Today was incredibly tough.

As of last night, we were trying different strategies for Ella’s feeds. Mostly, we have tried changing the volume and frequency of the feeds. After trying many remedies, we found some solace late today when we basically feed her very slow. We use the food pump and feed 35ccs over an hour, with a 30 minute break, throughout the entire day until her continuous feed at night from 11pm – 7pm. This means that she is hooked up to a food pump pretty much all day, but we are not sure what else to do.

This past weekend in the hospital, we tried Mylicon drops (simethicone) and that did not seem to help. So, we also tried Colic Calm, a homeopathic solution that is supposed to ease the pain. Neither of these seem to have much of an impact for Ella. Maybe this means that it is not gas?

We have started to think that it may not be so much a food preference either (dependent on the type of formula), but it is definitely something related to feeding her (volume, pressure in her tummy, gastrointestinal pain, etc.).

I know that many of you are mentioning breast milk. Trust me, it is not the first time we have considered it. But, we have a challenge based on Ella’s condition. The breast milk along with 5 days of formula is what caused Ella to go back to the hospital (fluid retention that resulted in respiratory distress).

Breast milk and the Similac Advance both have their fats in a long-chain triglyceride form. This causes more fluid to be excreted from Ella’s lymphatic system. If you remember, when Ella was in the midst of her chylothorax, using breast milk significantly increased her fluid issue over a 24 hour period. So although it is generally the best for a baby, it may not be the best for Ella based on her condition. The other issue, quite honestly, is financial. As many of you likely know, breast milk can often be as expensive as a mortgage payment. However, if we felt that breast milk would solve Ella’s problems, we would be more than motivated to figure out a way to make it work. But in these circumstances, it could actually make it worse for her simply based on the way her body digests it.

Here is an excerpt from an article that may explain it better (“Management of chylothorax in children” by Elizabeth C. Suddaby):

“The goal of nutrition therapy in chylothorax is to reduce the flow of chyle through the thoracic duct. Since it is mainly long chain fatty acids that are absorbed from the intestines via lacteals and enter the central circulation at the thoracic duct (Shils, Olson, & Shike, 1994), enteral intake of long chain fats must be severely limited. Thus, dietary management includes complete gut rest with parenteral nutrition, relatively fat-free enteral feeding, or very low long-chain triglyceride-high medium chain triglyceride (MCT) enteral feeding (Beghetti et al., 2000; Buttiker, Fanconi, & Burger, 1999). Medium chain fatty acids (6-12 carbons in length) are absorbed directly into the portal system and do not enter the lymphatic system (Shils et al., 1994).”

Also, the superior vena cava is an integral part of moving fluid from the lymphatic system. Considering that Ella’s SVC is collapsed, this increases the amount of fluid build up in her head. This is what we are seeing more these days related to fluid build-up. As Ella’s body grows more and more collateral veins, this should improve.

When Ella was diagnosed with chylothorax and SVC syndrome back in August, they placed her on Portagen. The fat blend is 87% medium-chain triglycerides and help those who do not efficiently digest or absorb conventional fat. Ella tolerated Portagen just fine, but it is not intended to be used as an infant formula and is not considered nutritionally complete.

Upon going to the hospital last week, they wanted to take a look at the food and the role it played in her fluid retention. So, their first choice was Pregestimil, since this one contains 55% medium-chain triglycerides. Unfortunately, Ella did not tolerate this food. Their next choice was Alimentum, which is a lactose-free hypoallergenic formula that is specifically created for fussy babies that exhibit colic symptoms. Also, 33% of the fats are in the form of medium-chain triglycerides. So, this is one of the reasons they are trying to see if this will work, even versus breast milk.

A slight difference in Ella’s fluid issue: she used to accumulate lots of fluid in her pleural cavity and it was very evident on a chest x-ray. Even last week when Ella had excess fluid, her chest x-ray looked great, but her blood labs showed that she was too “wet” and that is why her respiratory status was being impaired.

Since she has been in so much discomfort throughout the day, she had frequent meltdowns that made her sweaty, turn bluish and require a temporary increase in oxygen. When she is not feeding or is sleeping, her heart rate and saturations are fine on 500ml of oxygen (her baseline). So right now, it does not appear that she is having a fluid retention issue or respiratory issue. This is purely a feeding challenge. However, we have to be very careful about what we feed Ella, so as to not cause more of a fluid issue.

In between the episodes, the door bell rang and we received more flowers and a care package from some work friends today. That was so sweet of them to think of the three of us.

Along with increasing the feed time, the only other distraction we found for Ella was the television (check out the commercial in the picture – – wouldn’t you want to learn about 30 minutes of relief?). The TV would work temporarily and provided a brief break from the crying spells.

We have a follow-up appointment with Dr. Kays on Tuesday and the pediatrician on Wednesday. At this point, no one has been able to give us any direction since Ella is such a mystery. Please pray that Ella will overcome this feeding challenge and that God will bestow His wisdom to us.

Please pray for endurance and perseverance for myself and Josh. Ella is such a blessing and it hurts to see her in pain and feel that there is nothing we can do to help her. Also, that there is no one except the Lord himself that knows the mystery of Ella, since she was created by Him. Please help us petition for His knowledge and wisdom.

Luke 18:1
Then Jesus told his disciples a parable to show them that they should always pray and not give up.

I didn’t sleep that well last night. Ella slept solid through the night, and Tina could’ve cut down trees with her zzzz’s, but I found myself waking up multiple times just to catch a glance of Ella’s “numbers” across the room. I just want her to be better. I want her to have a break from not feeling so good. I want us to have a break from her not feeling so good.

Being outside the hospital definitely has its comforts, but what has been really difficult is the fact that we’re continuing to deal with uncharted territory these days. I mean, we thought that when we finally went home, the mystery of Ella would be solved in regards to her care at home. We thought we would return to the hospital if she became ill or had any major complications, but not just as a continuation of the mystery that was never solved in the NICU.

With all she’s been through at the hospital, the decisions were more in the hands of Dr. Kays and his team. Now, it’s reversed. Most of the control is in our hands and the doctors are there to consult, but the issues that Ella continues to experience are still mysterious.

Does it make sense that it was less difficult to surrender to the Lord when we had limited control in the hospital, but now it’s harder because we have more control? I know the truth, that the Lord is ultimately always in control, but until I can fully surrender, true peace and rest is not realized.

We were hoping that the reduced calories in her food would minimize Ella’s discomfort. Well, at her 3 ‘o clock feed she started getting real uncomfortable. She started retching and pushed all her food back up into the tube. She was crying so hard that she couldn’t catch her breath and started getting diaphoretic (sweaty). This is so hard to see because she gets real upset and turns purple. Kinda like when your kids have been in the pool to long and there lips are purple, that way, but all over.

We upped her oxygen and clamped off all the food she pushed out and removed it. After this we were able to start calming her down.

Oh…we know we’re not alone in these moments, our Heavenly Father is right there with us, but it’s still so hard to go through. We feel so helpless. Especially because Ella’s doctors don’t have any exact answers on what to do. We did text one of the nurse practitioners who’s been an amazing resource. She suggested adjusting the volume and frequency of the feeds. This does make sense because our feeling is that it may relate to the amount of food going into her belly at one time.

So we’ll be feeding her 10 times a day every 1.5 hours, and a continuous feed at night for 8 hours. We’ve done two feeds this way and she’s tolerated it. Time will tell if this works.

Tina has been so incredible with Ella. She rarely left the Bun’s side the entire 9 days she was in the hospital. Some NICU friends were sweet to stop by and give her a break so she could take a quick shower or grab some coffee. Now, she’s giving her all her focused attention at home, with minimal help from me because I’m consumed with a big project and will be working through the weekend to complete it.

Grandpa headed home today as well Aunt Shannon. It was so great having them both around. It really emphasizes how much we miss being close to family. Thank you Grandpa for doing so much laundry, scrubbing dishes, and cleaning around house. Thank you Shannon for the groceries, Ella’s welcome home cake, and for running errands for Tina.

We were also surprised by some welcome home flowers today by a friend of a friend. They’re beautiful and much appreciated.

Please continue to pray for discernment and wisdom on how to proceed with Ella’s feeding plan this weekend. We really want to find a way to feed her that does not cause discomfort. Also, that her fluid would continue to reduce so that when she visits Dr. Kays on Tuesday and has labs drawn, that her BUN is higher (less fluid on board).

Yay! We’re back home, and a full home it is. Ella’s Aunt Shannon is in town for a visit and Grandpa is still here too.

Shannon had a conference in Orlando and planned to come up and see the Bun before she flew back to California. She spent most of the day with Ella and Tina in the hospital. Shannon even stood by as Ella’s G-Tube button was swapped out for a new one. Tina stepped out for this, as would I had I been there ;-). Ella’s other “Aunt” was also there for the quick procedure, right in time to give her some comforting cuddles.

Previously Ella had a Microvasive Mini-button for a G-Tube. It was low profile and looked real clean. The valves in these tend to be flaky though, and hers broke early on. We decided to go with the Mic-Key version this time. This one sits away from her body a bit more, and is more visible. There are some pros and cons to each one, but we think this will work best for us moving forward.

We’re still trying to find the balance for Ella’s food. It looked like the increased caloric version (28 cal) started causing her problems within 24 hours of giving it to her. We first thought it was a volume issue, but even after doing a pump feed over an hour, she still got fussy. So for now, we’re dialing back to 20 cal formula and will work our way back to the full 28 cal in the coming days.

If there’s anything we’ve learned about Ella, she’s not big on change. I think the rule is, if you can go slow, by weaning down or slow steps up, she tends to do better. This also applies to the meds she’s on. Considering that she’s doing ok at the moment, no changes are scheduled, unless her labs say otherwise. I asked Dr. Kays about weaning any meds (thinking of her hefty dose of diuretics), but he doesn’t want to change anything if it’s working (this is very understandable considering Miss Ella). I affirmed that if he’s ok with it, I am too.

At this moment, Tina is holding Ella and Shannon is singing her lullabies. Ella was a bit overtired tonight because she didn’t sleep too well today, so we’re trying to put her down for the night. We finally got her settled in bed and it looks like she’s comfortable. Her numbers look good too, especially considering where they were a 8 days ago. She’s on 500ml of O2 and she’s saturating 100% with a heart rate of 135. She’s zonked out pretty good and we expect her to sleep through the night.

Please continue to pray for our baby girl. Her fluid issue is getting better, but it’s not fully resolved, and we need wisdom in finding the right balance of meds moving forward. We also ask that she may handle the increased calories in her food in the coming days. Please also pray that Tina and I get our rest so that we can give our best to Ella. This is the first night Tina’s back in her own bed so hopefully she’ll get a solid nights sleep.

Right before we left the hospital today, a volunteer walked in and said that she had been praying for Ella. It turns out this person goes to a church that a friend of a friend goes to. It was so neat to see her look upon Ella for the first time after praying for her for so long. It turns out she didn’t even know about the blog, but had been in prayer for our girl on a continuous basis.

What an incredible blessing…to have so many come before the Throne of our Lord, to lift up Ella Renae…people we have never met. We look forward to having you all meet her in person some day. Thank you again for being such diligent prayer warriors.

Blessings to you and your families.

Philippians 4:4
Rejoice in the Lord always. I will say it again: Rejoice!

Today was pretty good for Ella.

The nurse practitioner came by earlier in the day to check on us. At that point, everything seemed well. Her respiratory status is good, her heart rate has decreased. She was fussy a few times, but I think it was due to teething. I gave her Tylenol throughout the day and that seemed to help.

The other day, Josh bought Ella a Bumbo chair. It is great for her to sit in because it forces her to work her neck muscles. She tried it for the first time the other day, but today I was able to snap some photos since a nurse was at the bedside too. Since it makes her work a lot by holding up her head, she can only tolerate it for 5-10 minutes. But during that time, she is enjoying the view of the television from her hospital bed.

Grandpa came and spent lots of time in the hospital today with me and the Bun. Ella was having a great time and flashing lots of her smiles to him.

Dr. Kays came by to see her about 2pm. He said that the abdominal xray did not show anything of concern. The neurology ultrasound report indicates that there are no signs of hydrocephalus at this time. Her labs overall are great, although her BUN is 17. This is a huge improvement from last week when she was admitted with a BUN of 12. Initially, he wanted her BUN to be 20 or greater before we left the hospital. As of today, he noted that 20 would make him more comfortable, but that since she is showing such great signs clinically, he is willing to let us go home sooner with a BUN of 17, possibly by Friday.

He was ready to change out her g-tube and realizing that she had just eaten, he opted to replace the g-tube tomorrow. That is not something that I am looking forward to for Ella’s sake.

The one component that we need to still monitor is her feeds. I explained that the feedings had been going well and that I thought that we may have found the right one.

Of course, the next feed at 3pm did not go well. We fed her a bolus and she started to retch. Along with that, she began to cry and get very fussy, indicating that she was in some sort of pain. She ended up pushing all the food back up into the syringe. This was the first time that I had seen any negative experiences while we tried this formula.

If you remember, the Alimentum is standard at 20 calories, which she ended up having for 4 bolus feeds and 1 continuous feed. From there, I reminded Dr.Kays that it was supposed to be mixed to a higher calorie formula since she is fluid restricted. So, starting last night at 6pm, we have used the 28 calorie mix of this formula. She had 4 bolus feeds and 1 continuous feed before we started having an issue.

It seemed like maybe the volume or rate was too much at a bolus feed. Therefore at the 6pm feed, we tried using the food pump and had it feed her continuously over 30 minutes. She seemed to tolerate the slower rate okay until I went to vent her. About 5 minutes later, she started behaving the same way and ended up pushing all the food back into the syringe.

In both cases, she would have an episode. This was the first time she behaved this way where it required that I increase her oxygen, just to get her to calm down. Fortunately, she rebounded well.

We consulted with the nurse and attendee and decided that we would use the feeding pump at the 9pm feed, but try it over a 1 hour period. When we did this feed, Ella was sleeping. She did not wake up or give a negative response to this approach.

We know Ella likes to go slow and that she does not respond well to change – she likes to take her time. Maybe we are expecting too much from her too quickly with this food change.

I like this formula, so I am hopeful that stretching out the feedings to 1 hour will be the trick. Tomorrow throughout the day
is when I will likely be able to see if that is going to work.

Either way, I want to make sure that we figure out this food issue. I do not enjoy living at the hospital, but want to make sure that we can take Ella home and not have to return for the same issue. Dr. Kays did mention that once we are discharged, we will have weekly appointments for the first several weeks to make sure that we stay on top of her fluid issue.

Aunt Shannon is planning to come and meet Ella for the first time tomorrow. We are looking forward to seeing her.

Please continue to pray for all three of us, but especially with Ella and her feeds. We need this to resolve before we go home.

Today was much better for Ella.

Dr. Kays came by early this morning to check on her. I explained that the food switch has been tolerated well. We started the new food last night with the 9pm feed. By this morning, I realized that the Alimentum comes at a standard of 20 calories.

Since Ella is fluid restricted, she needs to have more calories. Dr. Kays had completely forgotten and was glad I mentioned this to him. He wrote a new order and as of 6pm tonight, her feeds have been adjusted to 28 calories.

I hope that the denser food will not cause any problems. Along with no tummy pains or fussiness related to food, she has stooled twice today. Finally, I have not had to administer any gas medicine with this new food. The next couple of days will truly let us know, however the initial signs are good.

The labs were drawn this morning. Poor Ella was in a deep sleep and the tech woke her up with bright lights and a needle in her arm. I did not see Dr. Kays for the rest of the day, but I am sure he will be around tomorrow to discuss the results. My curiosity got the best of me and I asked the nurse to look in the computer. It looks like her BUN is 17, which is an improvement from 12 nearly one week ago. But if I remember a prior discussion from Dr. Kays, he would like to see a BUN of 20 or greater before letting her go home.

I think that she may be at a point where more and more of the fluid is coming off of her. Even tonight, her face looked way less puffy. The mystery in all of this is how to keep her fluid issue under control, especially when we go home.

In the mid-morning, Ella enjoyed her ride down the hall in her bed and into the elevator down to Ultrasound. She tolerated it real well and the nurse practitioner from neurology came by this afternoon to discuss. She charted Ella’s head circumference since birth and all is within normal range. Also, she compared the ultrasound to the results of the MRI in December and noted that she has not seen a change. If you remember, they were consulted to see if Ella had to much pressure on her brain from fluid retention (hydrocephalus). At least we got the information today that indicates that there is nothing to be concerned with at this point.

Since I did not see Dr. Kays the rest of the day, her g-tube was not replaced. As long as it is replaced before we leave the hospital, I am satisfied.

Ella had four friends from the NICU come and visit her bedside today. That was great for me, so I could run for coffee and take a shower. Plus, Ella was feeling better and was flashing the grins. I think that is therapeutic to her NICU friends. Plus that smile is part of what makes Ella so charming. It was nice to see her feeling better.

Ella was up for a total of approximately 3-3.5 hours the entire day. Last night, there was another baby in the shared space that was quite noisy until 5am. Then, the room was not replaced with another patient until 2pm. Since Ella was still catching up on her beauty sleep, we had a nice stretch where we both caught up on our zzzzzs in the middle of the day. Seriously, Ella slept so much today. I think she is catching up from the prior days where she slept in short little spurts in between pain and crying episodes.

While Ella was sleeping today, her heart rate and saturations looked so much better (heart rate got down to 120-135 and saturations at 100). I have not seen that low of a heart rate since the NICU. Maybe the increased sildenifil is making a difference. Her breathing is looking less labored and she is starting to act like herself. She did have a few moments where she required a boost in oxygen, but they were short and she was able to recover pretty quickly.

Please continue to pray for me, Josh and Ella. We would love to see her continue to dry out, find a food that works for her and go home! Also, please pray for wisdom and discernment for Dr. Kays, as he is going to make decisions on her care over the next couple of days.

Thanks for all the thoughts and prayer support. Although the day provided challenges, it was much better and I felt covered in prayer by all of you.

The Serenity Prayer

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

I was raw emotionally today.

Ella had an “ok” night, but started having tummy/gas pains at 5am during her continuous feed. This was not something that I had seen before.

As of Friday night at her 6pm feed, they switched her food to Pregestimal. During the weekend, she was exhibiting lots of tummy/gas pain so they prescribed simethicone up to 4x per day. Up to this point, she had not required any type of gas medicine. Even with the simethicone, she was having lots of tummy trouble. I kept thinking that it was definitely due to the formula switch and also watching to see if she was stooling.

Surprisingly, she started stooling on a normal basis so her system was processing the food okay, but her episodes became more frequent and she started to become inconsolable. I was having to increase her oxygen each time because it was hurting her so much and making her so upset.

The last feed was this morning at 9am and it did not go without incident. Much of the same stuff over the weekend, but just intensified. She also started retching real bad. This was a new thing at this stage of the game.

At the same time, they came to tell me that the PICU was in need of beds and since Ella had stabilized on 500ccs of oxygen, it was time to move her back downstairs to the Intermediate Pediatric floor (which is where we were admitted last Wednesday). As you might imagine, I was not thrilled.

When I came downstairs to the new room, I was ready to feed Ella at 12 noon. As soon as I tried and let a small amount of food into her belly, she started crying hard and would not stop, so she pushed all the food back from her tube. I really think the food was giving her a tummy ache. I tried with that same feeding 4 times, at different rates, and every time she would retch and cry so hard that I had to increase her oxygen. So, she missed her feeding at 12 noon.

It was tough because I felt completely alone in the hospital. We went from the NICU where we felt like there were lots of staff that truly cared about our girl to this situation where we feel like we have little support.

Dr. Kays is the only one that makes decisions on her care. That is a blessing and a curse. It is a blessing because he is a talented surgeon and he saved her life. It is a curse because he is the chief of pediatric surgery – – he is VERY busy. And as such, when there are things that are wrong with our girl (like she can’t eat at 12 noon), no one is available to help us except Dr. Kays and he could not come around till 6pm or so.

It is understandable that he cannot come himself – – honestly, I don’t expect him to. His time is precious. But I would expect that someone on his team would be “responsible” to come up with a plan and run it past him. This way, they learn from him too.

In the NICU, he made the decisions for her care too, but you had a team of a doctor and nurse practitioner watching her clinically that were coming up with a strategy every day and passing it along to Dr. Kays for approval. On the pediatric side, you simply have the pediatric surgery team. If you think about it, Ella is not in need of surgery. Most of their patients have been admitted for a surgery and they are doing the follow-up and care for them. Ella is past her surgery needs for now.

All of this to explain that the experience is very different. The pediatric surgery team rounds at 6am and make a plan for the day and meet again the following morning. So when I have a problem with Ella during the day, they are not available to address my concerns. They are in surgery, for example. This is reasonable and I understand it, but it does not work well for a chronic baby like Ella that is complicated and needs ongoing attention. This is why the NICU with 24/7 care worked well for us.

Thank God for the NICU staff, or should I say the friends that happen to work in the NICU that have come to know and love Ella. Their support by stopping by and visiting Ella at the bedside has been awesome. A familiar face in the midst of feeling like there is no one that cares about us or Ella, is a great reminder that there are people in Gainesville that do care about us.

I cried several times today. This is so tough. My baby girl was in so much pain from the weekend and then starting early this morning, and there was no one available to address my concerns. Aside from her episodes, this new food was causing so much grief. This was discovered at 12 noon, when she would not accept the food at all. So from that time until 8:30pm, my baby did not eat. How is that possible when I am sitting in the hospital? Even throughout the day, she would have episodes and I was turning up the oxygen myself rather than waiting for a nurse. I just felt alone to deal with Ella and all her discomforts.

Dr. Kays admitted that she continues to be a mystery and doesn’t know why she is behaving fine one minute and having horrible pain the next minute. He came up with a plan:

• He ordered an xray of her abdomen to make sure there is no bowel obstruction (although I really don’t think she has that since she is not exhibiting any symptoms).
• There is a soft spot on her head which is normal for babies but feels like it has more fluid than normal, so he is having a consult with neurology.
• He wants a set of labs drawn up in the morning, so he can determine if her levels are correct and if she is dry enough.
• Based on her aversion to Pregestimal, he ordered for her to switch to Alimentum. She took her first feed at 9pm well (she wouldn’t take the Pregestimal earlier), so we are hoping that this is a good sign and that her system will tolerate this better.
• Ella’s g-tube is broken (the valve is broken and remains open all the time). This makes it tough to feed and he is going to replace it tomorrow.

 
Please pray for a restful night’s sleep for all of us, Ella to tolerate her new food without issue, her labs to show that she has dried out, and her g-tube replacement to not be too painful (it will hurt her, Dr. Kays was honest about that fact).

Also, please pray for Dr. Kays. He got frustrated at me this evening when I explained my day and how unhappy I was with the system in place for her care. Please pray for him with everything he has going on (personally and professionally) plus discernment and wisdom for how to treat Ella.

We are hoping that we will be discharged from the hospital, but it would be nice to also make sure she is doing okay before we make that move. It could be 1 day or several. Right now, all of it is a blur.

Thanks for your love and support at this time.

We had a Superbowl party in her hospital room. Yes, Ella enjoyed lounging in bed with her blanket and binky watching the New York Giants fight for the championship.

Up until the Superbowl, it was a pretty uneventful day for her. The pediatric surgery team rep came to see her this morning and talked about how she continues to retain fluid (positive 120 each day). Yet, they need to get her dry so they are considering a dose of IV lasix. At the end of the day, it was decided that they would wait and see what her input/output numbers are today. Please pray that her IV in her foot will remain viable, so that IV lasix is an option.

Ella slept on and off all day and was fussy at times, mostly due to teething and/or gas in her tummy. A couple of times, it required an increase in oxygen.

Her poor nose is also still congested from the cold she got a few weeks back. Sometimes it gets so bad that she can’t suck on her binky (babies only breathe through their nose at this age, so it will literally get so bad that she can’t breathe). When this happens, we have to suction her nose and she hates that process. I can’t imagine that any baby enjoys the suction process, but Ella will get so mad that she will turn bluish-purple if her oxygen is not increased. Please pray that her congestion will be relieved as it is certainly not helping considering all her other issues.

Ella seems to be tolerating her new food although it has been giving her tummy some grief. This happened last week when she was switched to Similac. We hope that since it is supposed to be easier to digest, that benefit will kick in soon.

We had a friend drop-by today that lives locally that we met in the NICU 2. Him and his wife are just so sweet – – they brought me a comfy pillow to sleep on at night (I have been sleeping overnight in Ella’s hospital room), a really soft blanket for Ella and some sweets to cure any hard day. Such a blessing to be surrounded by those that love and care for us during this time.

We are anxious to see the nurse practitioner and/or Dr. Kays tomorrow, so we can hear the updated plan. They need to figure out a way to get Ella dried out. Not sure what that will be, but interested to hear it.

Please continue to pray for Ella’s strength and for wisdom and discernment from Dr. Kays and the entire pediatric surgery team who is overseeing her care.

Today was a day forward for Ella with small steps in the right direction.

When the surgical team did rounds, they determined that no major changes were needed in Ella’s care. Dr. Paddock was talking and Ella rolled over and gave her a grin – – that showed that Ella was starting to feel better.

Ella was stable on 1 liter of oxygen for the past few days, so Dr. Paddock wrote an order to decrease her oxygen to 500ml, which is her baseline.

Fortunately, Ella took to the change like a champ. She was easily able to maintain throughout the day except for two times. Both of those times, Ella must have been experiencing some type of pain (my guess is gas/tummy trouble). During these 2 episodes, we simply had to increase the oxygen to 1 liter for a short period time, but did not require blow-by oxygen. This means that some of the fluid must be coming off.

Blood Urea Nitrogen (BUN) is a waste product produced in the liver and excreted by the kidneys. Upon admission to the hospital, her blood work showed a BUN of 12. We will be here in the hospital until the BUN is 20 or higher (the higher the number the more dry). All the times that I can remember, Ella was doing well when her BUN was at least 24.

Although her urine output is high, she is still not outputting enough. Please pray that she will dry out. This is the only way that we will get home.

Ella had one full day of her new formula, Pregestimil. Throughout the day, she was having tummy/gas pain. However, she did stool tonight which was a positive sign that this new formula is definitely easier for her to digest. I think it is good that we are switching the food out and also waiting for her to get “dry” at the same time. This way, if we can get her BUN high enough, it should not be because of the food.

Most likely, Dr. Kays will re-assess her on Monday and look to take her labs either that day or shortly thereafter.

Ella’s grandpa showed up tonight and had the privilege of holding her for the first time. One thing is for sure, I am thinking that Ella got her blue eyes from her grandpa. They sure look cute together.

Please pray that Ella will continue to tolerate her new food with limited gas pain, that she will pee like she never has before (we want her dried out) and that she won’t have too much pain from teething. For Dad, that he can continue to make progress on his work project this weekend and that Mom will catch as much shut-eye as possible while hanging out with the Bun at the hospital (I’ve been sleeping in her room overnight too).

As always, thanks for thinking of us and joining us on this journey.

Thank God, Ella slept pretty solid last night. Nobody was in the space next to us either, so we all got about 5 hours of sleep in. We’re still really wiped though because we’ve had minimal sleep overall during the last several days.

Our day started with the nurse practitioner giving us an update. This was great because we asked for more communication and we were getting it. Plus, the nurse practitioner is one that is part of the pediatric surgery team that works directly with Dr. Kays. All of this to say that she is a familiar face for us and is such a sweet person. We just love her. So, our day started with an update from her.

She knew our concerns and was doing her best to get them addressed. For example, we were a bit frustrated with the level of care in the Intermediate Pediatric floor. It was not appropriate for Ella since she has been having these “episodes” where she can down spiral quickly and become air starved, if she is not attended to quickly. So her first change was that she was moving Ella upstairs to the PICU (pediatric intensive care unit), where she can get more focused attention.

The move to the PICU was a good one. We feel like this is the right place for our girl. Plus, the room has a TV, which Ella has discovered. =)

Also, per the recommendation from the dietitian they’ve modified Ella’s formula. She’ll be receiving Pregestimil which will provide all her nutrition, but should be easier for her to digest than the Similac (they are concerned that the Similac might have caused some of Ella’s fluid retention issues, so they want to try a new one).

Dr. Kays also made some dosing modifications to her Sildenifil and Bumex. He’s increased her Sildenifil by 25% and spread it out over increased delivery times, including the continuous feed at night (this is the heart medicine). The Bumex was also bumped up as of last night to 1 mg twice a day. This dose is more than we’d like to see Ella receiving on a regular basis, but it may help reduce her fluid retention in the short term. And because her labs look good, Dr. Kays is not concerned with this dose at this time.

It also looks like Ella is teething for real this time. This may explain some of her increased agitation. Our other theory is some possible strain in her GI system caused by the Similac. Either way, she’s been placed on a prophylactic dose of Tylenol and that seems to be helping her.

This is the plan for the weekend, and we hope it does the trick. So far, it looks like Ella’s numbers are going in the right direction, we’ll just have to see if this gets her to a place where we all feel comfortable taking her home. Keep in mind that she is still on 1 liter of oxygen.

We have had several NICU staff coming up to visit our girl. We’ve been so blessed by seeing their friendly faces and their love for our girl. They’ve also offered support to help us if we need it as well.

Ella is excited to see her grandpa tomorrow. Can’t wait for him to meet her.

Although our hospital journey has been extended, we know that we are right where He wants us to be today and that is a good feeling. Thanks for continuing to lift up all three of us to our Lord for His strength, mercy, and patience.