Today was a good day for Ella.

Josh stayed with her last night and she slept well. He feels like she is doing better. At times, she was difficult to console today. The only thing that seemed to work was cuddling her.

Kelly offered to watch Ella solo in the hospital setting today. It gave her the chance to take care of Ella on her own, but with the comfort of being able to hit a button if she needed help. This was a good transition for us.

Josh and I used the time to move some items to the other house, in preparation for this upcoming weekend. It was good to get a head start on the BIG process that is ahead of us. Once we were done, we went and grabbed some Chinese food at a favorite local restaurant. It was so nice to just be by ourselves, alone without the Bun.

We’re so thankful for Kelly.

Tomorrow will be a big day as far as figuring out the plan for Ella. We’re anxious to see what He has in store.

Colossians 2:6-7 (New Living Translation)
And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. 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.

Ella slept well last night. Aside from the interruptions from nurses, she did pretty good.

The nurses came in to continue checking her blood pressure. The diastolic pressure remained low and they were concerned, so they kept coming in to check it. The pressure was still low by the morning. They kept getting different cuffs, trying to get it manually versus the machines – – anything to try and get a better reading. By mid-morning, the docs decided to go back to her dose of captopril to 1mg per kilo, three times per day. This seems to be more of what she can tolerate. Although today, her blood pressure remained low despite the reduction in the medication.

The plan is to let her blood pressures stabilize over the next couple of days. Once they are stable, see what level of oxygen she is using (right now, 1.5 liters down to 1 liter, based on Ella’s comfort). We know that Ella can be stable on less oxygen, so we think she might still be fluid overloaded.

Once her diastolic blood pressure in her heart reduces, then we can discuss if we want to give her a dose of Bumex or IV Lasix. As always, we will be watching all the clinical signs to make sure that she responds favorably (behavior, retching, drinking orally, heart rate, breaths per minute, overall comfort).

We talked with Dr. Fagan about the SVC procedure. We think it might be something we want to try at some point, but we would like to try and treat her condition with medicines for now.

Ella is tolerating the new feeds really well. At 4:30pm, they increased the caloric density and we are up to 26k/cal. This is great news…because they warned if they did not get her to take food, we would need an NJ tube. I’m so thankful about not needing the NJ tube – – Praise God!

Josh volunteered to sleep at the hospital with Ella tonight, so I could have some uninterrupted sleep. So I am going to end this quickly, so I can get my rest in. 😉

Ella had an okay day. I think she was better yesterday.

Overnight, she seemed more comfortable. Although I still was up several times, it was a little easier. When I would get up to attend to her, she was easy to console whereas the prior weeks has been lots of fussy behavior.

Her blood pressures were low intermittently and became really low in the afternoon and into the evening. They think it is due to the increased dose of Captopril that started last night. The nurses will definitely be monitoring her blood pressure closely. They might even need to adjust her Captopril dose overnight, since her latest blood pressure was 65/33.

They increased her formula to 24k/cal of EleCare (pre-digested food). She has been on a continuous feed at a rate of 30cc/hour. So far, she seems to be tolerating it just fine. We will see how she does overnight.

Besides food, there were no med changes today. They are just monitoring her clinically to see the effects of the increased captopril and watching her fluid status.

We think she is still wet, mostly based on her increased secretions and oxygen requirement of 1.5 liters. I just have that “mom sense” that she is slowly creeping in the wrong direction. I’m hoping that I’m not right.

We feel like she would be requiring less oxygen if she became more dry. There is debate among the docs as far as whether or not we should wait and see with the diuretic or give her a dose of Bumex. We will be discussing it during rounds tomorrow morning.

If everything stays on track and she continues to improve each day, they are thinking that discharge could be later next week.

In the meantime, we pray for Ella’s health and comfort. She is such a good baby. It is sometimes hard to reflect back and think about how much she has been through in her short 14 months of life. Our heart’s desire is to get her to a place whereby she can remain stable and we can float through the holiday season. We would really love to enjoy them with Ella in our home.

We praise Him for our nanny. We pray for her and her important role in Ella’s life, that she would continue to be a witness of your love.

This Psalm just stood out to me this morning. Many times we can feel forgotten and wrestle with thoughts about God and His intention for the circumstances in our lives. We can feel like things own us and can triumph over us. But at the end, we know that He has a plan and purpose.

Psalm 13
How long, LORD? Will you forget me forever?
How long will you hide your face from me?

How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?

Look on me and answer, LORD my God.
Give light to my eyes, or I will sleep in death,

and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.

But I trust in your unfailing love;
my heart rejoices in your salvation.

I will sing the LORD’s praise,
for he has been good to me.

Ella did better last night.

She was still up a lot of the night, but it seemed like it was due to retching on her own secretions. Thankfully, it was not due to food. She had a continuous feed of Alimentum 20 calorie from 11pm – 2am. They stopped the food at 2am because they scheduled to have her thyroid and adrenal glands tested for hormone levels. One of the pulmonologists on the team thought that if her hormone levels were out of whack in any way, maybe it could be a contributing factor to her higher heart rate.

Speaking of heart rate, the increase in sildenafil has seemed to cushion her high heart rate. It is still higher than her baseline heart rate but not quite as high as a few days ago. Also, her own secretions have been worse the past few days. We are not sure if she is more wet or another possibility: sildenafil can cause phlegm production and that medicine has been increased for a few days too.

The Care Conference went well this afternoon. After discussing everything, this is our new plan of action. We are interested in the procedure that Dr. Fagan discussed last week about opening up her SVC. However, we decided that we want to hold off for right now. We want to try and maximize the use of her medicines; we are trying to achieve just the right balance. And everyone agrees that we have made progress and we are close. If we go through another major procedure, it is going to put us back significantly. On the other hand, if we try to get the perfect balance with meds and are unable to get the results we need, then we might have to proceed with the procedure.

We also decided to leave her sildenafil at the current dose, although we can increase it if we think it will be beneficial. Instead, we decided to increase the captopril to 1.25mg per kilo, three times per day. If you remember, we are convinced that the captopril was a huge factor in her increased heart rate. Since we experienced slightly lower heart rates over the past few days, we are going to increase the captopril. The captopril works in symphony with the sildenafil for effectiveness but also works together with diuretics to increase the effects. We will just need to watch her heart rate and blood pressures to make sure it is a therapeutic dose and works well with the other combination of meds.

And even though captopril has caused a high heart rate, we know it has benefited Ella a lot. Her BUN was 9 this morning. In the past, she would have been experiencing major pulmonary edema and respiratory distress. And for most of the day, she behaved more like herself. She was smiley a lot of the time.

Another factor is assessing her fluid status: they took another chest xray late this afternoon. Surprisingly, it looked the same or maybe even slightly better. Yet she has not had any Bumex or other loop diuretics (e.g. Lasix) since last Sunday. Instead, we increased the Aldaztazide to 1mg/kilo, three times per day. It is a blessing that we have not touched the Bumex for 3 days. We are trying our best to not use it. We realize that we still might have to, but if it is going to be part of Ella’s regimen, maybe it will be the type of med that is only used when we sense that she is fluid overloaded.

Ella has been having lots of food issues. She is not even able to tolerate Alimentum 26 calorie like she was before the nissen surgery 4 weeks ago. At the Care Conference, we decided to try a new formula (sounds like “Aloe-sure”). She is on a continuous feed right now and has been tolerating it.

Everyone at the Care Conference agreed that we simply want to get her meds and clinical signs down to a science whereby we can discuss via phone and titrate the meds, if needed. Yippee – they want to help us get home!

By the end of the day, we did find out that Ella might be having a problem creating enough cortisol (adrenal gland). The normal cortisol range is 5-25 ug/dl. She is at 0.62. The most likely cause: she took prednisolone which is a steroid; steroids can suppress the body’s natural ability to manufacture cortisol even for a time after taking them. The treatment requires an IV line plus a separate poke all within a few minutes. We did not take any action tonight. Yuck, not looking forward to that part.

We will see what the next few days brings as we tweak meds more. I’m hoping that we get closer to the optimum regimen for the Bun.

Also, I’m literally falling asleep as I type this, so I am going to crawl into bed and hope that Ella sleeps tonight!

Ella had another rough night.

This time, it seems like the continuous feed was not really the issue. She needed to be vented a few times, but otherwise tolerated the Alimentum 20 calorie formula. But at 3:30am, she became fussy and not consolable. This lasted until this morning. Finally, at 9am when the java hit my bloodstream, I was happy that another day had arrived.

During rounds, we discussed the Care Conference. It is scheduled for tomorrow at 2pm. This is where the head doctors from different specialties come together for a meeting to discuss the milestones for the patient. Right now, we feel this is necessary to determine the common, long term care goals for Ella.

Also, we will be openly discussing the proposition from Dr. Fagan to undergo another heart catheter procedure and try to stint open Ella’s superior vena cava. Although there are no guarantees that he will be successful and we do not know of the outcome for her, there is also a chance that it could be a really good thing to help with her overall fluid and pressures related to her heart and lungs. If we’re lucky, it could also help with her body’s ability to absorb/regulate fluid and minimize the back up into her lungs.

Ella is now up to her full dosage of Aldactazide. She did urinate more today which is a good sign. Her face still looks a tad puffy and she is still battling upper airway congestion. Tomorrow morning, she has labs scheduled at 8am. They will take a BMP and also test her thyroid and adrenal gland levels. They want to rule out any hormonal differences playing into her high heart rate.

Speaking of a beating heart, it seemed like it was getting a tad lower this evening. We will have to watch it throughout tonight and tomorrow morning. It might be the increased dosage of sildenafil helping out. In the past, the sildenafil definitely helped bring down her heart rate. We’ll just have to see.

Yes, I know the title of the post is strange, but we are walking on not-so-thin ice these days, relatively speaking.

One year ago today, Ella was at the height of her chylothorax in the NICU on the 69th day of her life. She was dancing on the edge. We named the title of our post “Thin Ice”.

And although we are sitting in the hospital one year later, Ella is in a totally different place. We are still dealing with “fluid” issues and her overall health. But look at a glance of today versus just one year ago.

James 1:2-4 (The Message)
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

God is so good and has blessed us tremendously with Ella Renae. Yes, it is tough. It wears on us, some days more than others. But his Word tells us to consider it a gift when we are challenged.

Lord, as we head into another day at the hospital, we seek you and praise you for another day with Ella. We ask for your will to be done in our lives. We thank you for all the blessings you have bestowed upon us. Give all the doctors wisdom to make the right decisions for Ella’s long term care. Help us to discern which decisions for Ella are in your plan. We thank you for how far you have brought Ella and for the work you continue to do with her life. In Jesus’ Name, Amen.

Ella did not sleep last night.

The Alimentum 20 calorie food went in a bit better and did not give as much tummy trouble, although she had a lot of gas. Each time I fed her, it required multiple times of venting. Also, she still was waking up retching on her own airway secretions throughout the night.

For food, they wanted Ella to try Alimentum 26 calorie since this is the food she ate before surgery. Unfortunately, she did not tolerate it. It gave the same symptoms as the Peptamen Jr – tummy pain and lots of back up including large amounts of bile. I think it is still too dense for her. When we switched back to the Alimentum 20 calorie formula this afternoon, she tolerated it much better.

We have been bolus feeding her 2 times overnight. Tonight, we are going to try and go back to a continuous feed overnight (180ccs for 6 hours; rate of 30ccs per hour). Back at home, she was on a continuous feed overnight before and we are hoping that she will tolerate it since it is only 20 calorie Alimentum. This is what we would like to go back to doing for a home regimen, so we hope it works.

By 6pm tonight, the pulmonology team opted to increase her dosage of the Aldactazide diuretic to the most it can be. We are hoping that it is enough to put Ella in a good place. The next 24 hours will be telling. If not, they will have to look to add the Bumex (a loop diuretic) back into her regimen. Because she has calcium deposits on her kidneys, they are trying to not use Bumex.

There were times that Ella seemed really happy and herself today. Yet, there were other times that she was in pain or simply did not feel well. It was a roller coaster type of day. When the times were good, we tried to take advantage of them.

Kelly the nanny spent the day with us at the hospital. We figured it would be good for Ella to start seeing her on a regular basis and I can start with teaching her about Ella and her care. Most of the time, Ella exhibits stranger anxiety. Today with Kelly, she did not act much different. That was a fun, positive experience for Ella.

Another noteworthy item: I placed Ella’s hair in pony tails today! It was a fun change of pace. Her hair is finally getting long enough and I finally bought some special rubberbands the other day that work great with fine hair. I think she knew that her hair was sassy!

At this point, the doctors are running out of ideas. Please pray for God’s wisdom and guidance in the decisions that need to be made in the coming days.

We really desire for Ella to be discharged from the hospital, but know that He has a plan and that His timing is perfect.

This was the message on the dry erase board as we entered our new room upstairs. Yes, we moved out of the ICU – thank goodness! Four days of the intensive care unit was enough of a taste for me. Admittedly, it was nice to have the attentiveness of a nurse all the time. But the privacy was so lacking. We are glad to be upstairs again, although we lost our view of the mountains. Bummer!

Last night was a tough one. Ella was literally up every 30 minutes. The night seemed to last forever. Along with retching, she was having lots of gas and tummy trouble. That discomfort has lasted throughout today. While she was up all night, I had no idea that the nurse had weened her oxygen down to 500ccs. It explains why Ella may have been more fussy throughout the night and why she seemed uncomfortable. To avoid this, there are specific instructions to titrate upwards but to not wean the oxygen.

Today, she has been stable on 1 liter. Later in the day, I noted that she was breathing faster at around 75 breaths per minute and her saturations had lowered to the high 80s and low 90s. I asked the PICU docs to take a look and listen to her; it seemed like she might be a bit wet. They ordered a chest xray and afterward, opted to give her a dose of Bumex. As time passed and so did her urine, she seemed to be oxygenating better.

I feel like they keep having to chase her symptoms with more Bumex. I know this is a fine tuning process, but I think it is pretty clear that her current dose of diuretic is not sufficient to keep her in a good place.

The pulmonology team mentioned getting a consult with endocrinology on Monday. Another thought for her elevated heart rate might be an imbalance with the thyroid and/or adrenal gland. It would mean more tests, but it can certainly eliminate doubt and guessing.

Another thought that keeps coming to mind is the food she just switched to: Peptamen Jr. I think it is causing her a lot of tummy trouble, especially now that we tried to change the density of the food over the last few days. Also, I just found out that the MCT/LCT ratio of Peptamen Jr. is (medium-chain triglyceride/long chain triglyceride) is 60:40. In the past, Ella required foods that are close to 100% MCT. The medium-chain triglyeride foods help with fat absorption. Her inability to process fats in her foods does contribute to her overall fluid issue (if you remember, she could not tolerate breast milk due to the fats either).

Ella’s dose of sildenafil went back up tonight to 7mg, three times per day. Tomorrow morning, the plan is to increase it to 8mg, three times per day. It will be interesting to see what the coming days bring as far as the best meds and food to treat Ella long term. We are hoping that we can arrange a Care Conference early next week so we can discuss all the viable options.

Josh is going to watch Ella at the hospital tonight so I can go home and get some real shut eye. I’m very excited at the idea of sleeping. And just glancing at Ella’s picture below makes me want to yawn.

Ella slept a bit better last night. She did not start her retching until 4:30am. By 6am, I was up with her.

It was tougher to sleep in the ICU because it isn’t totally dark. But it is nice to have such close monitoring of Ella; the nurse is literally behind the glass watching her the whole night. This did make it a bit easier to disconnect and focus on trying to sleep.

By mid-morning, Ella’s color was not great. Her heart rate was between 175-190 while she was just laying in her crib. She was breathing fast at 78 breaths per minute. Her secretions seemed to be increased slightly over yesterday. Everything just felt like she was too wet. Maybe not a ton, but enough to cause us concern.

We called in the nurses and then the docs to assess her and told them about our concerns. They agreed and decided to chase her fluid with a dose of Bumex. Within 2 hours, she peed 340 grams of urine. That is a significant amount. It sure seems like whatever amount of diuretic that she has been on in the past few days is not enough to sustain her.

After the Bumex, it seemed like Ella became herself. She was smiling and laughing. Clinically, her color looked better. We’re hoping that we can figure out why she is so fluid sensitive. The procedure tomorrow should provide some answers.

On that note, we have been confirmed for 11am for the procedure. The heart catheter procedure is invasive. For that reason, we are not excited about it. But we are hopeful that it will provide more answers.

When they did the echo 3 weeks ago, they saw a borderline case for left ventricle dysfunction. Their theory is that her left ventricle is small, narrow and stiff; it doesn’t pump blood as effective as it should. This is what Captopril helps correct. That seemed fine except once the Captopril was on board and they started to decrease the diuretics, her heart rate became fast. In the past, she only had a high heart rate if she was fluid overloaded.

Ella has been on sildenafil for months (opens the vessels and allows for more oxygenation) and although not common, they wondered if the sildenafil interacting with the Captopril was causing the high heart rate. So when they weaned her sildenafil over this last weekend, then her saturations started to suffer and she needed more oxygen. Rather than just increase the sildenafil back, they had an echocardiogram done.

The echocardiogram made the doctors nervous – that is why we’re in the PICU. It showed that along with her left ventricle issue, that there is evidence of tricuspid regurgitation. This means that some blood leaks backward into the right atrium, increasing the volume of blood there and resulting in less blood being pumped through the heart and to the body.

When I did some research online, I noted in a forum that one doctor told a patient that the best way to manage tricuspid regurgitation is with diuretics. This makes me wonder. Has Ella always had tricuspid regurgitation but with the massive amounts of diuretics, it was being masked or managed? I still think that sildenafil makes a huge difference for her. But the echo the other day is also the first one where she has not been on massive amounts of diuretics.

One thing is for sure: her dose of massive diuretics started to not be effective any more. That is why we came to the hospital in the first place. But, it does seem like a lot of variables including her meds have changed over the past few weeks. And when she has had a high heart rate these past few weeks, we have not heard the possibility that maybe she needs more diuretic. Food for thought…

To prepare for the heart catheter procedure tomorrow, they did an ultrasound to look for access points. They decided that her right leg looked optimal. Ella does not have a great history with access points. We’re just praying that the procedure goes smoothly with no complications.

Lord Jesus, please protect our baby girl. As she prepares for this procedure, please wrap her in your love. We know that you will be with all the doctors. We pray for wisdom and discernment. Lord, our desire is that they would learn about Ella and her anatomy so well that this knowledge would give us huge strides in her care. We praise you and thank you for where you’ve brought us and for where you are taking us as each day passes. We trust in your plan for Ella. May we continue to seek you through the highs and the lows. In Jesus’ Name, Amen.

Going into the PICU (Pediatric Intensive Care Unit). Yeah…we should know better with Ella. Things don’t always go according to plan.

Last night was rough again. She was retching every 45 mins or so.

This morning, she seemed to be getting worse. Her heart rate was still high, varying from 165-190, while she was just laying in her crib. And like yesterday, her saturations were not great.

When she was asleep for her morning nap, her saturation was 92 with a heart rate of 180 and breaths per minute at 78. I have been trying to tell the docs since yesterday that she doesn’t look as good, but I wanted the nurse to communicate the same story. So, I made sure to have the nurse assess her in that moment. The nurse agreed with me, reported back to the docs and even suggested that we increase her oxygen to 1.5 liters, since Ella started saturating in the high 80s consistently.

The echo was completed this morning at 9am. I could tell based on small talk with the technician that her echo did not look great. He even stopped during the test and asked the nurse for her latest blood pressure. I have never seen that done before. My gut told me that something was not right.

When they did rounds, I did my best to articulate my concerns. I told them that the sildenafil had to be making a difference, just based on her behavior. They didn’t seem overly concerned and mentioned that they would be back to discuss the plan once they read the results from the echo.

About 1.5 hours later, a somber pulmonologist walked into my room. It was almost like his tail was tucked between his legs. He had the unfortunate task of telling me that he felt that Ella needed to be moved to the Pediatric Intensive Care Unit. The echo shows that she does need her original dose of sildenafil. In addition, they saw some things on the echo that make them question how her heart is functioning. Although they did not go into detail, you could tell that whatever they saw on the echo made them very nervous.

Also, Dr. Abman talked about a cardiac catheter three weeks ago when she had surgery. We always knew it would be a possibility. Now that they have tried playing with the sildenafil and captopril and things have not resolved with just meds, they want to go ahead and perform this invasive procedure.

As a side note, Dr. Abman is traveling today and was in touch with his team to approve this decision. Even though he was traveling in Canada today, he made sure to call the room and talk to me, to see if we had any concerns.

The docs tried to see if the cardiology team could do the heart catheter procedure today. The sooner, the better so her condition can be treated. Once they realized her history and that she is complicated, they decided to wait until Friday. This way, they can check her history and make sure that they know what they are getting into with her anatomy. They also suspect that her vessels in her heart might be narrowed, which might require ballooning them out. This way, they can also schedule a cardiac anesthesiologist and make sure they have the proper staff to handle whatever they might encounter. We have not been given a specific time for the procedure yet.

In the meantime, we are hanging out in the PICU. The room has no privacy (glass walls), is smaller, has a toilet area with a curtain but no shower. Also, you cannot eat in the PICU rooms. Definitely not the living conditions that we had upstairs. This just makes all of it a bit more challenging in the days ahead.

So we are bummed that the heart catheter test is not until Friday. This means 2 days of waiting around in the PICU before we have any information on what will help the Bun. The good news is that they are still determined to figure out what is ailing Ella. Once this test is done, Dr. Abman and his team should have all the information that they need to make an educated decision about Ella’s care.

Please pray for Ella’s heart and her comfort as we celebrate her 14 months of life today. As always, we’re trusting Him through another bump in the road. May He be glorified through Ella’s circumstances, as we continue to share and be a witness to those around us.

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Ella was up again all night, each hour.

The retching overnight is disconcerting. I expect to have it occur during the day sometimes and also with feeding. However, I don’t expect her to wake up from sleep by retching. This has been tough on all of us. Last night, Josh woke up around 4am and offered to take over. He took care of her till around 7am, and then I let him go back to sleep for another 1.5 hours until he went to work. Tonight, Josh is working late and he is going to go to our home and have a solid night’s sleep in our bed. We need to check on our cats. The poor felines. Every few days when we make it home to pick up mail and do laundry, the cats are so lonely. Hopefully, it won’t be too much longer before we are home.

On that note, I think there is a slim chance that it will be tomorrow. When the docs rounded this morning, I gave them the overnight report. Her heart rate is not changed – – it is still too high. Weaning the sildenafil has not changed that for Ella. Also, I made sure that they knew about Ella’s oxygenation. Her color did not look as good and her saturations are all over the place. One minute she is sitting at 100, then low 90s and if she gets upset at all, she desaturates within a second or two. She wasn’t doing that on the higher dose of sildenafil. They agreed that it might be the weaning of that medicine that is causing issue with the saturations and the cause for her dusky color since those symptoms are typical for pulmonary hypertension. To confirm the status of her pulmonary hypertension, they ordered an echo.

The echo did not get completed today which is a bummer. The cardiology team was already booked for the day. And they don’t want to make any changes to the sildenafil until they take a look at what is going on with her heart. So today went by without much changes to her medicines….bummer (makes it feel like there was not much progress). Supposedly, we are on the morning schedule for an echocardiogram.

Also, we are scheduled for labs at 8am to see what her electrolytes look like. Fortunately, since they were unable to draw labs last Wed and Thurs, they gave us a break from blood draws. This was a wise move to let Ella have a break and give her veins time to recuperate. I’m hopeful that tomorrow will go better and they can get the labs they need.

Ella took 90ccs of Peptamen Jr and 10ccs of Pedialyte each feed today. It did seem to cause her a bit of grief, so we will likely hold that density of food throughout tomorrow too. I want to push her to get up to the full strength of 100ccs, but am prepared and realize that might take a while.

The swallow study was this afternoon. It wasn’t much of a study – she only took 8 swallows. I offered her the bottle (apple juice mixed with barium). She took to the bottle, took down several swigs, stopped and started retching. She had such a bad spell of retching (sometimes it is just a few retches, but this went on for several minutes). I had to increase her oxygen to 2 liters and wait a long time to calm her down and try again. After that really bad experience, she was not about to take anything by mouth. I tried purees and by that point, she would take her hand and move mine out of the way. She was so upset.

It was a bummer because it doesn’t give them much to analyze. The good news is that out of the 8 swallows that they did view, she did not have aspiration, deep laryngeal penetration, or nasopharyngeal reflux (through the nose sinuses). However, she does have pooling at the base of her esophagus right before the tightened nissen. We think this is why she is retching so much more post-surgery.

The surgery and GI teams state that retching is normal for a redo-nissen. They anticipate that her nissen will naturally loosen in 4-6 weeks post surgery. Well, tomorrow is 3 weeks and it doesn’t seem that loose. She is retching a lot and hard; pretty much like she did before surgery. We’re hoping that her GI doc will make the time to visit us in-patient so we can discuss our concerns.

Once we were done with the swallow study, we met Grandpa and went outside for some fresh air. It is only the second time that Ella has been out of her room and experienced the sunshine.

Please pray for Ella, that the doctors will be given wisdom and discernment to figure out the best set of medicines for her. Pray for her retching and feeding therapy, that it will minimize with each passing day. Also, that she will be in a stable place soon so that we can take her home.

Please pray for us and our sanity. We only have 2.5 weeks until our move date. We have been stuck at the hospital and not able to start packing for our move. It is around the corner and we are just not sure how it will all get done. We praise Him for placing friends in our lives that are willing to help during the move, but are still stressed about how all of it will get done timely.

Finally, please lift up our new nanny, Kelly, in prayer. We are so blessed to have her come into our lives. Pray that the Lord will prepare her to take care of Ella and that she will be ready spiritually and emotionally for this extremely important task. Pray that all of us can bless each other as we live together with Ella and care for her.

One thing is for sure, amongst all the strife in her daily life, my daughter still takes the time to smile at me…and that means so much. That is what really matters and I’m so glad that she takes the time to remind me each day and keep my priorities straight.

Hebrews 10:35-36 (NLT)
So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.