Posted (Tina) in All Posts on February-19-2008

Today was okay for Ella.

We still sense that she is not feeling 100%. We think that most of the fussy behavior is due to teething. But even besides that, it seems like she is just not feeling totally like herself.

She has been sleeping more the past day or so. Yesterday, she took a 5 hour nap. Today, she took a 4 hour nap. When I tried waking her to break up the nap yesterday, that was a mistake. Since she is not feeling the best, I went ahead and let her sleep to her heart’s content today.

Thankfully even with the long naps, she still is sleeping enough overnight. We are just trying to tweak her hours a bit, so they match our sleeping hours more…this way, all of us are happier.

Please pray for her to get relief from teething and for her overall health. Also, for me and Josh – – we need rest and endurance for our new role as parents.

Thanks for the continued prayers.

Romans 5: 1-5
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Posted (Tina) in All Posts on February-18-2008

Yeah, Ella didn’t really realize the significance of this day, although the PBS channel was on in the background and was discussing various historical figures. Maybe one day she will look back on Lincoln and realize that he looks familiar.

Actually, Ella did not feel great today. She slept a lot and was extra fussy.

It seems like it all might be related to teething. She has no fever, but is drooling and picking at her face a lot. We have tried the remedies that have worked for most and none have seemed to satisfy. We tried the washcloth in the freezer trick today and she only seemed happy for a few minutes.

So tonight, we made a trip to the drugstore for Baby Orajel. We are hoping this does the trick for quick relief when needed.

Her feedings went fine today. Once again, we bolus fed with 45ccs at a time and 55ccs once when she was asleep. We really had no problems. Praise God – – thank you for the prayers related to this specific issue. It is SO NICE to not be hooked up to a food machine all the time.

Over this week, we will try and increase the bolus feeds slightly so we can work back to where we were before this all started – – 70ccs 5 times per day and the continuous feeds at night.

We hope to schedule occupational therapy this week, so that we can start with oral feedings.

Again, Ella did not have a great day, but we are hoping that it is just the teething and nothing else. I think we are always extra cautious that it might be something more with her. As she is sleeping right now, she is saturating 100 and her heart rate is between 112-125, which is great.

Thank God for Josh – – an involved Daddy who is in love with his little girl. He gave me a break today while I did taxes (is that really a break?). Also, I was able to sneak in a nap mid-day which really helped since Ella was up a lot of last night.

Please say an extra prayer for Daddy. When his little one is not feeling great, his anxious nature tends to get the best of him. Also, this Mommy transition has been a bit rough the past few weeks. I need His strength and endurance to get me through each day. Finally, that Ella will continue to grow in strength and that the teething blues will pass quickly.

1 Thessalonians 5:18
give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Posted (jooosh) in All Posts on February-17-2008

Whew…I finally got a chance to come up for some air. I’ve been swamped with a project for work but I was able to get it done on time. The only reason I was able to do this, was because of my amazing wife who let me focus on work while she focused on the Bun.

Well, last night was my turn to give mom a break. Tina slept in the guest room, something she allowed me to do multiple times last week, while I spent the night attending to Ella.

Let me tell you, it is TOUGH taking care of her at night. When she’s asleep, it’s all good*, but when she’s fussing ’cause she can’t get comfortable, or she needs a diaper change, or she’s pulled her oxygen cannulas out, or her binky fell out, or her food pump finished too soon, things get a little rough. Especially when you don’t have any sleep, or are trying to sleep, or are hunched over her crib while falling asleep and your back cramps up.

*By the way, when I say she’s all good, she’s all good, but I still wake up every so often to see if she’s ok.

I’m sure most of this is “normal” for any baby this age, but I don’t have a concept of what is normal considering this is our first kid.

Anyways, Ella and I survived the night, no worse for the wear, and the multiple cups of coffee in the morning helped a little too. Coffee for me that is…heh. Ella and I did our best to let mom sleep in. She did pretty good too, stumbled out around 10:45am.

Ella did well with her feeds today. We did bolus feeds of 45ccs and she took all but one without issue. We think we’re also seeing a trend too. All the feedings that went down well occurred when she was asleep. The one that gave her problems was administered while she was awake.

Ella’s teething symptoms seemed to have intensified. She keeps rubbing her face and wanting to gnaw on things. She took my finger for a bit, but then it seemed to inflame her gums even more. We thought we would try some Anbesol but we haven’t been able to get to the drugstore yet.

She doesn’t like any of the different teething rings, which is why we’ve ended up letting her gnaw on our knuckles. I had an idea to put one of our fingers in ice water and see how she likes that. That didn’t work so well, but it spawned a better idea. Keep a couple binkys in ice water and swap them out every so often for her. We’re doing this right now, and she really seems to be digging it!

Overall, the weekend has been pretty restful. I have tomorrow off for presidents day which should give us one more day to rest and catch up on other life things, like taxes (yay).

Before I wrap this post up, I want to share about a special moment we had this week. In the midst of all the recent hospital drama, and Ella’s feeding issues, and everything else, we paused and took stock.

Last Tuesday we had our first clinical meeting with Dr. Kays outside the hospital. Normally, for anyone else, this is just a simple check up to see how your kid is doing.

But…wait….this is our Baby girl….the one in the picture at the top of this blog….the one who only had a 20% chance to survive in Denver…that baby girl….Ella…THE BUN!!! She really made it…she’s thriving…she’s gaining weight and making forward progress.

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!! This was such a magical moment for us. And I think it really hit me in this “normal” moment, just how amazing our girl is, and what an incredible gift from God she is.

Thank you Lord for our miracle girl and for everything about her. She is EXACTLY who you desired her to be, and she’s perfect in every way. Thank you Lord…thank you…thank you.

Posted (Tina) in All Posts on February-16-2008

Today was a great day for Ella.

She kept me up all night which was not fun; she was just restless. Finally at 6am, I gave up and moved her out to the living room, food pump still attached because she was still on her continuous feed. After an hour or so, she decided that she was tired. So, she took to her play crib and I opted for the couch. Of course, Daddy was still snoozing. I figure that one of us should get sleep and since he has been burning the midnight oil so much for his job, I suggested that he sleep in the guest room to maximize his zzzzs.

Around 11am, Nurse Marla came over to visit with Ella. At first, Ella was snoozing. Remember that since she didn’t sleep that well last night, she was taking the opportunity to catch up on her beauty sleep. Finally, I woke her up so she could visit with Marla. They had a great time together.

After Marla left and it was time to feed Ella, I just decided to try bolus feeding again. If she could handle 45ccs via bolus at the hospital on Friday when we were in a pinch, why couldn’t she now? The only difference was that she had not eaten for hours on Friday whereas today, it had not been that long since a feeding.

Ella was asleep so I figured it was an optimal time to try it. If her body was going to be in discomfort, it would wake her up since it has done that in the past. I tried 25ccs and it went fine. I was elated. From there, I decided to try 45ccs the next time, figuring that the hospital experience was worthy to use as a sample of her tolerance.

Once again, it went fine. I was so happy. To try and catch up on her volume for the day, I was doing a bolus feed about once per hour, so I could catch her up on calories. There was only one time where she was wide awake and did not seem to tolerate it towards the end of the bolus. After some backed up into the syringe, I decided to clamp it off and remove the discomfort. I saved that food for later and just went with the amount that she tolerated.

Realistically, this problem has been intermittent so I realize that at any point, she could retch hard and decide to not tolerate the bolus feeds. But at this point, I think it is worth pushing through and continuing to try especially since we have confirmed that she does not have any blockage or obstruction.

We are going to try bolus feeds tomorrow too, more frequently throughout the day and see how it goes. As I am sure you can tell from the pictures, she looks so good; it is truly the feeding issue that is holding up her recent progress. Please pray that Ella will make it with flying colors and that she will not experience any discomfort.

We have not been able to schedule occupational therapy since her feeding regiment has been disrupted (the main thing that they try to do is teach oral feeding skills). So please pray that we can overcome this feeding issue and that she will continue to gain weight. She is small for her age and gaining weight will only help her get stronger.

We have not heard back on her blood lab work from this past Tuesday. We consider that it must be in the ranges that Dr. Kays wants otherwise we would have received a phone call.

As a side note, the cat has been a bit jealous since Ella came home from the hospital.

I just found out today that a CDH baby that was born in Denver past away a few weeks ago. It made my heart heavy. Since I have not talked to them recently, I don’t want to name any names, but if you think of that family, please lift them up in prayer. As many of you know, I strongly believe that Ella would not be with us today if we had stayed local in Denver.

2 Corinthians 1:3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

Please pray for direction from the Lord concerning any involvement in education and awareness for CDH. If we are to be used in any way to help get across the message to the medical community about this birth defect, we want to be obedient. It just seems that the message out there is automatic 50% chance of survival and they try to promote termination up to the 24th week of pregnancy. And hearing stories of countless babies that do not survive needs to change as well. There is not a standard way to treat CDH, but we feel strongly that the track record for Dr. Kays speaks for itself. He is the best that is out there for treating this birth defect with an overall survival rate of 92%.

We’re so thankful that the Lord provided a way for us to come to Florida to have our baby girl. It has been tough to be away from home, but we can’t imagine it any other way.

Posted (Tina) in All Posts on February-15-2008

Wow, today simply felt like a long day.

Ella slept really well last night. She went to sleep at 6pm and truly did not wake up until this morning at 7am. Of course, she was restless several times throughout the night when she would realize that her binky was not positioned just right, but I am surprised that she wanted to sleep that long. Tonight might be the same way, since she has been asleep since 6pm too. She had a long day and is worn out.

We were driving at 8:10am this morning towards the hospital to visit the Radiology Department for Ella’s test when my cell phone rang. It was the nurse at Dr. Sarantos’s office letting me know that the hospital could not fit Ella into the radiology department until 10am. At that point, we were half way to the hospital. Also, we were having internet connectivity problems at the apartment and at least the hospital has free wifi, so we kept driving.

Once we arrived, we went to grab coffee and muffins. As soon as he was finished inhaling, Josh put on headphones and started working. He has still been pushing hard to make sure that his project for work is completed.

Our appointment was at 10am but 40 minutes later I felt prompted to ask for a status on the appointment. I was informed that since they were just “fitting her in” to the schedule today, that I needed to be more patient.

Finally at 10:50am, we went back for the initial procedure. They took dye and injected it into her g-tube while we watched it on the screen. They used about 30ccs of dye and it was apparent that her tummy was filling up nicely. When we walked out, Ella was swallowing a lot and hard. This is usually behavior to indicate that she could start retching at any moment. Fortunately, that did not happen and she fought it off as hard as she could.

Every 30-45 minutes thereafter for the rest of the day involved going into the radiology room and being rescanned. They were watching to see how the dye was processing in her belly, then small intestine, large intestine and colon. I had no idea that this test was going to take an entire day to complete, so I was a bit unprepared. In any case, Josh left me to return to the apartment where Cox Communications was supposed to arrive and trouble-shoot our internet issue.

In between sessions, Ella wanted different positions in my arms. Due to the test, we had not fed her any food. The last time she had food was 7am. I thought that she had to be getting hungry but she never showed signs of it. Also, she had her vaccines yesterday, so I thought she would be fussy and running a fever. Thankfully, she behaved quite well and was not running too warm.

Around 2:30pm once they completed another scan, they mentioned that Ella’s GI tract looks good, although the 30ccs of dye had only made it through her belly and small intestine. They wanted to see it go through her large intestine too, before they would feel comfortable noting that she did not have an obstruction of any kind. So, they asked me to return at 4pm. This meant that I had an hour and a half of time on my hands.

So, I went up to the NICU 3 to see if there were any familiar faces. There were 2 of her core nurses on shift – Marla and Kelly. They helped me settle into the conference room to feed her. The only food equipment that I had for feeding was a bolus tube set. I opted to bolus feed since it had been several hours since she had ingested any food. At about 45ccs, Ella started to show signs of distress so we stopped the feed.

Dr. Sarantos called me this evening to give me an update. The radiologist thinks that the balloon in Ella’s new g-tube might be causing a slight obstruction of the food going from her belly into her intestines. I did not take the news too seriously. This is because Ella was having these feeding issues before her g-tube was replaced last week (the Mic-key g-tube uses a balloon whereas the microvasive g-tube does not, yet we were having the feeding issues before the Mic-key tube was inserted).

Dr. Sarantos wants to touch base with Dr. Kays to see what he thinks about the g-tube interference. Also, there might be an antibiotic that could be given in small doses that might help her. Dr. Sarantos is planning to think about it over the weekend and take appropriate action on Monday.

Based on what I saw all day during the procedure, I think it might be a motility issue. It just seemed that it took forever for the 30ccs to go in her belly and be digested by her intestines. Since we have her on a food schedule and are pushing a lot in her belly each day, it would make sense in that the problem is intermittent and that different amounts can cause discomfort, depending on how much is in her belly and/or digested at the time.

Does it mean that maybe the Reglan medicine that she is already on to help with digestion simply needs to be increased? or maybe the timing of administering the Reglan is important? or do we go ahead and give her a different medicine to help things move along? Either way, it feels good that Dr. Sarantos really wants to help. We look forward to seeing how Ella does over this weekend and revisiting with her early next week.

Please continue to pray that Ella will grow stronger and make progress this weekend. Also, that it will be a restful weekend for me and Josh. We had a lot happen this week and need to unwind a bit.

Psalm 44:26
Rise up and help us;
redeem us because of your unfailing love.

Posted (Tina) in All Posts on February-14-2008

Happy Valentines Day from the Bun.

We went to the pediatrician’s office today. Ella had a great check up and Dr. Sarantos agreed that Ella is looking wonderful. She weighed in on her scale at 11 lbs, 7 ounces.

We asked about the vaccines and breaking them up, but they use a combo vaccine treatment so it is not possible to break them out into separate ones. Also, we are not planning to go back to the pediatrician for 1 month, unless Ella has any other issues. And the less visits that we have to make to the office, the better. Right now, it takes 2 people to take Ella to any doctor visits. She does not like the car seat and it requires someone distracting her, and increasing oxygen when she gets too upset.

So, Ella received her second round of vaccines as well as a synagis shot. We will need to return next month for another synagis shot and go back in 2 more months for another round of vaccines.

Dr. Sarantos was concerned along with us about Ella’s feeding issues. She agreed that it does not seem right and that there might be something else wrong. If this was the first time that Ella was feeding, it would be different. But the fact that she was feeding on large volumes for weeks in the NICU and now within the past 2 weeks she is not able to, along with the fact that Ella is getting bigger and should be tolerating even larger volumes of food, stood out as a red flag to her. She had a few thoughts and was going to call and talk to Dr. Kays before proceeding.

When we got home, it had been about 4 hours since Ella had any food. It was time for some medicines as well as food, so I started a slow feeding of 35 ccs over an hour. About 35 minutes into the feed when she reached 20ccs, she pitched a fit. It was not getting better so I stopped the feed and decided to vent her. With all the crying she did, there was no doubt that she had to have air in her belly.

Once I vented her, she was still crying and pushed the 20ccs up into the syringe. Then, she started to relax and the food started to drift back into her belly. Normally, if there is any air in her belly this process will fix the issue. Within a couple of minutes, she started crying hard again indicating that she was in pain.

We went through this back and forth process 4 times with the same 20ccs of food. I was trying to get her to take it since I had given 3 medicines with the food, but she continued to get more and more upset. I had already increased her oxygen to 1 liter to help her through the episode. Yet, it seemed that there was nothing I could do to console her.

Finally, I decided the meds were not that important and just let her push all of it back into the syringe and clamped it off. I yelled to Josh to come down and help me get Ella some more oxygen. He came over and we used blow by oxygen to get her to catch her breath and calm down.

This was one of the worst episodes related to food that we have seen since her switch to Alimentum, especially since we have been delivering it on a slow rate. Dr. Sarantos stated earlier that she doesn’t think it is the food itself; she agrees that it seems like a volume issue.

We called Dr. Sarantos’s office to let her know that Ella just had a real bad episode with 20ccs, even though she had not eaten in 4 hours. When the phone rang again, it was her office calling back to ask us to go to the hospital in the morning to the radiology department. She talked to Dr. Kays and they decided to get a test tomorrow where they place contrast dye through her g-tube and watch how it works its way through her tummy and intestines.

Dr. Sarantos’s initial thoughts were possibly a minor bowel obstruction or gastroparesis (delayed gastric emptying where the stomach fails to pump the food correctly through to her intestines). Given that Ella’s stomach and intestines were completely rearranged during her repair surgery, there is a possibility of either of these scenarios.

Again, it would be different if Ella had never tolerated bolus feeds. But since this is a new behavior over the past 2 weeks, it is definitely something that we want to research. It was nice to be reaffirmed by Dr. Sarantos that this is not a normal progression for Ella considering her history of feeding.

We will be visiting the radiology department tomorrow morning at 8:30am for the test. Please pray that the test will provide insight to Dr. Sarantos and Dr. Kays. We don’t want anything to be wrong with Ella, but at this point, neither doctor knows what to recommend on how to fix her feeding issues unless they get a better glimpse of what might be happening to her.

Either way, this did not dampen Ella’s first valentines day. A few days ago, she received a cute valentine from Par with an updated photo. This made her smile.

Thanks to everyone for your continued prayers for our baby girl.

1 Thessalonians 5:17
pray continually;

Posted (Tina) in All Posts on February-13-2008

Today was a better day for Ella, although she did not sleep well last night. Her and I played the dance from 1am till 7am. It seemed every 15-30 minutes, something was bothering her and she would fuss. That made for a night that did not include lots of beauty sleep.

The positive was that Ella did better today with her feedings. We went back to 35ccs over an hour, 9 times today with a continuous feed overnight for 8 hours. It seemed that she handled it better when she was laying down on her back or if I was holding her in a football position. If I tried leaning her in an upright position, it would place too much pressure on her tummy and she would start to cough and retch. I tried venting her more often and it didn’t seem like she had a bunch of air or gas in her belly so it didn’t gain us much, but it was worth trying.

We were supposed to visit the pediatrician today, but the appointment was rescheduled for tomorrow afternoon. Ella needs her synagis shot and the office was not expecting to receive it in time for the original appointment time today. Since we want to minimize the visits we need to make, it was better to reschedule. Also, Ella will be getting her 2nd round of immunizations. The last time she received these shots in late December in the NICU, she got feverish and did not feel great. I’m expecting much of the same response this time around.

Without much on the schedule today, Ella caught up on her zzzzzzs. Now, Mom and Dad just need to do the same. Josh has been up till 4am the past 2 nights, making sure that his deadlines are work were met. And for myself, I have been up a lot with Ella the past couple of nights and have not been able to take advantage of naps throughout the day.

Please pray that our appointment with the pediatrician goes well. Also, that Ella continues to get stronger and stronger each day.

Posted (Tina) in All Posts on February-12-2008

Today was Ella’s first follow-up appointment with Dr. Kays outside of the hospital.

The appointment went well. Ella looked good and was showing off to Dr. Kays. She flashed him a smile, cooed a bit more than usual and looked good overall.

He sympathized with the feeding issues, but noted that it is pretty common for CDH babies. The recommendation was to continue to tweak it until we come up with something that works for Ella. Her weight gain just by looking at her clinically is decent considering her large dose of diuretics and the scale confirmed it (11 lbs, 5 ounces and 23 inches long), so Dr. Kays is not as concerned about increasing the density of her formula. He stated that we could stay on the 24 calorie Alimentum and try that for the next couple of weeks (not adding any Polycose powder). He is more concerned that she is tolerating the food and steadily gaining weight. We will see what she weighs next time we have an appointment (two weeks from now).

Ella’s g-tube was protruding too far away from her belly and therefore, she grew granulation tissue around the g-tube. Today, Dr. Kays switched it out for a tube that is one size smaller and burned off the extra tissue growth. This is something we have to watch and manage closely. If you allow the granulation tissue to grow and do not burn it off, it can become a problem by causing the g-tube to not function correctly. Fortunately, with the Mic-key g-tube, the process of replacing and burning off the extra tissue does not hurt Ella. She still gave a good cry, but that was just her letting us know that she was not enjoying the party.

We asked about Ella’s stuffy nose and Dr. Kays recommended just “dealing with it”. There are some medicines on the market for infants with cold or flu like symptoms, but recent studies indicate that using these remedies have negative long term impacts for babies which is why some of them are being removed from the market. With that in mind, Dr. Kays tends to be more traditional and old-fashioned. Simply continue to use saline drops and wait for the best!

We had to have blood drawn for labs. Fortunately, the nurse practitioner who knows Ella real well checked out the employees between the pediatric clinic and the lab draw downstairs to assess who would be the best to draw blood from Ella. She liked the ladies working downstairs in the lab, so she sent us downstairs after our appointment. They were terrific. Josh, myself and one nurse assisted in holding down Ella while another nurse drew the blood. So, how many people does it take to successfully draw blood from Ella? Four adults sounds about right.

We were able to pick up our car from the repair shop from our accident 2 weeks ago. It is nice to have our own car back in our possession. One thing that is amazing: there was damage to the radiator floorboard which is a special part that is on shortage and the part has to come directly from Germany. There was only one of them that fit our car in the entire country right now and it was in a mechanics shop in Gainesville. Apparently, two other VWs came into the repair shop after us that also need this precious part for their vehicle, but it is going to take 2 months to get one in from Germany. Wow!

We have an appointment with the pediatrician tomorrow and Ella is supposed to receive her 3rd synagis shot. She will get one more in March too and then will have a break until next winter starting in November. It will be good for us to see Dr. Sarantos since we haven’t seen her since Ella was re-admitted to the hospital. Hopefully, we can make it back home accident free this time!

Ella is still struggling with the volume of food. The past 2 nights she has woken up during the continuous feeds due to discomfort. Even during the day while we feed her 35ccs, she ends up getting discomfort at varying degrees. We are trying to avoid having her connected to the feeding tube 24/7, but it is not looking good at this point.

Please pray that the Lord would provide wisdom and guidance to myself and Josh. Basically, we are in charge of figuring out a plan to make sure that she intakes 550ccs each day and how we get that accomplished is up to us (Dr. Kays doesn’t care how we do it). We just want to make sure that she gets it with as little pain or discomfort as possible. But as all of you can imagine, it is tough enough to be connected to oxygen much less a food machine all day and yet still try and do regular things like give Ella a bath, so we want to strike the best balance possible as we get her through this challenge.

Thanks for all the continued thoughts and prayers. The support from all of you has been incredible.

Posted (Tina) in All Posts on February-11-2008

Yes, Ella had her first playdate tonight…and guess who? Par came to visit Ella. He came into town for a check-up with Dr. Kays and decided to stop by for a visit.

It was really nice to see Liz, Rusty and Par. We all became so close in the NICU; it had felt like an eternity since we had seen them. That is one benefit to staying in Gainesville during this season: we get to meet and visit with some other CDH families that come to town to see Dr. Kays.

Another thing that was so nice – – Liz brought a supply of breast milk for us. When we talked about it the other day, I explained to her that Ella could not be fed on breast milk exclusively right now simply because of the fluid issues/concerns, however we would like to start training with oral feeds. It would be great if I could use breast milk for the training. So when Liz came from Birmingham today, she brought some of her supply with her (more than I was expecting).

We had another visitor this afternoon. Nurse Janet came by and visited with Ella for about 1.5 hours. This freed up my time to go get the mail and go to the grocery store. It was so nice to get outside and have a little bit of fresh air.

Speaking of fresh air, Ella had a stable day on her slow feeding regimen. We’re so thankful that feeding slow is working. We did have one issue with her last feed tonight at 9pm. She started fussing a lot and Josh said that it seemed like there was pressure in her belly. We stopped the feeds early and vented her tummy. By that time, she was so upset that all the food was pushed up into they syringe. Finally over time, she relaxed and it all went back in.

Our first follow-up appointment is with Dr. Kays tomorrow. We will be reviewing our feeding challenges as well as our concerns with her g-tube.

Please continue to pray for Ella and her strength. Also, please pray for wisdom and guidance for Dr. Kays so we can figure out these last couple of mysteries related to our baby girl.

Psalm 105:4
Look to the LORD and his strength;
seek his face always.

Posted (Tina) in All Posts on February-10-2008

Thank you for the continued thoughts and prayers. When it seems that God is silent, He still wants us to seek Him.

Ella had a much better day. Although inconvenient, we decided late yesterday that we would try a slow amount of food over longer periods of time. Basically, we are giving her 35ccs 9 times per day over an hour each time and a continuous feed at night of 235ccs for 8 hours. This means that she is connected to the food pump pretty much all day and night.

This seemed to work for Ella today. She did not retch and did not have episodes where she was uncomfortable due to her feedings. She was behaving more like herself – – smiles and all. Praise God that something worked! In this way, it definitely seems that it is not the food itself causing discomfort but a volume issue.

Keep in mind that this behavior concerning food still seems strange for Ella. I think all of this would make more sense if Ella was just gaining a tolerance for food. Yet, she worked all the way up to bolus feeds in the NICU and was fine when we left on January 25, 2008. Even prior to bolus feeds which she conquered in mid-January, she was taking 60ccs over an hour during the day. Yet, it doesn’t even seem that she can do that anymore. So, it seems we are progressing backwards and doesn’t make sense based on the progression of events.

This is part of what makes it more of a mystery. Many CDH babies have trouble with feedings. But it seems strange that 2 weeks ago, she was fine with bolus feeds and now she isn’t.

Another thought concerning Ella’s intolerance of food this past week was the density of the food. We started with 20 calorie Alimentum and used that for 3 days. Starting today, we used 24 calorie Alimentum formula and will do that for another day. From there, we will slowly add calories with polycose powder, so we can achieve our goal of 28 calorie formula.

We are enjoying the mechanics of the Mic-key g-tube, but think that Ella may have a size that is too big. When we see Dr. Kays on Tuesday, we will be asking him to take a look and possibly consider a smaller size (it projects off her too much).

After listening to Dr. Charles Stanley this morning, I was reminded that when God is silent we are always worried that He is absent. Yet, we have His promise that He is never absent from us. That silence, is a reminder that we long for Him, that we hunger for Him, that we thirst for Him.

God knows what is on our hearts. He just wants us to pour ourselves out before Him. Please join us as we seek and cry out to the Lord for Him to reveal wisdom to solve Ella’s mysteries.

Psalm 102:1-2
Hear my prayer, O LORD;
let my cry for help come to you.

Do not hide your face from me
when I am in distress.
Turn your ear to me;
when I call, answer me quickly.