Yes, it happened! They let us leave the hospital with Ella Bun.

Our official discharge started this morning at 9am at our apartment. The home oxygen service that normally meets parents at the bedside made an exception to meet us at our apartment. They knew we had some concerns about the compressor unit and mobility with Ella, so they gave us all our training in our own environment. That was great.

We grabbed a quick bite to eat (our last without Ella) and headed back to the hospital for all the official discharge information. Everything from a complete medical history to when all your follow-up appointments are scheduled to all the hugs and well wishes from the NICU staff that have come to know and love Ella. It was exciting and sad for us all at the same time.

They had Ella sit in a car seat for 1 hour and monitored her saturations, just to make sure that she could tolerate that position. She passed with flying colors.

The only bummer is that they decided they wanted to check her potassium level before she left, so they could contact us and treat it if there was a problem. This is basically one more set of blood labs, so poor Nurse Kelly had to prick Ella shortly before discharge. That procedure got Ella very upset, but she recovered nicely and started to give smiles again shortly thereafter.

The ride home was easy and uneventful. She was looking around at first and then dozed off for a cat nap.

Once we arrived home around 5pm, it was time to hook Ella back from the portable oxygen to the compressor at home and unpack all her stuff. I could not believe all the stuff that we had accumulated at the hospital over the past 6 months.

I think we are a bit in shock. It doesn’t seem real that Ella is here with us tonight as we write this post.

Yes, I have to have a cheat sheet. Almost every hour, it seems that I must be doing something whether changing a diaper,venting her g-tube, feeding her, giving a med, etc. She was discharged with these medicines: Diamox administered once a day, Bumex administered twice a day (every 12 hours), Reglan administered three times a day (every 8 hours), Viagra administered four times a day (every 6 hours) and a multivitamin with iron once per day.

So far, we have gone through 2 feeding sessions, 3 medicines, a few diaper changes, a nap for Ella and a bath. She is falling asleep in Daddy’s arms right now. We have 3 more medicines before we retire for the night as well as setting up her continuous feed with a pump that will run from midnight till 8am. We will be waking up once to administer a medicine, otherwise we can all sleep through the night…and Ella has been sleeping through the night at the hospital. We will see what happens tonight.

Our first pediatrician appointment is Tuesday, Jan 29th. We’re excited to meet Dr. Kathy Sarantos; we’ve heard nothing but great things about her and her practice. We get to follow-up with Dr. Kays on February 5th and with the cardiologist on February 7th.

We weren’t sure what to expect, but I think all the training at the bedside has prepared us for this day. It has been nice to take care of Ella in the comforts of our home.

We are so blessed to have our baby girl at home with us tonight. It is amazing to think how far God has brought all three of us. We have been stretched beyond our imagination, emotionally and spiritually. And through all the pain, there has been such incredible joy.

Our baby girl is such a reminder of Him and His love. We hope and pray that all of you will continue to seek God and join us as we continue to trust Him in each moment, no matter what He has planned for the future chapters.

Thank you for all the thoughts and prayers.

Great Is Thy Faithfulness
by: Thomas. O. Chisholm

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee.
Thou changest not, Thy compassions, they fail not;
As Thou hast been Thou forever wilt be.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided
Great is Thy Faithfulness, Lord unto me.

Summer and winter and spring-time and harvest,
Sun, moon and stars in their courses above
join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided
Great is Thy Faithfulness, Lord unto me.

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide,
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided
Great is Thy Faithfulness, Lord unto me.

Wow, our baby girl is 6 months old today. It is amazing to think how much progress she has made already on this journey.

Ella had another echocardiogram today and the results were better. Her medicine is working wonders and they noted very minimal shunting. This means that there is a chance that her heart will be able to close the Patent Ductus Arteriosus (PDA) on its own. She has another follow-up appointment on February 7th.

The occupational therapist worked with Ella today on oral feeding. She gave her a small amount of formula orally through a special bottle that lets you control the flow from the nipple. On the fly, you can change it to have no flow to very minimal amounts while not having to take it from the baby’s mouth. Ella didn’t do that well yesterday when she first tried, but today she did great. That is a great sign of her potential to feed orally.

We are excited to let everyone know that she is being discharged from the hospital tomorrow! This means that Ella is spending her last night in the NICU at Shands! We’re so thrilled. Nurse Michelle is honored to be taking care of her. If you remember, Nurse Michelle is one of the fab four nurses that first made Ella feel at home in the NICU by making a bow and attaching it to her coband (see this post).

 
Our appointment for home oxygen training is in the morning at 9am. Normally, it is conducted bedside in the NICU, however they will be doing it at our apartment instead. It will be good to have them show us all the equipment in our own environment.

Once we are trained on all aspects of the equipment, we will be loading up a portable oxygen tank, our prescriptions for Ella and the car seat and heading off to the NICU for the remainder of the day. There are lots of discharge procedures to go through and last minute training topics to cover.

Just to clarify for anyone that has missed prior posts, we have been talking about this day coming for a long time. It is hard to believe that it has finally come our way and that Ella is well enough to go home.

When we say that we are excited to go home, we simply mean discharge from the hospital. Back in December, we prayed a lot about the next best steps. Our desire was to go back home to Colorado immediately. After a lot of prayer and several important things falling into place, it became clear that the Lord wanted us to stay in Gainesville close-by to Dr. Kays.

Our plan is to stay local in Gainesville until the end of July and move back to Denver in the summer. Here are some of the reasons that made our decision easier:

• Since Ella has been so marginal during her recovery, we felt it would be best to remain close to Dr. Kays and staff that is so familiar with her history.
• There is a great pediatrician local in Gainesville that has first hand experience with CDH babies.
• When I originally looked in Denver for a pediatrician and other specialists for Ella, I was running into road blocks. Staying here for the first several months allows me to research and set up a good network of doctors for Ella’s future care (this is not going to be easy and will take some time).
• We want to introduce Ella to the outside world slowly; Florida weather will allow us to do that while the winter conditions in Colorado right now would force us to stay inside most of the time.
• Driving back across the country in the middle of winter is not a great idea.
• The altitude in Denver is not going to make breathing easier for Ella. We think it will be better if she has some months at sea level before taking on that challenge.
• Taking on parenting is daunting enough, yet we feel that we have more support here in Gainesville for us and Ella. All our friends are staff in the NICU! Another added benefit, many of the NICU nurses will miss seeing Ella and may even want to babysit!

 
So, although we are excited to go back home to Colorado in the summer, we have total peace about staying in Gainesville for the next several months. We think it is critical for a smooth transition back to our real home in Colorado.

Please pray for our day tomorrow during discharge. We praise the Lord for how far he has brought all three of us and thank all of you for your unfailing love and support.

Psalm 57:10
For great is your love, reaching to the heavens;
your faithfulness reaches to the skies.

Today was another day of progress for Ella.

Her food was switched to 50% breast milk and 50% Similac 27 calorie. Also, the total fluid intake went up slightly. All of this in an effort to getting her to intake the maximum amount of fluid with the most calories suited to her condition. They were able to obtain a recipe for mixing the formula to 27 calories, which will work well for Ella at home. She has been tolerating the bolus feeds with no problem; this is great since it means we can spend less time on feeding sessions.

Ella had her first hearing test this morning. They placed 4 sensor leads on her head and a devise in her each ear, one at a time. I was curious how they conducted infant hearing tests. They liken it to an EEG, where it tracks the actual activity throughout the brain. They test it at various decibels to ensure proper hearing. They were able to tell us the results right away – – she passed her hearing tests in both ears! Since CDH babies inherently carry risks for hearing loss, she will need to be retested every 6 months to monitor her hearing.

The cardiologist came by to take a listen to Ella and explain the pulmonary hypertension. He told me that she has two conditions that are causing the pulmonary hypertension: Patent Foramen Ovale (PFO) and Patent Ductus Arteriosus (PDA). Also, he informed me that Ella will need to have an echocardiogram performed initially about 2 times per month. They will need to keep a close watch to maintain blood flow and oxygen levels and adjust her medicine as she gains weight. Also, if the patent ductus arteriosus (PDA) does not close on its own, she may need to have a corrective surgery for the heart defect(s) by the time she turns 1 year old.

Ella tried some oral feeding with the occupational therapist today and did not respond real well. It frustrated her and she got upset during the session with several crying spells. We will try again tomorrow; she may have just been too tired to try something so new. Either way, I was happy to see that even during her crying spells, she was maintaining her saturations in the 90s. Before, it took very little for her to lose it completely and down spiral into a mode of being completely air starved. But she is getting stronger and the combinations of medicines are helping her so much.

We are gathering our last minute items that we will need for the house, such as sterile water and syringes for medicine administration. Tomorrow, I will be picking up all her prescriptions. She will be taking Reglan, Bumex, Diamox and Sildenifil.

We will be discussing options for home oxygen solutions tomorrow. We hope to have a liquid oxygen system, because of the advantages of portability. However, we are still not sure if that is covered by insurance (versus a standard oxygen compressor) or if any of the home oxygen suppliers in this area even carry it.

Some of you have wondered how long Ella will remain on oxygen. As you have seen, many of these decisions are ultimately based on how Ella responds. Going off her history and what we know of her so far, there is a good chance that she will be on it for at least another year, if not longer. Keep in mind that going back to Denver is also going to delay her ability to wean off the oxygen support, due to the altitude.

The primary nurse practitioner came back today. She has been great and is trying her best to make sure all the details are buttoned up, so that we can be discharged sooner versus later. The latest word on discharge could be as early as Friday or as late as Monday. They do not discharge babies over the weekend, but we are pretty sure it will be one of those two days.

We would prefer Friday not only because it is sooner, but it would also give us the weekend to hang out with her and become accustomed to her care as new parents together. Either way, we are only a few days away from bringing home the Bun. We should have a final answer sometime tomorrow.

When I took Josh back to visit this evening with Ella, we decided to give her a bath. This has become her routine before going to bed for the night. This time, I let Daddy be more involved with the bath. He had a great time with Ella, as the pictures demonstrate.

Some of Ella’s biggest fans in the NICU have started to come by her bedside and say their well wishes over the past few days. Some nurses who only took care of her a few times, to those who took care of her many times. Tonight, she was giving lots and lots of smiles to Nurse Janet and Nurse Michelle who are part of her core nursing team. Also, Roger (who worked her ECMO pump way back in late July and August) came by to take a peek at her progress. One thing is for sure: Ella LOVES all the attention. She is going to miss all her friends in the NICU. It is all she has ever known.

We continue to be in awe of Ella and how far the Lord has brought her. She has been through so much and is such a strong little girl.

Thanks for the continued prayers for all three of us. We look forward to the next chapter of our journey and allowing you to continue along with us in heart and spirit.

Today was a full day for Ella. Surprisingly, she was up most of the day and only took 3 short 30 minute power naps. The rest of the time she was awake, bright-eyed, happy and smiling. We had a great time together.

The occupational therapist came to do a session with Ella. She showed me some developmental exercises that I can do with the Bun each day to help her. As you can see from the pictures, we tried the Baby Bjorn to see how she would like it and whether or not it would provide enough trunk support. She loved it! This will be a great thing to use at home, so I can have my arms free.

We are running out of breast milk and may be able to get another 24 hours worth before my frozen supply runs out. So today at 3pm, they decided to start mixing it 50/50 with formula (Similac, 24 calorie). They are still trying to determine which formula we will use at home.

All CDH babies under the care of Dr. Kays have a lower fluid intake. With Ella’s fluid issues, she is even more sensitive. So while she is in the hospital, they try to enhance and add more calories to the amount of limited fluid she intakes each day (e.g. she was up to 30 calorie Portagen). Unfortunately, they do not carry 30 calorie formulas over the counter and although you could try to mix it a certain way at home to make it 30 calories, the formula companies do not recommend it (gives too much of other nutrients/ingredients). So, this is something they will be trying to figure out over the coming days.

Although we do not anticipate any issues, please pray that Ella will not have any issues switching to the formula exclusively. Also, that the doctors will come up with a plan to get her enough calories so she can start to gain weight again.

Last night, she weighed in at 10 pounds, 7 ounces, which is much smaller than she should be at this age. She has been steadily losing weight and getting back to her “dry weight” (more of a true weight prior to her diuretic fluid issues in the past few weeks). But, we need her to gain weight and that will not happen without more calories.

Another change with feeding today is the method of feeding. Currently, she is on a continuous feed via a pump for 8 hours at night (this will stay the same when we are at home) and then she eats five times per day every three hours. When we feed during the day, we vent her g-tube for 10 minutes, feed via a pump over 1 hour, vent her g-tube for 30 minutes after the feed. She eats every 3 hours, so you only end up having an hour and 20 minutes where she is not “hooked up” to any feeding devices.

They want to try bolus feeding to provide us with more flexibility and lessen the time that Ella is attached to tubes. Bolus feeds are where you simply pour the entire amount into a syringe and it floats into her g-tube and belly via gravity; takes maybe 5-10 minutes. In the past when they tried the bolus feeding, Ella would retch a lot and not tolerate it well.

Today, we tried venting 10 minutes prior, a bolus feed, and venting 30 minutes afterwards for the 3pm and 6pm feed and Ella seemed fine. We really hope this works over the next couple of days, as it will provide more flexibility with her eating schedule.

Ella had her abdominal ultrasound this morning. By 6:45pm tonight, the official results came back and it does not appear to be any clotting in the area where the CVL was located – – praise God! Therefore, they decided to discontinue the low molecular heparin therapy. Yippee – – no more shots in her legs each day. Poor little girl!

The primary nurse practitioner that oversees Ella will be returning tomorrow. We are anxious to hear about her thoughts and the plan for discharge. We know it will be soon, but hopefully she can paint a clearer picture around the details of when that might be happening.

In the meantime, we are enjoying the time with Ella. It is so refreshing to see her relaxed and not laboring so hard just to breathe. I think that is why she has gained more energy and endurance over the past few days.

We continue to trust in Him for the timing of discharge for the hospital and ask for your continued prayers for our baby girl. We want to see her continue to get stronger and healthier each day. Also, please pray for rest and peace for us as we enter a new chapter of our journey.

Psalm 33:22
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.

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 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.