Yep, we were clearing out some of Ella’s drawers and ran into her hat collection. So Kelly and I decided to try some on the Bun to see which ones still fit. She does have a face for hats and based on her expressions, I think she was enjoying herself.

This fun moment was after a fussy morning. Really, it started last night. She only saturated 93-95 last night on 1 liter. When Kelly weighed her this morning, she weighed in at 9.36 kilos. Last Friday, she weighed 9.09 kilos. That is an increase of .27 kilos, which is equivalent to an increase of 9.5 ounces in only a few days. That is typically a sign of fluid retention.

After Josh and I discussed, we noted that 2 weeks had passed since our ER visit and the last time she had Bumex. She does seem to be on this bi-monthly schedule of needing Bumex. So, we opted to give her Bumex today at noon. Then, she took a really long nap and woke up acting better clinically. We’re hoping for a restful night and even weight loss in the morning. So far, it isn’t looking too promising: tonight, she is only saturating 94 on 1 liter (about the same as last night). If she hasn’t lost weight in the AM and is not acting better clinically, we may have to give another dose of Bumex.

This just confirms that we really want to move ahead with the SVC procedure. We have not heard back from the doctors with an update, but hope to hear soon.

In the meantime, we try and treasure each day with Ella. Although it is the toughest job, we’re honored to be the parents of a true miracle.

Colossians 4:2 (NLT)
Devote yourselves to prayer with an alert mind and a thankful heart.

Ella required 2 liters while she snoozed last night (saturations 96-97). This also led to her waking up multiple times throughout the night. Little sleep for Mommy!

When Kelly weighed her again this morning, she was down slightly in weight to 9.30 kilos (versus 9.36 kilos). Not a huge loss, but not a huge gain which is good.

So we gave her Bumex at noon again, to see if she would pee off more fluid. We’ll watch her closely tonight and see what her weight is tomorrow.

Although she required more oxygen throughout the day, she did well with her eating. She went on a food frenzy and ate small amounts of peas, green beans, apple/raspberry/banana, and plain apples. It was a satisfying day for Super Nanny – she was able to see all her work paying off! Heck, Ella was even smiling during her PT session too!

Tomorrow is our big day at the hospital with the upper GI and renal ultrasound tests. We’re praying that the tests show nothing severe, but give insight as to her current condition.

Isaiah 65:24 (NLT)
I will answer them before they even call to me.
While they are still talking about their needs,
I will go ahead and answer their prayers!

Ella did much better last night from an oxygen standpoint. She was stable on 1 liter. However, she might have gotten dried out because she woke up every hour fussing and asking for a drink. So I was up and down a lot and finally when I laid back down at 4:45am, I was not able to go back to sleep. After tossing and turning for 30 minutes, I decided it was a new day and ran to the coffee machine.

Ella’s mood was pretty good considering that she was not allowed to have any food or drink after 10:15am for 4 hours. She enjoyed the ride to the hospital and walking around the hospital. She was in a great mood; smiling and kicking. Anytime that she has a chance to go out into the real world, she gets excited to be out of the house.

We did the upper GI first. They filled up her tummy via her g-tube. There was no retching and the gastric emptying was good. This has been consistent with our experience. It also confirmed that her nissen is still intact and she does not require surgery – Praise God! Then, they offered her a drink of barium liquid to watch it go down her esophagus. This is where she normally retches. Sure enough, she took several swallows and started retching. You could see it going down her esophagus and then building up, higher and higher towards her throat. She was trying to fight it off, but retched pretty good. This was all done while she was lying down. It took about 1 minute for her to swallow and have the liquid go through the nissen into her belly.

The radiologist had her drink more, then propped her upright and the same process occurred, but gravity helped and it all emptied into her belly in 30 seconds. So, I asked him how long it normally takes us to swallow and empty into our belly (if we do not have the nissen), and he told me 15 seconds. So, her emptying is delayed from her esophagus through her nissen into her belly. The radiologist noted that he does not think her nissen is too tight; it appears to be functioning. But, it is somewhat tighter and not allowing the emptying at the most optimal rate.

The retching last summer was because Ella needed surgery. The nissen had herniated and was pushing into her esophagus. Since the surgery, the surgeon made the nissen tighter (probably because he did not want it to fail again), but now she is retching hard and frequent because it is not emptying fast enough. So now we will follow-up and see if there is anything we can or should do to help alleviate the retching.

Ella got real upset through the procedure and had a good cry. She did not like the radiology technician holding her arms down and twisting her around…especially because she was a stranger and “not safe”. When we went across the hall to the renal ultrasound, Ella could use her binky and cuddle her frog so it went a bit better. The technician was not willing to mention anything, so I don’t have any idea about the status of her kidneys.

Overall, she seems to be doing better tonight. She did not get lots of napping in today, so she was fussy and cranky tonight. Once she took a bath and was fed, she was ready for the bed. I’m hoping that she sleeps well throughout the night.

We’re praising Him that Ella does not need surgery for her nissen. And, we are still seeking Him for wisdom and discernment on whether or not we need to take any steps to improve the retching (Is there anything we can do? Would a procedure make it better or worse in the bigger picture?). We’re hopeful about the renal ultrasound that her kidneys have improved and not worsened. And we’re trying our best to be patient about the next steps for the SVC procedure.

Thanks for all the love, support and prayers. They mean so much as we seek Him for answers.

Deuteronomy 4:29 (NIV)
But if from there you seek the LORD your God, you will find him if you look for him with all your heart and with all your soul.

Ella had a good day.

When the nurse came, she weighed in at 9.2 kilos. That is a bit more than is normal for weekly weight gain. We did see her go from 9.36 kilos to 9.15 kilos after all the Bumex kicked in earlier this week. So, it worked. And clinically, she seems to be in a good place: she was smiley today and and even tolerated her feeding exercises without too much complaining.

Also, she had a good time with PT and tolerated lots of physical exercise today. She is getting so much stronger.

We’re so pleased with her progress on the PT and OT front. Although some days are tough, you can clearly see the progress she is making.

Now, we would love to see some progress on the medical front. We received a call this morning and her SVC procedure is scheduled for Wed, Feb 25th. Check-in time is 9:30am and the procedure will start at 11:30am. They have scheduled 4 hours! Wow, that is a long stretch. We’re praying for a miracle…that Dr. Fagan and team will be able to somehow open her very occluded SVC and place a stint. Although there are no guarantees, we just feel that will be a good move for Ella in the long term picture. And as a bonus, it might make a significant difference in the fluid battle we fight on a day-to-day basis.

We have not heard back regarding the upper GI. We’re hoping to have a conversation to see if there are any steps we can take to alleviate the retching. Also, we want to see if we can discontinue her Prevacid prescription. She received this back when she was admitted to the hospital and was having a tough time with her belly sensitivity from her re-do nissen surgery. At this point, if everything looks good on the upper GI, it doesn’t seem like it makes a lot of sense to keep this medicine in her regiment. The pulmonologist agreed and wanted to wait for these results to make a final decision.

We’re anxious to hear about her renal ultrasound too. The hope is that the nephrocalcinosis has decreased over the past few months. All chronic use of diuretics, but more specifically, Bumex is what really caused the decline in the status of her kidneys. Now that we have used a much more mild diuretic for every day and only Bumex every two weeks, we’re hoping to see improvement.

Can you hear me now? Ella has her hearing test on March 25th. It seems like a long time away for a status, but it was literally the soonest appointment that was available. We hope this hearing test will be conclusive. We really want some better information regarding the status of her hearing.

Josh has not been feeling well the past few days (he felt like he was fighting something). It turns out that there are a handful of people that were sick at his office (open cubes). He tried his best to avoid the cooties, but it seems like he may have caught a minor bug. On his way home tonight, he stopped by Grandpa’s to use his thermometer and give hugs to Manny and Maggie. It turns out that he has a low grade fever. So, he has left us gals here at home tonight to hold down the fort. He plans to hang out at Grandpa’s until he is feeling better. He does not want to compromise Ella’s health, as even a simple cold could put Ella in the hospital.

Lots of cute pictures today…enjoy!

Proverbs 8:34 (NIV)
Blessed is the man who listens to me,
watching daily at my doors,
waiting at my doorway.

Ella would not fall asleep last night.

Kelly put her down at 10pm which is about the same time we returned home from date night. For whatever reason, Ella was wired. She was happy and kicking in her crib. Rocking her, singing to her, giving her Tylenol for her achy teeth…nothing seemed to work. It was finally 11:30pm before she decided that getting beauty sleep was a marvelous idea.

When I was playing with her today, it became evident how soon her next set of teeth are from breaking through the surface of her gums. They must hurt and be driving her crazy. It is the 4 top teeth – – it will be so cute when those are added to her frequent smile.

As we start another week, we count the days until Ella’s SVC procedure. We are craving a medical breakthrough for her so badly. Please join us in praying that God will grant Dr. Fagan the ability to open her SVC and place a stint and that this could be the breakthrough that we have been waiting for.

1 Thessalonians 5:16-18 (NLT)
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

Ella was wired again till 11pm last night. Finally when she went down, her numbers looked good.

The scale this morning showed more weight loss – 9.06 kilos. It will be interesting to see what it is on Friday, which is the day we use to track her weekly weight gain. Although it is slight weight loss, it is better than significant weight gain.

Once Ella woke up this morning, she was fussy. I’m not sure if it is the overall teething getting to her, but you could just tell that she did not feel that great. The OT came to try and work on her feeding skills. Once Kelly put her in the chair, Ella let her know that there was not going to be any of that noise. Her lungs are definitely getting stronger – she was screaming loud! As we already know, Ella definitely runs the show, so the therapy session was cut short.

As long as she did not have to “work” today, Ella seemed fine. But as soon as you made any move that she didn’t want, even to change a diaper, she let you know.

We’re hoping that she is in a better mood for tomorrow since she has PT and OT sessions. Beauty sleep can cure many ailments and so we’re hoping that it does that for her tonight. Either way though, we love our princess, cranky and all.

1 John 5:14 (NLT)
And we are confident that he hears us whenever we ask for anything that pleases him.

Ella had another rough morning, but got better by the afternoon.

Her OT session and eating sessions went pretty well. She was more tolerant the first eating session and seemed to take a liking to a couple of new flavors today: apples & apricots and peas & brown rice. Although, she apparently is not fond of garden vegetables. Well, her Mom isn’t either. So, there you go! As Kelly put it, it smelled like they forgot the vegetables and just put in the garden…like the dirt.

The PT session went well too. She is really starting to enjoy her “play time”. That is the key: getting her to do exercise and think she is just hanging out and playing. I walked in on the session and she was smiling! It was very cute.

One reason that she might have been cranky yesterday: one of her teeth on the top has broken through her gums! She has several that seem like they are going to emerge any day, but one has actually surfaced.

As I type this, I’m a little shaken up. We just noticed emergency vehicles pulling up to our neighbor’s home. Our hearts sank and we started praying. Once we could tell that someone was placed in the ambulance, Josh walked over real quick to see if there was anything we could do for them. It was our neighbor’s mom who suddenly became ill. Please lift her up in prayer – that the Lord would heal her and bring peace to the family.

We praise Him and thank Him for the many blessings, including our health. And although Ella has her challenges, it has been nearly 4 months since we have been hospitalized. We’re very thankful.

Colossians 2:7 (NLT)
Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.

Just another normal day for Ella, with OT and PT sessions.

We heard back from her pulmonologist. As far as her upper GI study, he doesn’t think that there is anything we can do to reduce her retching. Surgically dilating her nissen might make the contents empty from her esophagus into her belly faster, but it also might compromise the strength of the nissen. Since it is an invasive procedure and her nissen has already herniated once, it does not look like there are any immediate remedies.

The increased retching since this past surgery does seem to be tied to the nissen being tighter and therefore fluid is emptying slower. When she drinks a lot and it takes longer to empty into her belly, it starts to build up higher and higher in her esophagus. Then, the reflexes in her esophagus kick-in and she retches. Right now, she has such a hard time coordinating the suck, swallow, breath activity that when we try to pull the bottle from her mouth to limit the volume, it throws her rhythm off and she ends up retching. So, we let her dictate the volume and simply try to help by always making sure she is upright. Plus as she ages, she can learn to control her retching by not swallowing as much liquid all at once and just taking a few sips at a time.

Unfortunately, her nephrocalcinosis (calcium build-up on her kidneys from use of diuretics) has not improved. It hasn’t worsened, but it also has not gotten better. We had expected that it would improve over the past 4 months since she has been on a daily regimen of a non-loop diuretic. We will likely have to wait until our next appointment to get the doctor’s thoughts on what we should do long term.

And if we can get a miracle on Feb 25th with the SVC procedure and the stint, maybe Ella would not need to use diuretics as often. This would definitely help the nephrocalcinosis build-up on her kidneys. We’re holding out for a miracle.

Thanks for all the support and prayers.

Job 5:8-9 (NLT)
If I were you, I would go to God
and present my case to him.
He does great things too marvelous to understand.
He performs countless miracles.