I didn’t sleep that well last night. Ella slept solid through the night, and Tina could’ve cut down trees with her zzzz’s, but I found myself waking up multiple times just to catch a glance of Ella’s “numbers” across the room. I just want her to be better. I want her to have a break from not feeling so good. I want us to have a break from her not feeling so good.

Being outside the hospital definitely has its comforts, but what has been really difficult is the fact that we’re continuing to deal with uncharted territory these days. I mean, we thought that when we finally went home, the mystery of Ella would be solved in regards to her care at home. We thought we would return to the hospital if she became ill or had any major complications, but not just as a continuation of the mystery that was never solved in the NICU.

With all she’s been through at the hospital, the decisions were more in the hands of Dr. Kays and his team. Now, it’s reversed. Most of the control is in our hands and the doctors are there to consult, but the issues that Ella continues to experience are still mysterious.

Does it make sense that it was less difficult to surrender to the Lord when we had limited control in the hospital, but now it’s harder because we have more control? I know the truth, that the Lord is ultimately always in control, but until I can fully surrender, true peace and rest is not realized.

We were hoping that the reduced calories in her food would minimize Ella’s discomfort. Well, at her 3 ‘o clock feed she started getting real uncomfortable. She started retching and pushed all her food back up into the tube. She was crying so hard that she couldn’t catch her breath and started getting diaphoretic (sweaty). This is so hard to see because she gets real upset and turns purple. Kinda like when your kids have been in the pool to long and there lips are purple, that way, but all over.

We upped her oxygen and clamped off all the food she pushed out and removed it. After this we were able to start calming her down.

Oh…we know we’re not alone in these moments, our Heavenly Father is right there with us, but it’s still so hard to go through. We feel so helpless. Especially because Ella’s doctors don’t have any exact answers on what to do. We did text one of the nurse practitioners who’s been an amazing resource. She suggested adjusting the volume and frequency of the feeds. This does make sense because our feeling is that it may relate to the amount of food going into her belly at one time.

So we’ll be feeding her 10 times a day every 1.5 hours, and a continuous feed at night for 8 hours. We’ve done two feeds this way and she’s tolerated it. Time will tell if this works.

Tina has been so incredible with Ella. She rarely left the Bun’s side the entire 9 days she was in the hospital. Some NICU friends were sweet to stop by and give her a break so she could take a quick shower or grab some coffee. Now, she’s giving her all her focused attention at home, with minimal help from me because I’m consumed with a big project and will be working through the weekend to complete it.

Grandpa headed home today as well Aunt Shannon. It was so great having them both around. It really emphasizes how much we miss being close to family. Thank you Grandpa for doing so much laundry, scrubbing dishes, and cleaning around house. Thank you Shannon for the groceries, Ella’s welcome home cake, and for running errands for Tina.

We were also surprised by some welcome home flowers today by a friend of a friend. They’re beautiful and much appreciated.

Please continue to pray for discernment and wisdom on how to proceed with Ella’s feeding plan this weekend. We really want to find a way to feed her that does not cause discomfort. Also, that her fluid would continue to reduce so that when she visits Dr. Kays on Tuesday and has labs drawn, that her BUN is higher (less fluid on board).

Yay! We’re back home, and a full home it is. Ella’s Aunt Shannon is in town for a visit and Grandpa is still here too.

Shannon had a conference in Orlando and planned to come up and see the Bun before she flew back to California. She spent most of the day with Ella and Tina in the hospital. Shannon even stood by as Ella’s G-Tube button was swapped out for a new one. Tina stepped out for this, as would I had I been there ;-). Ella’s other “Aunt” was also there for the quick procedure, right in time to give her some comforting cuddles.

Previously Ella had a Microvasive Mini-button for a G-Tube. It was low profile and looked real clean. The valves in these tend to be flaky though, and hers broke early on. We decided to go with the Mic-Key version this time. This one sits away from her body a bit more, and is more visible. There are some pros and cons to each one, but we think this will work best for us moving forward.

We’re still trying to find the balance for Ella’s food. It looked like the increased caloric version (28 cal) started causing her problems within 24 hours of giving it to her. We first thought it was a volume issue, but even after doing a pump feed over an hour, she still got fussy. So for now, we’re dialing back to 20 cal formula and will work our way back to the full 28 cal in the coming days.

If there’s anything we’ve learned about Ella, she’s not big on change. I think the rule is, if you can go slow, by weaning down or slow steps up, she tends to do better. This also applies to the meds she’s on. Considering that she’s doing ok at the moment, no changes are scheduled, unless her labs say otherwise. I asked Dr. Kays about weaning any meds (thinking of her hefty dose of diuretics), but he doesn’t want to change anything if it’s working (this is very understandable considering Miss Ella). I affirmed that if he’s ok with it, I am too.

At this moment, Tina is holding Ella and Shannon is singing her lullabies. Ella was a bit overtired tonight because she didn’t sleep too well today, so we’re trying to put her down for the night. We finally got her settled in bed and it looks like she’s comfortable. Her numbers look good too, especially considering where they were a 8 days ago. She’s on 500ml of O2 and she’s saturating 100% with a heart rate of 135. She’s zonked out pretty good and we expect her to sleep through the night.

Please continue to pray for our baby girl. Her fluid issue is getting better, but it’s not fully resolved, and we need wisdom in finding the right balance of meds moving forward. We also ask that she may handle the increased calories in her food in the coming days. Please also pray that Tina and I get our rest so that we can give our best to Ella. This is the first night Tina’s back in her own bed so hopefully she’ll get a solid nights sleep.

Right before we left the hospital today, a volunteer walked in and said that she had been praying for Ella. It turns out this person goes to a church that a friend of a friend goes to. It was so neat to see her look upon Ella for the first time after praying for her for so long. It turns out she didn’t even know about the blog, but had been in prayer for our girl on a continuous basis.

What an incredible blessing…to have so many come before the Throne of our Lord, to lift up Ella Renae…people we have never met. We look forward to having you all meet her in person some day. Thank you again for being such diligent prayer warriors.

Blessings to you and your families.

Philippians 4:4
Rejoice in the Lord always. I will say it again: Rejoice!

Everyone who’s ever gotten a good nights sleep in a hospital raise your hand…anyone…anyone…yeah, didn’t think so.

So let’s be totally exhausted and then NOT get a good nights rest. Unfortunately for us, this is playing with a bit of fire, because if our immune systems get compromised and we get sick, we risk getting Ella sick which could be very bad.

We have been really spoiled after seeing her look the way she did last week. If we think about it, her current stats may have looked OK a few weeks ago, but now that we’ve seen Ella look as good as she has, we know better.

At this moment, Ella is stable but she isn’t even close to looking as good as she did when she was discharged. She is very fussy, and inconsolable. This is hard to see and our emotions are so raw that they’re hard to control. There is nothing familiar about this place and tears seem to flow pretty easy for both of us.* We can’t even really take time to recharge because we cannot trust to leave Ella alone in this part of the hospital. In the NICU she had 24/7 care in a secure area, and from a core team of nurses that knew (and loved) her.

A theme that has been a challenge while being at the hospital is the breakdown of communication between parties. It felt like we were finally getting the hang of things in the NICU, but now we’re having to start all over again with a new team. What blows my mind is communication between the NICU and the pediatric area is non-existent. We are still under the care of Dr. Kays mind you, but now there’s a different way of doing things.

We had spoke to Dr. Kays briefly yesterday at about 1:30pm, but our conversation was interrupted by a phone call he had to take and we didn’t hear back from him. As of 10am this morning, nothing had been changed to improve Ella’s condition. This was pretty frustrating and we didn’t know what the game plan was.

We expressed this frustration to the ARNP (Advanced Registered Nurse Practitioner) and she really did well to listen. She communicated this to Kays, and he came by in the afternoon to talk to us. Of course, when he came by, Ella was sleeping and behaving herself, so he didn’t see how she had looked clinically when she was having an episode.

After expressing our concerns to him, he made the call to take advantage of that painful IV that Ella received yesterday and give her some Lasix. We were good with this, because in the past it had always helped pull our girl out of these spirals. Well, the bummer news is that we did not see Ella respond to the Laisx like she has in the past, and she still looks a little puffy.

Also, Dr. Kays ordered an increase in her Bumex to 1mg twice a day. He’s taking this direction because her blood work looked ok except for her BUN. Kays usually likes to see this number around 24, but Ella was coming in around 12. A lower number indicates more fluid in the body, so giving her more diuretics makes sense.

So far though, Ella continued to have multiple respiratory distress episodes this evening, all of them requiring blow by oxygen just to get her to calm down.

The bottom line: We wish we could be admitted back to the NICU 3 where the doctors there really know our girl, but hospital policy prevents this. This really stinks, and I would understand it if Ella’s mystery problem had been resolved and we were coming back 2 months later because she was sick with something else.

Ella also had an echo cardiogram today and it didn’t show any signs of shunting or pulmonary hypertension. This is good, but it was taken during the one time she was asleep today and not under major duress.

At this point we just hope Ella sleeps well tonight so we can try and do the same. She was given some Tylenol and something for possible gas pains so at this moment she is passed out.

Tina and I are both totally exhausted and we’re fading right now…please continue to pray for the three of us and for Ella to make forward progress.

* In the middle of writing this post (it was written over a span of 5 hours this evening), a person from housekeeping came in to clean the bed space next to us. She asked us how long we’ve been here, and we shared some of our story with her. She started to get a bit emotional, and I felt prompted to go give her a hug. I then expressed how awesome and faithful our Lord has been, seeing us through this entire time. We talked back and forth for awhile (ok…maybe I did most of the talking), and we ended up praying together. God used this time to bless us and send His peace. Our Heavenly Father new exactly what we needed, and Tina and I were so encouraged by this. This affirms a saying that the Lord has put on my heart over the last couple days: There are no accidents, only God ordained moments.

Thank you Jesus for ordaining this moment.

Wow, we’re finally home with our girl, and let me tell you, the last 30 hours we’ve had with her have been filled with joy, tears, and monster doses of anxiety for Dad.

Yes, we did get some sleep last night. However, it was not without some drama. We were sent home with a pulse oximeter which shows Ella’s heart rate and oxygen saturation. This is something we really only expect to use while she’s sleeping, to let us know if there’s an issue during the night (and maybe during the day if she is having an “episode”).

Before falling asleep, Tina and I talked about an emergency plan. For example, what happens with the likely possibility of the power going out, which can happen frequently in Florida. If this happens, her oxygen compressor will alarm real loud to let us know that the power is out, but we would need to have a flashlight handy and immediately switch Ella over to a portable oxygen tank. I had a plan in mind and was ready to jump into action when duty called.

Well at about 4:45am this morning, Ella’s saturations started dropping and the alarm goes off. I went into total panic mode, thinking her main oxygen concentrator failed or something. So while Tina is at Ella’s crib calming her down, I’m switching her oxygen supply and I get it done in no time.

Thank God for my calm, collected, rock of a wife. She informed me that the Bun was fine, but just waked up a bit, cried a little, needed a diaper change (yeah…something every baby does). Tina didn’t have her glasses on and had no idea what I was doing, but once she figured it out, she looked at me with a look only a wife could give her husband. Our girl was fine, I just decided to have a spontaneous “fire drill” at 4:45 in the morning. After catching my breath, I chuckled a bit to myself while lying back down, and fell back asleep.

The scenario described above has been the theme of our experience so far. The amazing wife, totally dialed into taking care of our girl, and Dad freaking out over the smallest things.

I have received an insane amount of smiles from the Bun today. It started from the time she woke up at 7:30 this morning, and hasn’t stopped all day. Nothing like rewarding her crazy father with all those smiles. She’s such a sweetheart!

At this moment we’re putting her down for the night. We praise God for this glorious day, and for this precious time we have with her.

Thank you for your steadfast support for all three of us and for all the words of encouragement. Please pray that Ella will grow in her strength, that her Dad will learn to take a breath once and awhile, and for Mom to grow a third arm so she can continue to take care of BOTH her babies.

Good night all.

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

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

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

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

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

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

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

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

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

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

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

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

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

What a topsy turvy day for our girl. When we left her last night, she was sleeping, and she kept that up all the way until 4am. She woke up very upset and needed to have her oxygen increased. Nurse Linda said that she was very hard to console, similar to what we saw the night before.

Later in the morning, Ella was assessed by the nurse practitioner. Her lungs sounded more “wet” then they were previously, and her clinical behavior indicated how uncomfortable she was feeling. They decided to give her an IV dose of Lasix to hopefully keep her ahead of a very bad downward trend.

It seemed to have worked because as the day went on Ella looked to be improving. Her overall behavior was better, she was not as fussy, pretty consolable if she did get upset, and she didn’t need to have her oxygen increased. She did require a lot of cuddling though, which is not untypical of the Bun.

Another change that will hopefully have a positive impact was based on some research that Tina did last night. Tina found a study online that described the absorption rates and bioavailability of loop diuretics (both Lasix and Bumex). One study described the affects of having the diuretics administered on an empty stomach, compared to a full one. The other study described how high pH levels in the stomach can have an impact in the effectiveness of these two loop diuretics.

She faxed the papers over last night to the NICU and the nurse practitioner and Dr. Kays talked about it today. As it turns out, Ella has been receiving a regular dose of Zantac to help with her reflux symptoms. Zantac increases the pH of the stomach acid, making it less harmful to the esophagus. Based on the described study though, it could also be having a negative impact on the effectiveness of her PO diuretics. It was decided to discontinue her Zantac since her nissen procedure minimizes her need for it. They may also coordinate administering her diuretics when she has more of an empty stomach. Maybe this was part of the transitional mystery for Ella. The next couple days will be telling.

We were glad to see that nurse Andrea had her today. She’s known Ella from pretty much the beginning of our journey (you can see her “sitting the ECMO pump” when Ella was 8 days old). She’s one of the original “Fab Four” and has been there to see Ella through a lot of her rough times, and to rejoice during the good times. She’s even been tough with me when it was appropriate. Like turning the monitor away from my eyes when I was fretting about it, and telling me to just “look at my baby”. Good stuff =).

Even with all she’s done for us, the Bun decided to give her a pretty good scare today by insisting that her CVL (central line) be removed ASAP. Around 3:30pm Andrea was holding Ella and when she went to put her back in bed she saw that the end of her CVL was broken off. A few drops of blood started to come out, so they disinfected the line and clamped it off. Dr. Kays was notified and he removed the central line later in the afternoon. You can view a timeline of these events from our earlier post today.

It looks like the CVL came out without issue, but it did require giving Ella a shot of local anesthesia which she was not to happy to receive. It also sounded like the procedure wasn’t too fun to watch because I heard that Dr. Kays mentioned to Andrea that Ella was taking this better than she was. You can bet that I would have been passed out on the floor had I been observing the procedure.

After the CVL was removed, Andrea gave our girl a “real” bath. This is the first full bath she has had since before Thanksgiving! Not like she didn’t get cleaned up, but Ella likes her bath time so we’re excited that we can start these up again.

When we went in to see our girl this evening, she was passed out in her swing. You can see a couple of the pics we snapped in the slideshow above. The moment we saw her, we felt that she looked a lot better. Once we were holding her, we could tell she was feeling better. She wasn’t fussy, and she seemed pretty content.

The only issue she was having was a good amount of nasal congestion. This makes it hard for Ella to breathe, and when it builds up, it needs to be suctioned out. Holy moly Ella does not like this! Man, when she sees that suction tube coming at her, she just starts getting upset. You need to hold her too because you don’t want her flailing around when there’s this tube being poked up her nose. I’ll tell you though, she turns into a little bluish incredible hulk. She is one strong girl. She scratched Tina on the face pretty good and threatened to throw me across the room. Can’t wait to see what these episodes look like when she’s 4 or 5. Yowsa!

The coming days will tell the true story of how Ella is doing. If it turns out that her PO diuretics are not working, she’ll let us know, and they may need to start a peripheral IV to keep her on track. Hopefully it won’t come to this. Please join us in praying that the transition to PO diuretics will be a success.

Continuing to trust in the Lord in His timing. We are so blessed by this little girl. She has had such an incredible impact in our lives, and it blows me away to hear the stories about how she’s impacting others.

Thank you Jesus for blessing us with the gift of Ella Renae.

3:30pm EST
We just received a call from the nurse practitioner. Ella decided she would try and remove her central line herself! Instead, it snapped in half outside her body spilling some blood. Dr. Kays is now in the process of removing it completely at bedside in the NICU 2.

Please pray for a safe removal. As we mentioned in the previous post, there are some higher risks with removing this line based on Ella’s condition.

We’ll update again once we know more and write a complete post with pictures later tonight.

UPDATE: (4:45pm EST)
Dr. Kays has not removed her central line yet. He went down to evaluate her and she’s stable for the moment. He had another obligation to attend to, but as soon as he’s done, he’ll be back to remove her line. We don’t have an exact time of when this will occur, but we were told it will be happening today. At the moment our girl is sleeping peacefully in bed with her central line clamped off.

UPDATE: (6:45pm EST)
Dr. Kays was able to successfully remove Ella’s CVL (central line). Thank God! Ella tolerated it well and nurse Andrea said that she’s had a pretty good afternoon too. They’re starting Ella on a regiment of low molecular weight heparin to minimize other potential clotting. We’ll give a full update later tonight. Thanks to all of you for the support and for petitioning our Lord for her safety!

Our girl had a very rough day. One small positive, she isn’t running a fever, so maybe the virus is gone. However, it looks like the switch to PO (oral) diuretics, specifically the Lasix, is not doing the trick. Her breathing is labored, her saturations are not her typical baseline, and overall she seems to be working a lot harder.

We thought this might be the case last night when we saw the swelling in her face and her lack of urine output for the day. We were hoping this wouldn’t happen, but Ella’s behavior today confirmed it. She has been very fussy and not consolable most of the time, an indication of respiratory distress. Even one of her favorite nurses (Ms. Marla) had a pretty rough time with her too throughout the day.

After talking it over with Dr. Kays, the nurse practitioner gave her a IV dose of Lasix at 10am (they did this because they know it works and would provide some relief). Sure enough, Ella had a “huge diaper” shortly after this dose.

We think they’ve finally recognized that Lasix administered orally is not working for Ella, so they’re going to try a new diuretic. Instead, they’ll be giving Ella .25mg of Bumex twice a day. We were told that this diuretic is up to ten times stronger than Lasix, and we’re hoping it does the trick for our girl, even when administered orally (via her G-Tube).

Ella’s CVL (central line) is going to be removed in the next couple days by Dr. Kays. This is not totally trivial and under the circumstances carries a higher risk than normal. Remember that her IVC is partially occluded, possibly by a blood clot, and removing the CVL could cause the clot to break free. If this happens, it could prove fatal. The doctors will be administering anti-coagulants to help reduce the clotting, but this is still risky.

The CVL is how Ella gets any IV medications, so we’d like her to be stable with her new oral regiment before it’s removed, but this is not likely. Worst case, they’ll get a peripheral IV if it’s determined that access is still needed.

Late this afternoon, Nurse Marla had to leave the hospital unexpectedly so we headed down to be with our girl a bit earlier today. She looked better than last night (not quite as puffy), but she seemed uncomfortable. I spent a good amount of time rocking and singing to her. She was calm for awhile, but became more agitated as the evening wore on. When we left tonight she was having a hard time going to sleep. Just called to check in though, and Ella has been sleeping since we left (about 3 hours). Hopefully she’ll do a lot more of this tonight.

We can use your prayer support in the following areas:

• That Ella’s respiratory distress will be minimized and for her to be more comfortable
• That our baby girl will respond to the new diuretic (Bumex) that’s being delivered through her G-Tube
• For safe removal of Ella’s central venous line (CVL)
• Wisdom and discernment for Dr. Kays and the medical team so they can come up with the best plan for The Bun

 
Father God, we lift up our baby girl to you. Please send your healing touch, and relieve her of this discomfort. We ask that her body respond well to the new diuretics, and for her lungs to grow stronger. Jesus, keep her safe during the removal of her central line. We pray that no complications would occur, and that she comes through it without incident. Lord, we know that you understand what it will take to heal Ella. We pray that your wisdom be imparted to all who are involved with Ella’s care.

We thank you for the blessing of Ella Renae. May you continue to do your work through her. In Jesus name, Amen.

We still haven’t figured out what is ailing Ella.

We can “feel” that she is not doing well. Nurse Marla took care of her today and indicated that Ella was being more fussy and hard to console. They are still thinking that it might be some kind of virus.

When Tina and I spent time with her this evening, it was hard to get her comfortable. Right before we left, she was sleeping soundly on her belly. Between her clinical signs and her numbers being elevated (heart rate and breaths per minute), we’re sure our girl is not 100 percent.

We don’t suspect that it is the change in the diuretics although, she did look a bit puffy in her face this evening. Also, her overall urine output was low.

She is scheduled to have blood labs in the morning to assess her electrolytes. This will give an indication of how the diuretics are working via the g-tube.

We pray that Ella has a restful night. We’re comforted knowing that Nurse Marla will have her tomorrow.

Thank you again for all your prayer support over the last few days, along with the other 168 days. I feel like we’ve been stretched to the point of breaking, but then given moments to recover. Our Father knows what we can handle, and what Ella can handle as well.

We’re trusting in His incredible sovereignty.

Psalm 73:28
But as for me, it is good to be near God.
I have made the Sovereign LORD my refuge;
I will tell of all your deeds.

Ella had a pretty good night last night, that is up until about 4am. At this time she started to get agitated and became so upset that nurse Michelle had to bump her oxygen up to 700ml just to calm her down. She took her time weaning it down, and shortly after morning shift change it was back to 500ml.

We don’t know for sure what caused this episode, but we think it may be related to a change in her continuous feeds during the night. Her food was increased to 30ccs per hour over 8 hours, up from 25ccs per hour. Tonight they’re going to try venting her halfway though to see if this helps (thanks Janet!).

Ella had an intermittent fever throughout the day as well, and continued to be fussy up until 3pm. Tina and I were concerned that this was a sign of what we’d seen in the past when she’d been switched to getting diuretics through her G-Tube. Her saturations didn’t look good and her heart rate was elevated, visual indicators that Ella’s not feeling well.

After talking it out with the nurse practitioner we noticed that her oxygen flow had drifted. It had dropped to 300ml! This would make a big difference in her saturations, and sure enough, when we bumped it back to 500ml, her numbers came back up. This didn’t happen right away, but took some time.

The Bun slept most of the day, probably from all the drama earlier. Her numbers improved in the evening and she seemed a bit more comfortable too. She even gave nurse Michelle a few smiles when she stopped by to say “hi”. We hope this means that Ella is starting to tolerate her diuretics through her G-Tube. The next couple days will confirm this for sure.

One thing that’s kind of fun is that Ella’s bed was upgraded. It’s like going from a double size mattress to a king size. It’s so big her swing can fit in it too! Nice for her to have the extra space. Just wish it was a little bigger so we could crawl in there and cuddle up with her =).

 
I also want to share something that totally blessed me tonight. The last 36 hours have been emotionally tough and I’d really felt raw. I’d been praying for the Lord to deliver some peace and comfort. While we were there tonight, I happen to start up a conversation with a couple that’s been across from us for the last two weeks. You’d think with my big mouth, I would’ve got to know them the first day we saw them there, but it’s tough because you want to be sensitive to the people around you and respect their privacy.

Well, I’m bummed we didn’t talk with them sooner, but I’m glad we’ve connected now. What an amazing Spirit filled Christian couple! They’ve been praying for Ella over the last couple weeks, and just talking with them was so comforting. Praise God for His providence in how our paths crossed. Such a blessing!

Please continue to pray for our baby girl. This transitional period with the diuretics is so critical. Please also pray that Tina and I receive wisdom and discernment for our girl’s next steps. We continue to trust the Lord in all these things.

P.S. When we arrived after shift change, Janet was holding our girl. There’s a short video below that captured the moment.

 
P.P.S. We haven’t talked to Liz or Rusty, but we have exchanged a couple emails and are keeping up with Par on his blog. Sounds like their easing into the swing of things back in Birmingham, and baby Par is progressing well. He’s eating good (holy leche Batman), and watching movies with his parents. Such a blessing to see him doing well! Praise God for that wonderful little boy!