Well, we were hoping for a perfect streak, but Ella had a rough time last night. Dr. Kays and the team are being challenged to manage her fluids. They’re having to constantly calculate how much and decide what to put back into our baby girl’s body.

Due to the rate of her fluid loss, she risks being dehydrated, even with all the water retention! It’s her circulatory system that can lose too much fluid while her other tissues retain it. Her poor little head is really swollen too.

This type of swelling is to be expected, but it’s not a good thing. It is also building up in her chest cavity on the right side which is reducing her lung capacity. Dr. Kays is going to be placing a chest tube on her right side early this afternoon. We hope that this will give some relief.

Her cO2 gas wasn’t looking good last night either. It was pretty elevated (in the high 50’s, should be around 40). They were able to bring this back down this morning after a good suctioning though.

Her other stats look pretty good. Her O2 saturations are doing alright, and her acid levels are in check.

Ella is still very sick though and we need to pray for her to get over this fluid management hump.

Father God, we lift our baby girl up to you and know that you are in control. Please ease her fluid retention and let her stats improve. We also pray for no negative events around the other chest tube being inserted. She is weak but You are strong. Thank you for our baby girl, and the support and prayers of others. She is in your hands Jesus. Amen

SIDE NOTE: Tina’s mom made it last night, but her flight was delayed and it took awhile for her to get the rental car. She didn’t arrive here until 3:30am! It’s nice to have some family around and we look forward to our future visitors too.

(picture of Tina and nurse Angie watching over our baby girl)

Ella had another good night. Her blood gases have been stable and she’s still as cute as ever. At the moment, she has a good amount of fluid build up so she looks pretty swollen. We’re hoping the chest tube will give some relief in this area.

We had expected her surgery to be done this morning, but there’s been no sign of Dr. Kays. We really hope that he is still planning to work on her today. The sooner those cannulas come out, the sooner she can start being turned on her side and stomach.

UPDATE (1:30pm EST): About 10 minutes after the above post, Dr. Kays walked in a kicked us out of Ella’s area so he could do the surgery. We’re expecting him to finish up around 3:00pm EST.

UPDATE (3:30pm EST): Nurse Angie poked her head out about 45 mins ago and said that the surgery is progressing well. We’re expecting things to wrap up soon.

UPDATE (4:10pm EST): Dr. Kays just came out with his team. Ella’s surgery went fine. She did have a little blood loss so they’ll be monitoring that. They’re also in the process of replacing the arterial line in her belly button which they use to draw blood, give meds, and monitor her blood pressure. They’re are also going to take a chest x-ray to confirm the placement of the chest tube and arterial line.

Our baby girl sustained through the night. Her blood pressure continued to be low early this morning so they gave her more blood. The pressure has been fine ever since. Her c02 gases are back down to where they should be and her O2 is still solid.

Ella looks good this morning, a lot better then yesterday. She was awake when we arrived at her bedside. She been on a double dose of fentanyl since the surgery for any pain. Her incision looks a bit more red today, but that’s normal.

Dr. Kays indicated that a chest tube would be inserted on Wednesday to relive the fluid in her chest. This is typical with severe CDH cases. He’s also planning on removing her ECMO cannulas then as well. I can’t wait for her to get these out! These cannulas have minimized her ability to turn her head and restricted the way her body can be turned. Once these are removed, they’ll be able to let her rest on her side and belly. This should also help with her fluid build up.

Late yesterday afternoon, Dr. Kays shared with us the details of the surgery. He confirmed that as severe cases go, it was textbook: the surgery went very smooth and there were no complications. (Praise Jesus!)

He confirmed the severity of Ella’s CDH. Only about 5% of the left side of her diaphragm existed. He had to stitch in a pretty large GOR-TEX patch to fill the space.

He also had to use some of the patch when closing the incision, as to not put too much pressure on her organs. You can’t see this patch though because it’s below the skin, but stitched to her abdominal muscles.

We asked about how her body would respond over time to these patches. The hope is that the body will grow around them without issue. This isn’t always the case though.

At the moment, there are risks of a possible infection. As Ella gets older, she’s going to grow, but her patch is going to stay the same size. For this reason, there is a chance of a reoccurring diaphragmatic hernia which would require another surgery.

In the middle of my head spinning with all this information, Dr. Kays stopped and asked, “And what do we call surgery for a reoccurring diaphragmatic hernia?”. When I couldn’t remember the answer that he had previously shared with us during our initial visit in June, he replied with a smile, “We call that a privilege“.

To be blunt, it is called a privilege because you can’t perform this surgery on a baby who doesn’t survive.

Something we did learn is that not all of Ella’s organs were put back in the “right” place. For example, due to restrictions of her intestines developing in her chest, her colon and large intestine had to be routed a bit differently. Her appendix is actually on her left side! These are some of the reasons for future problems like reflux, but we pray that these would stay to a minimum.

We praise our Lord for the successful surgery yesterday and are so blessed to have Ella with us. It blows our minds to see how God is using this time to stretch us and touch so many other lives.

Please continue to join us in prayer for our baby girl.

We love you all.

BTW: In the middle of writing this post, Dr. Kays walked in and said that he is “pleased” with her progress and felt good about her current stability. Go Ella!

P.S. Tina and I had slept better last night then we had in awhile. We got a solid 10 hours. (yay)

Ella had another good night. Most of her episodes, where she gets upset and her stats drop, have been controlled without any paralytics or morphine. This is positive because you want to keep the use of those medications to a minimum. Her overall levels are maintaining nicely, considering all her organs are in her chest, and she really can’t get much cuter =).

Her big day is tomorrow so Tina and I will be here at 6:30am (EST) before she has surgery at 8am (EST). We’ll try to keep posting updates throughout the day.

Please pray for a successful surgery with no complications. This is Ella’s big day!

I put together a quick video with a soundtrack dedicated to Chris Vodnik. Not all the lyrics apply (we’re not leaving our girl tomorrow!) but easy like Sunday morning sums it up. Once again, you’ll need a high speed Internet connection to view the video. Enjoy =)

Not much change for Ella throughout today. Still a bit touchy, but overall remaining stable. We don’t anticipate much change in her care over the weekend. She needs to rest up for surgery that’s scheduled for 8am (EST) Monday morning.

Please continue to pray for her strength in preparation for surgery, for her fluids to decrease, and for her to remain calm. Also pray for wisdom and guidance for Dr. Kays and his staff.

Thank you for all the support.

Ella continues to do well, but it takes very little to upset her. When she starts to wake up, she fights the oscillating ventilator which causes her stats to drop. The staff is watching her closely and trying to minimize these swings, only using paralytics and morphine when necessary. For this reason, we don’t want to disturb her for now so our time with her tonight was mostly made up of watching her sleep and trying to be quiet.

She did decide to show us a little drama by fussing a bit which brought her stats down, but nurse Kate and the respiratory therapist were on top of it.

We wanted to leave by 10:30pm tonight, but we hoped to see her stats push up to 100 again. We waited….and Ella didn’t disappoint. By 10:25pm she was pegging her saturations again =).

Please pray for her to be calm and for a good nights rest.

Sleep well tonight my baby girl…sleep well.

Praise Jesus from whom all blessings flow!
 
Today was a big day and our last update was an indication of how touchy the situation has been. Ella had a lot done today so hang on…there’s a lot to share.
 
We started out with an ECMO flow reduction to 60. Dr. Kays called this morning and said that if they can get a PICC line in they would attempt to remove her from ECMO this afternoon. Inserting a PICC line is not a trivial task and doesn’t always work the first time. Angie (one of the NICU III rock stars) was able to get the PICC line guided in on the first try! THANK YOU FOR THE PRAYERS!!!!
 
After Ella settled down, they started to take her off ECMO. We could not be in the NICU during the procedure. We had to wait, and pray (I think God had us right where He wanted us). Once she was stable, we were able to go in and see her. She looked good, but her stats were a bit unsteady. Dr. Kays was hovering over her like a concerned parent.
 
The one stat you can watch fluctuate moment by moment is her oxygen saturation level. It was hovering around 95. Dr. Kays wants to see a solid 100. But he indicated a 95 or better is ok. Her chest x-ray looks pretty good. Her right lung is looking almost fully inflated and her left lung has inflated a bit. Her heart has also shifted more towards the center of her chest.
 
We talked to him about where things might go from here. He described a few possible scenarios:
 
He indicated that if she makes significant progress, and her stats keep going up and stabilize, he will put off surgery for awhile. It is better to give her lungs more time to grow and for her to get stronger than to push surgery right away. I would have thought that all her organs up in her chest cavity would cause other stresses to the organs, but he indicated that he didn’t think so. The other advantage of waiting on surgery is to allow more of the fluids to be removed from her body, and for her heart and liver to recover.
 
If her stats just maintain without any real progress, he may look to do surgery sooner, hoping to give her lungs even more room.
 
But..
 
If her stats go the wrong direction, he may have to put her back on ECMO. We really don’t want this happen.
 
One of the challenges to this surgery is getting all her guts back into her belly and having enough space to do so. While on ECMO her liver can swell and her heart can too. This poses a problem of too much stuff trying to fit into too small of a space. If they absolutely had to, they could do the surgery in phases, but this is not a desired track. Hopefully we won’t have to go down that path. This is another reason to wait more before doing the surgery so that the swelling that does exist can go down as much as possible.
 
After discussing these things, Dr. Kays went around and tweaked a couple things and stood over her for awhile. He then checked in on a couple other patients and said goodbye to us for the evening.
 
We were there with Angie (the rock star PICC line nurse) and had our eyes on our baby girl. The staff had taken another blood gas and her cO2 (carbon dioxide) gases were high (59). They wanted to see that level around 40. We were also watching her oxygen saturation specifically, desiring to see it go up to 100 as Dr. Kays had hoped. It hovered around 95 for awhile, 96..95..96…95. Up to 96, then back down to 95….then to…94. A bit later 93…94…93, 92…91, 92. Oh man we’re going the wrong way and I can see the concern on Tina’s face. Tina went to go pump and when she got back…
 
90…89…90….88
 
The nurses paged Dr. Kays.
 
Tina indicated that she wasn’t able to express any milk and that we needed to get something to eat. I didn’t really want us to go, and I don’t think she did either. But Tina is trying to juggle taking antibiotics 4 times a day (1 hour before you eat or 3 hours after) while pumping every 3 hours and trying to eat enough to keep her milk production up. We hadn’t had anything to eat since breakfast and it was 2pm…we had to get some food. So, we left our girl in the NICU’s hands and hesitantly went to eat.
 
We were bummed. You know, we wanted instant gratification, but seeing the O2 number drop and the cO2 number increase was just a bit disheartening.
 
We ate our food and after about 30 minutes or so headed back to the NICU. We asked to go back in to see her but we were told we would have to wait for a nurse to come out and get us. So we waited. I only think we waited about 10 minutes but it felt like an hour. Angie came out and told us that she was doing ok, but Dr. Kays wanted her O2 levels to stabilize around 95 before he wanted us coming back in.
 
Tina decided to try and pump again and I waited to hear any news. Within 10 minutes Angie poked her head out and said that her levels were at 95 so it was ok to come in. Tina was still pumping so I headed back without her.
 
Dr. Kays was there and let me know that he had to use a dose of some medication to temporarily paralyze her, forcing her to calm down. He doesn’t like to use this technique unless he has to and it only works well because of the type of oscillating ventilator she’s on.
 
I went over to look at my baby. She was pretty still. Her eyes were twitching a bit. I asked if this was normal and Angie said that the medication was starting to wear off so I might see some movement. I talked to her for a bit and tried to comfort her. She started moving a bit more as time went on but her O2 saturation continued to hover around 95. Thank God.
 
After about 15 more minutes Tina came in. I stepped out of the way to let her get close to Ella. I sat off to the side and talked to another nurse. Tina was trying to comfort Ella when she fussed by putting her hands on her head and feet. This gives babies the impression of a confined space and Ella does pretty well with it. Tina noticed that when Ella calmed down and fell asleep, her stats would go higher.
 
We sat with nurse Angie for a couple hours until the shift change at 7:00pm. Parents are not allowed in the NICU during shift change so Tina and I stepped out for a bit. Tina went to go pump again and I updated the blog. After the shift change I went back in to see my baby girl.
 
I looked up at the O2 saturation level…
 
100
 
I waited…100…I waited three minutes…100. Her oxygen saturation level was pegged at 100 for three minutes! I just stood there…Ella sleeping…Daddy praying and praising our Heavenly Father.
 
For the next 10 minutes, her O2 level never dropped below 97. I told Tina I would come out after 15 mins, so I asked God to give me 100 just for a bit more. Her O2 level went to 100 for another solid minute. Thank you Jesus.
 
I talked to the night shift nurse for a bit. They had just completed another blood gas test. It indicated that her O2 levels were doing well, and her carbon dioxide levels had totally come back to where they should be (39)! This was a great ending to a big day for our little girl.
 
We pray that Ella sleeps well tonight and continues her positive track.
 
Thank you for your continued prayer support. God bless all of you!

Ella’s stats maintained through the night even with the ECMO flow reduced. She did have a couple dips in her blood gases during the times she was being handled, but this is not out of the ordinary. Her bilirubin levels have dropped off as well, which was the hope after the ECMO circuit switch.

We’re anticipating a call from Dr. Kays this afternoon with an update.

We continue to pray that our baby girl grows stronger every moment, allowing her to come of ECMO in preparation for surgery.

Praise God for all He has done and continues to do.

Ella had a stable night. We’re waiting to hear from Dr. Kays about the timing of surgery. We expect to hear from him sometime today.

While Tina was in the ER yesterday I went up to see how our little girl was doing. She woke up for me again and grabbed my finger. Man she had a tight grip and was yanking my finger all around. With all that strength and new headband she reminded me a bit of this guy. =)

We continue to pray for an incredibly successful outcome and that the Lord would guide Dr. Kays hands during surgery. This little girl is so much a part of us and it is amazing to see how much she’s becoming a part of everyone else.

Thank you all for your continued thoughts and prayers.

God Bless

UPDATE: We talked to the nurse practitioner this morning. Dr. Kays will not be in until later this afternoon, but he did call in with instructions to switch out the ECMO machine. The switch of the ECMO machine will provide a new circuit with fresh blood and newly maintained equipment to minimize potential blood clots. There are some risks involved with this, so please pray that this transition will go smoothly. Ella will be off the circuit for about 30 seconds which is her lifeline at this time.

We might be able to conjecture that surgery will be tomorrow, but until we talk to Dr. Kays we won’t know for sure.

Please stay tuned…

Tina thought the beds at the hospital were so comfortable that she wanted to sleep there again. Not quite.

Tina’s been pumping milk for our baby every three hours since she was born. Yesterday afternoon, she wasn’t feeling too well. Last night at 11pm she still wasn’t feeling well and she was burning hot so we headed to the ER. Three hours in the waiting room and two hours waiting for a doctor…it looks like Tina may have a breast infection.

It’s 5am and we’re still waiting for the test results. We’ll keep you posted.