Our baby girl is doing well this morning. Overall she had a stable night and her fluid output continues to decrease. Her total for the 24hour period (9/1/07) was 390, down from 440 yesterday. Her blood gases taken at 8am were so good, they were surprising (cO2 = 33, pO2 = 118)!

Since Ella has had a rough couple of days, it is good to see these numbers; they are a definite improvement over her previous levels. However while these numbers are good, her FiO2 (Fraction of Inspired Oxygen) is at 75. This is the amount of oxygen she receives via the ventilator. This amount was increased from 60 after her rough evening and morning early yesterday. Now that she’s doing better, I would expect Dr. Kays to ween this number down again (she was as low as 46 in the previous days). Being able to reduce this number will help her come off the ventilator, but she needs to maintain her stats to do so.

Ella still has a ways to go in reducing her fluids, but we’re thankful that she’s going in the right direction. While her main fluids are dropping (chylothorax condition improving), her head is still very swollen. This is more related to her superior vena cava condition. If her head does not reduce in size, they may consider performing another SVC procedure. Due to the risks of damaging her vein with the “balloon”, we hope that she does not need to have this done.

Please continue to pray for Ella’s overall fluid reduction (390 is still too high), reduction in her head swelling, and for her stats to remain stable enough so they can ween her off the ventilator.

Praise the Lord that we’re this far along in our journey, and Glory to God for the victories along the way! Thank you Jesus for our baby girl.

Oh sweet Ella. Our baby girl is still very puffy. We’re really hoping and praying for a big change over the weekend, but for now we need to be patient. We are trusting that God’s timing is perfect.

Other then her fluid retention, Ella continues to remain stable. She was very awake this morning for nurse Andrea, and her stats have been in a range where Dr. Kays is comfortable. No other major changes at this time.

The only change they’ve made is removing the heparin drip (anticoagulant), and instead are giving her subcutaneous shots of another blood thinning medication called Lovenox. Dad has to look away while the baby girl gets these because they need to poke her in a fleshy part of the body to give them (picture dad shuddering now).

Oh, and they are checking her blood sugar levels too because of the octreotide. Not as bad as a shot, but they do prick her heal to get a drop of blood (and dad shudders again). Come to think if it, I’m not sure why they do this considering they draw blood from her every few hours from an arterial line, but I’m sure there’s a good reason. I’ll be asking that question today though just to be sure.

Tina’s feeling better these days. Hopefully this run on antibiotics will kill the infection for good.

Dad is doing ok as well, except for the moments he selfishly wants to just rescue his baby girl and take her away from all this. I say selfishly because I know with everything in me that God is sovereign and His timing is perfect, but I still want her to just be better now!

This baby girl has been such a blessing to us and to so many others. God knows exactly what needs to be done, what needs to be said, and what seeds will be planted before we can take the next steps.

Lord, continue to confirm your truths in our hearts, and know that our desire is to completely surrender to you. We praise you Lord, for every day we get to spend with our baby girl, and for all the others who are touched by her testimony. Thank you Jesus. Amen.

Once again, I’m feeling better about Ella’s condition now that I’ve talked to Dr. Kays.

The good news: Ella did not have any trouble digesting the small amount of Tina’s milk, however it did increase her fluid output (the opposite effect of what we want). So for now, the feedings have been eliminated.

Also, he is not overly concerned with the swelling in her head. He feels it does not pose any risk of brain damage or other major issues in the short term, but it does need to be treated.

The bummer news is that it does look like her superior vena cava has collapsed again (SVC syndrome). We had anticipated that this might occur; this means that we might need the procedure done again.

At this time though, Dr. Kays wants to hold off on another invasive procedure, and instead will try using a drug regiment made up of octreotide. This will focus on the overall fluid retention in her body (the medical term for this condition is called chylothorax). Studies indicate that this drug works 50% of the time, and usually starts having an effect after 3 days of use.

Please pray that this drug will work for Ella. There may be other treatments, but this one has very few side affects and is the least invasive.

Other than the SVC syndrome and chylothorax, Ella is doing well considering the severity of her sickness. Dr. Kays is positive about how her lungs are progressing, despite the large amount of fluid in her chest.

Praise God that her lungs are working as they should, and are getting a little better every day.

Thank you all for the continued thoughts and prayers. This burden is lighter when it is carried by so many.

Other than the swelling in her head, Ella had a pretty good night. Her O2 saturations have been looking good, usually pegging the 100% mark, and her pO2 numbers have been in the 90’s and 100’s, good for where she is right now (pO2 = total amount of O2 in her blood stream). Her cO2 has been elevated though, probably due to the secretions in her lungs, so they’re tweaking the ventilator to get that to come down.

Tina and I are feeling better this morning, once we heard that nurse Angie is taking care of our baby girl today. Angie said she would try and extend her hours a little more today if she could get her sister to watch her kids. Heck, I’d watch her kids every day if she would watch our baby girl! Angie confirmed that I didn’t know what I’d be getting into, but I just figured I be so worn out after taking care of 2 boys and a girl, that I’d just sleep better at night. =)

Angie confirmed that Ella has been more engaging this morning compared to what we saw last night. She’s watching Angie as she works, and Ramona the monkey hanging from her “vine” has caught her attention too.

We’re also waiting to talk to Dr. Kays about his thoughts on Ella’s swelling. Her head is just so much bigger then before. I just hope that it’s only getting a little worse before it gets a lot better.

I woke up at 5:15am, thinking of my baby girl. I was feeling anxious about the swelling in her head, and couldn’t go back to sleep, so I spent some time praying and reading the Word. I flipped open my Bible right to Psalm 3, and verse 5 spoke to me in that moment: “I lay down and slept, yet I woke up in safety, for the LORD was watching over me.” The life application notes expanded on this:

Sleep does not come easily during a crisis. … David cried out to the Lord, and the Lord heard him. The assurance of answered prayer brings peace. It is easier to sleep well when we have full assurance that God is in control of circumstances. If you are lying awake at night worrying about what you can’t change, pour out your heart to God, and thank him that he is in control. Then sleep will come.

Wow…how much does God rock! I then came across Psalm 5:1-3 (NLT):

1 O Lord, hear me as I pray;
pay attention to my groaning.
2 Listen to my cry for help, my King and my God,
for I pray to no one but you.
3 Listen to my voice in the morning, Lord.
Each morning I bring my requests to you and wait expectantly.

This is the reason why it’s called the “Living” Word of God. It amazes me how God speaks to us so clearly though His Word. I found myself reading a few more passages and then proceeded to fall back asleep. =)

Psalm 13 is my prayer for today:

1 O Lord, how long will you forget me? Forever?
How long will you look the other way?
2 How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?
3 Turn and answer me, O Lord my God!
Restore the sparkle to my eyes, or I will die.
4 Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.

5 But I trust in your unfailing love.
I will rejoice because you have rescued me.
6 I will sing to the Lord
because he is good to me.

Praise you Lord! Amen.

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.

(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.

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.

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.

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.

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. =)