What a great Thanksgiving yesterday! Ella did real well, resting up from her surgery, while Tina and I enjoyed two Thanksgiving meals. One with some friends in town, and the other with Par’s family and Jonathan’s mom.
 
We spent the morning with our girl before we headed over to have our first dinner. Our first meal was fantastic, complete with all our favorites: turkey, dressing, a incredible whipped sweet potato casserole, cranberries, green beans, and mashed potatoes. My grandmother overnighted her special cranberry sauce for us to enjoy, and it really made us feel like we were home. We then finished the meal off with an amazing home-made apple & pear pie. Man, I getting hungry just talking about it! =)
 
After stuffing ourselves there, we headed over to our second dinner. Par’s grandmother Barbara, with some help from others, put on a wonderful Thanksgiving feast at the Homewood Suites Hotel. The hotel staff allowed them to use their kitchen and dining area to put on the dinner. How nice of them!
 
Our time was spent appreciating each others company, and sharing what we were truly thankful for. It was so incredible that God ordained that we all come together in that moment. We are so blessed to have met the friends we have here.
 
Afterwards, we headed back to the hospital to be with our children. Upon our arrival we were excited to find out that nurse Michelle was taking care of our girl. She hadn’t been with her in weeks. It was nice to see her familiar face.
 
The Bun woke up for us to say hello, but went back to sleep after about 30 mins. We then headed home for the night.
 
Upon our arrival today our girl was asleep. She was very peaceful and looked real comfortable. She’s been real alert a few times, and we’ve had a good time interacting with her. At this moment, Mom is reading her “The Very Hungry Caterpillar”, and Ella’s enjoying it.
 
It’s not too fun with her ET tube these days because Ella’s very aware of it. When she was previously intubated I think she was still on a good amount of sedation, and it was all she knew. This time around she recognizes this tube in her mouth and isn’t liking it that much. Plus, it is giving her a pretty good gag reflex. In spite of this, her nose is looking a lot better which is good because she’ll probably be going back on CPAP in the coming days.
 
The IV in Ella’s foot came out today, so they’ll be using her central line to deliver all her meds. Her feedings were supposed to start up tomorrow, but her belly is still pretty swollen from the surgery. This is to be expected, but Dr. Kays indicated that we’ll be holding off on her food until the swelling goes goes down. She’ll be fed intravenously until then.
 
Our girl is scheduled to have another chest x-ray tomorrow to see how her lungs are doing. We’d expect it to look pretty good considering how she’s been behaving. Her vent settings have also been tweaked a bit. She’s now down to 16 breaths per minute and her O2 is at 50%.
 
Baby Par has been moved out of his private room and is in a space right next to Ella. Par is doing incredibly well, in fact he was extubated today! Praise God! So great to see the progress Par has made. He’s now on CPAP and I’m sure in the coming days he’ll get his first taste of some food. Please pray that Par’s lungs will strengthen, and that he will do well when comes time for feeding.
 
Please continue to pray for baby Jonathan. His liver and kidneys are not doing the job they need to be, and Dr. Kays won’t be able to do surgery until they do. We’re asking for healing in these organs, and peace for Jasmine and Chris (Mom & Dad).
 
We pray for Ella’s lungs to strengthen, and for her overall breathing to improve. We also pray for no infection to occur during this time of healing.
 
Thank you for being here with us during this extended journey in Gainesville. You’re words of encouragement in the comments, emails, cards, and prayers mean so much to us.
 
God Bless you all.

Another good day for Ella. She looks to be healing well. The swelling in her belly has gone down, and her scar is less inflamed.

The Bun spent a good amount of time sleeping today. Nurse Kelly had her sitting up in her chair for a couple hours today while interacting with her. She was so pooped out when we arrived that she barely woke up for us.

We did get about 30 minutes of awake time with her. During that period we switched her back to a regular crib. Once Kelly got her positioned in there, Ella zonked back out. Nurse Kelly is so great at positioning Ella and getting her comfortable. She says she envisions how she would like to be positioned, and just does that to the baby. Honestly, I just think she has a magical way with the beanbags she uses.

Dr. Kays saw Ella briefly today. He talked about extubation tomorrow and starting up her feedings. Tina thought that Ella might do better with just one change and suggested that maybe we just start feeds tomorrow, and hold of on extubating for one more day. Ella’s nose still has a scab on it, and we’d like to see it heal just a bit more before we put her back on CPAP. Plus, she’s doing so well, we’d rather push her a little slower this time versus making too many changes. Ultimately though, we trust in Dr. Kays wisdom and will be content with what he recommends.

We were excited for Liz and Rusty today. The were able to hold Par for the first time! What a wonderful gift that is. Thank you for your prayer support for this family. Praising God for this great milestone! We’ve not had any recent update on baby Jonathan, but we continue to pray for his liver and kidneys.

We do have a specific prayer request for Ella. She looks fine clinically, and she’s behaving like she’s very comfortable. However, her x-ray has not improved since Tuesday when she was intubated. We are not real concerned about it at this time, because it might be just a leftover indicator of her micro-aspirating from the reflux (might just take more time to clear up). That being said, we hope it is not actually a sign of anything significant (i.e. fluid issues).

Please pray that Ella’s x-ray will clear up in the coming days and that her breathing will continue to grow stronger. With her reflux under control, and her food soon to be delivered via her g-tube, our main hurdle is getting her lungs better so she can breathe without the support of a ventilator.

Heavenly Father, we thank you for these wonderful children. They are such a precious gift from above. I pray that you will strengthen them, and that their lives will be a living testimony of your love.

We surrender all these things to you, knowing that your in complete control. We offer these requests in the Holy name of Jesus. Amen.

p.s. Can you believe Ella is four months old today!!! =)

Ella had a great day.
 
Nurse Andrea said that Ella spent a good amount of time sitting up in her chair and being social. She even fell asleep while sitting upright in her chair!
 
By the time we arrived this afternoon, Dr. Kays had reduced her ventilator settings down to 8 breaths per minute and 40% oxygen.
 
Also, Dr. Kays decided to start feedings of the Portagen via the g-tube (2ccs/hour of continuous feeds). This is the first time that the Bun has had any food in her belly since her surgery (they have just been giving her IV fluids the past few days).
 
Ella’s nose seems to be healing quite well. We really wanted to see the swelling and inflammation decrease before she is placed back on CPAP.
 
When we first approached Ella’s bed, she was asleep. Then, she must have heard our voices. All of a sudden, she opened her eyes, recognized Mom, and then gave a big smile! It was so cute.
 
We had a fun time hanging out. Dad sang improv tunes to her which made her grin (there is a video below for your viewing pleasure). Then, Mom read her stories and talked to her. She was full of smiles which means that she has to be feeling better. It was the first set of grins and giggles that we have seen in several days.
 
We are not sure of when Dr. Kays plans to extubate Ella. If not tomorrow, I’m sure it will be sometime over the next few days. We’re not in a hurry to have this done because we feel like it is just giving her extra time to gain her strength.
 
Par is progressing along just wonderfully – – praise God! Please join us in praying that he will make huge strides forward, so that he can take on the next challenge of feeding. Jonathan still needs prayer for his liver and kidneys. They continue to not function at a level where Dr. Kays is willing to perform the repair surgery. Please pray for this need specifically as well as providing strength to Jasmine, his mom. Finally, pray that Ella’s lungs get stronger and that she tolerates the feeds via her g-tube.
 
Father, we thank you for sweet little Ella. We praise you for the successful surgery and the progress she has made over the past few days. Lord, you know exactly what she needs to heal and get stronger. We pray for wisdom for Dr. Kays and staff.
 
Also, we lift up Par and Jonathan to you and ask that you watch over their parents and that you continue to work out your perfect will in their healing process.
 
Lord, we thank you for Ella’s smiles…they are a reminder of your unfailing love for us. We trust in your timing of all the details on this journey.
 
Thank you for loving us…in your precious name, Amen.
 

Ella Bun had a good day. At this moment, Mom is doing what she can to calm her down and put her to sleep.

We noticed that Ella’s breathing is a bit more labored this evening. Her breaths per minute have been in the high 90’s. She has been awake, but this is higher than we’ve seen the last couple days.

Ella did have a chest x-ray this morning and her lungs still look “wet”. Her IV fluids could be contributing to her edema, and is probably the reason for her increased breaths. To help with this, she going to be given Diamox in between her Lasix regiment. She’s been on this med before, when she was more edemic, and it seemed to do the trick. We’re hoping for similar success this round as well. She definitely doesn’t look as swollen as times past, but it’s still something to keep an eye on.

Clinically speaking though, Ella looks great! She was happy and interactive tonight, and slept real solid last night. Her scar from surgery is healing nicely, and she’s handling her increased feeds like a champ so far (she’s up to 8ccs per hour right now). On that note, her food is going to be increased 2ccs every 4 hours until she reaches a total of 22ccs per hour of continuous feed. In the same way her IV fluids will also be decreased in the same manner. At this rate she should reach full feeds in about 36 hours.

Baby Par continues to do excellent, and we’re praising God for his phenomenal progress. Baby Jonathan is doing a little better too. His liver function has started to improve, and his swelling has gone way down. His kidneys are not doing so good, but he’s scheduled for repair surgery this Wednesday on ECMO. We hope this surgery will help him take the next steps to getting better.

Father God, you are worthy of our praise in all things. We pray that you will be glorified though these children. Thank you for their lives, and the lives they touch. Let us seek your face in our daily lives, and with every breath praise your name. You are awesome Lord. Hallelujah! Amen

It is hard to believe that it has been 18 weeks.

Nurse Andrea had a great day with Ella. She was a bit fussy this morning, but apparently they were trying to place a new IV line and Ella was not appreciating the hands-on treatment! I don’t blame her!

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 and needed a new IV line to deliver it, thus the bandage on her head.

Ella’s food continued to be increased last night and throughout the day. They are capping her feeds at continous flow of 20ccs per hour and she will be at that volume by 10pm tonight. So far, she seems to be tolerating the feeding well. This is a blessing.

You can tell that having the nissen surgery was the right move for her. Even though she is almost at full feeds, I have not seen any reflux symptoms and she is in a great mood.

Apparently, a couple of staff members were trying to get her to smile today. After several unsuccessful attempts, Dr. Kays approached the bed to check in on her and she gave a HUGE grin. Nurse Andrea said it was just priceless.

Dr. Kays thought about extubating Ella today and asked the nurse and respiratory therapist. After collaberating, they opted to wait until tomorrow morning, get a chest x-ray and make a decision from there. Please pray that her chest x-ray tomorrow looks better. We are hoping that her lungs are no longer “wet” and that she is ready for CPAP.

Par took another huge step today – – he is off CPAP and is breathing via the nose cannulas. So far, so good. We’re so happy for the amazing progress that he has made. Thank you for all the prayers. I have not seen Jasmine today for an update on Jonathan, but either way, please pray for Jonathan. He is scheduled to have his repair surgery on ECMO tomorrow, which is very risky.

Finally, please pray for Josh’s grandma (her name is Kathleen). Ella wants to meet her great Grandma some day, so we lift her up and ask for the Lord to heal her body. She is in the intensive cardiac care unit at Hoag Hospital in Newport Beach, CA (heart and lung issues currently). She went in the hospital this past weekend and is having a tough recovery.

Thank you for all the prayer support. We couldn’t do it without the love of the Lord guiding us each day in His truths as well as the support from all of you out there. You minister to our hearts each day with your thoughtful words and prayers (even those of you that don’t post – – we know you are with us too).

Psalm 103:1-5
1 Praise the LORD, O my soul;
all my inmost being, praise his holy name.

5 who satisfies your desires with good things
so that your youth is renewed like the eagle’s.

The Bun had another solid day of recovery.

She slept most of the night for Nurse Janet, one of her favorites. Then during the day, she spent a lot of time sitting up in her chair listening to her baby Christmas tunes and eyeing those that passed by her bedside, hoping to reel them in for some attention.

In the morning, her fentanyl was decreased slightly from 3.5 down to 3.0. Hopefully, they will wean this pain medicine just slightly every other day or so by .5 until it is discontinued. They have warned that since she has been on fentanyl since she was born, she may have withdrawal. On that note, we will be watching closely for changes in behavior.

Also, they decided to start Reglan and Zantac up again to help Ella digest her food and move it through her system. She was on both of these meds before the nissen surgery when they were feeding her, and just started them back today since she has reached full feeds. Her belly seems to be tolerating the full feeds of Portagen (20ccs per hour continous) and once again, we are happy to report several poopy diapers. This just means that everything is moving through her system as it should since her nissen surgery one week ago today.

Ella had another chest x-ray this morning, but Dr. Kays did not come by till around 2pm to assess and make any needed changes. The chest x-ray did look improved, but only slightly. He moved the vent settings down to 6 breaths per minute at 40% oxygen. His plan is to extubate tomorrow.

When I was visiting Ella, it seems about right to extubate tomorrow. We did not want this too soon, but at the same time, you can tell that the tube is becoming more and more uncomfortable for her. Although she was happy and we were having a nice time together tonight, she paused several times to gag on the tube.

We hope and pray that this is the last time that she needs to be intubated. Once we go back on CPAP, we would like to not look back and visit this stage again. It is just a matter of making sure that her lungs are strong enough and that she does not have any setbacks.

Par is doing amazing. In fact, he is doing so well that he will probably get moved to the NICU 2 within the next day or so. Today, his UAC line was removed and they had a chance to try feeding him with a bottle containing 1cc of formula. Although it was a bit different for him, he did seem to respond and swallow. Such great news. Please continue to pray that he can cruise through the next challenge of feeding.

Jonathan had surgery today starting around 3pm. When I left the NICU around 11:15pm, I could still look over and see Dr. Kays performing surgery with his team at Jonathan’s bedside. That is a really long time for surgery. I ran into Jasmine in the waiting room and she filled me in. Apparently, his liver was in his chest which came as a complete surprise to Dr. Kays (not apparent on the x-rays prior to surgery). In addition, Jonthan formed blood clots in his chest around his lungs. So Dr. Kays had to spend extra time delicately removing the blood clots. Please continue to pray that having the repair surgery will make a big difference and his body can truly begin to heal.

Two more baby girls have joined the NICU that are in the “CDH area”. We know one baby girl has CDH for sure, but are not 100% positive about the other baby. Either way, they are both on ECMO. We do not know the families or the baby’s names, but ask that you lift them up in prayer as well. Being on ECMO means that they are both very ill.

Josh left yesterday afternoon to go and visit his Grandma at the hospital in Southern California. She has been having a tough recovery. Her diagnosis is congestive heart failure. This means that her heart is not pumping as well as it should to deliver oxygen-rich blood to her body’s cells. It happens when the heart’s weak pumping action causes a buildup of fluid or congestion in the lungs and other body tissues.

So, it is somewhat similar to what has been going on with Ella. Grandma’s lungs are too “wet” and so they are giving her lasix to help get rid of the fluid. Earlier, they were not sure if her kidneys were functioning. Later tonight, we received a praise that her kidneys are functioning and therefore some of the fluid is leaving her body, making it easier for her to breathe. She still needs a lot of prayer. Unlike Ella, Grandma has an infection in her lungs which is making her recovery even more difficult.

Lord, help us to surrender and trust in you at all times, in all circumstances. You know the petition of our hearts. Help us to lay down everything in complete submission and wait on you for your direction, guidance and peace.

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

Ella had a rough day.

Her ET tube got clogged with a mucus plug. They tried to suction it out, but they were not successful. In the meantime, Ella was having a tough time breathing and got scared. She turned her bluish/purple color and got very upset. Once she gets this upset, it is tough to console her.

They opted to extubate her since they were not able to clear her airway. From there, they placed her on CPAP. But she was so annoyed, the CPAP was not helping her much. Then, they gave her versed (sedation) to try and calm her down. That was not effective either. Next, they placed an oxygen mask over her mouth to help her. She seemed to respond to that treatment the best, but they can’t stand over her and hold it. So, they opted to try a high flow nose cannula. Initially her stats were not doing well, so they increased the cannula to the highest amount of oxygen. This seemed to improve her stats and get her to a place where she could calm down.

They took a blood gas and it was in the acceptable range, so they left her on the nose cannula and were intending to simply monitor her clinical signs and go from there. Unfortunately, Ella had a nurse that was not familiar with her. This just made the situation more stressful for Ella and the nurse.

By the time I was able to visit in the evening, she was still on the nose cannula. The nurse and respiratory therapist were noting that this was the best she looked all day. But as soon as I saw her, she did not look great. She had a difficult day, but right in that moment, her breathing was labored. Her saturations were low to mid 90s. She was having a tough time – – more than normal for Ella.

My intuition told me that this was too big of a step for her. Immediately, I asked what the plan was for her care. I was told that they were intending to leave her on the nose cannulas and just monitor her. To me, it was obvious that this was not the right thing for Ella.

I asked to speak to Dr. Kays. If in fact they were going to continue down this path, I wanted my concerns voiced to him and/or I wanted a better explanation as to why this was the right choice for Ella.

Dr. Kays had already left the hospital for the day, but he called in. After talking with the nurse practitioner on staff, she came back and stated that sedation was not the answer and the plan was to place her back on CPAP. This felt like the right decision.

The nurse and respiratory therapist were so hesitant to place her back on CPAP because of her negative reaction earlier in the day. But I could just tell that Ella still needed the pressure to keep her lungs expanded.

Since I knew this was going to be tough for Ella and not something that she would like, I suggested that they let me hold her and then switch her to CPAP. This way, I could place her binky in her mouth and try my best to console her with the change (she has missed her binky over the past week).

Thank the Lord – – it went off without a hitch. She made a sad expression, but was over it in about 2 seconds. She let me hold her and began working away on the binky. From there, her saturations increased and stayed pegged at 100. CPAP is exactly what she needed.

I was able to hold her for about 30 minutes and then it was time for shift change, so I had to put her back in her bed. Fortunately, she seemed to stay in a good mood and I stood by her bedside until I couldn’t any longer.

Some other good news for Ella: her Grandma decided to make a last minute trip out to Gainesville! So during shift change, I went to go pick up Grandma, so that we could go back and visit Ella.

When we arrived, I offered to let Grandma hold Ella. This was her first time holding Ella. The last time that she saw Ella was only a short time after her repair surgery in late August, toward the beginning of Ella’s fluid issues. So, Ella looks a lot different!

Once they settled, Grandma didn’t move for 1.5 hours. Her and Ella seemed content to stay put. At this point, it was obvious that Ella was doing much better. She was interactive and looked comfortable. Thus, it was a difficult day with a good ending.

We are unsure of the next steps other than watching her lungs carefully and monitoring her. There is a good chance that she may need to be re-intubated if she continues on CPAP for a while. As we learned last time, her nares can get so swollen that the CPAP is no longer effective in providing pressure and places Ella in a position where she cannot breathe. We are going to try and avoid that scenario and try our best to be proactive. I’m finding it more important than ever to be a vocal advocate for our baby girl.

Par did well today and I did not get an update on Jonathan, but can peek over and see that he is still on ECMO. Grandma Kathleen is hanging on and fighting for her life.

Please continue to pray for Ella’s strength in her lungs as well as the needs of Ella’s roommates. Finally, please lift up Ella’s Great Grandma and ask that the Lord would heal her body.

We thank you for your support and continued prayers. It means so much during this time.

Ella had a good day. There were no changes in her care. She is still on CPAP at 45% oxygen with a CPAP of 6.
 
There was peace of mind because Nurse Angie was watching Ella. Although the NICU was busy today, Nurse Angie is one of the best at taking care of Ella. More than anything, it is great because she is just so sweet and cares so much. You just feel it.
 
I was able to hold Ella for about 1.5 hours today which was nice. I have missed being able to hold her.
 
The rest of the time, Grandma and I took turns talking to her. We had a good time hanging out with the Bun.
 
I noticed last night that Ella seemed congested and it was not any better today. She will cough and it sounds like there are a lot of secretions in her airway. A few times today, she was clearly struggling to breathe. I can tell because she gets that frightened look on her face any time that her breathing becomes compromised.
 
I tried articulating my concerns to the nurse practitioner. However, I was told that this is a normal thing for Ella to experience based on her recent extubation. This may be correct, however it made me feel as if my input as Ella’s mom was completely discounted. All I know is that Ella has been extubated before and yet, I have never seen this type of cough.
 
More than anything, I wanted to feel heard and to know that since it was a concern of mine, they would watch it closely. It was really frustrating to feel like I was not being heard and that my opinions were completely discounted.
 
I asked the nurse practitioner about the plan for Ella over the coming days. I was never given a direct answer. Since we have been here so long and Ella’s case is not textbook, I am looking to chart her next milestone. This is important to me and I feel very frustrated that I cannot get a clear answer from the NICU staff.
 
At this point, Dr. Kays has started to step away from making decisions on her every day care, since most of the surgical work on her is complete. This leaves most of the day-to-day decisions to be made solely by the NICU staff. And it is tough when you a) don’t agree with the approach and/or b) can’t seem to get a direct answer.
 
Once the practitioner had left, I felt the rise of frustration make it to the surface and I broke out in tears. This experience is so tough and it makes all the difference in the world when you feel like your opinion matters, when you feel like they truly want to take the time to figure out what is best for Ella, when they make the extra effort to give Ella a core nurse assignment, etc. Since I have not felt the love the past 2 days in this regard, I think it just got the best of me and I needed a good cry.
 
Then, I went to leave the NICU and asked for a parking pass. They were not able to provide me with one.
 
It just felt like one of those days where every time I encountered anything to do with the NICU, it was disappointing to me.
 
Finally, we were given a visit by the social worker. She comes around periodically to check in on families. This time, she came to talk about the blog. Somehow, the staff at Shands heard about our blog and came with concerns over privacy. She wanted to know if we had received permission to discuss other babies on our blog, such as Par and Jonathan. I assured her that we had received verbal consent. And although we have received specific consent from these parents because we know them, she advised that it would be the best to only discuss Ella. I’ll be honest, I understood why they have to legally come tell me that information, but nonetheless, it was a bit discouraging (Par’s parents were approached too).
 
Since we have specific consent, here is the latest update. Par was moved to the NICU 2 today (such a blessing), so Ella will be missing him! We have not talked to Jasmine since Jonathan’s surgery. Unfortunately, Jonathan does not have a blog, so we will just need to ask that you continue to lift him up in prayer.
 
Once again, I am reminded that we came to Gainesville for Dr. Kays, not the NICU. And that I am so thankful for the other parents we have met on this journey as well as the dedicated nurses and other NICU staff that have come to know and love Ella. In the midst of all my frustrations over the past 4 months, those individuals are like a ray of sunlight.
 
Please continue to pray for sweet Ella’s recovery as well as strength for me and Josh. We need prayer for endurance. Also, we need strength to interact with the NICU staff in a godly way while still being Ella’s advocate.
 
Psalm 59:16
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.

Today was a much better day.
 
Nurse Marla was taking care of Ella – – she is on our core team of nurses. I had not seen her since she returned from the Thanksgiving holiday. She enjoys taking care of Ella and it shows.
 
When Grandma and I arrived, Ella was sleeping soundly. Without saying anything, I think she felt us staring at her. All of a sudden, she opened her eyes to take a peek. When she realized that it was us, she got excited and woke up.
 
From there, we received lots of smiles and laughs. It was a fun time. Then, Nurse Marla situated Ella into Grandma’s arms.
 
I decided to share my concerns with Marla. She has great bedside manner. She listened and was very supportive. It was a refreshing change from the prior day.
 
In the corner of my eye, I noticed that Dr. Kays was helping the other babies that were on ECMO in his Saturday attire (jeans and a Gator shirt). When I found an opportune time, I went over and asked him if I could have 5 minutes whenever he was ready. He made sure that I knew that he was fully intending on coming over for an update, but that he was just taking care of the critically ill babies first.
 
When he came over, he let me know that he is still involved and overseeing her care. I shared some of my concerns and asked for the next steps. He wants to watch for her stability on CPAP and if she does well, look at turning down the CPAP pressure to 5 on Monday (it is at 6 right now). He noted that he is not interested in “sprinting” this time (some CPAP, some nose cannula). He wants to take his time truly weening her down to a presuure of 3 on the CPAP with stability for several days before he will consider the nose cannula. But it will be a straight switch.
 
Now that she has had the nissen surgery, along with the 5 days of steroids post-op and extra diuretics (keeping fluids off of her), he wants to see if she will make slow progress forward as anticipated. If we begin to ween and she shows signs of distress at any point, then he will want to order a CT scan to look at her lungs, pleural cavity and superior vena cava to better assess what is happening.
 
As you might imagine, that was music to my ears. I just wanted a plan so we can know the next steps in her care. Plus, it was reassuring to know that he not walking out of the picture (he has been so busy with other critically ill babies that it was starting to feel that way).
 
On another note, he did mention that it is highly likely that she will need to be admitted to the hospital over the first 2 years after initial release (she does not have the headroom like a healthy baby and the slightest thing can send her back). This stirred up lots of things for me that I have already started to be concerned about lately.
 
We do not have a good network of doctors and specialists back in Denver. I can’t imagine being home for a few months and her needing to be re-admitted to the hospital…especially in a place where they do not specialize in CDH and a place where I do not have the confidence that she would be getting the best care (let’s not forget that in Denver they gave her a 20% chance of survival with no guarantee on the quality of life). Also, the reason that we came all the way out here is because it is hands down the best place for a CDH baby to be born and cared for under Dr. Kays.
 
He mentioned all the different specialists that we would need along with a strong pediatrician. I asked if he had any recommendations in Denver, but he doesn’t. He mentioned that if we were staying local, that he has the name of an excellent female pediatrician. She is smart, he respects her and even better, she has her own child with CDH. Wow, that is appealing!
 
Ella Renae is such a treasured gift from above. We just want to make the right decisions for her. I know that the Lord will guide us and provide peace in those decisions that lie ahead. As with everything else, we just need to trust in Him. As Dr. Stanley always says, “Obey God and leave all the consequences to Him. That is living life at its best”.
 
Thank you for the thoughts and prayers. I truly felt covered in prayer as I walked into the NICU to face another day.
 
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 had a fantastic day. I did too because I got to spend some quality one-on-one time with my girl while Tina and her mom did the mother-daughter shopping thing.
 
When I arrived at the NICU, Ella was asleep. To my surprise, her CPAP pressure (peep) had been weened down from 6 to 5. She’s still on 45% oxygen. Originally Dr. Kays said that he might ween her on Monday, but she’s looking so good, he decided to do it a day early.
 
It was amazing to see this little girl of mine, resting so comfortably. Looking at her cute little face, eyelashes, nose, mouth, arms, hands, fingers, (I could go on), it just doesn’t seem possible that she’s come through everything that she has…but she has, and what an inspiring testimony it is. I’m just in awe that she’s my baby girl.
 
I sat beside her pondering this, when she began to wake up. She gently opened her eyes and gave me some smiles. Such a precious girl. I figured she needed changing so I took care of business. Fortunately for me it was a “nice” diaper.
 
Then, Nurse Marla took Ella out of her crib and got us both settled into a reclining chair. Things were so comfy for both of us that we nodded off. Nurse Joy snuck a picture of us sleeping together. Ella was peaceful and seemed so comfortable. This is definitely the best I’ve ever seen her look.
 
During shift change, I bumped into Liz and asked how baby Par was doing. Overall it sounds like he’s doing good, but he experienced some feeding issues today. We hope that this is just a bump in the road and that Par will get back on track in the coming days. Please pray that Par’s feeding will improve and for Liz and Rusty’s peace during those times of feeling helpless.
 
I was also able to catch up with Jasmine. Jonathan is recovering from his repair surgery. It turns out that his CDH was more severe than expected. For this reason the surgery had some complications, taking around 10 hours to complete, but Jonathan is fighting hard and he is making forward progress. We praise God that he’s come through surgery and continue to pray for his kidneys, liver, overall healing, and positive steps forward. Please continue praying for this special boy.
 
After talking to Jasmine I went back to see our girl and was happy to discover that Nurse Janet has her tonight. It’s so reassuring when a core nurse is taking care of her. I was able to help Janet with Ella’s “hands on”, and afterwards starting calming the Bun down in preparation for bedtime. When, to my surprise, Tina walked up. I guess her and Grandma had to stop by and see our girl too. Upon seeing her mom, Ella was no longer interested in closing her eyes. I then went out to the lobby to let Grandma go back and see our girl while I put the post together.
 
Thank you for your continued prayer support for Ella and her friends.
 

 
p.s. I had a good trip out to California see my Grandmother. It was great to surprise her with my visit, and the look on her face alone made it worth it. She totally lit up when she saw me. It was amazing timing too because she was telling the nurse that morning how much she wanted to see me and my little girl. She settled for just seeing me, but I was able to share some videos of Ella with her as well. Currently, she is stable in the Cardiac Care Unit, but her lungs are not improving like we would hope. They’ll be using an endoscope tomorrow to explore her lungs to determine what other treatments she may need. We’re praying for her lungs, heart, and kidneys, and for her pain to be eased.