Ella does not look good.

When we visited late tonight, she looked puffy. Her oxygen was at the highest flow on the nose cannula at 1 liter and her saturations were low to mid 90s. Also, her breathing looked slightly labored. She had weight gain of 50 grams which is high and indicative of fluid retention.

Dr. Kays came by earlier around 5pm and her oxygen was at 800 ml – he thought that was too high for her, so he began questioning the nurse about why it was set high. He wants her to be able to maintain at 500 ml or below. If she isn’t, something is wrong and she is headed down the wrong path. Since he didn’t think she looked that great (she looks worse now), he wrote an order for an additional dose of bumex (.25 mg every 8 hours).

We’re hoping that when she receives the additional bumex at 2am, that it will do the trick. Fortunately, Dr.Kays is around this weekend and we hope to see him at some point.

Please pray for our baby girl. It’s so hard to watch her struggle to breathe. The Lord knows just what it will take and we need His wisdom.

Proverbs 2:5-7
Then you will understand the fear of the LORD
and find the knowledge of God.
For the LORD gives wisdom,
and from his mouth come knowledge and understanding.
He holds victory in store for the upright,
he is a shield to those whose walk is blameless.

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.

Wow…it is amazing what a difference a day can make.

Thank you so much for all the specific prayers for the meeting today along with all of Ella’s recent needs. I feel that today is when we really felt the answers to our prayers.

When we called this morning, Nurse Marla was assigned to Ella. That was an answer to prayer. It was so comforting knowing that she could be there for our girl.

Surprisingly, Ella seemed as though she felt much better today. The one difference is that Marla hunted down a fan that she placed in Ella’s bed during the day. Since Ella runs warm (like her Daddy), she thinks that made a difference for her. She was running a temperature in the morning, but it was gone by the afternoon.

They’re beginning to think that it’s some kind of virus again. Maybe the symptoms returned after they stopped the antibiotics in the middle of last week. It is hard to tell what is causing her intermittent discomfort. We are hoping her good day today turns into a good night.

A huge praise: they were able to perform the EEG that they wanted complete. If you remember, they tried this about 2 weeks ago while Ella was not feeling great and had a nurse that didn’t know her, and the test did not work. Ella got worked up. This morning, she had Nurse Marla there with her. Although she fussed slightly while they were putting on all the gear, she settled down and dozed off. Then when she woke up, she gave a huge smile to Nurse Marla (above).

I love that picture – – it shows the true essence of Ella’s personality and spirit. She is such a trooper.

We were anxious for our meeting this afternoon. Once we arrived and visited with Ella a bit, we received a message that Dr. Kays was tied up in surgery and would not be available for awhile. It was around 4pm when all parties gathered.

Praise God – – the meeting went better than expected in many ways.

First off, they reported that Ella had an echocardiogram last Friday and the results were back. She has no pulmonary hypertension. High blood pressure in the arteries that supply the lungs is called pulmonary hypertension (PHT). The blood pressure measured by cuff on your arm isn’t directly related to the pressure in your lungs. The blood vessels that supply the lungs constrict and their walls thicken, so they can’t carry as much blood. As in a kinked garden hose, pressure builds up and backs up. The heart works harder, trying to force the blood through. If the pressure is high enough, eventually the heart can’t keep up, and less blood can circulate through the lungs to pick up oxygen. Pulmonary hypertension is a common side effect for babies with congenital diaphragmatic hernia (with everything Ella has been through, we expect that she would have it). Actually, she showed signs of baseline pulmonary hypertension early on, but as she has grown and developed, the latest echocardiogram shows that it is not present. We consider this a true miracle that she does not show signs of any pulmonary hypertension (you could tell that the news was surprising to all the medical staff involved).

Secondly, we were already told that her MRI done in the previous week confirmed brain damage. But they told us that a baby’s brain function is not localized. As you age, the areas of the brain do localize and settle in specific areas that provide certain functions. Because Ella’s brain function has not localized, her brain still has the opportunity to move these functions to other areas of the brain. Only time will tell.

However, they had ordered an EEG to see how her brain was functioning and whether or not she was having continued seizure activity. Based on Ella’s behavior, our interactions with her, and the opinions of the NICU staff, she was showing a lot of positive signs. But we didn’t necessarily expect the news we received: the test came back indicating normal brain function.

The results from the MRI and EEG give us hope that Ella has the capability to be an independent woman some day. This is not a guarantee that Ella will not have some struggles or deficiencies. However, we know that God made her in His image and that she is exactly who she is supposed to be.

Next in the meeting was one of the things that we were most anxious about: the big debate on next steps. As of Friday, we were told that the neonatologist, Dr. Drummond, had huge concerns about her central line still being intact, since the recent CT scan showed that her IVC was partially collapsed. She would like it removed as soon as possible because of the risk of infection and clotting. On the other hand, Dr. Kays wanted to go in through her central line and the partially occluded IVC and try ballooning out her SVC. We know that when they tried ballooning her SVC before, the risks were high. Back in late August when they tried, it did not produce any gains for Ella. We were surprised that Dr. Kays would want to try now considering that the risks are incredibly high and it did not work the last time.

The Lord used this past weekend to give us a sense that “less is more” when it comes to Ella. Normally, we would trust anything that Dr. Kays recommended, but we were not feeling prompted to go through with an aggressive procedure. Now if Ella’s MRI showed that she was suffering from hydrocephalus or was in any imminent danger from not doing this procedure, we may have felt different. So already before the meeting took place, we felt in our hearts that we knew the answer. This meant that Dr. Kays was going to need to be very convincing.

It was interesting because Dr. Kays took the approach of an open conversation whereas up till this point, he normally comes off very strong about why we need to move forward and complete a procedure. He proceeded to explain his perspective, but when it came down to it, he could not necessarily “recommend” the procedure. You could tell and I verbally asked him to verify that he did not have a conviction 100% that this was the direction we should go with Ella. Once all the information was laid on the table and Dr. Kays admitted that it was risky (she could die) and that there was no guarantee that she would get any positive gain from the procedure, it made our decision easy. This is what we prayed for specifically: wisdom and discernment. We wanted the right answer to be very obvious. (The nurse practitioner later mentioned that Dr. Kays was totally different today. Last Friday, he was insistent that the procedure should be done).

We moved on to discuss Ella’s next steps. We decided that we need to switch her diuretics over from IV to being administered via the g-tube as a priority. Although the CT scan shows the IVC is partially occluded and Dr. Kays thinks it is not in an urgent state, he agrees that it should be removed sooner versus later. The plan: starting tonight, switch the diamox to be administered via g-tube 1x per day and lasix via g-tube 3x per day at a dosage of 10. Last Friday, half of her lasix was delivered via g-tube and as of today, she was not showing signs of respiratory distress. As of tonight, all of her diuretics will be administered via g-tube.

They have tried this 2 other times with Ella and each time, she has gone into respiratory distress and her lungs begin to collapse on her (they get too wet). Remember that although the meds are the same, your body responds much different to a medicine via IV versus orally. It is no different for Ella. We need specific prayer that she will be able to tolerate this change. This is a necessary accomplishment in order for her to come home with us.

We realize that the dosages and types of medicine may not be the sweet spot for Ella. This may take some time and tweaking before we get it right. In the mean time, we need prayer that any signs of distress will be discovered quickly so that Ella does not have to endure any more than is necessary. Another blessing: the next several days will be critical to see how Ella behaves clinically to these changes and Nurse Marla offered to take care of her (she is supposed to work in the NICU 3 the next 2 days, but offered to work in the NICU 2 to take care of Ella instead). This means that Ella will have a favorite nurse and Marla knows her so well, that she will be able to tell if Ella is behaving differently in any way. This is key to having this change/transition work well. Please pray that Ella can tolerate this next step.

Once the diuretics issue is resolved, we will need to discuss food before Ella can come home. Portagen is not a complete nutritional source of food for an infant and so we will need to switch to a better formula. Standard formulas are rich with fatty acids which are key for infant development, but also caused Ella’s chylothorax to act up when it was initially given to her back in August. If all goes well, the soonest we can try any changes with her food would be next week.

All in all, we thought the meeting was going to be harder. We expected the worst and were so surprised with such great news. It feels like the first time that we have ever been given good news, or news that surprises the doctors. Most of the time, it has been tough, hard news. Ella has gone through so much, she is not textbook and is extremely complicated, but she is a blessing. We are so honored to be her parents.

Thanks again for lifting up all 3 of us to the Great Physician. Although the coming days may have its ups and downs, today was a day of refreshment. It was really needed and we thank Him for the peace He has given us. One look at that smile above and all this pain and anguish is sure worth it. We can’t imagine a better place to be.

We love Ella Renae and thank you for loving her along with us. God Bless.

Today was a tough day, for Ella and her parents.

We called in to check on her this morning, only to find out that she was having another rough morning since 4am. They switched the continuous feeds to 30 ccs/hour on Friday night and since then, she has not responded well (continuous feeds go from midnight till 8am). Nurse Janet stated that she seemed uncomfortable, was retching and gagging (basically doing everything except throwing up because she can’t since her nissen surgery).

When she coughs and retches hard, it is like dry heaving which cannot be comfortable, so it makes her upset. When she gets real upset, she can’t catch her breath and that scares her, so then it becomes a vicious cycle.

Thank God that Nurse Janet has her tonight again. We have requested that they consider lowering the food volume back to 25 ccs/hour, to see if that makes any difference. We’re not sure if that will happen or not.

Maybe her tummy is just getting too full and is not ready to handle the additional volume. If that is contributing to her discomfort, I can’t imagine a worse feeling without a way to get rid of it. Plus, she has been having intermittent fevers and an elevated heart rate. Today it was 180 at rest and up to 220 at times. Later this evening, her stools were loose.

All of this has made her extremely irritable and fussy throughout the day. She is trying to let us know that she is not feeling well and is having some discomfort, but no one can figure out what that is exactly.

Aside from the change in food, they changed her evening dose of lasix to be administered via her g-tube on Friday too. Her elevated heart rate and lower saturations have been indicative of respiratory stress in the past. So, this has also been considered as a possibility.

It is weird – – she will be content while you are holding her and out of no where, she will start crying really hard. You will switch positions or try something else and she is fine for a few minutes, and then she will get unhappy fast. So, it almost seems like whatever is happening, the pain comes on suddenly.

Today, they tried giving Tylenol a couple of times to see if that would ease discomfort. Also, they tried increasing her oxygen to 1 liter – – that did not seem to make a difference. The nurse tried venting her g-tube more often (before as well as during the feedings), thinking that might ease her if she is having tummy discomfort. But she reported that it would work well for one feeding but then didn’t seem to make a difference when she tried it later in the day. They looked at her gums again to see if she is teething as well as her ears for a possible ear infection. They just are not sure what to make of all of it.

They took a chest x-ray in the early afternoon. The good news is that Dr Saxonhouse reported that it looks better than her last chest x-ray on 12/31/07. So maybe she is not having respiratory distress and that she is tolerating the lasix being delivered via her g-tube. Her urine output was excellent yesterday and is in line with what it was when she was only on straight diuretics via IV. This is a promising sign. Please pray that she can continue to tolerate the lasix via the g-tube without any compromise to her lungs. If she can tolerate it, we would like to have more of her diuretics administered via the g-tube as the week continues, so we can remove the central line.

Ella is due to have labs in the morning. They will check all her electrolytes and it will let them know if they need to adjust anything else for her, including her diuretics. As a side note, Ella weighed in at 10 bs, 8 ounces last night, which is good weight gain for her and a good sign since her urine output is high (not likely due to fluid retention).

Finally, she is scheduled to have an EEG. Please pray that she will tolerate the test. We are looking for the results to give us a better idea of how her brain pathways are working. The idea was to have the test completed early in the morning, so the results will be available by the time we have the meeting with all the doctors at 3pm. Remember that she has already had an MRI, but they want the EEG to balance out the test and give them more information, so they can give us an accurate diagnosis. Because they can come to the bedside to administer the EEG, we were hoping that Ella would be assigned to a nurse that is familiar with her. We expressed our concerns and so it looks like Nurse Marla might have her, which would be great.

In between her fussy spells, Ella was still being herself, as seen above. I think the smiles were good medicine for us, as we are feeling raw emotionally. It was as if the Lord delivered them at just the right time, to let us know that He is still in control and that Ella will be okay, no matter what the circumstances look like from the outside.

Please pray specifically for these things:

• they will figure out the source of Ella’s recent discomfort
• she can continue to show signs of tolerating her diuretics via her g-tube instead of IV
• that the central line does not cause any infection
• that her IVC although partially collapsed will not incur any further damage
• that the meeting tomorrow at 3pm will go well and that the Lord will give us wisdom and discernment for the best next steps for Ella’s care
• that He will strengthen and renew us – – we have felt weary the past few days

 
Thank you for joining us on the journey. We appreciate each one of you that has lifted us up to the Father.

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!

Today was a rough day for Tina and me. Ella is doing ok at the moment, but we received a call this afternoon from the nurse practitioner requesting that we have a meeting with her, Dr. Kays, Dr. Drummond, and possibly a neurologist next Monday. This kind of request is not usually a good thing.

This suspicion was confirmed when she went into the details of why a meeting was scheduled. Ella’s CT scan revealed some concerns related to her central line (CVL), primarily the fact that it looks to be causing some occluding in her inferior vena cava (IVC). If you recall, Ella’s superior vena cava collapsed after coming off ECMO (SVC Syndrome), and the CT scan also showed that this is still the case.

The only reason our girl still has her central line is for her IV diuretics. This is why they want to switch her over to her getting all her meds via her G-Tube, so they can pull this line. Dr. Kays has ordered that they start trying this transition again tonight. Half of her diuretics will be given intravenously, and the other half through her G-Tube.

We hope that Ella tolerates this because this is one step closer to coming home. The next few days will be very telling.

Also, they’re planning on giving Ella an EEG on Monday morning to assess the pathways of how her brain is functioning. This, in combination with the MRI results should give a clearer picture of her brain and what she may be up against.

So we don’t know all the details, but we know there is going to be some heavy decisions in the coming days. The neonatologist has one perspective on what the next steps should be for Ella, while Dr. Kays maintains a different opinion. The purpose of the meeting on Monday is to openly discuss all the relevant factors related to Ella’s condition. Ultimately, it will require a decision on our part to move forward.

Please pray for wisdom and discernment during this time. We only want the best for Ella, as do the doctors and staff. Keep in mind that Ella has never been a text book case so there’s no hard and fast rules with how to approach her treatment. We trust that the Great Physician does know what’s best, and we desire to be obedient to what He puts on our hearts.

Psalm 32:8
I will instruct you and teach you in the way you should go;
I will counsel you and watch over you.

Psalm 16:7
I will praise the LORD, who counsels me;
even at night my heart instructs me.

Ella had a GREAT day.

Nurse Marla was scheduled to be in NICU 3 and traded places so she could take care of Ella. That was so sweet!

This was especially important because Ella was going to get her CT scan today. We were nervous about it simply because we could not be there with her and she would definitely not do as well being transported for a test with someone that she didn’t know.

The CT scan went fine. Here again, a great thing that Marla was taking care of her. They went to wheel her down to radiology and Ella wasn’t excited about hanging out in her crib and being wheeled (she started to fuss). So, Marla picked her up, placed her on her shoulder in one of Ella’s favorite positions, and walked her down to radiology while they wheeled the crib and oxygen. Ella was fascinated by the surroundings. That was a first for her. Anytime she has left either NICU, it has been laying flat in her bed. I am sure the view from a shoulder is much more interesting.

In the radiology room on the table, they have an airbag that they inflate around Ella’s body to keep her in place. Apparently, this is a new piece of equipment to help her remain comfortable and still. Ella sucked on her binky throughout the procedure and behaved well. She started to fuss at one point, but by the time they called Marla to the rescue, she was happily sucking on her binky again.

We don’t know the official results of the CT scan. The nurse practitioner or a doctor has to be present to discuss the findings and the only person we communicated with today was Nurse Marla. She gave us as much information as she could about how Ella did during the procedure and how her day went. She did mention that the radiology technician was having a tough time flushing the CVL (central line) with contrast fluid to test it. Then, he loosened the tension at the CVL site, and apparently the flushing became easier.

When we visited late tonight, Dr. Saxonhouse was in the NICU and mentioned some concern over her CVL in passing, based on the test results. So although we do not have details, we are not expecting good news about the line. This probably means that the functionality of the CVL might be ending soon. Since Ella is reliant on her diuretics via IV, this poses a problem! We are anxious to get a full update, hopefully tomorrow.

When we arrived tonight, Ella was sleeping. She had been taking a solid nap since 4pm. She looked great – – her heart rate was finally down to 135-140 with her saturations pegged at 100 (that is normal for her when she is sleeping and feeling good).

Finally at 8:30pm, we woke her up and assisted Nurse Traci with the hands on. She weighed in at 10 lbs, 3.7 ounces. Her weight is definitely up, even from yesterday. We are not sure if all of it is true weight gain or there is some that might be due to fluid retention. Either way, I feel confident that she is around 10 lbs. That is great weight gain for the Bun!

Once Ella woke up, she was all smiles. Even though she had never met Nurse Traci, she was enamored. All she could do was smile and look around. We have not seen her this happy or pleasant in a long time. Some days she might have small moments where she would break out a smile, but this was like 30-45 minutes straight of smiles and grins. Plus, Marla stated that she was this way during the day too. This is such a good sign – – it just means that she is feeling really good. Her stats show it and you can feel it just by looking at her.

She is back to where she was at the week before Christmas…hopefully even a little bit stronger now. Tomorrow should bring more information on the next steps for Ella. We are not sure if Dr. Kays will want to tackle the food challenge or the diuretics. Either way, we are pretty sure that we will probably be having some discussion regarding the central line.

We thank the Lord for our beautiful baby girl. We praise Him for His wonderful creation of Ella. We can’t believe we are her parents!

We submit in reverence to Him and His plans for our life and hope that we can listen and obey regarding what He wants us to do.

Proverbs 3:5-6
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.