repair a hernia. He is resting and trying to recuperate so he can return to work tomorrow. This led into a very relaxed and mellow birthday celebration here at home for the Bun. We tried to see if she was interested in the cake (even just playing with it), but nothing so far. On that note, our friends had a beautiful birthday cake made for Ella and delivered it to our house the other day. So sweet and tasty – Dad and I enjoyed and ate Ella’s portion for her!

We took a short video and sang “Happy Birthday” to the Bun, but the microphone got covered up unexpectedly so you can’t really hear us! Oops!

It makes us a little sad that she still doesn’t really understand that it is her birthday or that anything special is going on. Emotionally, it is hard to accept that it might be years before Ella engages during a song on her birthday. And then there is always the fear that she may never respond. In the scheme of things, God has made her just the way He wants her, but it would be unrealistic not to admit that our parental desires for “normalcy” still exist.

Since Ella turned three, we no longer get support from the Early Intervention Program (federal program), so no more therapies for the Bun which is such a bummer because she needs them! The school district is not going to be able to provide occupational therapy, speech therapy or physical therapy, but is more focused on her education needs. We should hear in mid-August as to whether or not the school district is going to be able to provide any assistance to us. Aside from that, we’re still trying to see if we can get Ella on Medicaid through one of the waiver programs, but so far, she has been on the wait list for 2+ years (Medicaid would not only cover therapies, but kick-in to assist with medical needs that our primary insurance does not cover). I’m in the process of applying for another waiver program that was established recently ~ we’ll see if she can get benefits sooner using this avenue instead. We’ll probably know in the next 30-60 days. Please pray for a miracle – we could really use some support for services.

The biggest praise on our hearts and minds is Josh’s new job – he just loves it. I’ve never seen him so excited and motivated to go to work. I know it is a new job and he is still in the honeymoon period, but I have to say that this is the best thing that has happened to Josh in a long time. It’s been a nice change of pace for life, although it’s made my personal life a bit more hectic. I’ve been trying to work too, about 5-10 hours per week. It doesn’t sound like a lot, but it’s an intense type of work (data analysis) and I’m pretty worn out just taking care of Ella and Lola. Please pray for my perseverance through this chapter of life.

And in some ways, I can’t believe it has been 3 years since Ella was born. Yet mostly, it has felt like an eternity. One thing is for sure- all of you out there virtually and in person has made this journey so much more rewarding and helped us to endure the times. Thanks for the all the continued support and prayers.

John 16:33 (NLT)
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.

Yes, the fireworks were going off yesterday not just to celebrate America’s birthday, but to celebrate that we left the hospital.

When the doctors decided to let us go in the morning, Ella had not pooped. I think it was simply determined that she was no longer having diarrhea. And knowing Ella, it might take a while to get a stool. I convinced the doctors to let us go home and manage it from there. We would be in contact with her GI doctor and just as we had from May 9th – June 26th, manage this issue from home: she was not in a critical state. And of course, if anything made us concerned, we would be headed right back. I must have been convincing. Ironically, while we were packing up getting ready to leave the hospital, Ella finally did poop. It was still loose but did not seem to have as much mucous and no blood that time.

The discharge orders were written for Ella to have continuous feeds at a rate of 55 per hour on diluted 30/kcal of EleCare (960ml of EleCare and 360 of water in a 24 hour period). It is tough to have her hooked up to a food pump 24/7. Frankly, it is just not realistic for us. So as we’ve come home, we’ve tried a few different feeding tactics. One thing is for sure: when we try to feed too much volume too fast (like how she was fed before), she lets us know. It seems like she is uncomfortable. Plus, we have had more retching and mucoids throughout the day since we have switched back to EleCare. I’m not sure why she is experiencing more reflux, but it is happening. Also, I’ve seen her heart rate go as high as 176 within a few minutes of a feed session.

She did poop about 4 times today which is more than normal and still loose. The tough part: just as it has been in the past several weeks, the stool is varied. One thing that might have contributed: her new GI medicine, sulfasalazine, was administered around 2pm at the hospital on Sunday. Our pharmacy was closed Sunday and Monday and we did not find another compounding pharmacy to fill it until 5pm on Monday, so she missed a couple of doses. Maybe that contributed to the looseness of the stool.

Only time will tell if we continue to have the same issues. Since nothing is truly definitive, we just have to wait and see. It is better than it was when we went to the hospital, and at least there is nothing that is alarming. But at the same time, we do not have a ton of answers as to why her guts are responding this way. Our follow-up with GI is on July 23rd.

In the meantime, we’re just thankful for Josh’s new job and the warm summer weather. Please pray that Ella will gain weight and continue to make forward progress with her feeds.

Psalm 119:116 (NIV)
Sustain me according to your promise, and I will live;
do not let my hopes be dashed.

Shortly after I posted on Thursday night, Ella pooped (10pm). Unfortunately, it was still loose with mucous and blood.

Since the stool was still questionable, they opted to try continuous feeds. We started the continuous feeds at 12:30am on Friday. We were hoping that if it ran all night, we could have the GI team examine any stool on Friday. When the GI doctor visited us on Friday, he mentioned that as long as the stool was not offering anything questionable, we could be discharged and work on the feeds at home. Also, he wanted to give her another one time dose of steroids for the inflammation – this morning it was Prednisolone. He still wants us to follow up with an allergist to have Ella tested for food allergies, but this can be performed on an outpatient basis. Also, the GI doctor also wrote for a script for Sulfasalazine. Sulfasalazine is used to treat bowel inflammation, diarrhea (stool frequency), rectal bleeding, and abdominal pain in patients with ulcerative colitis, a condition in which the bowel is inflamed. Although it is taken mostly by patients with irritable bowel disease, it works by reducing inflammation (swelling) inside the body which is what is happening with Ella’s intestines right now. Ella will now start taking this medicine three times per day. Wow, yet another medicine to add to our daily regimen.

I was hoping that Ella would poop on Friday. No such luck. Now, it is Saturday at 9:30pm and still no stool. I imagine that is a good sign – heck, we were having diarrhea for weeks. So it would seem that her body is working on absorbing the nutrients and calories more. But the poop is what we really need to confirm that suspicion.

If we can get her to stool, the GI team wants to take a look at it under the microscope to help further diagnose. If it isn’t loose and has no blood, we are going to plan to go home and try and work out all the feeding on our own turf. One thing is for sure: we will be working on the food tolerance as soon as possible. It’s been tough in the hospital to have Ella connected to the food pump all the time, yet she is contained in a crib all day. At home, she is way too active and mobile. I’m already prepared that if I am not cleaning up diarrhea, I will be cleaning up formula. She moves around so much and the food line is not real long. Inevitably, we end up feeding the blanket, carpet, etc. And sometimes, she even pulls her g-tube out completely. Then, you have gastric juices everywhere too! So the sooner we can shorten the duration of being connected to the pump, the better.

Please pray for solid poop. We’d really like to go home and enjoy the Fourth of July.

Hebrews 10:23 (NIV)
Let us hold unswervingly to the hope we profess, for he who promised is faithful.

It was another crazy, busy day. Josh had a good first day of work and Lola enjoyed doggie daycare. What happened here at the hospital?

Since we had the pain and diarrhea last night, the GI team decided to let Ella’s food go in much slower today. Instead of a quick bolus feed by gravity in a syringe, they let the EleCare be delivered into her g-tube via a food pump. They chose a rate of 125ml per hour. This meant that she would get her full feed in a 2 hour timeframe.

The first feed at 9am seemed uneventful. Just before her next feed at 1pm, she had diarrhea with mucous. When we spoke to GI, they decided to try the same food schedule for the rest of the day to see if it improved. But they told me that if she had more diarrhea or mucous stool, we should go ahead and change her feeds to a continuous drip overnight to see if going the slowest possible amount would alleviate the diarrhea. We also discussed that if the food situation did not improve things, we would try steroids next.

Ella fell asleep for an afternoon snooze around 4:15pm. At 5:10pm, she woke up crying. From there, it was an hour and a half of pain for Ella. She was not real consolable. Fortunately, the attending came in to check on her and witnessed her episode. We talked through the likely diagnosis. He was concerned with the possibility of intussusception. Intussusception occurs when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it creates an obstruction in the bowel, with the walls of the intestines pressing against one another. This, in turn, leads to swelling, inflammation, and decreased blood flow to the intestines involved.

He paged the GI team and they decided to get an abdominal xray to see if anything abnormal appeared. It does seem strange that she is having these episodes of pain more and more frequently. In this case, I’m just glad that the doctor witnessed it. Since the episode occurred, it was ordered for Ella to begin receiving steroid treatment via IV at 8pm tonight (methylpredisolone). Originally we were going to wait and discuss tomorrow with the GI team after we saw more stool pass with the change and delivery of food. But I guess these episodes led the pulmonology doctor that witnessed the episode to give the steroid to help with any inflammation that Ella has in her intestines. It won’t hurt Ella to give it early, but hopefully it doesn’t mess with any plans or strategies that the GI team had in mind.

It is around 9:30pm and the fellow on for the night shift confirmed that the abdominal xray does not show evidence of intussusception or any obstruction but rather lots of air pockets (gas). So, that is a positive sign. And so far, she has tolerated the EleCare throughout the day. We just need to see if her guts are going to absorb the food and eliminate the loose stools with mucous and blood. Her last stool was 1pm and we have not had any since that time. We’ve started another feed recently, so time will tell. I’m hoping that we can have a restful night.

Psalm 73:28 (NIV)
But as for me, it is good to be near God. I have made the Sovereign LORD my refuge; I will tell of all your deeds.