As all of you know, Ella has had a rough week. Last week this time, she was starting to go down the wrong path. We feel that the key change that made things turn for the worse was switching her diuretics to be administered orally vs IV.

When this was changed, they also increased the volume significantly plus added 2 more diuretics since they noted that the atelectosis was kicking in. She has very little reserve and any slight changes can make a huge difference for her.

Dr. Kays returned today and confirmed our theory. He was not happy that the diuretics were modified while he was out of town.

In retrospect, the nurse practitioners simply wanted to come up with a plan to get Ella home with us sooner versus later. However, the steps that needed to take place in order for that to happen were too many changes, too quickly for Ella. If we have learned anything, it is to make changes slowly.

Dr. Kays stated that it is more important to get her back to where she was last week before all these changes took place. So, he’s now only using 2 diuretics – lasix and diamox. The dosages have also been reduced, but he ordered that they be given via IV versus orally.

He wants to watch her progress and begin to wean the oxygen back down to 500ml. Once she is back to that place, we will discuss further steps.

The two main challenges at this time are her feedings (finding the proper formula and schedule), and the switching of the diuretics from IV to oral. This could take some time. We need to be patient with these last challenges.

We spent all day with Ella in the NICU today. A few times, we caught some good smiles. This means that she must be feeling better.

Please continue to pray for our little girl. We want her to get stronger, gain endurance and hit all her milestones so that she can come home with us.

On a note of praise, Par is getting ready to go home tomorrow!!! Thank you for all the continued prayers for this boy and his family. Although Ella will miss sneaking across the NICU at night to snuggle with Par, we are very excited for them. Please pray for their safety on their drive home to Birmingham.

Today was Ella’s first Merry Christmas.

Nurse Marla was taking care of her today. What a great Christmas gift for us and Ella!

When we arrived at the hospital, she had just awoke from a sound nap. It was perfect timing.

From there, we spent a good 2-3 hours with Ella. She was such a good sport. We dressed her up in Christmas outfits, took photos, talked and played with her. She was in a great mood the entire time.

One of the things that she liked the best was for me to grab under her arms and raise her up and down. Nurse Marla noted that she probably likes it because it makes it easier for her to breathe in that position. Plus, it gives her a great view of things.

Her stats today were good. I think that they might have figured out the proper combinations of diuretics to give her via the g-tube.

She had a chest xray this morning that appeared a bit hazy, although they think that it might have been due to her movement & positioning. Just to make sure, they are taking another one tomorrow morning.

We still need to work on getting the feeding into shorter sessions and try a formula other than Portagen before we go home. We have stayed with Portagen this entire time because it had the least amount of risk for the chest fluid build up. Now that we are 2 months past that issue, we need to think about other formulas that will provide better overall nutritional needs for Ella (Portagen is not the best). We would like to try another option (even breast milk from when I pumped) and make sure she will sustain before we take her home.

Also, her oxygen may need to be weaned before we are discharged. She is currently at 1 liter. Most of the time, babies will start on 500 ml and be weaned down from there before being released.

Dr. Kays has been out for the past 10 days or so due to the holidays. We need him to return so that we can run some of these decisions past him.

The main nurse practitioner that has Ella’s case will be returning tomorrow. We hope to touch base with her and come up with a new, revised plan.

At this point, we are simply taking small steps each day toward discharge from the hospital. We hope and pray that it will be within the next couple of weeks. We trust in the Lord’s timing…and in His plan. She is such a sweet spirit and we are so blessed to have her in our life.

We had a great Christmas dinner with friends locally here in Gainesville (last night and today). Both nights, the company and food was awesome! We are so thankful for the friendship, love and support during this time.

Moreover, we are grateful that the Savior Jesus was born on this day so many years ago. He is the reason for the season.

Matthew 1:18-24
This is how the birth of Jesus Christ came about: His mother Mary was pledged to be married to Joseph, but before they came together, she was found to be with child through the Holy Spirit. Because Joseph her husband was a righteous man and did not want to expose her to public disgrace, he had in mind to divorce her quietly.

But after he had considered this, an angel of the Lord appeared to him in a dream and said, “Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.”

All this took place to fulfill what the Lord had said through the prophet: “The virgin will be with child and will give birth to a son, and they will call him Immanuel”—which means, “God with us.”

When Joseph woke up, he did what the angel of the Lord had commanded him and took Mary home as his wife. But he had no union with her until she gave birth to a son. And he gave him the name Jesus.

Praise God – – Ella had a much better day. Thank you for your prayers.

Her chest xray this morning showed improvement in her left lung. The increased diuretics are kicking in and having the desired effect. Along with the oral diuretics, they also gave her a bolus injection of lasix via her central line.

The past two days, Ella had significant weight loss due to the fluid retention. Her weight decreased to 9 lbs, 15 ounces.

Ella’s flow of oxygen is still at 1 liter. The increased diuretics and oxygen have made the difference!

One area of concern is Ella’s g-tube site. It has been oozing gastric juices, which is fairly normal, but it has been getting into her repair scar and causing inflammation. This has been going on for several days, but it is not getting better. Please pray that it will clear up soon.

We spent the entire day moving into our new apartment and we really like it. Now, everything is moved but we just need to unpack and get everything ready for the arrival of Bun.

Our hope and prayer is that we will be able to take her home soon. We will see how she does over the next couple of days.

Thank you for your continued support. We are so thankful for each of you during this holiday season.

Sorry for the suspense – – it was a rough 24 hours or so – – for parents and Ella!

I came back from my business trip late last night. There was a snow storm in Denver and my flight was delayed 2 hours. By the time we made it back to Gainesville and in to the NICU, it was 1:30am.

I could tell that Ella was not feeling well. Overall, she seemed fussy and not consolable. Her stats weren’t great either. As you know from previous posts, this typically means that something is wrong with her lungs.

The last time I saw Ella was Tuesday night. That was the first night that I had not seen her look good. At that time, she was getting a blood transfusion. Once the transfusion ended, her stats went up a bit. But that was the first time since her nissen surgery that she did not look strong. I mentioned something to the nurse since this can typically be the start of a downward trend for Ella.

The next few days brought lots of activity for Ella: an MRI, a series of vaccinations, fever, switching her diuretics to oral versus IV, etc. Slowly over the past few days, it seems that her saturations were continuing to trend downward. Since there were so many changes, it made it tough to distinguish what might be going on.

First, they thought it was the lasix. They switched it to oral, but did not increase the amount. When you switch from giving lasix from IV to oral, you need to increase it in order to have the same impact (the gastric acids in the stomach lessen the effect). It took them one day to figure that out and adjust that component.

Then, they gave her several vaccinations. They gave her Tylenol to help with her fever, but we think that the vaccinations made her feel crummy (pretty typical).

During these times, Ella was having episodes frequently. When she would fuss, she was not consolable. She would get sweaty and decompensate to the point where she was not getting oxygen. It did not help that Ella was assigned to nurses that had never taken care of her.

The nurse practitioners are concerned about Ella, so they started to run a bunch of tests to figure out the problem. They took a blood gas, it was fine. They did 2 CBC’s within the past 24 hours; those have checked out fine too. The chest x-ray yesterday seemed okay, but the one this morning showed something in the left lung. They think either infection such as pneumonia or atelectsis. To be safe, they started antibiotics in case there is infection.

Based on Ella’s history, we think that it is her lung collapsing (atelectsis). Everything points to that versus an infection. Today, they tried adding 2 more diuretics; they are thinking that this might help. Also, instead of putting her back on CPAP, they tried increasing the flow of oxygen (first to 800 ml, then to 1 liter).

Tonight, her oxygen is set at 1 liter and she looks better than she has in days. The oxygen was increased around 7pm and we think it has made a big difference. She is asleep – – her heart rate is 150 and her saturations are 100.

She is scheduled for another blood gas in the morning and another chest xray. If her saturations dip below 98, there is an order to increase her oxygen flow up to 2 liters. This is what they will try to prevent going back on CPAP. If she has to go back on CPAP, they will put her back in NICU 3.

We are hoping that the increase in diuretics and flow of oxygen might be the ticket to getting her over this latest challenge. Please continue to pray for our baby girl. We are still holding out hope that we can take the Bun home soon.

Please pray for our health and peace too. We are switching apartments this weekend and are trying to get everything set up and ready for Ella. We are trying to accomplish so much within a few days, and we definitely do not want to get sick.

Thank you all for joining us on our journey and for your continued prayers. We praise and thank the Lord for our beautiful baby girl.

Ella had a good day with Nurse Marla. She had a bath, they played and talked. Ella weighed in at 9 lbs, 7.5 ounces.

Due to her weight, they increased the Portagen to 65ccs every 3 hours. Also, they increased the caloric density in the Portagen up to 30 calories (up from 24 calories). Hopefully, this will help Ella gain even more weight which she needs (she is behind the curve for weight at nearly 5 months old). They are still venting 10 minutes before, 30 minutes of feeding, and 30 minutes of venting afterwards. Ella has been retching a little bit at the end of the feeds, but not enough to be concerned. It is just something for us to monitor.

Another HUGE change: they decided to start giving Ella her diuretics (lasix & diamox) via her g-tube. Since her nissen surgery, she has been receiving these meds via the central line. They are switching it because they want to remove the central line by the end of the week. Please pray that she will tolerate this change.

Also, they want to administer infant shots to Ella this week. They want to give her the following vaccines: diptheria, tetanus, acellular pertusis (DtaP), pollo (IPV), hepatitis B (HBV), haemophilus influenzae type B (Hib), pneumococcal conjugate (PCV) or Prevnar, and synagis to prevent Respiratory Syncytial Virus (RSV).

When they drew her blood this morning for labs, her hematocrit count was low (the hematocrit count calculates the percentage of red blood cells per micro liter of blood). So, they ordered some blood for her. The good news is that her potassium has come into a normal range, so they have discontinued the potassium supplement that she was getting. Now, they plan on just administering a multi-vitamin via her g-tube.

The day was uneventful until 6pm. Nurse Marla went to give Ella the blood infusion via the central line and it wasn’t working. The theory is that there were written orders to flush the central line once every 4 hours while Ella was in the NICU 3 and that maybe that has not continued with the same consistency since her switch to NICU 2 a week ago. In any case, after several attempts, they opted to give her the blood via IV.

That took 3 tries on her left foot to get the IV placed properly. Apparently, Ella did not tolerate this whole idea too well. She was upset, fussy, sweaty, saturations dropping, so they increased her oxygen to 1 liter to get her through the ordeal. Although, who can blame her? I am not sure that I would love an IV in my foot (it ended up being in the bottom of her foot. In order to keep it in place, they had to tape her foot to a board. That could not be comfortable!)

When I visited Ella tonight, the transfusion was still taking place and she was resting. Even though she was asleep, her stats did not look great. Her heart rate was 175 at rest and her saturations were 95-97. This is not normal for Ella these days. I wondered if it was due to the blood transfusion, although the nurse was not convinced that the transfusion would cause that response.

To help subside Ella’s fussy behavior from the discomfort of the IV, I held and rocked her for the remaining 30 minutes of the blood transfusion. During this time, I became a bit concerned as I watched the monitor. Her saturations were not getting better, but actually worsening a bit.

Once the transfusion was complete, diaper changed and positioned comfortably in bed, she fell asleep again. Almost instantly, her heart rate dropped to 140-145 with saturations pegged at 100! That is what we have been used to seeing lately. Just to be sure, I continued to watch at her bedside for 1+ hours until I could hardly keep my eyes open! I left feeling assured that she is still making progress and gaining her strength. The decreased stats were definitely tied to the blood transfusion – – thank goodness!

All the changes today prompted a call from the nurse practitioner. If Ella continues her path of steady progress, she wanted to discuss discharge being possible in the next couple of weeks. Can you believe it?!?!? This came as a shock. When I asked the nurse practitioner last Friday (a different one that had been tracking Ella’s file for the past several weeks), she indicated an estimate of 4 weeks. So, this came as such a surprise…but what an AWESOME surprise.

Par is doing really well with his feedings this week. We pray that he will continue to make greater strides forward by the end of this week. Going home soon might be happening sooner versus later for Par too!

Please pray for Ella to continue to gain strength and remain strong in the coming days, so we can take her home for the new year! That would be amazing!

We trust in the Lord for His timing and praise Him for how far He has brought Ella and us.

Psalm 40:2-3
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.

3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.

I took the day off from work so I could hang out with the Bun.

Her stats look good. When she is asleep, her heart rate is around 150, saturations pegged at 100, and breaths per minute around 60. When she is awake, her heart rate is around 175, saturations pegged at 100 and breaths per minute at 70-80. And of course, who can miss those big blue eyes?

This is the fourth day in a row that I spent with her, and the only thing I have noted is that she is a sleepy Bun. It just seems like she is sleeping a lot these past several days.

The good news is that it does not seem like her breathing is overly labored. Don’t get me wrong – – she is working very hard! But, my theory is that her body is working just hard enough with each breath, that it wears her out quickly. Over time, I think she will get stronger and build endurance. But for now, she will be awake for a bit and then has to take a nap or go to sleep for the night. Last night, she went to bed at 8pm and woke up at 6am and yet, she still took solid naps today when I was with her. Tonight, she went to sleep at 7pm. I guess all the visiting is wearing her out too!

Her feeding schedule changed slightly. As of this morning, they are venting for 10 minutes, feeding over 30 minutes (decreased from 1 hour) and venting for 30 minutes afterwards. Again, the goal is to work up to a bolus feed schedule where she would eat over 5-10 minutes and vent for 5-10 minutes since this is what we would do at home (they are still feeding her 64ccs of Portagen every 3 hours).

As of the end of last week, they weaned the Diamox medicine that she has been taking. The Diamox requires the central line; it cannot be given orally or via the feeding tube. So, they are hoping to wean that over the next couple of weeks, so that her central line can be removed. This is a potential source for infection, so we hope that she can avoid that scenario. Plus, we would love to be able to give her regular baths again! If you remember, she loves them!

Another NICU family that lives in Gainesville gave us comp tickets to a theater production called “Tuna Christmas” (the Mom works locally at the Hippodome Theater). It was really funny and a great escape this evening from the normal routine of the hospital. It was so nice for them to think of us during this holiday season.

Walking around downtown Gainesville in the crisp air after the show was a clear reminder of the holiday season (yes, it can get cold here – – it was 45 degrees tonight). The smell of fireplaces in the air and the holiday lights on all the buildings gave the distinct Christmas feel.

We never thought we would still be here for the holidays; we never would have imagined this journey. But we are so thankful for Ella…she means so much and is such a wonderful gift from above.

Proverbs 19:21
Many are the plans in a man’s heart,
but it is the LORD’s purpose that prevails.

Today was just “okay” for the Bun.

She had a new nurse that was trying her best to console her and keep up with her demands to be held and talked to! But sometimes when the nurse has 2 other babies to care for, it doesn’t make Ella happy! She wants all the attention. And since the nurse was not able to do that, Ella was frustrated and had some episodes that required increasing her oxygen to settle her down.

So when we arrived in the early afternoon, the nurse was quite happy to be relieved. Ella was immediately better upon seeing familiar faces. Josh and I took turns holding her while she took naps. She was so tired from working so hard all day to fight for attention that she was exhausted!

They are still feeding her 64 ccs of Portagen once every 3 hours. Unfortunately, they have been letting the feeding tube vent all the time again. If you remember, they tried venting for 1 hour afterwards and then decreasing it to 30 minutes after each feeding. When they did this over the past few days, Ella started to retch and experience more discomfort. Instead, they decided to vent the tube all the time for now and try to move towards the other milestones more slowly. They are thinking that maybe Ella’s tummy just needs more time to stretch out.

Other than that, the Bun is doing incredibly well on the nose cannulas. We can’t believe that it has already been 4 days and she has tolerated it! This is definitely the strongest that she has been. We’re so thankful.

Thank you for your continued prayers for Ella and her roommates. Please continue to pray that Ella’s lungs will gain strength. We want to see her continue on the nose cannulas and make progress with her feedings. Par is doing great and just needs to make further progress on his feedings so that he can go home!

Please pray for strength and endurance. It hit us hard today…We are just so tired of the hospital. Plus on top of it, we are really missing the staff in the NICU 3 that we had developed relationships with over the past 20 weeks. That is making the hospital time even harder for us…and Ella too(she is missing all those nurses that got to know her so well)!

Above all else, we praise God for His perfect plan. We submit to Him and trust that He will give us the strength to endure the coming days.

2 Thessalonians 2:16-17
May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word.

It was a BIG day for Ella.
 
At 10:15am, they decided to take her off CPAP and let her try the nose cannula!!! Her oxygen support is set at 500. Maybe the third take on the nose cannula will be her ticket.
 
They are still feeding her at 64ccs over 1 hour, but now they are venting her g-tube over 1 hour too. The goal is to give feeds all at once (a bolus feed) and let her g-tube vent for 5-10 minutes. This is what we will do when we take her home.
 
Ella woke up when she heard our voices this evening. Dad decided to hold her first and was enjoying his time with the Bun. It was a bit concerning because it seemed that it was taking a lot of effort for her to breathe. You could visibly see and hear her breathing rapidly. She sounds like she might have some congestion in her nose too, which can’t be helping.
 
The labored breathing is not different than the last 2 times that she has been on the nose cannula. However, the biggest difference is that when she fell asleep in my arms tonight, and when we put her down before we left the NICU, her stats were awesome while she was sleeping (heart rate around 160, saturations pegged at 100, breathing still high at 80 breaths per minute). We have never seen stats that strong while she has been on the nose cannula.
 
We are hopeful that she will not have to go back to CPAP and that she will be able to tolerate this change. Maybe it will just take some more time for her to gain strength over the coming days.
 
The remainder of this week will be very telling. The first time that she tried the nose cannula, it was only 24 hours and her left lung collapsed. The second time, it was 5 days before she started showing major signs of distress and by 7 days, she was re-intubated because both lungs had collapsed. We’re hopeful that this time will be different.
 
We did not see Jasmine and Chris today, although they were supposed to take Jonathan off ECMO. At this point, we are not sure what to think. Please continue to pray for him and his family.
 
Par is making amazing progress. At this rate, he may even get to go home before Christmas! We are still not sure what type of activity is going on between him and Ella after-hours, but as you may have read on the Rich’s blog, Par’s mitten was under Ella’s crib last night! Mysterious…
 
Please continue to pray for Ella’s strength. It would be amazing for her to not have any major set backs. She deserves that much for her first Christmas!
 
Ultimately, we know that His plan is the best.
 
Psalm 27:14
Wait for the Lord;
be strong and take heart,
and wait for the Lord.
 

Yep, it came as a total surprise…they moved Ella to the NICU 2 today around 3pm!

Actually, they were running out of bed space in the NICU 3 (normally, they do not send babies down while they are still on CPAP). So, it was not quite a graduation, but we know she would not have been moved if they did not think she was ready for it.

Fortunately, I had taken today off work as a vacation day so I was able to assist with the transition and get Ella used to her new space. On another good note, she was placed on a quieter, more private area of the NICU 2 right next to Par. The day consisted of lots of holding, rocking, cuddling and talking to Ella. It was a good time.

Nurse Marla took care of Ella this morning in NICU 3 and mentioned that she saw her do some “retching” about 30 minutes into her feeding (set at 60ccs continous over 1 hour). This might mean that we need to go a bit slower on the feedings to let her tummy expand some more (maybe try 60ccs continous over 1.5 hours).

Also, she was weaned down to a pressure of 3 on the CPAP machine. Steps in the right direction!

Dr. Kays came around this afternoon. We talked for a few minutes and he examined Ella, mostly by talking to her. He let me know that he is very happy with her progress and thinks “she looks great”. That is never a bad thing to hear!

When I left at the NICU at 6:30pm, Ella was fussy. She seemed over-tired. I trusted that the nurse would be able to calm her down. Apparently when shift change occured, Ella was still upset and had her lovely bluish tone to her skin.

Nurse Linda who took over for the night figured it out – – she picked her up out of bed and talked and played with Ella. Then, she calmed down. That was all she wanted.

By the time I brought Daddy back to see her tonight, she had just fallen asleep. She was very comfortable and sleeping hard. Her stats looked great (heart rate around 150, saturations at 100 and breaths per minute around 65).

Seeing her stats look this good was very comforting. We think it means that maybe she will be able to tolerate breathing without CPAP later this week. That maybe she is really getting stronger.

Dr. Kays wants her at a CPAP of 3 through Wednesday. If she can maintain her great stats through the next 3 days, he wants to try the nose cannula on her this week. We feel confident that she will stay strong to take that next step. We just don’t know if she will be able to maintain on just the nose cannulas with oxygen support. We hope so…what a perfect holiday gift.

Par seemed to be doing good today – – just working on his feedings and enjoying his mommy for the majority of the day. On the other hand, Jonathan does not look good. Although I talked to Jasmine this morning and she still seemed hopeful, the tone changed this afternoon. A nurse from NICU 3 came down to the NICU 2 to look for the “comfy” chair since Jasmine was going to get to hold Jonathan for the first time. Normally that would be exciting, but under the circumstances, I am sure it was tough for Jasmine. She is still trying to remain hopeful that Jonathan will defy all odds and that God will provide a miracle. Please pray for her and Chris as they endure this incredibly painful time.

Please pray that Ella will remain strong and be able to reach other milestones this week.

Also, Ella’s great grandma was admitted back into the hospital on Saturday morning. Please pray that she can regain her strength. Finally, Ella’s grandpa Jack has been very sick since the fires in San Diego. He has had trouble breathing from the smoke inhalation. This week, he went to the hospital and was diagnosed with pneumonia. Please pray for the Lord to heal his body and restore his breathing.

We thank the Lord for this time and we trust that He has a plan.

The weather in Denver is frightful, but the Bun is so delightful.

They discontinued her fentanyl today – – that is HUGE. This is the pain medicine that she has been on since birth. They are going to wait a few days just to make sure, but if all goes well, it means that her central line will come out soon. It is a potential source for infection, so the sooner it is removed, the better.

When we came to see her, she was just getting ready to shut eye. She must have felt our presence, woke up and decided to hang out. It was great to see her and hold her. You could tell that she was tired, but the excitement of her parents was too much.

She tried taking cat naps, but never really fell asleep in my arms. Therefore, 2 hours later, she became over tired and quite fussy. Finally right at shift change, she fell asleep. Thank God!

At shift change, we left and had dinner with Par’s parents – – that was fun. Of course, our conversation is centered around the babies and the NICU. It is such a blessing to have friends that we can talk with at that level…and they really understand. Please pray for Par this week – – that he will make progress with his feedings. Also, he is likely going to have his upper GI test which will test to see if he has reflux. We’re praying for a good outcome.

We have not seen Jasmine in a couple of days and our heart is heavy for her and Chris. Jonathan is still struggling to hold on. We hope and pray that he can overcome this mountain and begin to get better.

Ella has been on CPAP with a pressure of 4 and holding on well since last Wednesday. The plan is to wean her CPAP down to 3 tomorrow. We pray that she will hardly notice the change in pressure. Keep in mind that the next step after a few days would be trying the nose cannula with just oxygen support.

As you know, we are earnestly seeking the Lord’s will for our next steps. Please continue to pray that he will give us strength, endurance and wisdom concerning the decisions we need to make for Ella’s care. Are we to stay local for a little while in Gainesville or move back to Denver right away? As much as we want to go back home yesterday, our true joy comes in knowing that we are in His will and following His plan for our life. Whatever the outcome, we want it to glorify and honor Him.

John 15:5,8
“I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples.”

p.s. Yep, you guessed it. Pumps likes the Christmas tree too!