Ella had a rough day. We’re leaving this post short and sweet. It’s 2:30am EST and we just got back from the hospital. We’ll give more details tomoorw. In the mean time, please continue to pray for our baby girl.

Ella had an OK day today. Her oxygen saturation hasn’t looked as good the last couple days, and she does seem to be a bit more fussy.

I found out from the nurse practitioner that her Lasix had actually been weaned since they had been administering it through her G-Tube. This was a little disconcerting because I would have thought they would want to see how she handled it going through her stomach first before they started weaning it.

I may be wrong, but I’m thinking this might be the reason for Ella’s lower saturation numbers the last couple days. I think the practitioner had thought the same thing which is why she brought the dose back up to the level she was getting intravenously. She also gave her a little extra dose to help her along.

It’s my hope now that they were able to catch it in time before our girl decides to go down that known slippery slope. The next few days will be telling.

She also received her vaccinations today. This could also be contributing to her discomfort. This is expected though and they will be giving her Tylenol over the next 24 hour period to help her feel better, and to keep any kind of fever at bay.

The nurse practitioner also discussed some preliminary results of Ella’s MRI. The good news is that there is no evidence of recent bleeding in her brain or other eminent problems. The news that comes as not much of a surprise, considering the seizures she experienced a few months ago, is they do see some cell damage in the left hemisphere of her brain. We did not go into details of the exact location or how extensive, but they would like to talk to us in the coming days about the specifics.

We hope as we find out more, it can help us better tailor Ella’s physical and occupational therapies to help overcome any deficiencies that this may have caused. This is also very different than an adult experiencing this kind of damage. Her brain has not yet developed its paths so there is a lot of opportunities for it to rewire itself to work around any damage that occurred. We just want to be sure to give our girl the best opportunity to do so.

Ella had nurse Marla taking care of her again during the day, and I was comforted to see nurse Janet with the Bun tonight.

Our girl seemed to be having trouble getting comfortable. We tried a few different positions, changed a wet diaper, and still no luck. Janet then offered to hold her (I was wearing a mask because I’m not feeling 100%) and so we tried that. She settled a little but then starting fussing again.

It was time for her Tylenol so I just held her while Janet prepped her meds. She really started fussing…then….there was this significant noise emitted from my daughter followed by a not so rosie smell. We then proceeded to put her in bed so we could investigate. Needless to say I quickly offered to handle the binky side of the baby while Janet went in for a look.

Well no wonder why she was fussing so much. I would have fussed too if I had all that wanting to come out of me. After we got her cleaned up she seemed a lot more comfortable.

It took some doing but she finally went to sleep (yay).

Tina comes home tomorrow night and we’ll be spending the weekend getting the new apartment set up.

We pray that Ella’s discomfort is only temporary and not a sign of her taking steps back. As much as we’ve appreciated the NICU, we are really looking forward to taking our girl home.

It’s on days like today that I’m reminded:

“Look at the baby, don’t look at the numbers…look at your baby.”

That’s what were told to do…over and over. I get it, but it’s hard when you see the numbers not looking like you hope they would. Add to that a baby girl who seems a bit more fussy, and your experience with past events, and you start feeling a bit anxious.

“Look at your baby”

Oh…yes…she is so pickin’ cute. She is so wonderful and has such an incredibly sweet spirit. She was knitted together by our Creator. Everything about Ella is exactly how God intended her to be. He has a purpose and a plan for her life. He knows exactly all the events that need to take place, and is in complete control of every circumstance surrounding her.

These are not things that I’m trying to convince myself of, these are things that the Word of God promises us. Peace when we trust in Him, comfort when we surrender to Him, grace and forgiveness when we confess to Him.

If any of you, who have read this blog, are still wondering where our peace comes from, let me say it plainly: Jesus Christ

Oh, my flesh will get in the way, and I personally struggle with anxiety, but when my eyes are fixed on my Lord and Savior, there is a peace that washes all of it away.

Whew…I think a little bit of my Father was coming out in me there. Those of you who had the pleasure of knowing him, understand what I’m talking about.

It’s 11:30pm, and as I look around the apartment, and listen to the silence, it really blows my mind that we’re still here in Gainesville Florida. Our baby girl has been in the NICU for one hundred and fifty days! We originally thought we’d be here, at the most, 12 weeks….but we’ve been here just a little longer than that. I know without a doubt that there’s a purpose for us being here so long, and even longer now, considering we’re not planning on going back to Denver until summer.

We have been so blessed by all the people we have met…the other NICU parents, their babies, the amazing nurses that have taken care of all of us, other CDH parents, family of friends, friends of friends, and others who know us through our blog.

We’re here because of this sweet girl God has entrusted to us, and we continue to stay here for the same reason.

Lord, we praise you for this day. We thank you for this journey you have set us on, and trust in your path you have laid before us. Let you will and direction be made clear to us daily as we look to you for wisdom and guidance. Your name is above all other names, there is none greater than the great I AM. We trust you Father. Amen

Whew…what busy a day. My work schedule was jam packed and in between I had to take Tina to the airport, and then, oh yeah, go see the cutest Bun ever!

Ella’s had quite a bit of activity in the last 24 hours, so she’s even more worn out than usual. She had a blood transfusion yesterday, an MRI today…ahh, you know what I really think is wearing her out though? These days, she has to sneak all the way across the NICU to see her friend Par without anyone seeing her. I thought the bottom of her socks looked a bit dirty…hmmm.

Overall though, Ella had a so so day.

She wasn’t real excited about having the MRI done and for this to be affective, they need her to keep still. Nurse Marla tried everything to keep her calm, short of crawling into the MRI machine with her. If it was actually OK for Marla to do this, I know she would not have hesitated =). For this reason, they gave Ella a small dose of fentanyl to calm her down. After this, she was nice and relaxed.

Dr. Kays ordered the MRI, not because there is anything wrong with Ella, but instead to proactively check for any other potential brain issues before she’s discharged. We don’t have any results yet, but look forward to hearing what the radiologist has to say.

When I went to see Ella tonight, she was awake, but she looked a bit tuckered out. Her breathing appeared to be a little labored as well, and her saturation wasn’t as good as I’ve seen in previous days (95-98%).

I spent some time, holding, rocking, and singing to her. She started to settle down but couldn’t quite get comfortable. I laid her down in bed, and noticed that her G-Tube button looked a little inflamed. The nurse said that it needed to be cleaned, so she took a damp cloth and did just that.

Our girl wasn’t too excited about this process. I think the skin around this area has broken down a bit, due to small amounts of stomach acid, which make it sensitive. Even part of her scar seemed a bit more inflamed from it. It doesn’t look like infection, and the nurse practitioner and attending doctor are aware of it.

After her belly was cleaned up, I suggested an idea another nurse planted in my head about putting Vaseline around the button. Ella’s nurse was thinking the same thing. After applying the ointment, Ella requested to be held again.

I finally was able to get her in a comfortable position and she went out! Totally fell asleep. The nurse then removed her feeding tube, and closed off her button. Ella barely noticed.

I held her for awhile, then figured it was safe to put her back in bed. I was able to lay her down, she woke up for a second, and fell right back to sleep. She looked very comfortable, and her numbers did too. I then looked comfortable myself (heh).

I then said my goodbyes and headed home to the apartment. While driving back I started thinking about our journey. I can’t even begin to process all that we’ve been though. There’s part of me that doesn’t believe we’re even here. Another part of me feels like time has flown by so quick, and yet another part feels like it hasn’t gone fast enough!

It’s amazing to look at this miracle girl and ponder all that she’s been through. We are so blessed to be Ella’s parents, and we praise God for giving us the privilege of loving this wonderful 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.

What did Tina want for her birthday? To shorten her “to do” list, of course! We went out shopping today for housewares for the apartment we’re moving into the day after Christmas. Our original plan when we moved to Gainesville was to rent what we needed considering we wouldn’t be her more then 12 weeks (heh…so much for that). Now that we’re going to be her ’til summer, this no longer makes financial sense.

After our mini shopping spree, we headed on over to the hospital to see our girl. The Bun has been maintaining her steady track. She looks good and her numbers look good too. Her feeding is doing ok, but she seems to be retching more. They tried the plan of venting 10 minutes before feeding and 30 minutes after, but Ella doesn’t seem to be tolerating that well. So they’re letting her vent longer and hope to slowly reduce the post feeding vent time. We need this to happen so Ella can get to the bolus feeding stage.

We saw baby Par’s mom and grandma (Liz and Barbara) on the other side of the NICU. We switched for a bit and Barbara sat with Tina while I hung out with Liz. Barbara was able to hold Ella for a bit which was so great. I had told Liz that it was Tina’s birthday, and of course I received a bunch of grief for not telling her sooner (hehe).

Barbara invited us to dinner with them, so all five of us met up to celebrate Tina’s birthday. We had a such a great time hanging out, sharing stories, laughing about those stories, and a bit at each other =).

After dinner (thanks again Barbara!), we headed back to the NICU to be with our girl. I was hoping to see Jasmine and Chris before they left town. Yesterday, they indicated to Tina that they might stop by today. I was hoping they would so I could say goodbye, but it doesn’t look like I’ll get that chance.

Thank you again to all of you who prayed for this precious family. We have been blessed by our lives crossing paths, and we continue to pray that the Lord will draw them close to Him.

It’s almost midnight, and Tina and the nurse are putting our baby girl to sleep. Rest well sweet Ella and know how much you’re loved by so many, even more so by our Savior.

Tina took the day off work to spend it with the Bun while I worked hard to complete a project due at work next week.
 
Ella continues to do well on the nose cannulas. She did have a couple meltdowns today, but Tina was able to help calm her down.
 
The only change today is that they are venting her feeding tube for 10 minutes before feeding her. Then, giving her 64ccs of Portagen on a continuous feed through her g-tube, venting for 30 minutes afterwards and finally closing the tube off until the next feeding.
 
I went back with Tina tonight, and spent some time holding our girl. Honest to God, I still don’t believe that she’s my baby. I look at her with awe and wonder. I can’t believe that Tina birthed her…I know Tina has an easier time believing that one ;-).
 
Our girl has come so far, and we praise God for the incredible progress she has made. She is such a miracle.
 
Thank you for all the love and support.

Psalm 42:11
Why are you downcast, O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.

Baby Jonathan went to be with our Lord yesterday. Our heavy hearts pour out for his family and we pray the Lord’s grace upon them. Please pray that Jasmine and Chris will seek the one true source of peace during this difficult time.

Lord Jesus, we thank you for the opportunity to be touched by this boy’s life. We take comfort knowing that he’s in your arms right now. Praise you Lord for your grace and mercy.

Father, we lift up Jasmine and Chris, and we ask that they would draw near to you. Lord, touch their hearts. Let them know that you’re right there beside them at all times. You are the Wonderful Counselor, the Mighty God, the Everlasting Father, the Prince of Peace. Bless them Lord. In your Holy Name…Amen.

Ella Renae is doing alright today. I think she might have been getting a little too flirty with baby Par, so the nurses decided to move her bed…to the opposite side of the NICU.

She had a pretty good temper tantrum earlier as well. They tried everything to calm her down, holding, rocking, the binky, a clean diaper, etc., but nothing seemed to work. Fortunately the nurse was able to get her stabilized by increasing her oxygen flow up to 1 liter. Eventually she stabilized and they weaned her oxygen back down to 500mL. After this, she pretty much behaved herself for the rest of the day. The fact that her numbers came back in line is a good thing.

Tina and I are still a little nervous about her progress, mostly due to our previous experience. We’re really hoping that she will remain stable enough to keep off of any kind of mechanical ventilation. So far, so good though. We expect to have some episodes where she gets really upset, but hopefully some holding, rocking, and increased oxygen will be all it takes.

That’s the thing with our girl. She doesn’t have a lot of reserve. What I mean is that, when she gets upset, it takes a very short time for her stats to drop and for her to desaturate. Now over time, we expect her to get stronger, but it’s going to take just that…time.

After seeking the Lord in prayer, and through your prayer support as well, God had given us strong confirmation to stay in Gainesville until the summer. This decision did not come easy. We REALLY want to go back home to Colorado, but we know without a doubt that God wants us here for now. Our desire is to be obedient to where He wants us to be.

We weren’t sure how the details would work out, but we knew that if He wanted us here, things would fall into place. Thankfully, Tina is able to perform her job remotely, as she’s been telecommuting for years. However, I would normally go into an office everyday in downtown Denver. My employer was kind enough to let me telecommute with the expectation that I’d only be gone 8 to 12 weeks. As you know, it’s already been 20+ weeks and they gave me an extension because Ella is still in the hospital.

A big part of our confirmation for this decision, was whether or not my employer would continue to let me telecommute for this extended season. Without hesitation, they gave their blessing. Thank God! We perceived that this would be our largest roadblock, but now that it’s been overcome, it frees us to focus on what’s best for Ella.

Our instincts are telling us to stay close to Dr. Kays while she is still fragile. The reality is, once our girl gets out of the hospital, it’s not like we’re going home with a totally fine baby. Ella’s going to need the best environment to grow strong so that she can increase her reserve and eventually be exposed to the elements of the world. She’s not going to be able to do that right away. She’ll need to ease into it.

Driving back to Colorado, during winter, combined with the increased altitude is not the best scenario.

Plus, we need to take more time to prayerfully consider and research her future care in Colorado. The preliminary findings through the Children’s Hospital in Denver were not very promising.

One blessing we didn’t expect when we started this journey is the outpouring of support and friendship we have found in the staff in the NICU. We’re excited to see what God has in store for us.

Please continue to pray for our strength as we look to extend our time in Gainesville. It has been emotionally draining to be away from family, friends, and our familiar surroundings, but our desire to be obedient outweighs these feelings.

Psalm 117:2
For great is his love toward us,
and the faithfulness of the LORD endures forever.
Praise the LORD.

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.