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.

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

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

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.

Wow, today was rough.

Last night, we continued to notice that Ella was having a hard time breathing. We could tell because her saturations were in the low to mid 90s and her heart rate was between 155 and 180 while she was sleeping. When she left the NICU last week, her saturations were 100 and her resting heart rate was 115 and even lower. When you looked at her, you could see that her breathing was more labored. When we thought about it harder, it explained a lot of her fussy behavior the past 2 days. Something told us that things were not right and heading in a direction that could be bad.

At 6:30am, I decided to call the NICU and talk to Nurse Michelle. She agreed that didn’t sound right and offered to come by our house to take a look at Ella. Plus, it gave her an excuse to see her and give her a squeeze! Once she saw her in person, she agreed that this was not the same baby that we took home last week. By that time, we had increased her oxygen to 1 liter.

As soon as the office for the pediatrician opened, we were on the phone with Dr. Sarantos. She opted to call Dr.Kays to see what he wanted to do, especially because she is just getting to know Ella. Dr. Kays decided it would be best if we went to the ER and had him paged.

All was moving along fine in the ER. They placed us in a room, away from the public waiting area and we had a chest x-ray. Ella did not like it but we managed to get through it. Dr. Kays was also looking for her blood lab work. If you remember, she just had her blood drawn yesterday at Dr. Sarantos’s office, but somehow there was a miscommunication and he ordered another set from the ER. We were told that a NICU nurse would be coming to do the prick since Ella is a tough one.

A few minutes later, two ER nurses showed up to draw the blood. They told us that the NICU was contacted but there was not a nurse available (we later found out that wasn’t true). Josh decided to stay outside the door and make a couple of calls. I knew Ella would not do well, so I tried to warn the nurses. They began to look for an area to get the line in. Then, I realized that they wanted to do an IV line, which has always been a tremendous challenge on Ella. I warned them that she was in the ER for respiratory distress and was already on 1 liter, but they should increase her oxygen during this time because she will likely get air starved.

The next 10 minutes were the longest 10 minutes of my life. The nurses both blew me off and did not heed anything I told them. Once they started, they were not having success and with each further prick, Ella was getting more and more upset and not able to catch her breath. I was helping to console her and hold her down (she gets so mad that she will throw her arms and legs around).

When my daughter was a bluish/purple color for an extended amount of time, could not catch her breath and had that look of fear in her eyes, it was so tough for me. I continued to vocalize that she needed more oxygen support to help her and the nurses completely ignored my input. This was the most horrifying experience for me. When I looked down the next time, Ella’s mouth was full of blood. I had no idea where or how it got there. She was so mad and fighting me so hard. I was having to hold her down, keep the limited oxygen she had in her nose and try to keep her from inadvertently scratching herself. I started to cry and raised my voice louder to the nurses to let them know that we needed to take a quick break so Ella could catch her breath. It is not good for her to go extended periods of time with limited oxygen supply. They patronized me and told me that “all babies get upset”. I was in tears when Josh burst through the door and asked, “What is going on here?” He noted everything and immediately ran to the oxygen meter on the wall and turned it up (sometimes it’s easier to ask for forgiveness than permission), ran back out in the hallway and yelled out that we needed help in the form of blow-by oxygen. Thank the good Lord that Josh walked in when he did.

As the nurses were leaving the room, I had to tell them my thoughts. Through my tears, I thanked them for the job they perform each day, but told them that I was really offended that they did not listen to me. As much as I respect their experience and position, I know my daughter way better than they do and that they should have listened to me. I felt like they completely blew me off.

Once we were able to calm Ella down, which took a solid 15 minutes of 3 liters of oxygen via the nose cannula plus blow-by oxygen, we realized that she scratched her nose, ears and lips (this is why there was blood in her mouth). Later the same nurse walked in while we were still stabilizing Ella and went to turn down the oxygen. Josh told her firmly to not touch the oxygen. She started to explain and he simply asked her to leave.

To top it off, we found out later that Dr.Kays did not even order the IV; he just wanted the blood drawn. So, all of it was unnecessary. Those 10 minutes are forever etched on my memory. I have never experienced anything so horrific. My daughter was not just crying because she was mad; she was being air-starved and had a look of fear on her face. The blood in her mouth did not help, since I was not sure of the cause while the incident was occurring. It was just a scary moment for me.

Josh and I have experienced Ella being air-starved before, but it has always been within the controlled environment of the NICU. I thought that was bad enough to experience it in that setting because it is so hard on Ella. Today has to have topped it off as the hardest experience with Ella. I couldn’t help but cry hard. I love my baby girl so much and they literally just tortured her for an unnecessary reason.

Once they admitted us to the hospital, we ended up on the fourth floor in the pediatric floor. Between the ER and the pediatric unit, everyone that was seeing Ella had never seen her before. They were just taking in the information and could not provide any insight since they have never seen her before. I advised that they look up her history from the NICU, and they informed me that none of the computers are networked together. That was frustrating.

It felt like we went to a hospital in Denver or somewhere that they had never seen Ella. I know we will have to face that scenario some day, but we were just released last Friday, 5 days ago. It just seemed unreal.

Once we were settled in our room, it was tough to get some of the comforts that we were used to having for Ella, such as a positioning aid. We were getting the runaround. Josh got frustrated and decided to walk down to the NICU and get them himself.
When he laid eyes on familiar faces, especially Nurse Marla, he just started crying. Nurse Marla took the time to make sure that we had what we needed and walked back up to see Ella. She was the first visitor, although throughout the rest of the day and night, more and more NICU staff came to see the three of us. It was so comforting to see the people that care about Ella and also understand her history. The pediatrics nurse joked to us that if she charged admission, she would be rich.

Dr. Kays did stop by in the room to examine her. The first thing he did though was just walked in and gave us both hugs. I think that says it all.

Ella’s hands on assessment was good. Her lungs sounded clear. After 15 minutes, he came back and noted that her chest x-ray is one of the best he has seen. Her blood lab work came back and all her levels look great. They ordered an echocardiogram for the morning and they expect that it will be fine. At this point, they think it is simply a fluid issue again, so they have decided to increase her diuretic dose of Bumex, starting tomorrow at 8am.

We agree that it is likely fluid related because her face looked more puffy today than normal. Also, all last week in the NICU she was losing weight (likely getting off the excess fluid and going towards a true weight). As of today, she gained a good amount of weight. Yet, the only change that we made was the food – they switched her to 100% formula. They made this change late last week and did not really have a chance to monitor her adequately before discharge.

So here we are spending the night in chairs next to Ella’s bedside. There is no way that we would leave our girl here unattended. It is definitely not safe like the NICU.

We are hopeful that the echo will go well, we can grab our new diuretics prescription and that we can go home again.

As you might imagine, we were already exhausted with the everything going on the past few days. Today’s events just added to it and we are beyond exhaustion.

Our physical bodies may be depleted, but our spirits remain steadfast in our Lord.

All we know is that everything that happens is part of His plan, but sometimes the plan can be incredibly painful.

Please pray that all three of us would be refreshed tonight, and that we would be discharged from the hospital tomorrow.

Today was challenging in many respects, but also rewarding.

The more Josh thought about it, the more he knew that he needed to come with me to the pediatrician. Ella is still somewhat marginal; she can get air starved in a matter of seconds. She is reliant upon her medicines, but also the oxygen that she is getting. When the cannula comes out of her nose and/or she gets herself worked up, she gets sweaty and air starved pretty quickly. That would be tough to manage while driving the car. So, Josh resolved to take a longer lunch and work late into the night to make up the time.

It was a wise thing to have both of us present. First of all, the car ride was really tough. Ella doesn’t like it – – she would much rather be held. We had to increase the oxygen both there and back as there was not a great way to console her while the car was in motion. And that made her mad!

Once we got to the pediatrician’s office, I went inside to complete the paperwork while Josh entertained Ella in the car. I was glad to see that they have a “well kid” room. Those kids that are not sick wait in a different room. That is a great idea and made me feel more comfortable. Fortunately, the office was slow when we arrived and we ended up being the only ones in the waiting area.

The visit with Dr. Kathy Sarantos was amazing. It was apparent why she is so highly respected in the medical community as well as among local parents. Normally, she does not accept new patients, so we feel so fortunate to have the opportunity to have her overseeing Ella’s care. She shared that her daughter, Sydney, was also born with a congenital diaphragmatic hernia. Although Sydney’s duration was much shorter, we could tell that there was an understanding medically as well as from a parental role. That was extremely comforting.

Many of our concerns were alleviated, such as the stool frequency issue. It is not a problem for Ella to take 36 hours to stool (although she had one this morning, so that was only 24 hours!). However, we brought up a few concerns that she was not able to address directly on the spot, but she is so well connected that she has a way to figure out the answer. One example is Ella’s g-tube. We think that there might be something wrong with the valve. Since she does not have a depth of experience with g-tubes, she is going to have a colleague contact us to discuss our concerns.

We are scheduled to see her again in 2 weeks. Before we left, Dr. Sarantos decided to draw blood and analyze Ella’s electrolytes and potassium (they were supposed to on the day of discharge in the NICU, but it didn’t happen). Checking these levels is especially important while Ella is on a strong diuretic like Bumex. So although Ella is familiar with needles, that does not mean that she likes them. Once again, we had a melt-down moment.

When we were getting ready to leave, Josh mentioned about our journey being recorded on this blog and one of the colleagues pulled up the site on the office’s computer. I stayed in the exam room and dressed Ella, but in the background, I could hear a bunch of ladies hovered around the computer ooh-ing and ahh-ing over the recent photos of the Bun. It was sweet of them.

We were almost out the door when Michelle that works in the office pulled us over to a separate room. She had us meet Carol, the office manager. Michelle got teary-eyed and stated that even with the small amount of our story that she has been able to absorb, that they want to do something nice for us. They almost see it as a ministry. She handed us her email address and asked us to think about what they could do for us that would help out.

Josh decided to gather everyone around, including Dr. Sarantos and take a quick photo. All I can say is that I was in a fog while it was occurring. Only now do I realize what was happening…wow. So unexpected and so nice. I’m just speechless.

I know that we have a miracle girl that God has placed in our hands. But it amazes me to see when we faithfully share as prompted, how He continues to use Ella to touch lives. This was a clear example.

Once we left the pediatrician, it didn’t stop there. Josh was starving so we went through a nearby drive-thru before getting back on the highway. As soon as we pulled out of the drive-thru and waited at the stop light, all of a sudden, the large truck in front of us with a large trailer on the back started backing up into our car. Josh was laying on the horn, but that did not seem to make a difference. The lady driving the truck just kept trying to reverse. Once in the clear, Josh reversed and drove around to the front of the truck to show the lady. She was not aware that she had backed up into the car; she has poor hearing which was evident just by talking to her (probably why she did not hear the horn).

As I tried to continue consoling Ella in the car, Josh was working out the details. I started praying and thanking God for His provision that no one was injured. Also, I started to feel a peace from Him. He ordained this incident too. I began to ask if there was something further that He wanted from us.

When Josh got back in the car, he said, “That was no accident. God doesn’t have accidents. I just shared about Ella with that lady and she shared that her granddaughter has cancer, so I just prayed with her.”

The Lord works in mysterious ways. It is comforting to know that He will always watch over us, no matter what happens in the day.

Psalm 121:1-3
I lift up my eyes to the hills—
where does my help come from?

My help comes from the LORD,
the Maker of heaven and earth.

He will not let your foot slip—
he who watches over you will not slumber

Please continue to pray for Ella’s strength – – her heart rate looks a bit elevated which has not been a good sign in the past. We’re hoping that it is nothing and that she is getting healthier each day. Also, for Josh to finish his recent work project timely and for me to enjoy my time with the Bun and fight off any sickness.

Thanks for the continued thoughts and prayers.

Today was the first day as Mom in my solo role.

Thankfully, I have survived and am here to record the details. Actually, the Bun slept a lot today which was a blessing for me.

Around 10am, Ella finally stooled. This is on track for 1 every 36 hours which is something we want to address and be careful of based on her surgical history. Remember that her bowels developed in her chest and were moved down during her repair surgery, so there is always a higher chance of bowel obstruction.

I don’t sense that there is anything major going on with it right now, but it is just something that we want to watch closely. We can tell that not stooling more frequently, like she was prior, is causing her great discomfort. Because of this, we decided to start using the food pump and doing feeds over 30 minutes versus a bolus feed. She seemed to be getting very fussy right during the bolus feed, so we think that it might be causing too much pressure for her.

Mid-day, I was able to catch about an hour of sleep while Ella was napping. Normally, I cannot nap. This just means that my level of exhaustion was worthy of a nap.

The day was fairly uneventful until this evening when we had to switch out Ella’s nose cannulas. They have to be switched once per week. The actual task of switching them out is not a big deal, however, Ella’s skin is so sensitive that the tape on each side has caused major skin break down over the past several weeks. So, when you have to remove the cannulas, you have to remove and replace the tape. This causes Ella a great amount of pain. The challenge is that they are using the most sensitive type of tape around, Medipore, but it still causes her skin to break down.

So when we went to replace the tape, she had a major meltdown. Yes, she turned that lovely bluish/purple color all in her face. She was very upset and was having a tough time calming down. We had to crank up her oxygen to 1 liter and really spend the time to help her catch her breath again. The pictures for today’s post capture the moments once she settled down and had some Daddy time.

The meltdown moments are a bit scary. Thankfully, we know that the Lord has His hand on her at all times.

Tomorrow is our first pediatrician appointment. We’re anxious to meet Dr. Kathy Sarantos – – we have heard nothing but great things about her. She is another reason that we decided to stay close in Gainesville for the short term.

Honestly, I am a bit nervous on a few levels. Josh will be working so I am planning to go by myself. I am nervous about transporting her with the oxygen tank (which is not light). I’m nervous about driving with her in the back seat. Josh went tonight and bought me a mirror so I can see her from the driver’s seat. I think this will be important for me, especially if she starts to fuss. Most babies you can let fuss quite a bit without any adverse consequences, but Ella can literally get air starved if she works herself up too much.

Also, I’m nervous about going to a doctor’s office with a bunch of kids around (kids are known to be infested with germs) along with adults that I don’t know and trust. I really, really don’t want Ella to get sick. Finally, we are trying to get on a routine of feed times and medicines. Since my appointment is at a normal feeding time, I have to switch some things around to make it work. It just feels overwhelming when I am just trying to get used to the whole thing.

I know that there is really nothing that is worthy of my worry. The Lord will help me get through the day. I just need to surrender and ask Him to provide strength to get through the day, and not rely on my own strength.

Aside from this challenge, I realize that this is what we should be doing each day. Relying on Him and asking Him for guidance to get through the day, so we can make good decisions that reflect who we really are on the inside. And no matter what He delivers for the day, praising His name and giving thanks for all He has ordained.

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Ella had another good night. There was only one minor crises this time.

Ella’s saturation monitor went off, so we were both up. The light was somewhat dim in the room, making it tough to see. After a bunch of theories as to why her saturations were lower (we must have switched the pulse oximeter three or four times, increased her flow, etc.), we turned on the brighter light and noticed that the cannulas had fallen from her nose. Well, that was another nice drill!

Aside from that, Ella slept through the night. She did wake up a bit earlier than normal due to her nose being stuffed up. When it gets blocked too much, she can’t suck on her pacifier and get enough oxygen through her nose at the same time so she gets frustrated and irritable. At that point, Daddy decided to pick her up and cuddle her in an upright position to help drain her sinuses (she is still having remnants of the cold that started 2+ weeks ago).

A home nurse service came again today to check on Ella. The nurse took vital signs and listened to her lungs. Everything checked out good.

Ella was in her normal mood until later in the day. Once she woke up from her afternoon nap, she seemed more fussy than normal. We think that it is because her digestion of the 100% formula is slowing things down and making it tougher for her to stool. Since she has been switched to the 100% formula about 5 days ago, her run rate is once every 36 hours (on breast milk, it was 1-3 times per day). So she remained fussy from 2pm on today. Once again, it is tough to watch her hurting and not be able to fix it for her. She is on special medication to help with digestion, and I think she will adjust, but it is just going to take time.

We tried going outside for a walk for the first time with the Bun. The weather was beautiful and we thought we would introduce Ella to the sun and breeze. At first, we tried placing her in the stroller. She did not want to be in there and pitched a fit. We immediately turned around and tried the Baby Bjorn instead since it seemed like she wanted to be held. Since Ella felt close to my heart, she relaxed and then fell asleep while we took a short stroll around the apartment community.

Tonight we had a nice surprise. Nurse Janet stopped by with dinner and came to hold the Bun for about an hour. That was so sweet of her to think of us and come to visit Ella. She too experienced Ella being fussy and confirmed that she thought it was likely the stool issue too.

As you may have assumed, I’m already feeling the effects of exhaustion that all new moms experience. Tonight, I’m not feeling 100% either. I hope that it is just lack of sleep and that I can get rid of the ill symptoms soon. More importantly, if I am catching anything, I do not want Ella to get sick (that could mean going back to the hospital).

Ella’s grandpa will be coming to visit in another week, but until then, I will be on my own each day with Ella while Josh is working. Please pray for me: I need endurance to keep up with Ella’s routine (I don’t want to get sick from the lack of sleep), and pray that I will be able to feel successful in taking care of her solo. There are many times that I could use a third arm!

All I can do is rest in His promises. Once again, that seems to be the theme during this whole journey.

Isaiah 41:9-11
I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

We are so blessed by our baby girl; we just want to do everything we can for her.

Thank you for the continued prayers. We appreciate the love and support from each one of you.