Ella seemed to be in a bit of a better mood today for Kelly; she was more willing to play and do some of her exercises. And it wasn’t until late afternoon that she was tired and wanted a nap. Maybe getting more rest last night caught up with her.

The OT session went okay and the PT session went well. Just the same types of exercises day-in and day-out to try and get her eating food and stronger physically so she can move on to the next milestones.

Man, a side effect of these teeth that we were not expecting is grinding of the teeth. Ella’s been doing this for a few weeks now, especially as the top teeth have started to emerge. She doesn’t do this at night, only during the day when she is awake. Most articles I’ve read online say to not worry about toddler teething, and that it will go away with time as the toddler gets used to having teeth. But boy, it makes a lovely sound! For now, we try to simply encourage the binky in her mouth instead.

And Ella’s hair is getting a bit out of control! We’re trying to let it grow out overall, so we can convince someone to drop by the house and cut it into a style. For now, it’s free reign except for the pigtails and/or headband.

After two nights, it is looking like Captopril plays a significant role in sleepless nights for Ella.

Yesterday, she took the last dose of Captopril at 6pm (3 hours closer to bedtime than the day before). She fell asleep at 10pm and woke at 12:45am and 1:45am. Both times seemed to be nightmares of some sort. She started screaming and it could have been played off that she was in some type of pain, but as soon as I went into her room and picked her up, she stopped immediately. After a minute, I laid her down and she went back to sleep. Way too quick of a recovery for any type of pain for Ella, so maybe a nightmare?

I administered Captopril at 6am. Then, she woke coughing at 6:30am and 7:30am. So, once again there was no coughing until Captopril was given and she woke 4 times total: 2 prior to Captopril and 2 after Captopril. We’re still going to fine tune and try some other tweaks. And it is high on the list of discussion points for our next pulmonology appointment.

Deuteronomy 7:9 (NIV)
Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands.

Ella had a pretty good day.

PT went well today. And Ella’s OT therapist has missed the past 2 sessions since she has been feeling ill. But Kelly continues to challenge Ella and present food to her each day. Her second feeding session with Kelly and sweet potatoes went better than it has in weeks. That was promising. Feeding is always a challenge with Ella, so “good” sessions without major meltdowns are nice to have here and there.

So, we were trying to think about the sleepless nights and the effect that Captopril might be having on her sleep. Ideally, this medicine is administered three times per day. For convenience, we give this medicine at 9am, 3pm and 9pm, when we feed Ella. She does not do well with medicines on an empty tummy.

Since coughing and insomnia are two side effects of Captopril, it can’t be good to give her this medicine at 9pm right before bedtime. So although we cannot discontinue this medicine or talk to the doctor about a substitute until the end of the month, we brainstormed on ways that we might lessen the effect of the medicine. One way that might make a slight difference is the time of day that we administer the medicine.

I think it will be several nights to see if there is any correlation. But yesterday, she had Captopril at 3pm. Then, we skipped the 9pm dose (A couple of weeks ago when she had her SVC procedure, she skipped a dosage of meds and the doctors did not seem that concerned). We put her to bed and she finally fell asleep at 9:45pm.

The first time she woke up was 2am, then 5am. Neither of these involved coughing which is a typical culprit for waking her at night. Instead, she was consoled quickly and rolled over and went back to sleep. At this point, she was having a great night – -only 2 times by 5am. I was very appreciative!

At 6am, I woke up to administer the Captopril. Her food pump still had about an hour to run, so I figured this would be the best time. About 20 minutes later, she intermittently started making whining noises. She wasn’t awake and didn’t need me to run into her room, but I could hear her making these noises (like she was dreaming or not sleeping as restful). I wanted to go in and check on her to make sure. It seems that she was still asleep but her heart rate went from about 110 to 135 in about 20 minutes. Captopril always makes her heart race. When she has it with other meds and she is awake, her heart rate often reaches 190-200. So, this definitely looked better, but you could tell that she was not sleeping quite as good. I wondered if her heart going faster was making the difference.

At 7am, her food pump was beeping so I woke up to turn it off. She still was sleeping. Then, between 7:15 and 7:45am, she woke twice coughing and wanting something to drink. Both times, she seemed more awake than the prior times she woke during the night. I’m pretty sure this is because coughing woke her.

Although I was still up several times during the night, Ella was up only 4 times. And 2 of those times were later in the morning. So, it was a much improved night for her, but we are not sure how much that has to with the lack of Captopril.

Right now, it is a nice fantasy that Captopril would be playing that much of a role in her sleepless nights. And I say that because at least it would be something that we could define and possibly eliminate over the coming weeks.

For now, we are going to continue experimenting and recording our findings to see if they point to Captopril until her pulmonology appointment on Tues, March 24th.

It was another rough night. By 3am, Ella had already been up 8 times. We’re trying to formulate our thoughts for our next doctor appointment – we just have to try to see if the Captopril medicine is causing this insomnia. It has been going on consistently (with about 1-2 “good” nights per month) for the past 5 months since Ella left the hospital.

Aside from me not getting sleep all night, I’m concerned for Ella too. She is a growing baby. It cannot be good for her to wake up this much, this consistently over time. She needs her rest too. So, we’re praying for wisdom in this area. This cannot continue to last and yet, we don’t have a light at the end of the tunnel. We don’t know that it is just a) teething or b) a cold or illness to where it lasts for a couple of weeks and goes away.

It was a mellow day for Ella and Kelly – no therapy appointments. So, they just hung out and played, working on her exercises.

And not that it is important, but Kelly happened to take a snapshot while giving Ella her Flovent breathing treatment. Yep, this is twice per day and Ella does not dig it!

And unfortunately, Ella’s great mood and great streak of days did end late last week. She was cranky and whiny over the weekend and into today. Right now, she also has been retching a lot (likely due to all the extra secretions from teething) and has a snotty nose she is battling.

On a positive note, we are still on lower oxygen requirements and have not run into any fluid issues since her procedure. This Wednesday will be 2 weeks. That is typically when we start to see problems, so we’ll be watching her oxygen requirements, heart rate and respiratory rate to see if she is having any challenges.

As always, thanks for the extra support and prayers.

It was mid 60’s in Denver today, so I took Ella out for a walk. It was nice to soak up the sunshine and fresh air.

While we were getting ready for the walk, she decided that she was excited about the thought of going outside. Oh, it’s the little things in life!

Ella did not sleep well last night; she was probably up about 10 times.

This led to her being less tolerant of her OT and PT sessions today. Whether she was just tired or wasn’t feeling as good physically, it showed in her mood.

Her weight this morning was down to 9.14 kilos. That is a significant weight loss from even the day before at 9.3 kilos. We’re not sure if that was just a fluke or not. Kelly weighted her a few times to make sure that the scale was working properly, but that weight kept coming up on the digital screen. This prompted me to try harder to reach the doctor today…we needed a plan to help Ella gain weight.

Thankfully, we were able to reach him and come up with a strategy. He wants to increase her food volume by 10%, in this case is 92ccs. So, we are going to increase each bolus feed during the day to 125ccs and her overnight drip to 387ccs, so we can achieve this increase (total of 1012ccs). We hope it will have minimal impact on Ella’s system, but provide the extra calories that she needs to gain weight. Tonight, we tried one of the increased bolus feedings and it went fine. Also, we gave her the increased amount in her food bag for the overnight feed via the food pump. She’s only been asleep for about an hour, but so far, no problems related to the increase in food.

We’re glad it is the weekend…time to simply relax and hang out as a family.

Ella was up several times last night, mostly between midnight and 4:30am, for a total of about 10 times by 8am. We’re not sure if it is teething pain. Out of nowhere, she will just start crying and crying hard. This causes her to desaturate and for her pulse oximeter alarm to begin beeping. After some holding and consoling, she calms down. Other times, she starts whining and breathing hard. I usually run into her room before the alarm begins beeping, and sometimes she is thirsty and wants a drink, yet other times refuses the bottle and requires her binky and frog to go back to sleep. Another theory would be nightmares, since the cuddling and consoling seems to work within a minute or two. And finally, we’ve never ruled out that her heart medicine, Captopril, is partly to blame since insomnia can be a side effect.

Even though the sleeping patterns have not improved, Ella looks better. Each day, we’re surprised how good she is looking. You can just tell in her color. And her behavior has always been telling of how she feels…and she has been in the best mood. In the past, we’ve had days at a time that we would term as “honeymoon periods”. Right now, we’re hesitant to believe that this is her new baseline, but that would be amazing if this was not a honeymoon!

Her OT and PT sessions went well again today. Not as much melting down, more tolerance of the exercises and better able to compose herself when she did get upset. Again, all signs that she is feeling better.

We’re so glad for Kelly too. As you might imagine, Ella is a lot of work…and she is so much more fun to take care of when she is feeling better!

Ella’s weight has stayed the same this week. We’ve only had minor fluctuations between 9.2 and 9.29 kilos for the week (20.28 pounds to 20.48). We’re still waiting to hear from her pulmonologist to hear if he has any thoughts on next steps. Since she cannot handle an increase in the food density, we’d like to simply increase her fluid. With the recent SVC procedure, our thought is that she may not be quite as fluid sensitive. Another option would be to change her diuretic dose, but we’d like to see if we can keep her current Aldactazide dose the same and not have to give Bumex every two weeks. That would be a big step to not ever have to use Bumex. She’s been using it in one form or another for 1 year and 2 months. Moreover, she’s required using some type of loop diuretic since she was born (before Bumex, it was IV Lasix in the NICU). The long term effect on her kidneys is not the best.

We’ll be watching her saturation levels when she sleeps over the next few nights. Last night, her saturation was not quite as strong as the previous nights. Either way, her oxygen requirements are still way less. This is when we wish that our home was not at an elevation of nearly 6,300 feet. We’re curious to know what her lungs might be capable of at sea level. Someday, we will get to travel with Ella to sea level. It will be interesting to see if there is a difference for her.

As I end the post and prepare for Ella night duty, we’re just so thankful for last week and the successful procedure. We’re still in a bit if awe and disbelief that Ella’s SVC is open…that Dr. Fagan was able to get it open and place two stents…all just one week ago today.

Deuteronomy 10:21 (NIV)
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.

Ella has to be feeling better. She has been in such a good mood.

She had both OT and PT today – her first sessions since the procedure last week. Both therapists mentioned that they thought she looked better overall; her color, her behavior, etc. We think she looks better too, but it is always good to hear from someone that sees her regularly but not every day.

The OT session was still difficult, but we moved her in front of the TV with Mickey Mouse Clubhouse playing and that seemed to distract her quite a bit from the feeding task at hand. She still had her meltdown moments, but dealt with it a lot better than yesterday.

The PT session was enjoyable – she was smiling a lot. It is great that the SVC procedure had minimal down time for the Bun. It is nice to see her getting back into therapies after only a few days.

Her weight was up a tad this morning to 9.27 kilos, so we see that as a sign of improvement. We’ll see what happens over the next few days.

Not much else to report, except that she is a ham! She loves the camera and was posing throughout the day.

I read this poem that was posted on another blog of a mom that is getting ready to have a baby diagnosed with CDH. It is such a good reminder of the truth.

Who Holds Your Hand?

The journey lies before you,
The path remains “unsure”,
And there are times you question,
All the things you must endure,
Others may have walked this path,
But still, it’s not the same,
You say Lord, haven’t I done right?
You wonder…who’s to blame,
You say, Lord, it’s too difficult,
This desert, I must tread,
Why can you not give us,
A different path instead?
I know the plans I have for you,
God tells me, carefully,
My plan is not to harm you,
Just keep your eyes on me.

The very first step, which you take,
Into this sinking sand,
Was laid out for you long ago,
And set by my own hand.
And so, I set my feet ahead,
Doing what I must,
Trudging into the unknown,
And giving Him my trust.

The sand feels warm beneath my feet,
The day grows hot and dry,
I walk forward, my eyes on him,
Not stopping to ask why,
And little do I even know,
That others watch me too,
This trip a testimony,
Of all that God can do.

But I am growing weary,
Thirsty, worn, tired,
Trying to remember,
All the times I’ve been inspired.
In the middle of this desert,
I’m losing my momentum,
God says, place your thoughts on my Son,
Remember why I sent him.
Because He walked this desert,
Because He suffered too,
Because He knows and understands,
The pain your going through.

As others watch your journey,
Your strength gives them new hope,
They see Me in your struggles,
And find new ways to cope.
Not looking, you will find me,
Within this sinking sand,
Know who walks beside you,
Know who holds your hand.

~Stephanie Husted, July 2008

Ella had a pretty good day. She was in a great mood unless she was working on feeding. At those moments, she had meltdowns.

When she has a meltdown, we have to increase the oxygen rapidly these days. The great news is that she has been requiring less oxygen since her procedure last week. During the day when she is awake, she is requiring 750ccs and at night, she has been on 500ccs. We’re hopeful that this is a good sign for Ella and that we will slowly be able to wean her oxygen requirements even sooner than anticipated over the coming weeks and months.

She was sporting one of her dresses because it was 70 degrees in Denver today. Yesterday was 65 degrees, today was 70, tomorrow should be 70 and Wednesday’s forecast is for 65 degrees. Even just these brief breaks in the winter weather help and make us anxious for the warmer weather. We’re excited to get back outside with the Bun!

Ella has shown weight loss the past few days. This is a bit surprising. We expected a bit of a dip right after the procedure since she didn’t have food for several hours. However, we also increased her food volume to 920ccs, an incremental increase of 100ccs, from where she was a week ago. We did the increase in fluid because she had started to lose weight even last week prior to the procedure. But normally adjusting the fluid by that much would start to show some gain after 5 full days. She is now at 9.2 kilos (20.2 pounds). We’ve emailed her pulmonologist to get his thoughts. Our initial instinct is that maybe the diuretics are contributing to the weight loss. Normally, she requires a good amount to keep her pulmonary status in-check, but it could be that the amount of diuretics is too much now. We’re hopeful that is the reason, as we would love to wean the diuretics. Since the procedure, Ella’s body is responding to things in a different way so we’re trying to pay attention to see what adjustments might need to be made as the days and weeks pass.

We’re just so thankful for our beautiful baby girl. We thank Him for allowing us to be her parents.

Psalm 25:10 (NIV)
All the ways of the LORD are loving and faithful
for those who keep the demands of his covenant.

I will try my best to summarize the roller coaster recovery details. Warning: this is going to be a long post!

Once we went upstairs to the cardiac unit and were in a room on Wednesday night, there was about an hour till shift change. The initial nurse was great. However, shift change occurred and it was evident from the introduction that we might have a challenging nurse on our hands. The nurse had lots of experience and that part was appreciated, but she wasn’t as keen on taking input from parents. Being Ella-ologists, that always poses a problem for us since we are very involved.

We started feeding Ella at 8pm – she handled her bolus of food great. She did seem extra thirsty, so we were having to get up, prop her in the bed and give her juice frequently. Then at 10:30pm, we ran the food pump. It was about this time that Ella fell asleep. Unfortunately being at the hospital, the sleep is always interrupted. At 11pm, they used her IV to run a bunch of strong antibiotics in her system and followed it with a flush. At 12 midnight, they wanted vital signs so she was disturbed at that time too. Each time, it took some soothing to get her back to sleep.

While she was asleep, we were able to turn down her oxygen to 750ccs. This is what we have done at home before when she is doing really good, although admittedly, it has been a while since we have been able to do that at home.

We crashed about 12:30am. All three of us slept for about 2 hours. At 2:30am, Ella woke in writhing pain. She was screaming loud. It seemed to come on suddenly. The only medicine I had in the room that I could give was Tylenol, so I gave it to her via her g-tube.

We paged the nurse and started talking through what could be going on. She didn’t seem to sense the urgency that this was not normal. Then, Ella started having bouts of diarrhea. The nurse thought it was probably the antibiotics. We were convinced that she was having some GI/belly pain and needed something to treat it. We mentioned that we would like some Maalox (it contains agents to soothe her tummy along with Simethicone (aka Mylicon) to help if there is any gas). It worked like a charm when we were in-patient at the Children’s Hospital before with Ella.

The nurse informed us that they don’t give Maalox – ??? We knew that was not true. It became apparent that the cardiac unit does not give Maalox. This was a bit frustrating because we could tell that it would help Ella, but for some reason, the nurse did not want to get it for us. We asked to see the doctor. This is when we also learned that the cardiac unit does not have a doctor on the floor overnight. The only doctor available is based in the cardiac intensive care unit. So, they have to page the doctor and the doctor uses the nurse’s thoughts via phone to give orders. So, the nurse said that she would page the on call doctor to talk through it.

In the meantime, Ella was screaming and crying so loud every couple of minutes. The pain was coming in waves, which also told us it was GI/belly related pain. Our room was near the nurse’s station, so I asked Josh to leave the door slightly open, so the nurse could hear. Once she came back about 30 minutes later, the doctor decided to order Toradol, a nonsteroidal anti-inflammatory drug for management of moderately severe acute pain. It is like giving her a stronger dose of Tylenol via her IV. Once again, we were convinced that it was not that type of pain. We agreed to go ahead and give it to her, but once again asked for Maalox and were turned down. We told the nurse that if this does not alleviate in 15 minutes or so (since it was given via IV), that we were going to need another solution. The nurse thought it was maybe the food. So, we vented her and no gas was present. And just to eliminate it as a variable, I turned off the food pump.

The time passed and it was not getting better for Ella. Josh went out to see if we could get somewhere with anyone, since our nurse did not seem intent on helping us. And by this time, Josh was worked up and we were both venting a bit. It was 3:30am and Ella had been in pain for an hour. There was no doctor available and they would not give us Maalox. Our nurse was adding fuel to the fire rather than trying to calm him down and really help us. She could have tried to apologize and relate to our frustration. Instead, she just tried to defend the system. We’ve received better care at this same hospital, down the hall under the pulmonology team. When we were first admitted, we asked to be under the pulmonology team, and it was a big political thing. They said that the pulmonology nurses would not be comfortable dealing with whatever might surface in Ella since she had a heart procedure completed. Since we thought it would only be for one night, we conceded.

So, after arguing for another hour, we found another nurse that was willing to call and get the Maalox ordered for us. It arrived at our room at 4:30am. We gave it to Ella. It immediately coated her stomach and she fell asleep. She did not make another peep. It is exhausting to be an advocate for your child, especially in the middle of the night!

All three of us fell asleep until 7:30am, when the door opened and they wanted a chest xray. Ella was sleeping, so this was not going to be good. But it was one of the things we needed in order to see if we could go home. Shift change had already occurred, and from about 3:30am forward, we never saw our nurse. I needed to make sure that food was going to be on its way and see if we could get another order of Maalox on hand, since that clearly seemed to help Ella.

So, I woke Josh and asked if he could do the chest xray. In a daze, he sprung off the air mattress and started to help. He did not realize that Ella’s oxygen had been turned down to 750ccs. The xray tech was not the best and was taking his time which was making Ella even more upset. Ella desaturated very fast and required 2.5 liters to get her to recover from the ordeal. The color in her face was bluish-purple and she did not look good. It was a healthy scare. It took her about 20 minutes at the higher level of oxygen to come back to normal. Even then, her eyes were purple and she did not look good. Aside from the oxygen scare, I think it was simply because she was tired and needed more rest. Josh was convinced that something was not right with her. Either way, it was not a pleasant way for Josh to wake up and it got his anxiety started for the day.

The day nurse started off on the wrong foot with us. It seemed like the night nurse maybe tainted her view. For example, when she first started the shift I asked her to see if we could get more Maalox on hand in case Ella has more belly pain. She replied with, “Well, from what I understand you are going to be discharged and then you can give your daughter whatever medicine you want.” What kind of response was that? Fortunately, we approached her again when she returned to our room. Instead of being defensive, she apologized and handled it professionally – this turned the situation around. She was great the rest of the day and even complimented us on being great advocates for Ella.

The nurse gave more antibiotics, so I was expecting more discomfort for Ella. Sure enough, we changed the bed several times from diarrhea blowouts. Plus, for the rest of the morning, Ella did not look great. She also spiked a fever of 101.8. She was requiring 2 liters to 2.5 liters to maintain saturation in the mid-90s. A nurse practitioner visited our room and told us that Ella’s right lung showed effusion. This would explain the higher oxygen requirement. However, 30 minutes later she came back and stated that she was looking at another child’s xray.

In the late morning, Dr. Fagan and Dr. Abman’s nurse practitioner came by for a visit and noted the higher oxygen requirement. They thought she might have extra fluid on board from the procedure. It is common for them to administer IV Lasix to help many kids get off the extra fluid. Knowing Ella, this seemed logical. Since everything else was looking good, they gave Tylenol for the fever and wanted to watch her and go get more opinions on the Lasix idea. We told them that Lasix might be a good idea, but we would really like to get labs to see where she is at before giving it to her. At this point, it looked like we’d be staying another night. Since that seemed like the case, we started asking to be switched to the pulmonology service. We did not want to spend another night under the cardiology team.

The remainder of the morning, Ella slept for a few more hours. With the Tylenol, her fever reduced over time. The nurse assistant came to complete the EKG which was normal. Also, it seemed like slowly her oxygen requirement was coming down which was good to see. When I would wean the oxygen, she would do okay but if she got upset, you would have to turn it up right away. She was not able to rebound well. At this point, she was back down to her baseline requirement of 1 liter.

In the early afternoon, the tech came by to do the echocardiogram. She was very experienced and really nice. She understood that Ella was not likely going to like the echo and made sure to just get the pictures she needed. While it was going on, she was showing us the flow of blood in/out of her SVC and commented that there was “good flow”. Heck, it was apparent right on the screen. That was great to see. And although Ella did not like the echocardiogram and still complained, she was tolerating it better than the chest xray and EKG. This told us that she was beginning to feel better.

Ella decided to take another nap and Josh decided to go down the hall and escape in the view. It was about 2:45pm. This time when she went asleep, she was saturating 100 on 1 liter, so I decided to wean the oxygen. I turned it down to 750ccs and waited a few minutes. Her saturations were the same. So, I weaned to 500ccs and waited several minutes. Once again, saturations the same. I was in disbelief. I turned the dial down to 250ccs (1/4 of a liter) and waited. She settled in between 96-98 on saturations and a heart rate between 110-120. She was not ever on 250ccs even in Gainesville at sea level! WOW!

I sent a text to Josh’s phone and told him to come back. He replied, “Good or bad?” I replied, “Good”. He walked in and I pointed to the monitor. He seemed pleased, especially since she was not even looking that good this morning. Then I asked him to go look at the oxygen regulator on the wall. He was in disbelief. We sat there in amazement for several minutes. As a test, we turned off her oxygen to see what would happen. It took about 1 minute for her to go down into the high 80s. Normally, a few days ago, it would only take about 20 seconds to go into the high 70s. Once again, wow!

As we were sitting there enjoying this break, a voice came across the speaker system throughout the entire hospital, “Code Blue in the Cath Lab, Code Blue in the Cath Lab.” For those of you without as much hospital time, code blue meant that a kid was crashing/dying and they were asking for all resources available. Ella was just in the cath lab the day before. Emotions came over both of us and we began to feel sad for the family that was waiting and hearing that message over the speaker. We said a short prayer for that family and at the same time, thanked Him for bringing Ella through her procedure.

Once Ella woke from her nap, she was on 500ccs awake and 250ccs when asleep. The fever had gone away and it seemed like the further away we were from the last dose of antibiotics, the better her tummy was feeling. They came to draw labs; it was Susan, a resource nurse, that was familiar with Ella from our last stay. When she came in and noted the IV, she recommended that we try drawing off of that line. That has never worked for Ella, but we agreed to give it a try. It drew blood so we did not have to poke Ella again. Later, the labs came back looking good and in-line for Ella. Based on a good chest xray, EKG and echocardiogram, plus the fact that her oxygen requirement was lower, they decided to let us come home. Keep in mind too, we never gave her any additional diuretic. They talked about it, but then she improved on her own. We have not seen Ella improve like this before without additional diuretic!

It was about 6:15pm by the time we officially left the building. We were just so glad to not be there anymore! They asked us to watch her bowels and her fever. If either continued into today, her pulmonologist asked us to page him.

Ella still kept me up most of the night – she was up about 10 times. Between doing that Tuesday night, no sleep Wednesday night and very little last night, today consisted of sleeping for me! Fortunately, Ella did great today. She did not have a fever and her stools are returning to normal. She was in a happy mood while she played with Kelly.

We can already see that Ella’s body is responding well to this procedure. We’re so thankful for the miracle of getting her SVC open and hope and pray that lots of good breakthroughs can come from it – like being off of oxygen and medicines sooner. Only time will tell. We also pray that her body will accept the stents and that it will not try to re-occlude through the stents. We were told that is a possibility, so we need to have tests done every so often to check the flow in her SVC to make sure her body is not trying to re-occlude the openings.

Thanks again for all the support and prayers…and for rejoicing with us. We feel that this was the medical miracle that Ella needed to move forward and progress.

Colossians 3:15 (NLT)
And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful.

It was sunny and warm here in Denver today – 65 degrees. So, Ella had a chance to go on a walk and check out the neighborhood!

The day was also filled with her typical therapy exercises: sitting in a bath of pinto beans for tactile stimulation. We’re trying to get her to touch them and feel the beans. Normally, she does not like anything on her hands and will pull away if you initiate anything with her hands.

She tolerated her feeding sessions much better today, an improvement over yesterday. And it is a different child than last week when she was not feeling well. Wow, what a difference. Again, still meltdowns and whining about feeding but her toleration and self-calming was much improved. As I discussed with the OT, I think we just need to go back to basics. She agreed and so we have gone back to some very simple, basic feeding techniques and strategies to get Ella back on track with her eating.

Tonight after 3:30am, Ella will not be able to eat. Normally, her food pumps runs and feeds her continuously till 6:30am. So, I am sure that she will be a bit cranky from lack of food by the time we arrive at the hospital at 9:30am and are waiting for the procedure. Again, the procedure starts at 11:30am and is scheduled to last for 4 hours. We’ll do our best to keep the blog updated as the day unfolds.

We appreciate all the thoughts and prayers for the Bun.

Psalm 71:6 (NIV)
From birth I have relied on you;
you brought me forth from my mother’s womb.
I will ever praise you.