Yes, this is really the tag line from Taco Bell, but when it stared at me from the TV yesterday, I couldn’t help but laugh and realize that we do need to think outside The Bun!

As Josh wrote on the prior post, Ella had a stable night where she rested for most of the night. That is so good. She needs that sleep to fight off whatever cold/virus that she has right now. And although Ella does not like the concept of an isolation room, since she is a social butterfly, it does make for a much better sleep environment. It is quiet with light, sound and temperature control. With her fan keeping her cool and the tunes of her CDs going, she slept really well.

We will be in the isolation room for another day or so, at a minimum (assuming that she tests negative for RSV). Then at that point, it will depend on space in the NICU unit. Although I can tell you from looking around, it is very quiet up there (that is good news for other parents and for us).

We are anxious to see Dr. Kays to get an update from him on the plan. So far, they were able to wean Ella back down to 1 liter of oxygen throughout the night and she is stable and behaving more like herself. This is extremely reassuring.

Also, for those of you that have been watching on a regular basis, Ella is getting stronger. Each time she has one of these set backs, it is taking less and less time to get her back to a stable place. Praise God!

Thanks for the continued petition to our Lord on our behalf. All of you are an amazing source of support during the storm.

Colossians 4:2
Devote yourselves to prayer, being watchful and thankful.

UPDATE 4:15PM EST: The Bun is looking stable at the moment. Since the last post, her oxygen was weaned 2x down to 800ml. She is sleeping soundly and maintaining a saturation of 95 or greater, with a heart rate of 160-170. This is a huge improvement from yesterday.

They have decided to try and keep her comfortable, slowly weaning the oxygen as she tolerates with the goal of getting down to 500ml. She seems to be taking steps in the right direction.

They are not planning to give her lasix via IV today unless she begins to show signs of respiratory distress. Instead, she is still on the bumex 3x per day at a dose of .25mg as well as the diamox once per day.

The weekend crew is more interested in keeping her stable and moving her back to her baseline, rather than coming up with a new plan. Dr. Kays was supposed to be around this weekend, but it turns out, he has not been around the hospital. It looks like we will have to wait until tomorrow to get a better idea of what the next steps are for Ella.

The good thing is that Nurse Marla, who knows her very well, has been taking care of her today. We are not sure who has her tonight, but it will be key to keep a close eye on her.

Here you can see that she is starting to be herself again…she was checking herself out in her mirror and stopped to give me a peek.

The numbers really say it all. Heart rate: 207, SpO2: 86, Breaths: 80. Even right now, she is at rest sleeping and her saturations are 82 and her breaths are 110. She is on 1 liter of oxygen (the most available). I have not seen these kind of numbers in a very long time. Although she has a cold of some sort and her nose is congested (making it tough to breathe), I don’t think it accounts for this much strain on her system.

Dr. Kays has been notified. First, he ordered a chest x-ray. Once he takes a look, they may decide to give her lasix. Since she does not have access via IV, they would have to give it IM (intramuscular) which is somewhat painful. Poor Bun!

In addition, Dr. Kays stated that we can either increase her diuretic input or decrease her fluid intake (food). For now, he has ordered a decrease in food intake (58 ccs during the 5 daily feeds and 20ccs continuous for the 8 hour feed at night).

In the meantime, we are just sitting by her bedside and praying that she will remain comfortable during this latest challenge. Thank you for all the love, prayers and support at this time.

UPDATE – 3:00PM EST (by Josh):
We didn’t think she missed it that much, but we’re back in NICU 3. Since our last post, Ella continued to show signs of respiratory distress, and had a major event in NICU 2. She couldn’t catch her breath and required blow by oxygen just to bring her back up and calm her down. After getting her up to 3, she had another event that even took longer to recover.

Once she was stable, Tina and I consoled her while nurse Kelly placed an IV in her foot. They got the Lasix on board and hopefully Ella will continue an upward trend. If not, she may need to be put back on CPAP or re-intubated. At this moment she’s on 3 liters of O2 (1 liter is the maximum they give in the NICU 2).

They also have us in an isolation room, the same one we were in a couple months ago. Last time we were here just for the space. This time though we are taking extra precautions, just in case she does have some respiratory virus. They’ve taken a swab of her nose to do some analysis which normally takes 48 hours. Because of that, we also get to dress up in yellow gowns, masks, and gloves.

Thanks for the continued prayers.

UPDATE – 7:00PM EST (by Tina):
Ella has stabilized. She is still dealing with a virus of some sort with the largest symptom of a runny nose and overall congestion. But, she is in the NICU 3 and being monitored more closely.

Her oxygen was weaned to 2 liters and they will be trying throughout the night to see if she can tolerate less oxygen. The goal is to get her back to 500ml of oxygen.

The increased oxygen and dose of IV Lasix has helped and we are hopeful that she will not need to go back to CPAP or be re-intubated.

We can sense that she is feeling better. We were shifting her positions and Nurse Kelly started talking to her. Ella probably recognized the voice and thought the mask looked silly, so she gave a few grins.

One thing is for sure: she has perplexed everyone. No one has ever seen a baby have a tough switch from IV diuretics to PO diuretics, even with increased dosages. But there must be something…

Thanks for the continued prayers.

UPDATE – 10:30PM EST (by Josh):
We left Ella tonight and she was sleeping comfortably on 2 liters of oxygen with saturations at 99-100%. We hope to hear from Dr. Kays tomorrow about the next steps.

Thank you again for continuing to lift our baby girl up in prayer. Praising our Lord for the fact that He is in complete control.

Sleep well Ella Renae.

UPDATE – 5:00AM EST (by Josh):
Just called to check on Ella. She slept solid from the time we left (10pm) until 3am this morning! Her numbers looked like her normal baseline too (heart rate: 145-150, SpO2: 100%, breaths: 45-50). She’s also been weaned down to 1 liter of O2. Nurse Amy with the help of another nurse suctioned her when she started to stir, and got a lot a stuff out. Ella settled right back down and is behaving more like herself.

If there’s anything to learn about this, Ella just wants what she wants. Give her what she wants, and she’s happy. I can already see a pony in our future, and I’ll be praising God every time we have to pick up after it. 😉

 
Thank you Jesus for this restful night. Thank you for your peace, mercy, and grace. You are an awesome God and your name is above all names. We praise you in all things and desire to be obedient to you. Thank you for showering us with all these blessings and the love of so many others from around the world. You are a mighty God, worthy of our praise. Thank you Jesus! Amen

Ella does not look good.

When we visited late tonight, she looked puffy. Her oxygen was at the highest flow on the nose cannula at 1 liter and her saturations were low to mid 90s. Also, her breathing looked slightly labored. She had weight gain of 50 grams which is high and indicative of fluid retention.

Dr. Kays came by earlier around 5pm and her oxygen was at 800 ml – he thought that was too high for her, so he began questioning the nurse about why it was set high. He wants her to be able to maintain at 500 ml or below. If she isn’t, something is wrong and she is headed down the wrong path. Since he didn’t think she looked that great (she looks worse now), he wrote an order for an additional dose of bumex (.25 mg every 8 hours).

We’re hoping that when she receives the additional bumex at 2am, that it will do the trick. Fortunately, Dr.Kays is around this weekend and we hope to see him at some point.

Please pray for our baby girl. It’s so hard to watch her struggle to breathe. The Lord knows just what it will take and we need His wisdom.

Proverbs 2:5-7
Then you will understand the fear of the LORD
and find the knowledge of God.
For the LORD gives wisdom,
and from his mouth come knowledge and understanding.
He holds victory in store for the upright,
he is a shield to those whose walk is blameless.

Wow…it is amazing what a difference a day can make.

Thank you so much for all the specific prayers for the meeting today along with all of Ella’s recent needs. I feel that today is when we really felt the answers to our prayers.

When we called this morning, Nurse Marla was assigned to Ella. That was an answer to prayer. It was so comforting knowing that she could be there for our girl.

Surprisingly, Ella seemed as though she felt much better today. The one difference is that Marla hunted down a fan that she placed in Ella’s bed during the day. Since Ella runs warm (like her Daddy), she thinks that made a difference for her. She was running a temperature in the morning, but it was gone by the afternoon.

They’re beginning to think that it’s some kind of virus again. Maybe the symptoms returned after they stopped the antibiotics in the middle of last week. It is hard to tell what is causing her intermittent discomfort. We are hoping her good day today turns into a good night.

A huge praise: they were able to perform the EEG that they wanted complete. If you remember, they tried this about 2 weeks ago while Ella was not feeling great and had a nurse that didn’t know her, and the test did not work. Ella got worked up. This morning, she had Nurse Marla there with her. Although she fussed slightly while they were putting on all the gear, she settled down and dozed off. Then when she woke up, she gave a huge smile to Nurse Marla (above).

I love that picture – – it shows the true essence of Ella’s personality and spirit. She is such a trooper.

We were anxious for our meeting this afternoon. Once we arrived and visited with Ella a bit, we received a message that Dr. Kays was tied up in surgery and would not be available for awhile. It was around 4pm when all parties gathered.

Praise God – – the meeting went better than expected in many ways.

First off, they reported that Ella had an echocardiogram last Friday and the results were back. She has no pulmonary hypertension. High blood pressure in the arteries that supply the lungs is called pulmonary hypertension (PHT). The blood pressure measured by cuff on your arm isn’t directly related to the pressure in your lungs. The blood vessels that supply the lungs constrict and their walls thicken, so they can’t carry as much blood. As in a kinked garden hose, pressure builds up and backs up. The heart works harder, trying to force the blood through. If the pressure is high enough, eventually the heart can’t keep up, and less blood can circulate through the lungs to pick up oxygen. Pulmonary hypertension is a common side effect for babies with congenital diaphragmatic hernia (with everything Ella has been through, we expect that she would have it). Actually, she showed signs of baseline pulmonary hypertension early on, but as she has grown and developed, the latest echocardiogram shows that it is not present. We consider this a true miracle that she does not show signs of any pulmonary hypertension (you could tell that the news was surprising to all the medical staff involved).

Secondly, we were already told that her MRI done in the previous week confirmed brain damage. But they told us that a baby’s brain function is not localized. As you age, the areas of the brain do localize and settle in specific areas that provide certain functions. Because Ella’s brain function has not localized, her brain still has the opportunity to move these functions to other areas of the brain. Only time will tell.

However, they had ordered an EEG to see how her brain was functioning and whether or not she was having continued seizure activity. Based on Ella’s behavior, our interactions with her, and the opinions of the NICU staff, she was showing a lot of positive signs. But we didn’t necessarily expect the news we received: the test came back indicating normal brain function.

The results from the MRI and EEG give us hope that Ella has the capability to be an independent woman some day. This is not a guarantee that Ella will not have some struggles or deficiencies. However, we know that God made her in His image and that she is exactly who she is supposed to be.

Next in the meeting was one of the things that we were most anxious about: the big debate on next steps. As of Friday, we were told that the neonatologist, Dr. Drummond, had huge concerns about her central line still being intact, since the recent CT scan showed that her IVC was partially collapsed. She would like it removed as soon as possible because of the risk of infection and clotting. On the other hand, Dr. Kays wanted to go in through her central line and the partially occluded IVC and try ballooning out her SVC. We know that when they tried ballooning her SVC before, the risks were high. Back in late August when they tried, it did not produce any gains for Ella. We were surprised that Dr. Kays would want to try now considering that the risks are incredibly high and it did not work the last time.

The Lord used this past weekend to give us a sense that “less is more” when it comes to Ella. Normally, we would trust anything that Dr. Kays recommended, but we were not feeling prompted to go through with an aggressive procedure. Now if Ella’s MRI showed that she was suffering from hydrocephalus or was in any imminent danger from not doing this procedure, we may have felt different. So already before the meeting took place, we felt in our hearts that we knew the answer. This meant that Dr. Kays was going to need to be very convincing.

It was interesting because Dr. Kays took the approach of an open conversation whereas up till this point, he normally comes off very strong about why we need to move forward and complete a procedure. He proceeded to explain his perspective, but when it came down to it, he could not necessarily “recommend” the procedure. You could tell and I verbally asked him to verify that he did not have a conviction 100% that this was the direction we should go with Ella. Once all the information was laid on the table and Dr. Kays admitted that it was risky (she could die) and that there was no guarantee that she would get any positive gain from the procedure, it made our decision easy. This is what we prayed for specifically: wisdom and discernment. We wanted the right answer to be very obvious. (The nurse practitioner later mentioned that Dr. Kays was totally different today. Last Friday, he was insistent that the procedure should be done).

We moved on to discuss Ella’s next steps. We decided that we need to switch her diuretics over from IV to being administered via the g-tube as a priority. Although the CT scan shows the IVC is partially occluded and Dr. Kays thinks it is not in an urgent state, he agrees that it should be removed sooner versus later. The plan: starting tonight, switch the diamox to be administered via g-tube 1x per day and lasix via g-tube 3x per day at a dosage of 10. Last Friday, half of her lasix was delivered via g-tube and as of today, she was not showing signs of respiratory distress. As of tonight, all of her diuretics will be administered via g-tube.

They have tried this 2 other times with Ella and each time, she has gone into respiratory distress and her lungs begin to collapse on her (they get too wet). Remember that although the meds are the same, your body responds much different to a medicine via IV versus orally. It is no different for Ella. We need specific prayer that she will be able to tolerate this change. This is a necessary accomplishment in order for her to come home with us.

We realize that the dosages and types of medicine may not be the sweet spot for Ella. This may take some time and tweaking before we get it right. In the mean time, we need prayer that any signs of distress will be discovered quickly so that Ella does not have to endure any more than is necessary. Another blessing: the next several days will be critical to see how Ella behaves clinically to these changes and Nurse Marla offered to take care of her (she is supposed to work in the NICU 3 the next 2 days, but offered to work in the NICU 2 to take care of Ella instead). This means that Ella will have a favorite nurse and Marla knows her so well, that she will be able to tell if Ella is behaving differently in any way. This is key to having this change/transition work well. Please pray that Ella can tolerate this next step.

Once the diuretics issue is resolved, we will need to discuss food before Ella can come home. Portagen is not a complete nutritional source of food for an infant and so we will need to switch to a better formula. Standard formulas are rich with fatty acids which are key for infant development, but also caused Ella’s chylothorax to act up when it was initially given to her back in August. If all goes well, the soonest we can try any changes with her food would be next week.

All in all, we thought the meeting was going to be harder. We expected the worst and were so surprised with such great news. It feels like the first time that we have ever been given good news, or news that surprises the doctors. Most of the time, it has been tough, hard news. Ella has gone through so much, she is not textbook and is extremely complicated, but she is a blessing. We are so honored to be her parents.

Thanks again for lifting up all 3 of us to the Great Physician. Although the coming days may have its ups and downs, today was a day of refreshment. It was really needed and we thank Him for the peace He has given us. One look at that smile above and all this pain and anguish is sure worth it. We can’t imagine a better place to be.

We love Ella Renae and thank you for loving her along with us. God Bless.

Today was a tough day, for Ella and her parents.

We called in to check on her this morning, only to find out that she was having another rough morning since 4am. They switched the continuous feeds to 30 ccs/hour on Friday night and since then, she has not responded well (continuous feeds go from midnight till 8am). Nurse Janet stated that she seemed uncomfortable, was retching and gagging (basically doing everything except throwing up because she can’t since her nissen surgery).

When she coughs and retches hard, it is like dry heaving which cannot be comfortable, so it makes her upset. When she gets real upset, she can’t catch her breath and that scares her, so then it becomes a vicious cycle.

Thank God that Nurse Janet has her tonight again. We have requested that they consider lowering the food volume back to 25 ccs/hour, to see if that makes any difference. We’re not sure if that will happen or not.

Maybe her tummy is just getting too full and is not ready to handle the additional volume. If that is contributing to her discomfort, I can’t imagine a worse feeling without a way to get rid of it. Plus, she has been having intermittent fevers and an elevated heart rate. Today it was 180 at rest and up to 220 at times. Later this evening, her stools were loose.

All of this has made her extremely irritable and fussy throughout the day. She is trying to let us know that she is not feeling well and is having some discomfort, but no one can figure out what that is exactly.

Aside from the change in food, they changed her evening dose of lasix to be administered via her g-tube on Friday too. Her elevated heart rate and lower saturations have been indicative of respiratory stress in the past. So, this has also been considered as a possibility.

It is weird – – she will be content while you are holding her and out of no where, she will start crying really hard. You will switch positions or try something else and she is fine for a few minutes, and then she will get unhappy fast. So, it almost seems like whatever is happening, the pain comes on suddenly.

Today, they tried giving Tylenol a couple of times to see if that would ease discomfort. Also, they tried increasing her oxygen to 1 liter – – that did not seem to make a difference. The nurse tried venting her g-tube more often (before as well as during the feedings), thinking that might ease her if she is having tummy discomfort. But she reported that it would work well for one feeding but then didn’t seem to make a difference when she tried it later in the day. They looked at her gums again to see if she is teething as well as her ears for a possible ear infection. They just are not sure what to make of all of it.

They took a chest x-ray in the early afternoon. The good news is that Dr Saxonhouse reported that it looks better than her last chest x-ray on 12/31/07. So maybe she is not having respiratory distress and that she is tolerating the lasix being delivered via her g-tube. Her urine output was excellent yesterday and is in line with what it was when she was only on straight diuretics via IV. This is a promising sign. Please pray that she can continue to tolerate the lasix via the g-tube without any compromise to her lungs. If she can tolerate it, we would like to have more of her diuretics administered via the g-tube as the week continues, so we can remove the central line.

Ella is due to have labs in the morning. They will check all her electrolytes and it will let them know if they need to adjust anything else for her, including her diuretics. As a side note, Ella weighed in at 10 bs, 8 ounces last night, which is good weight gain for her and a good sign since her urine output is high (not likely due to fluid retention).

Finally, she is scheduled to have an EEG. Please pray that she will tolerate the test. We are looking for the results to give us a better idea of how her brain pathways are working. The idea was to have the test completed early in the morning, so the results will be available by the time we have the meeting with all the doctors at 3pm. Remember that she has already had an MRI, but they want the EEG to balance out the test and give them more information, so they can give us an accurate diagnosis. Because they can come to the bedside to administer the EEG, we were hoping that Ella would be assigned to a nurse that is familiar with her. We expressed our concerns and so it looks like Nurse Marla might have her, which would be great.

In between her fussy spells, Ella was still being herself, as seen above. I think the smiles were good medicine for us, as we are feeling raw emotionally. It was as if the Lord delivered them at just the right time, to let us know that He is still in control and that Ella will be okay, no matter what the circumstances look like from the outside.

Please pray specifically for these things:

• they will figure out the source of Ella’s recent discomfort
• she can continue to show signs of tolerating her diuretics via her g-tube instead of IV
• that the central line does not cause any infection
• that her IVC although partially collapsed will not incur any further damage
• that the meeting tomorrow at 3pm will go well and that the Lord will give us wisdom and discernment for the best next steps for Ella’s care
• that He will strengthen and renew us – – we have felt weary the past few days

 
Thank you for joining us on the journey. We appreciate each one of you that has lifted us up to the Father.

Ella had a GREAT day.

Nurse Marla was scheduled to be in NICU 3 and traded places so she could take care of Ella. That was so sweet!

This was especially important because Ella was going to get her CT scan today. We were nervous about it simply because we could not be there with her and she would definitely not do as well being transported for a test with someone that she didn’t know.

The CT scan went fine. Here again, a great thing that Marla was taking care of her. They went to wheel her down to radiology and Ella wasn’t excited about hanging out in her crib and being wheeled (she started to fuss). So, Marla picked her up, placed her on her shoulder in one of Ella’s favorite positions, and walked her down to radiology while they wheeled the crib and oxygen. Ella was fascinated by the surroundings. That was a first for her. Anytime she has left either NICU, it has been laying flat in her bed. I am sure the view from a shoulder is much more interesting.

In the radiology room on the table, they have an airbag that they inflate around Ella’s body to keep her in place. Apparently, this is a new piece of equipment to help her remain comfortable and still. Ella sucked on her binky throughout the procedure and behaved well. She started to fuss at one point, but by the time they called Marla to the rescue, she was happily sucking on her binky again.

We don’t know the official results of the CT scan. The nurse practitioner or a doctor has to be present to discuss the findings and the only person we communicated with today was Nurse Marla. She gave us as much information as she could about how Ella did during the procedure and how her day went. She did mention that the radiology technician was having a tough time flushing the CVL (central line) with contrast fluid to test it. Then, he loosened the tension at the CVL site, and apparently the flushing became easier.

When we visited late tonight, Dr. Saxonhouse was in the NICU and mentioned some concern over her CVL in passing, based on the test results. So although we do not have details, we are not expecting good news about the line. This probably means that the functionality of the CVL might be ending soon. Since Ella is reliant on her diuretics via IV, this poses a problem! We are anxious to get a full update, hopefully tomorrow.

When we arrived tonight, Ella was sleeping. She had been taking a solid nap since 4pm. She looked great – – her heart rate was finally down to 135-140 with her saturations pegged at 100 (that is normal for her when she is sleeping and feeling good).

Finally at 8:30pm, we woke her up and assisted Nurse Traci with the hands on. She weighed in at 10 lbs, 3.7 ounces. Her weight is definitely up, even from yesterday. We are not sure if all of it is true weight gain or there is some that might be due to fluid retention. Either way, I feel confident that she is around 10 lbs. That is great weight gain for the Bun!

Once Ella woke up, she was all smiles. Even though she had never met Nurse Traci, she was enamored. All she could do was smile and look around. We have not seen her this happy or pleasant in a long time. Some days she might have small moments where she would break out a smile, but this was like 30-45 minutes straight of smiles and grins. Plus, Marla stated that she was this way during the day too. This is such a good sign – – it just means that she is feeling really good. Her stats show it and you can feel it just by looking at her.

She is back to where she was at the week before Christmas…hopefully even a little bit stronger now. Tomorrow should bring more information on the next steps for Ella. We are not sure if Dr. Kays will want to tackle the food challenge or the diuretics. Either way, we are pretty sure that we will probably be having some discussion regarding the central line.

We thank the Lord for our beautiful baby girl. We praise Him for His wonderful creation of Ella. We can’t believe we are her parents!

We submit in reverence to Him and His plans for our life and hope that we can listen and obey regarding what He wants us to do.

Proverbs 3:5-6
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.

Ella was a tired girl today.

It was my last day off before returning to work after the holiday break. So, I was looking forward to spending time with my girl. Unfortunately, she was simply tired and needed more beauty sleep.

She was probably awake for a total of 30 minutes during the day. I even drove back to the hospital and tried to catch more awake time (apparently she was awake between 7pm – 8pm), but by the time I arrived, she was snoozing again.

Nurse Linda who is taking care of her tonight thinks that she is still catching up on her sleep from the prior days where she was running a fever and not sleeping well. Either way, she is still cute as ever!

The only change today was the discontinuation of her antibiotics (since the CBC and blood culture test came back negative). The plan is to have her go for her CT scan tomorrow. She is scheduled to have a nurse that she has never met before. That does not sound like a good combination, so we will pray that all this sleep provides for a pleasant and more tolerable Ella Bun for tomorrow.

Again, the main issue is switching her diuretics from IV to administering it via her g-tube. Also, each day the central line is getting tougher to flush. We hope that it will last as long as we need it to, but there is concern that its last days are around the corner. Unless we come up with another plan for Ella and her diuretics, this might be a problem.

Also, we want to try to switch Ella to breast milk and then a different type of formula to give her better nutrients. However, we need to make sure that the change over does not cause any fluid build up.

Once complete, we are anxious to hear the results of the CT scan. While doing the scan, Dr. Kays will look at the SVC to see if it is still collapsed. Also, he will take a look around her pleural cavity to see if there is fluid accumulation or what might be occurring to prevent her lungs from getting stronger. Finally, he is going to check the central line, to ensure that it is still functioning and can remain in place for a longer period of use.

As of Tuesday morning, Dr. Kays wanted to make sure she had a couple of solid days before he started changing any variables. It will be interesting to hear his perspective on what we should tackle next.

Please pray specifically for his wisdom and discernment. Ella has proven to be quite the challenge and not textbook in her recovery.

Considering all she has been through as well as her age, we want to choose the right path for her, so we can get her home. We think that being at home with consistent care and a better environment will help Ella recover quicker.

Thanks for all the thoughts and prayers. We look forward to what the Lord has in store for 2008.

The Bun spent another day on the hot side. Her heart rate continues to be 20-30 beats faster than normal. She was irritated, crying and unconsolable at times throughout the day.

We are still waiting for the final blood cultures to come back to confirm whether or not she has an infection (maybe from her central line). Since the initial CBC came back okay, they are thinking that she might have a virus instead. A new symptom today was loose and discolored stools. This is the 3rd day that she has been warm and not feeling great.

Thus far, they do not think it is teething. Please pray that Ella’s little body can fight off whatever has entered her body.

On a positive note, her lungs seem to be healing well. Dr. Kays came by to see her and weaned her lasix back to 2x per day via IV and the oxygen flow at 500ml. This is where she was at early last week, the last time she was stable. She has a chest xray scheduled for Tuesday morning to assess her progress. Please pray that her lungs do not show any signs of atelectosis.

We are so in love with our baby girl. We just want to spend all our waking hours with her. Please pray for our endurance for these last few challenges. The hospital routine is getting tougher as the days pass.

We know that God is in control of her progress and the timing of her coming home. That is how we make it through each day. But we need to seek Him constantly to have that peace. Pray for our endurance as well as Ella’s.

Thank you for all the love and support.

For some reason, Bun did not sleep that much last night. This morning, she was wide awake and had a great time with Nurse Andrea. About noon, she became fussy and overtired. Also, she had a slight fever most of the day (temperature of 100). While she had the fever, her heart rate was elevated to about 180-200.

Finally about 6:30pm, I was able to get her to a solid sleep. The good part is that once she really fell asleep, her heart rate dropped to around 150, which is more normal for her. That was the first time I had seen that all day.

I’m not sure why she had a fever today. We will see how she does overnight and whether or not it was a fluke (there was a time before when she was getting unexplained fevers).

Besides the fever and being overtired, Ella’s saturations looked great today. They were pegged at 100 solid all day. This means that her lungs are feeling better. She stayed at 750ml of oxygen.

Dr. Kays came around and asked about her progress. She is still fighting off the fever, so he opted to leave everything as-is for now. He mentioned that she is supposed to have labs again in the morning. If she is looking more like she was before this recent set back, he may look to wean her oxygen again.

Par made it home safely last night and Ella is missing him! She even put on her cute bow tonight, hoping that it would lure him back. It didn’t work, but at least we enjoyed it.

We are so excited to take the Bun home some day. Please pray that day will come sooner versus later. We think she will make so much more progress in the home environment versus the hospital.

Thank you for your continued prayers.

Praise God – Ella’s chest xray was much improved this morning and her labs from later in the day checked out well.

The convert of the lasix to IV seems to have worked. Ella was on 1 liter of oxygen until about 6:45pm when Dr. Kays came to check on her and decided to wean it to 750ml. If she can continue to improve over the next 24 hours, he will look to wean it down to 500ml.

Her feedings of Portagen (30 calories per ounce) at 120ml/k/day continue. They are infusing feeds over 1 hour, 5 times per day and continuous g-tube feeds for 8 hours at night. Venting the g-tube is still at 10 minutes prior to feed and 30 minutes after the feed. If she can continue to improve over the next 48 hours, Dr. Kays talked about a slow introduction of breast milk with the Portagen. This would be really good for Ella to get the nutrients, so we hope that her body can tolerate the breast milk (in the past, it caused issues with fluid accumulation around her lungs).

Most of the day, Bun was sleeping. For whatever reason, she seemed tired. But it was still nice to spend my day bedside and rock her while she was resting. And of course, the awake times where I caught a grin or two made all my worries seem like nothing.

By the time I reached the NICU, Par had left for home in Birmingham. Ella misses him already, but he will be back in 6-8 weeks to see Dr. Kays for a visit. We look forward to that time.

Thanks for all the thoughts and prayers for our girl. She continues to take small baby steps in the right direction. And of course, each day she is a clear reminder of how we always need to look to Him for our needs.

Philippians 4:19
And my God will meet all your needs according to his glorious riches in Christ Jesus.