After sleeping overnight in Orlando, we had breakfast with the Boemler Wareings before making the 2 hour drive back to Gainesville. It was nice to hang out and visit with friends.

The Bun had a great day hanging out with Nurse Marla.

Over the past day or so, her congestion has flared up a bit again. Hopefully it will be gone completely in a few days.

Aside from that, Ella looks great clinically. She seems so much more relaxed. It is almost not believable that she is doing so well. I think we are just so used to seeing her sick and not feeling well.

They have not moved Ella out of NICU 3 yet. We don’t think it is because she is not ready; the NICU 3 is just not busy and the nurse practitioner that has her case is not back until Wednesday.

Ella is having an abdominal ultrasound tomorrow (Tuesday). Please pray that all goes well. They will be checking to see if she shows any signs of clotting around her IVC, where it was partially occluded. We would really love to see her low molecular heparin treatment discontinued (clotting medicine that has to be given via subcutaneous shots). Her poor legs are all bruised from being pricked with a needle each day.

Although we did not capture an image, Ella really liked the Minnie Mouse that we brought back from Disney World. We can’t imagine the day when we can take her there for the first time.

Speaking of first times, we are looking forward to our first time of leaving the hospital. Although we have not been given a final date, it seems around the corner and could be as early as sometime this week.

Along with that comes the anxiety of being new parents…and being new parents with a baby that has special needs. Please begin to pray that we can continue to trust in Him, and fully rely on Him for our needs as we learn to take care of Ella each day.

Philippians 4:6-7
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Ella slept through the entire night for Nurse Janet. It was great because at shift change (7pm), Ella was drowsy. But instead of letting her sleep, Nurse Janet some kept our girl up a couple more hours. She did this by doing her hands on assessment, weighing her, and keeping her entertained with stories just to make sure she that would sleep through the night.

We got up early to see the Bun this morning and we snapped the picture above. Yes, we got up early because we have the feeling this might be our last weekend without Ella at home, so…

We decided to take a break and escape to Disney World, about a 2 hour drive from Gainesville. =) We spent the day at the Magic Kingdom park and left there to go have dinner at P.F. Chang’s (Tina’s mom had given us a gift card for Christmas). We’re going to stay the night in Orlando, and have breakfast with our friends (the Boemler Warings) tomorrow morning and then drive back to spend the day with Ella for the Martin Luther King holiday.

When we called throughout the day to check on Ella, she was doing great and having a good time with Nurse Kristen. It is refreshing to have Ella doing so well and maintaining the steps she has taken forward.

With all her great progress from this past week, it felt so good to just to top it off with some fun. We kept up with all the comments on the blog throughout the day from her phone. It was surreal to be at “the happiest place on earth” and to be blessed by everyone’s words at the same time.

As the slogan goes, Walt Disney World, where dreams come true. We feel that our dream has come true in the life of our baby girl. We praise Him for creating such a wonderful little girl and we’re excited to see how He continues to work in her life.

Thanks to all of you for how you have already participated in her life. As always, may she continue to be a reminder of Him and His call for us to trust Him, every moment of every day.

What a fantastic day with the Bun! Ella looked better today than she ever has before!

I think we have finally found the right combination of meds for our girl. Also, it looks like she’s at the end of her cold, thank God.

Tina and I spent bulk of today with her, and she was awake for most of it. She was so comfortable too. Her breathing was very relaxed, even when she was awake, and her heart rate was showing numbers that you normally see when she is sleeping.

We had a great time holding and cuddling with her, and she rewarded us with many smiles.

Ella also did a couple things that really got us excited.

One thing she has been doing is reaching out for things. I was impressed though when I held her binky out in front of her face, she would reach out for it, grab my hand, and pull the binky to her mouth. So cool to see this.

The other thing she did that was so encouraging is her taking tiny sips of breast milk and swallowing it! She didn’t choke on it, but instead you could hear her swallowing! So awesome because hopefully this is a sign of how she’ll handle food moving forward.

If Ella keeps this trend up, there’s a very good chance she’ll be released soon, maybe even the end of next week!

Today was also spent in awe of how far our miracle girl has come. She will be six months old this next Thursday and it boggles my mind that we’ve been in the hospital this long.

We praise our Lord and Savior, Jesus Christ, for bringing us to this day, and we look to Him to guide our path in the future.

We cannot even begin to express the amount of gratitude for the outpouring of support from YOU. Yes, you, who’s reading this post right now. Your love and prayers for our little girl have won us many a spiritual battle, and we continue to covet those prayers every single day.

Thank you to those who comment. We read every single one and take them to heart. And thank you also to those who don’t comment, we know you are with us here in spirit.

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.

Ella Bun had another amazing day. We had a great time hanging out and playing together.
 
They changed her feeding schedule slightly. We are venting 10 minutes before feeding, feeding 100% breast milk over 1 hour and venting for 15 minutes (versus 30 minutes) after the feeding.
 
Ella was running cooler last night and throughout today, thus the warmer outfits. I think it might be related to the fact that her heart is not working as hard with her new medicine, as evidenced by her sustained lower heart rates. We can tell that the heart medicine is really working wonders.
 
Her urine output is less than it has been over the past few days. Hopefully, this is not a sign of fluid retention. We don’t think so because she has still been losing small amounts of weight each night. They are hoping to see it level off and then go the other direction with small amounts of weight gain (without respiratory compromise).
 
I participated and gave Ella a real bath today. That was so much fun.
 
Another interesting thing we tried today with the occupational therapist: we put some breast milk on the binky and let Ella taste it. She really liked it! It was fun to watch her face as she tasted it for the first time orally. Then towards the end of the small container, the OT went ahead and gave Ella a small swig in her mouth. She swallowed it free and clear which is a really good sign.
 
Nurse Janet is taking care of Ella tonight which makes for a good night’s rest. If Ella can sustain her increased stats over the weekend, she will likely get moved back to the NICU 2 on Monday.
 
We praise God and thank Him for the blessing of Ella Renae. As we experience this journey, we continue to learn His ways and trust in Him daily.
 

It was exciting to see Ella looking so happy today.
 
First, Josh and I received training in infant CPR. It is scary to think that we might ever have to put that knowledge into action, but the good news is that we know what to do if it ever happens.
 
When we went to visit Ella, she was so happy. Josh had not seen Ella in a few days, since he was feeling a bit under the weather and did not want to expose Ella to any germs. But even with the silly mask on, Ella knew it was her Daddy! The huge smiles were a great sign that not only did she recognize Daddy, but she was happy to see him.
 
Smiles were a sign of the day. I have not seen Ella smile this much in a couple of weeks. Even then, it was a brief moment in time. This was a bunch of smiles throughout the day. That brought joy to my heart. I think we are so used to seeing our baby girl in a critically ill state, that you forget how much fun it can be to have a baby that is feeling half-way decent.
 
Ella is still battling her cold with the cough and congestion. The nurse practitioner led me to believe that it might hold on for another week or so. At this point, that seems to be the main thing holding back Ella from feeling amazing.
 
Her numbers today along with her smiley behavior told the whole story. Her oxygen was maintained at 500ml pretty much the entire day. Her heart rate was between 155-165 when she was awake and 125-135 when she was sleeping. Her saturations stayed in the 90s while she was awake and as the day went on, stayed at 100 especially when she was in a deep snooze.
 
I know that numbers might not sound that exciting, but they are a key component to assessing Ella’s state. We just want the numbers continue to stay strong and go in the right direction.
 
Ella’s main nurse practitioner that has her case right now (who has been working the mystery with us) is not going to be around until next Wednesday. We really don’t want to see any deviations in her great steps forward.
 
Today, they decided to increase her intake of breast milk to 100%. Although it will not last long, at least it makes it all my hard work seem worth it. Plus, it means that the higher fat content in the breast milk is not causing any fluid issues for Ella. This is a HUGE accomplishment. We have wanted her to switch to breast milk and then formula, so she can get the added nutrients that she needs.
 
Ella was due for her synegist shot today (a vaccine that she has to get 1x every 28 days during winter). It helps fight off sickness. Unfortunately, it will make her legs sore (where they gave the shot in each leg), but it is not supposed to cause any other ill side effects like the other vaccines she received in December. We hope this is the case – – she is making such good progress forward and we don’t want anything to make her take steps back.
 
They are still giving Ella low molecular heparin treatment to prevent clotting since the removal of the central venous line that was pulled from her partially occluded IVC. An abdominal scan is scheduled for Tuesday morning to assess the area and see if there are any other clotting issues. If everything looks normal, they will discontinue the heparin therapy. This would be great because it requires subcutaneous shots daily. Ella’s poor little legs have prick marks all over them!
 
We are 72+ hours since Ella’s last lasix via IV. And early this morning, her IV from her foot went bad and was removed. This means that she has no IV access. The better news: this means that she can have regular baths again. We’re excited to participate in her next one. She loves bath time!
 
Please continue to pray that Ella can tolerate her latest mix of treatments and that it will be the right combination to make her strong enough to go home. If she can maintain a steady path and get stronger, we might be looking at a discharge date before the end of the month.
 
We thank you for all the prayer support and for continuing to keep all three of us close to your heart.
 

Ella had a great day.

She was up for Nurse Marla at shift change this morning and was in a joyful mood. Nurse Marla could not stop commenting all day on how much fun she had playing with Ella.

When they came to give her a chest x-ray this morning, they wanted her in an upright position. While Nurse Marla held her up, Ella even smiled at the xray technician!

So clinically, her behavior was amazing. Plus, her heart rate remained lower (170 was the highest today, even when she was awake) and her saturations stayed in the mid-to-high 90s. Her oxygen remained anywhere from 700ml to 500ml, throughout the day as she tolerated it.

She is definitely still fighting a cold which is evident by her nose getting stuffed and her coughing. She still sounds sick, and yet through it all, she was still managing to play and have a good time.

It was so promising to see Ella exhibiting this behavior, even as we are getting further and further away from her last dose of IV lasix.

Again, it was not great to hear that she has moderate to severe pulmonary hypertension, but at the same time, this is an answer to prayer. We joined all of you in asking the Lord to reveal knowledge and give discernment. This was a huge piece of the puzzle and the heart medicine is already working its wonders.

The increase dosage of Bumex at times when her belly is less full also seems to be keeping Ella nice and dry. Her chest xray came back and it is the best chest xray they have seen thus far for Ella! I took a look and her left lung (although still significantly smaller than her right) is the most expanded that I have seen it. This is a major answer to prayer, in that it looks like the breast milk is not causing any fluid build up in her chest cavity. Because the xray looked so great, they decided to increase the breast milk to 50% of her total feeds, starting tonight with her 6pm feed.

She has lab work in the morning where they will check all her electrolytes and make sure all her levels are intact.

Today held a glimmer of hope that going home might be within reach. All of it will depend on how Ella trends over the next several days.

Please continue to pray that she will get rid of her cold, the increase in breast milk will be tolerated, her lab work will turn out well, the strategy with diuretics and heart medicine will continue to make her strong, so that they can continue to wean her oxygen.

Also, a special prayer request for Par’s mom, Liz. She was hospitalized yesterday due to a kidney infection. Right now, they are not sure if that is her diagnosis or not, but you can keep track by visiting their blog.

I wanted to share the lyrics to a song that ministered to my heart today. The words resonated and I couldn’t help but feel the weight of the words. It is so good to absorb and take in the truth of God’s love.

I have to believe
by Rita Springer

I have to believe that He sees my darkness
I have to believe that He knows my pain
I have to lift up my hands to worship
Worship His name

I have to declare that He is my refuge
I have to deny that I am alone
I have to lift up my eyes to the mountains
It’s where my help comes from

He said that He’s forever faithful
He said that He’s forever true
He said that He can move mountains
And if He can move mountains
He can move my mountain
He can move Your mountain too

I have to stand tall when the wind blows me over
I have to stand strong when I’m weak and afraid
I have to grab hold, hold of the garments
Garments of praise

I have to sing praise when the hour is midnight
He unlocks the chains that bind up my soul
My sin and my shame, He has forgiven, and made me whole

I have to believe

Ella is stable today – – praise God!

I think she is doing better than yesterday, although it has only been 24 hours since her dose of Lasix via IV. Tomorrow will be more telling (as of recent, she starts to experience respiratory compromise approximately 48 hours after the IV Lasix dose).

Nurse Marla has her today and thinks that she is doing better than she was doing on Sunday, the last time she took care of her. That means a lot too, since Nurse Marla knows Ella so well.

She has been weaned down to 700ml of oxygen as of 5pm tonight which is the lowest it has been in days. Her urine output is higher today than Sunday. This likely means that the increase dosage of Bumex is having a positive effect. It may not end up being the final solution, but it does indicate that maybe administering higher dosages of diuretic work better for Ella.

Another note of praise: she does look better today and she has had 25% of her food as breast milk over the past 24 hours. This means that there is a good chance that the breast milk is not having a negative impact (for those of you who joined us later, breast milk and standard formula have a higher amount of fat which can cause more fluid to flow from the lymphatic system. Portagen has lower fat and was used to help control Ella’s fluid output. Although it has been since mid-October since her last round of chylothorax, they did not want to switch or try breast milk or standard formula until now).

A chest x-ray is ordered for the morning. If the chest x-ray does not show significant fluid accumulation in her pleural cavity, they will increase the breast milk to 50% of her food intake.

We did get some tough news today. The results of Ella’s echocardiogram that we were given last Monday were verbal (the nurse practitioner was standing next to the cardiologist as he was reading the results). If you remember, they shared that news with us at the meeting last week.

Well, the written results of the echocardiogram came back today. Instead of no pulmonary hypertension, like we were previously informed, we were told that she has moderate to severe pulmonary hypertension. I am not sure how a mix-up that different occurs, but the good news is that they realize she has it now and can begin to treat it appropriately. So, starting today they are giving her Sildenafil (Viagra) three times per day. Sildenafil selectively reduces pulmonary vascular resistance and has shown to cause a steady improvement in pulse oxygen saturation over time. Nurse Marla thinks that since this has been identified, this medicine will really help. She has seen it help lots of babies and will hopefully help get oxygen to Ella’s lungs better.

Please continue to pray that her cold will subside, the increase in Bumex will be effective, she will continue to tolerate breast milk, and that the Sildenafil (Viagra) will help increase her pulse oxygen saturation over the next few days. Also, that Dr. Kays and staff will continue to grow in knowledge and wisdom on the next best steps for Ella.

Cherries are adorning her outfit and she is still as sweet as ever. She is hugging her floppy valentine puppy and checking out her sparkly heart garland on her crib. Her joy in the midst of it all is such a clear reminder of His love for us and a call to continue to trust Him and seek Him, in all things.

Psalm 143:8
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.

Ella did fine this early morning and was being herself with Nurse Michelle at 5am. She was not behaving tremendously different for Nurse Andrea during the morning.

Around noon, based on her saturations alone, it seemed like she was starting to work harder. Nurse Andrea was convinced that she was fine and tried to convince me to look at Ella more than her numbers.

She was asleep for the early afternoon until around 3pm. As I sat and watched her saturations, they seemed to slowly be creeping in the wrong direction. I was getting the feeling that she wasn’t horrible, but was having to work a bit harder than yesterday around the same time (and it had been almost 48 hours since her last dose of IV Lasix).

When she woke up around 3pm, she was fussy and not consolable. During that time, Nurse Andrea and I were trying everything to make her happy. Nothing was working. Finally, Nurse Andrea moved her back up to 1 liter of oxygen (up from 800ml) and that seemed to help. The whole episode lasted about 45 minutes and she finally fell asleep again.

About 4:15pm, Dr. Kays, Dr. Saxonhouse, the nurse practitioner and a fellow surgeon came over to the bedside. Dr. Kays sat in the rocking chair, smiled at me and said, “So, what should we do next?” and looked right at me. I laughed and asked, “What do you mean?”. He expressed that he had some thoughts, but wanted to know mine and to make sure that we are addressing my concerns.

One idea that Josh and I discussed earlier was the concept that the Lasix via IV gives her body an immediate burst of diuretic. I told Josh that I wonder if increasing the dosage of the Bumex would have greater impact than increasing the frequency of the dose.

When I asked Dr. Kays during the meeting, he mentioned that pharmacy told him that .25mg was the highest dose that was recommended for a neonate, although he doesn’t feel that giving her a higher dose would necessarily have a negative impact on her.

After about 15 minutes of discussion and a round of voting by the medical staff, here were the decided steps for Ella:

• Give 1 dose of Lasix IV right now at 4:30pm. Since we have the IV access, let’s give it to her to keep her more comfortable, while we continue to test different methods.
• Try increasing the Bumex to 1.0mg total and only administering it twice per day, at 11am and 11pm, when her tummy is less likely to be full (hoping this helps with absorption).
• Since the Portagen is high in sodium content, try adding breast milk 25% to feeds and monitor tolerance.

 
Since we gave Ella the Lasix via IV, it will take almost 2 days to once again see if the increased Bumex and dosage strategy is really working. However, one thing is positive. She just had Lasix IV and increased Bumex, so if she does have a fluid issue in the next 24 hours, we can make the assumption that it is likely to be the food and not the diuretic.

A note of praise – – the culture came back and Ella does not have RSV. We know that she has a cold, which is not helping her entire situation.

Since they determined that Ella does not have RSV, they moved Ella out of the isolation room and over to to bed #5 in the NICU 3 (which is out in the more open space). One of the nurses mentioned that we should make her a NICU Tour shirt and list all the beds that she had occupied. So far, there would be 7 different beds!

About 1.5 hours after the Lasix, Ella had a huge diaper. This means that there was fluid in her system that needed to be gone. Again, Lasix via IV is magic!

Please pray for the following things:

• That her virus/cold would clear up.
• That she can tolerate the transition to breast milk and eventually a standard formula.
• The strategy with Bumex will work. If not, that the medical team will have increased knowledge and discernment to come up with a long term diuretic plan for Ella that will work.

 
Thanks for the thoughts and prayers. We continue to trust in Him and His timing.

Psalm 9:10
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

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