Ella’s rough night turned into a so-so day. The swelling in her head was starting to cause a bit more concern. For this reason Dr. Kays ordered an echocardiogram thinking that there may be a clot in her superior vena cava. After two of these tests were performed, one by a tech and another by a cardiologist, they were unable to confirm any conclusive results.
 
Tina and her mom spent most of the day with baby Ella. I think it was hard for them to see her so swollen (heck, it was hard for me to see her so swollen the other day too).
 
Dr. Kays had planned on adding a second chest tube this afternoon, but held off due to this mornings x-ray results. He did turn down her O2 level on the ventilator to 50, and she seemed to tolerate it ok, but throughout the afternoon she became agitated.
 
Tina and Grandma came back to pick me up around 8pm tonight. We grabbed a bite and then headed back over to the hospital. We found a couple things had occurred in our absence.
 
Ella’s stats dropped after 8pm, without a quick rebound, and the staff paged Dr. Kays. He then took another chest x-ray and it looked as though the fluid was building up again on her right side. Right then and there, he decided to add the other chest tube. Immediately her stats improved and within an hour and a half, 100 mL drained from her right side. This confirmed that the additional chest tube was working.
 
Tina and I spent a good amount of time with her tonight and she seemed very comfortable. The swelling in her body and head appeared to have reduced as well. We were all encouraged by how well she looked tonight, and her stats confirmed how well she was doing. Dr. Kays mentioned that he was still “pleased” with where she is at, but he’s planning on having another echocardiogram done on Monday just to be sure.
 
We’ll get some better sleep tonight knowing that our little girl seems to be back on the right track.
 
Please continue to pray for the safe reduction of fluid and for no ill affects related to her swollen head. She still has more fluid to lose and it needs to be done slowly and safely.
 
Thanks for all the love and support!
 
A FEW SIDE NOTES: First off, a praise report: baby Evan got to go home today! Second, for the people who may be concerned that we aren’t letting out our tears, be assured that we are crying plenty =). Also, the question was asked about the “bandage” across Ella’s head. Actually, it’s a sensor pad that’s used to monitor oxygen saturations in her brain. Finally, Grandma brought 2 other monkeys to join Ella’s zoo: Julep (hot pink) and Ramona!
 
UPDATE (1:45am EST): Just gave a quick call to the NICU to check on Ella, and nurse Lisa confirmed that she is doing real well. Just wanted to let you all know. =)

Ella sustained through the night and is doing well this morning. She is still losing a good amount of fluid from both chest tubes, so they are replacing her fluids as needed. We don’t expect much to change with her care over the weekend; we’re just hoping for the swelling to reduce.
 
As for the parents, we’re hanging in there. We miss the Colorado weather – – Florida is way too hot!
 
It has been nice to have Grandma visit. She and I escaped a bit yesterday for some shopping at the mall.
 
Then, all three of us went to dinner last night. Josh could not help himself. He took pictures of me last night as I was thinking of my litte girl. We were at Macaroni Grill where they provide crayons and paper for the table cloth. So, I went to town!
 
Thanks for all the support and prayers. We plan to visit Ella later today at the hospital and will take some more pictures to share!

Well, Ms. Ella is doing ok tonight, but I’m feeling a bit more anxious. Her stats are maintaining, she is still fussing here and there (gee, isn’t that what babies do!) and her fluids are reducing.

The reason I’m feeling a bit of heightened anxiety is because her head swelling has not really gone down enough. We’ve not really talked to Dr. Kays about this yet in detail. We last spoke to him on Thursday.

My logic tells me that it is a big enough deal though because he has scheduled her for a test that requires her to move out of the NICU. Ok, moving her is no small task, considering all the machines she’s hooked up to, so this would lead me to believe that he really wants this test done which makes me wonder how critical things are. (Holy freakin OCD batman!) My mind is just on overdrive.

Throw on top of that the fact that Tina is not feeling well — again. She went back to a doctor in the labor and delivery area because she’s having some pain related to her previous issue. They’re having her take another regiment of antibiotics (yay).

Tina may be in pain, but she is not as on edge about Ella as I am. She conjectures that if it were that critical, he would have already made a move to take care of it. This makes sense, but I’m still anxious.

We’re supposed to talk to Dr. Kays tomorrow to go over the details. If you remember, they are concerned that she might have a blood clot that is preventing blood from leaving her brain. Really looking forward to our conversation.

Ella will be having another blood gas test done tonight @ 10pm (EST). I’ll give a quick update later once I know the results.

Mom, Dad, and Grandma are going to escape into a movie now. =)

P.S. I know God is in control. My human nature is just getting the best of me this evening.

UPDATE (10:45pm EST): Adding to my anxiety, Ella is not doing well this evening. Her gases came back with poor numbers (cO2 57 & O2 59). She’s also building up a lot of fluid in her lungs as well, which is requiring suction every 30 – 45 mins. Her stats do come back up after suctioning, but these episodes are definitely more frequent this evening. I can guarantee I won’t be sleeping well tonight so I’ll be posting another update later. Prayers are appreciated.

UPDATE (1:15am EST): They took another gas at midnight. Her gases were even worse this time, but she had been fussing quite a bit. So, still not looking good, but the nurse said that she has calmed down over the last hour. They are not planning on taking another gas until 5:00. Praying that our baby girl remains calm and for the fluid to draw out of her lungs. We know she’s in your hands Lord.

UPDATE (7:30am EST): Shift change at the NICU and nurse Angie is on. I just feel better knowing she is there. Ella is doing a bit better right now, her stats are going in the right direction, but she’s still having a lot of secretions in her lungs. Going to catch a few more zzz’s, if I can, and then we’ll update after we see her this morning.

UPDATE (11:00am EST): Ella is doing better this morning. She’s been awake and looking around for the last couple hours. She’s only needed to be suctioned once. Another blood gas test was done and she’s definitely doing better. Nurse Angie was concerned about the O2 levels in her brain though, so she paged Dr. Kays. He made some adjustments to the ventilator, and her O2 saturations have come back up to 100%.

Dr. Kays is still in surgery so we’ve not had a chance to meet with him. Hoping to this afternoon so we can share more details. Daddy’s breathing a bit easier this morning though. Thank you Lord for your hands that hold our little girl.

UPDATE (1:30pm EST): We finally got to speak to Dr. Kays. He still feels good with her overall progress, but there is concern with her symptoms that show a possible restricted superior vena cava. It could be a clot, but he believes that that vein has become inflamed from having the ECMO cannula inserted into it. This inflammation would cause the vein to constrict, which in turn would cause her fluids to back up. This is also the reason for the large amount of fluid coming out of her chest cavity.

He would really like to verify that this is in fact the problem, and the only way to do this is with an x-ray using contrast. The challenge is, they cannot perform this procedure in the NICU. They will need to move Ella down to radiology for this procedure. The fact that Ella has had her surgery makes this move a little less risky, but they will still need to be careful.

Once they move her down, they will perform the x-ray to determine the state of her veins. If they do see that the vein is restricted, they will insert a balloon to open it up. There are risks involved with this procedure, just like any procedure, but we pray that she’ll come through it without any issues.

Mom and Grandma are spending time with her now (only 2 visitors in the NICU at once). Her stats have been more stable now then they were last night and she looks more calm. She continues to wake up and look at her surroundings.

Tina just came out so I’m going in to take some pics and video.

Ella did better this afternoon. Her stats looked good and she only fussed a few times while we were there. Tell you one thing, you couldn’t peel Grandma off her for nothing! Dr. Kays went to introduce himself but Grandma didn’t dare take her hands off Ella. She stood there in that position (see picture) for almost 2 hours! =)
 
Ella was really awake too. Her eyes were wide and bright and she was really engaging her audience. Angie hung Ramona the monkey above her for her to look at. How sweet is that.
 
It is always so great having Angie as her nurse. It really puts the parents at ease. It’s hard when Ella has a new nurse who’s not had her before. It’s takes them a bit to acclimate to her required treatment. Angie is just so attentive, plus you can see how she really cares for our baby girl!
 
I’ve calmed down after talking to Dr. Kays. Just having the information in his head, plus getting a feel for where he is at, puts me at ease. I’m just hoping that the communication will improve as we move forward. Having a brief phone call with him yesterday would have helped me a lot.
 
My beautiful wife isn’t doing so hot though. The bummer news is that her infection has come back again. We weren’t totally sure last night, but the pain and slight fever have confirmed it. At the moment, Tina is taking a much needed rest in bed and Grandma is socked out on the couch with Pumps.
 
Please pray for healing in Tina’s body and for our baby girl’s possible procedure tomorrow. We hope that when she has the x-ray they decide that the vein has resolved itself, but we’re ready for her to have the procedure if necessary.
 
Thanks again for all the prayer, love, and support. You all have made such a difference. God Bless!
 
UPDATE (6:45pm EST): Just spoke to nurse Angie on the phone. Ella has been sleeping ever since we left and her blood gases (cO2=44 / O2=107) and O2 saturations (99-100%) look real good . She really hasn’t required much suction either which is a positive sign. Thank you Lord Jesus for this incredible gift that is Ella Renae. May You continue to be glorified through all these circumstances! Amen.

Yes, we have already posted twice today, but we couldn’t resist sharing this video with you. Please note that it does require a high speed Internet connection to view.
 
We ask that you pray for Ella’s upcoming x-ray, and possible procedure related to her superior vena cava, scheduled for tomorrow (Monday).
 
Have a good night all.
 
UPDATE (1:30am EST): Just called on our baby girl. She’s doing better then last night, not as good as earlier, but good enough for us to get some rest. Praying for peace and comfort for our baby girl.

(Nathan Greene – Chief of the Medical Staff)

The above image was mentioned by Laura Blackwell and thought we would share (Thanks Laura). This is exactly how I pictured things when our baby girl had her major surgery a week ago today.

Ella had a good night and is scheduled for her x-ray and possible procedure at 12:00pm (EST) today. Please pray.

If you missed it, you’ll want to check out the video from last night’s post. She too picken’ cute!

UPDATE (1:30pm EST): It’s Tina, writing in with an update. Grandma and I went to the hospital this morning to see Ella before her procedure. Her stats were good, she was stable and calm. She seemed very peaceful as she fell in and out of sleep while gripping Grandma’s finger.

Then around 12 noon, they began the preparations to move her down to radiology. That took about 30 minutes. She is connected to sooo many machines and tubes. There were about 7 staff members involved in her transport.

Before they moved her, they gave her a paralytic medicine so she would not move and be lucent. Then, they switched her to a transportable ventilator machine (one that she does not normally respond well to).

As they started to transport her from the NICU and went through the main doors, something went wrong with the ventilator and she was not getting any oxygen. The machine began to beep loudly and they began to bag Ella. Then, they turned around and came back in the NICU to fix the ventilator and stabilize her again. This was tough to watch! I have no idea how long she was without oxygen. It took them about 10-15 minutes to stabilize her again and fix the ventilator.

From there, we went down to the room where the procedure would be completed. When we walked in, it felt like a freezer. Immediately, Dr. Kays told them that the room was way too cold for a baby and they needed to get it as warm as possible.

Once the bed was next to the operating table, they began to unhook everything from her bed. All the drip lines, IV fluids, catheter, fluid bags from the chest tubes, etc, etc, etc. Then, about 4 of them lifted her simultaneously onto the operating table. The prep part of making sure she is stable and all the machines are hooked up again in the radiology room was about a 45 minute procedure.

We followed her down to radiology because they had consent forms for me to sign. Then the doctor (radiologist) came over to talk to me and explain the procedure. Although he was trying his best to be comforting, he was honest and frank: they have only done this type of procedure a few times. It is not common. Then, he went through the laundry list of side effects and risks of going through the superior vena cava vein. He spoke about all the negative things that can happen to Ella.

The art work from this morning helped me to visualize. There were about 10 medical staff in this room with Ella, prepping and stabilizing her. But ultimately, He is with her.

I’ll be honest – – it was a roller coaster morning. We had such a good time interacting with her this morning. Then to see the paralytic medicine take effect (she almost doesn’t look alive), to the drama of moving her and having the ventilator go out, to the radiologist giving me the laundry list of everything that can possibly go wrong with my baby girl and sharing that this is not a common procedure that they have a lot of experience with…man!

As a heads up, it will likely be 4 hours or so before we have any updated information. Thanks everyone for your prayers.

Lord, I know you are in control. Give me Your strength today. Everything that happens is something that you ordain. All of it is for Your glory and Your purposes. Please protect and hold our baby girl in your arms. Thank you for the blessing of Ella Renae.

Tina and I arrived at the hospital this afternoon around 3:30pm and to our surprise, Ella was already back in the NICU, procedure complete. I was anxious to hear any details about what had occurred. When I approached the nurse on staff, she indicated she was not able to give me any information. However, I knew she was there during the entire procedure. So, I was looking for something; anything to let me know how Ella did.
 
The nurse stated, again, firmly that she was unable to give me any information. Couldn’t she at least tell me something? I was looking for her to diffuse my anxiety and instead I got a by the book attitude of “I can’t say anything”. With that response I got very frustrated very quickly and, in a nutshell, I ended up apologizing to her later. So, needless to say, this afternoon was not a “shiny happy people” moment for me at first, but things did get better.
 
Once we were able to get information, initially from Dr. Saxonhouse and then from Dr. Kays, we learned that Ella’s contrast x-ray did show that her superior vena cava had collapsed. There was no clot, but it was like Dr. Kays had thought: Due to the irritation by the cannula, the vein had become inflamed and weakened. This is not something they normally see. He’s only treated two other cases, out of about 200, where this had occurred. This is also confirms the cause for the swelling in her head.
 
To help open the vein back up, they were able to insert a small balloon and expand it a little. They had to be very careful while doing this, due to the risk of irreversible damage to her vein. Thankfully, the procedure was performed without issue and for now it looks like it has done the trick. Also, Ella is receiving heparin to thin her blood and help with the flow. We were told that they may have to repeat this procedure again because there is a chance of a reoccurring collapse. If they do go in again, they’ll be able to utilize some scar tissue that would have built up around the vein and stretch it out a little more.
 
Yes, there was a little drama with her oxygen on the initial transport, but her stats never reached a critical point during that time and she recovered very quickly. Either way, not a fun thing for Tina and Grandma to see. The speed in Ella’s recovery time after this incident was a good sign as well. She was also very stable throughout the entire procedure. Her stats didn’t drop at all and she tolerated all the work doctors performed on her. Thank God.
 
A bit of unexpected good news: Dr. Kays is going to give Ella some of Tina’s milk tomorrow! He wants to get her intestines working, so they’ll be feeding her via a stomach tube. This is really exciting for us because it’s the first time that all of Tina’s work will pay off.
 
At this moment Ella’s stats look good and she’s resting well. Thanks to all of you for the prayers. I know they’ve made an incredible difference in our baby girl’s health.
 
Continuing to praise God for the gift of being Ella’s parents. Thank you Lord…thank you.

Ella had a good night – – we were at the hospital until 12 midnight just hanging out with her and nurse Janet. She was peaceful and sleeping most of the time. I had a great time just holding her feet and having her grip my hand while she was sleeping. I could have stayed there for hours just staring at her beautiful little face.

We called to check in on her this morning and she continues to do well today. Her stats remain stable and blood gases have been in the acceptable range, given her stage of recovery. We are still waiting to see if her fluid reduction will decrease by the end of the day along with the swelling in her head, based on her SVC procedure being completed. She is continuing to receive heparin to thin her blood and prevent clots in the superior vena cava.

As we mentioned in an earlier post, I was pumping every 3 hours for Ella. During that time, the NICU collected and froze my breast milk. So, starting today they will be inserting the feeding tube and beginning to try feeding some of that initial breast milk from the frozen supply (1 ml every 3 hours). Hopefully, her little body will be able to handle the minimal amount.

Unfortunately with 2 rounds of mastitis, I have lost my milk supply and will not have the opportunity to continue to provide breast milk to Ella. However, at least she will have some of the initial breast milk which is better than nothing!

Ella’s next milestone is steady fluid reduction. Currently, the fluid is filling up the space in her chest which is hindering her lungs. Without continual fluid reduction, she won’t be able to progress forward.

By the way, Grandma headed home yesterday right before Ella’s SVC procedure, but she sure enjoyed her time while she was here!

Thanks again for all the posts. They provide such encouragement, love and support during this tough time. And of course, without your prayers, we know Ella would not be making the progress that she has made so far.

Thank you Lord for our friends and family. Thank you for their tremendous support and encouragement during this time. We ask that you hold Ella in your hands and continue to heal her body.

We also want to lift up a special person today that is receiving surgery. His name is Georgie. Lord, you are the great physician. We ask for no complications and perfect techniques by all the staff performing surgery at MD Anderson today. We pray for complete healing and quick recovery. We thank you for this brother in Christ – he is such a blessing. We lift up his family too, especially his Mom. She has traveled to be with him at surgery time and we pray that she would be surrounded with your love and comfort throughout today.

Once again, we praise you for the blessing of Ella Renae and the opportunity to glorify you in the midst of this storm. Thank you Lord.

Ella sustained her stats throughout the day. When I went to visit her, her blood gases and saturations were good.

Also, they began feeding her the small amounts of my milk throughout the day and she tolerated it just fine. Keep in mind that since Ella has not had to digest any food up to this point, her intestines are at risk of not working. In other words, it is almost like they can atrophy because they are not being used. So the purpose of supplying the smallest amount of my milk was to entice the cells in her intestines that there will be real food coming at some point! In any case, it is a good sign that she tolerated it well.

Visiting her today and tonight was rough. We did have several concerns and the nursing staff was not effective in answering our questions. Unfortunately, that tends to make things worse and makes us wish that we had a direct line to Dr. Kays, so he could alleviate our concerns.

Even though Ella’s stats are good, her swelling has not reduced. So far, it doesn’t seem like the invasive SVC procedure has made much of a difference. This means that there is a good chance that the procedure will need to be repeated. In addition, her head swelling was much worse tonight versus 24 hours ago.

On top of all of that, Ella just seemed very out of it. We are not sure if it is because she was just real tired or if it was an indication of anything. On Monday morning before the procedure, you would talk to her and she would look around and respond to your voice. She hasn’t been doing that since the procedure yesterday.

When you see these types of side effects and the SVC procedure is not something that this hospital or staff has a lot of expereince treating, it starts to get the best of you!

Honestly, it is probably nothing. Our perception is that she has worsened, but I think we are just nervous about everything that she has been enduring.

If you would, please join us in praying for our little girl: that we will see fluid reduction from her chest tubes, her overall swelling would reduce significantly(especially her head), and her superior vena cava issue would resolve itself. Also, that tomorrow will be a better day for her parents!

As we prepare for a night’s sleep, we rest in His promise:

Isaiah 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thanks for all the support from everyone. Good night!