Yep, even though it is not an enjoyable activity, we still try foods here and there. The OT asked us to stick with whipped cream for now. The faces that Ella makes are unbelievable! You would think it tasted really bad…this just shows you how an oral aversion really can taint your experience with food. We’ll keep trying!

Ella received her H1N1 booster shot last Friday. So glad that we were able to get her vaccinated. Also, she visited the ENT for a follow-up appointment. The ENT prescribed Prevacid twice per day. Dr. Kelley noted that since Ella got a cough with the daily Nasonex treatment, it is likely that stomach acids might have played a role. While Ella is laying flat sleeping, the Nasonex was greatly helping to drain her sinuses. However sometimes the stomach acids can also travel up and irritate the esophagus and larynx, even though she has a nissen (the nissen is there to prevent food from refluxing and to make sure Ella gets nourishment. However, the nissen doesn’t tie off the esophagus and stomach opening 100%, otherwise she would not even be able to swallow her secretions). Since Ella had this reaction to the Nasonex, this is the most likely cause.

The ENT asked us to give Nasonex every other day for 1 week, then switch to administering Nasonex every day too. We started last Friday and we’re just about ready to give Nasonex each day starting this Friday. We’re hoping that makes the difference because so far, things have not improved for Ella. She still struggles each day, especially in the morning hours, with secretions and mucoids so thick that they occlude her airway. We have another follow-up appointment in January to see if this has worked or if we need to try something else.

The other day, we just captured a family moment. Ella wanted to play with her computer and Lola wanted to be close and watch.

I had a great birthday yesterday, hanging out with Josh and Ella. Below you can see the snuggles I rec’d from my girl.

Enjoying the holiday season and looking forward to celebrating Christmas in 9 days!

Well, we are still full from Thanksgiving. The leftovers are tapering off and we’re still trying to work through all the pies I baked.

And now, Josh has been fighting a cold over the past few days. Ella’s cough did go away over the course of 5 days, once we discontinued using the Nasonex. Without it, I think she has slept better at night too. Although now, we are back to baseline which is very thick secretions and mucoids thorughout the day. In other words, her sinuses don’t drain and drip as they should and the secretions are extra thick causing an occluded airway at times. So, I called the ENT back today for some direction. We are going to try giving the Nasonex every other day until we have a follow-up appointment on Dec 11th. Hopefully, that will be just the right amount and/or the ENT might have another medicine that we can try. That day should be fun because we also have to go to the pediatrician to get the 2nd booster shot of H1N1 for Ella. We’re thankful that she is able to be vaccinated. She definitely would not do well with the flu (she can’t even vomit, so would that just present as constant retching with a fever?)! We’re hoping that we do not have to find out. So far, so good.

Ella was in a great mood this morning and did amazing during her OT session. I’ve been working on getting her to sit in her high chair more often. Then, I pulled out the beads and tried to get her interested. It has taken a long time, but she decided that she was ready to touch them and play with them. So, below are some pictures from the last couple of weeks in the chair. Besides beads, Ella also likes to catch up on her fashion and beauty tips in magazines.

The OT session this morning started with beads, then we added soap suds. She still touched the beads and played with them which is huge. After that, we placed the beads in a bowl of water. After some coaxing, she started to touch the water and then try to get the beads with her hands. We were having such good luck, we kept pushing the boundary. So, we went and put whipped cream on the tray and let her test that out too. It was great because we simply followed her lead and tried it out. She was still calling the shots, but for whatever reason, she was in a great mood and seemed more tolerant. Along with letting us put things on the tray, she was exploring with her hands more. When she was touching the water and then the whipped cream, she even put her hands in her mouth a few times. You can see in the photos that she was not expecting a taste. Her expressions were classic!

And yes, Lola has decided that she is part of this family and quite comfortable in her role as canine in the West Family. It’s been challenging at times with a puppy, but it’s also been fun too!

It was a great Thanksgiving. I went a bit crazy with pies – I actually made apple, chocolate pecan and 4 pumpkin pies with 2 different recipes (each yielded 2 pies). We had turkey, stuffing, mashed potatoes, yam casserole with pecans and marshmallows on top, and a special lime jello mold that is a family tradition.

The house was a bit crazy since Grandpa brought his 2 dachshunds. So we had 3 dogs running around the house and a cat trying to be on the DL, so she wouldn’t be bothered. Finally, the dogs settled in on the couch with Grandpa, so we asked him to stay put and let us stay in the kitchen.

Ella had reached 2 weeks of using her new medicine, Nasonex, prescribed by her ENT. Unfortunately, it caused a really bad cough that was continuing into the night time too. If you didn’t know better, she sounded real sick. So I called the doc and she told me to discontinue the Nasonex and see if the cough worsened. Time will tell.

I went ahead and decorated the Christmas tree since the holiday season seems so short this year. I want to enjoy it as much as possible. Lola posed for me in front of the tree…so nice of her.


It’s hard to think just 2 years ago on Thanksgiving, we were in the NICU and Ella had just come out of another surgery. She was intubated from surgery but was also still on CPAP. We had already been in the NICU for 4 months, but did not have any end in sight to her hospital stay. Sometimes it feels like another lifetime and most of the time, it seems like it was just yesterday.


Ella last year at Thanksgiving

Ella this year at Thanksgiving

We’re so thankful for all He has provided and how He has sustained us on this journey.

Ella playing with George, the giraffe.

Josh taking more naps with Lola.

Lola LOVES the space heater. Can you tell?







Bun trying a new look, kind of spa-like.



What’s going on?

Wow, I know it has felt like forever since I have posted. I’ve been meaning to, but then things have surfaced and made life crazy.

Since our last post, Ella has continued to do well. She is continuing to get stronger and trying to stand up in her Pack-n-Play. I have left the room and come back, only to discover Ella standing…and I did not place her in that position. Since our last post, it has only happened 4 times total, although she tries and tries every day. But this is a good sign: it means that she is getting stronger and will reach this milestone in due time.

Last week, Josh went out of town for an entire week. In anticipation of being home alone with Ella, I invited my Mom to come and visit during the same time frame. So, Grandma Eusey had a chance to see Ella. Although just as expected, Ella did not let Grandma Eusey get too close. She still has high stranger anxiety and only seems to do well with her parents.

Every so often, Ella is waking up at night. It only seems to take about 5-10 minutes of consoling and she will go back to sleep. We’re not sure what it might be, but don’t think it is anything too major since she is easily consolable.

We did not do anything major for Halloween. Yes, Ella did have a princess outfit that she wore…and can you believe it…I did not get a single picture. Grandma Eusey had to be taken to the airport and Josh had to be picked up from the airport, both on Halloween, so it was a bit hectic. I look forward to the day that Ella gets excited to dress up and trick-or-treat for candy. Right now, she is oblivious to Halloween – the outfit, candy, festivities. But I know that it won’t always be that way…someday we will have a chance to celebrate in true Halloween form.

Ella had another echo performed on Tues, Nov 2nd. Thankfully, everything checked out well. The flow in the SVC is great; the same flow as when the procedure was completed 6 weeks ago.

Besides the SVC, she has required more oxygen from 1 – 1.25 liters to remain stable. A hand full of months ago, she was 750ml during the day and 500ccs at night. In talking with the cardiologist, there is no physiological reason for the increased requirement to be related to the SVC. So, we’re not sure for the higher amount. Maybe it is just that she is getting bigger? In other words, she needs more oxygen for her growing body and her lungs have not kept up with the rate of growth that her body needs? It is just one theory. I just weighed her the other day and she is 29.3 pounds. The scale confirmed that it is not my imagination that she is getting bigger and heavier. And since she can’t walk, I have to hold her and carry her everywhere. She is getting very heavy for me!

We also went to have her ears checked today by an ENT (Ear, Nose, Throat Specialist). The great news: the tympanogram was normal. This means that she does not have fluid in her ears. However, the ENT also checked Ella’s nose and that is where the concern lies. Without getting too detailed, her nose is very dry and crusty way up there. The medicine that she started after the most recent SVC procedure, Plavix, has likely taken the dryness to a new level. The ENT thinks that her nose is partly occluded which could explain the increased need for oxygen. The doctor also described how this condition plus her being on oxygen therapy might explain the congestion she experiences every morning and the very thick secretions coming from her sinuses. It can’t drain via her nose in a normal way because it is too occluded, so it all goes down her throat. This might be why she has such a hard time with her secretions every morning. Also, Dr. Kelley stated that when you are heavily congested in the sinus area, it can impact the level of hearing. She prescribed some topical ointment for the nostril area as well as a nasal steroid mist. She wants us to try it for a handful of weeks. If this clears up the issue and we notice less oxygen requirements and better hearing responsiveness, then great. If not, she wants us to return for a follow-up visit in 5 weeks. It was great to get a clear answer as to why Ella might be experiencing these issues related to her hearing. Moreover, we’re thankful that we did not have to make an appointment right now for another procedure.

Finally, we decided to add a new member to our family. I have really missed having dogs (my Dad adopted ours before we left for Ella’s birth in Gainesville about 2.5 years ago). I miss having the companionship, especially when I am in the house all the time. At first, Josh was not elated about the idea of acquiring a dog right now since life seems unsettled and stressed. But after researching breeds and visiting a few, he softened and let me know that he would be content with getting a dog.

We adopted her from a breeder in Wyoming. She is a 17 week old, silver Weimaraner. Once Josh met her, the name just came to him. He asked, “What do you think about Lola?” So, that is her name! She is extremely docile and wants to be close all the time, following us all over the house. Her temperament and personality is a perfect fit for us. The breeder had already introduced crate and potty training, so a lot of the heavy lifting has already been done. Now, it will just be some basic obedience training, leash training, etc. Ella doesn’t seem too phased by the dog – she’ll just look at her every so often. Our cat is not too happy about the new family member and is still trying to adjust. Lola wants to sniff her and isn’t aggressive at all, but Macy is not having any of it! Now when Lola inadvertently gets nearby the cat, she runs! Macy has made it clear who is the alpha personality in this house! We’re hoping time and slow introductions will be the key.

Needless to say, we are happy about our new addition. As a matter of fact, I left with Ella to do an errand the other day. Josh was in his office working away. Lola likes to lay at your feet, so she was under the desk at his feet. When I came back, the house seemed strangely quiet. I went over to the office and found the two companions taking a snooze on the floor. This was especially funny since Josh was not sure that he wanted a dog. I think she has already figured out how to wrap him around her little paw.

Ella has been doing well since our last update.

We’ve been able to increase the density of her food to 30 k/cal. We tried 28 k/cal for 6 days without issue, so we increased to 30 k/cal. We’ve been on this new diet for about 6 days now too and so far, so good. It’s nice for me because it means that I feed Ella only 5 times per day versus 6 times per day, as of recent. It also helps because her food volume has been decreased to 1170ccs. Less fluid is never a bad deal for this girl.

Also, this past weekend we hit another huge milestone. I noted that Ella was laying down in her Pack-n-Play watching a video. I walked into the kitchen, but when I came back out, Ella was sitting up!!! I did a double-take: wait, I didn’t put her in that position! Even over the last few days, it has been happening more and more.

Just this past week, her interest in becoming mobile has heightened significantly. I will try and take her out of the Pack-n-Play to give her exercise and play on the carpet. But more times than not, she doesn’t seem as interested. The Pack-n-Play is such a safety zone for her. So, she has started to roll over onto, sit up on her own, lean forward to get on her hands and knees. All of this without my prompting, which is the best. She gets herself into all kinds of positions in the Pack-n-Play, exercising a lot each day. She’s coming over to the edge. She used to sit there, make some noise to get my attention and hold her hands out, so I can help her stand up and hold the side of the Pack-n-Play. The past few days: she’s already over to the edge on her knees, holding the top of the Pack-n-Play with her hands. Then, she gets my attention because she still doesn’t know how to stand on her own. The PT advised to grab her by the ribcage and tilt her one direction. Sure enough, the instinct is for her to place one foot flat and then I help lift her. All I can say is that all of this is very good and a huge milestone for Ella. She has turned a huge corner and is continuing to build strength each day.

We ran out of Flovent about five days ago. This is an inhaled steroid that Ella has used for about a year now. The pulmonologist prescribed it to her when she had a chronic cough. We later learned that the chronic cough was a side effect of Captopril. At recent check-ups, the pulmonologist has stated that it is not a bad thing for her to take, but was not convinced that she needed this medicine. I guess we just wonder how much it is doing for her. We’ve run into trouble with this before, like when we thought that Reglan might not be doing much. But here we are again, wondering if Flovent is really having an impact. So, we are going to try some time without to see if there are any adverse side effects. She is still on so many medications every day that we always want to try and eliminate, if at all possible.

With the latest SVC procedure behind us, Ella is also more tolerant of her therapies. Below are some pictures of a recent OT session.

And on an ending note, some more cute photos of the Bun playing on the floor with her computer!

One thing I forgot to mention on yesterday’s post was that we were not able to arrange for her teeth to be examined, but they were able to conduct an ABR hearing test while Ella was sedated. They didn’t get much new information, however they did test the auditory nerve that connects to the brain. It tested normal which is good. Ella was starting to come out of sedation so all they had time for was a tympanogram. It tested flat again. This means that she has mid-to high pitch hearing and cannot hear the mid-to-low end pitch sounds. Also, her eardrum was not moving and the eardrum appeared a bit red. All of this indicates what we have been told over and over: she likely has fluid in her ears.

This time, I expressed concern with waiting around for another test to have a different result and asked for a recommendation of an Ear, Nose, Throat Specialist through the Children’s Hospital that can definitively look at her ears for fluid and any other medical issues. Thankfully, she has never shown signs of an ear infection but it doesn’t mean that her ears do not have fluid. More and more, this seems to be the likely culprit. The audiologist explained that this might be why she seems to have “selective hearing”; at any given time she may have more or less fluid in her ears which can impact her hearing. So if nothing else, this test simply confirmed that we need to pursue Ella’s ear health from a medical perspective. This would also mean just making sure that there is nothing medically impeding her hearing and putting the audiology hearing tests on the back burner until we know she is at a point where she will tolerate the sound booth tests.

Last night was a bit tough for Ella. The antibiotics did a number on her tummy and gave her loose stools. The only thing that helped this time: we were prepared. This happened last time she had her cath procedure so we knew to expect it, plus we brought Maalox from home so we could avoid any arguments with the nursing staff. We did tell them that we brought the Maalox and recorded when we administered it. Fortunately, they were satisfied with that protocol. We only used it twice, once after each dose of antibiotic. It was amazing how it coated her tummy.

We had a tough time getting all of Ella’s medications sorted out. We thought everything was fine by 8pm or so last night and then realized that we were still missing meds. I even discovered that her diuretic dose was way lower than what it should have been. So, I gave her the 0.8ml they provided, but she was supposed to receive 8ml. At first, I just thought that maybe the concentration of the medicine was different. But we discovered that it wasn’t concentrated different, so that is a big difference.

Therefore, her numbers started to not look as good as the night continued. We increased her oxygen to 1 liter and hoped that we could resolve all of it in the morning. It wasn’t coming easy, so we became insistent as soon as shift change came at 7am. We were in the hospital for one reason. By not giving her diuretic for her fluid issues, we could bring on another issue. It is so strange because we have never had this much challenge getting Ella correct medicines at the Children’s Hospital. But even today as we left, they still never provided 2 of her medicines. I wasn’t that concerned because I knew we were headed home and they are meds that are only taken 1 time per day, but still. It is easy to see how mistakes and carelessness leads to bad medical mistakes. It can happen to us and yet, we are really involved with Ella. It was not professional and we were surprised to see it happening when they’ve been so good about this in the past.

Once we had an echocardiogram and chest xray in the morning, Dr. Fagan came to check on Ella. We expressed our concerns on the diuretic but also let him know that she seemed to be doing really well. Next thing we knew, the nurse came back to our room with discharge orders. It was about 2pm by the time we left the hospital.

With more diuretic on board and better blood flow in her SVC and to her brain and all of her extremities, her color is so much better. Her eyes are less puffy and her color is amazing. I remember this happening last time – – she just looks better. Especially today, there was such a drastic difference. Even though she is still catching up on sleep, she is happy and feeling better which is a huge relief.

Thanks again for all the support and prayers. It’s nice to be home so we can escape hospital food. Also, we’re looking forward to catching some much needed zzzzs tonight in our own beds.

I wanted to start out by showing some pictures from a few days ago. Although she needs assistance to sit or stand up, she has started to hang on to the side of her pack-n-play, balancing herself. Such a big girl! These were taken just last week, after her Auntie Shannon came to stay with us overnight for a visit.

Thank goodness that Josh just happened to roll over and check on the time this morning. It was 5am and we were supposed to leave at 5:15am. Although the alarm was set for 4:30am, the volume was all the way turned down. We were pretty much packed from the night before, so all went pretty smoothly and we left the house at 5:30am. We took the toll road so we would arrive on time. Ella was tired and not crying much. I think she was too tired to process what was happening. Plus, she was in the car. She still loves to ride in the car.

After check-in at the front desk, we were escorted to the heart cath lab pre-op area. There we met our nurse who has been fabulous all morning. We’ve met a lot of nurses during Ella’s short life and this nurse has amazing bedside manner. That has helped because although we have been through this before, the truth remains: this process does not get any easier. Moreover, we’re really tired.

I was amazed that Ella has gained weight over the past 7 weeks. She feels heavy to me, but then again, she always does these days. And since we’ve held off on weighing her regularly with our home scale, I wasn’t sure. She went from 25.5 pounds to 28 pounds this morning. We have not increased her food intake or calories, so I’m not sure. It is a bit concerning and I’m wondering if any of it is fluid-related. During her 2 year check-up at the end of July, her pediatrician told me that he wants her to be 29 or 30 pounds by next summer when she turns 3 years old. Hmmm…We’ll see if any of it is fluid-related over the next few days. If not, I think weight gain is good, but we also don’t want her to gain more than she should either.

We gave Ella some versed to sedate her and make her sleepy while we were consenting to the procedure and talking with the cardiologist, anesthesiologist, and nurses. That helped, but when I walked her into the heart cath lab around 7:45am, she knew enough to know that she did not want to be here. It took a few minutes of the mask with the inhaled anesthesia to make her go out enough. In the meantime, the nurses were surprised that she was screaming and fighting as best as she could, even with the sedation. It didn’t surprise me – I just confirmed that she is a little fighter and that fiesty spirit is probably one of the reasons that she is still here.

Dr. Fagan talked about going in and checking pressures. They may use a cutting balloon to get rid of some of the scar tissue build-up. Once they see the whole picture, they may also decide to re-stent. Ella currently has mesh stents, but he stated that they might use a covered stent. This may help the SVC to remain open and prevent some of the scar tissue build-up going forward. There are cons with covered stents: if they collapse, it can be more abrupt. He did not do this last February when initially placing the stents because we wanted to see how Ella’s body would respond.

We came down to the cafeteria to have some coffee and breakfast. We’re both so tired – there has been little sleep the past couple of days. Please pray for the Bun and that the procedure will occur with no incident.

UPDATE, 8:53am (Tina): Ella is doing well. They have access in her vein and artery in her right groin area. We also requested that they place the IV in her foot. The foot is not the normal place for an IV during this procedure since they have to gain access via her thigh on one side which might cause issues. But they told me that they were able to get the IV on her right foot. We’re happy about that part. They have not done any diagnostic tests yet, but wanted us to know that Ella is hanging in and they do have access. Just like last time, it took about an hour to gain access so they can really start the procedure. Keep praying!

UPDATE, 9:55am (Tina): The cath lab nurse just called again to let us know that Ella is doing fine with the procedure. They have access into the SVC right now and confirmed that it is definitely narrow. They have one balloon in there now and may decide to use an even larger balloon to reopen the SVC. Also, they spoke with audiology and the plan is to complete her hearing test once she is in the recovery area. Although the audiology test may not happen since they are not close to being done in the cath lab. We’ll just have to see!

UPDATE, 10:41am (Tina): The cath lab called again. They were able to balloon the vein and just placed another non-covered stent in between the other two stents. So, now she has 3 stents! They are currently going back in with another, larger balloon to see if they can open it up a little bit more. Ella is doing fine with the procedure. They are hoping to be done soon. Thanks for all the thoughts and prayers.

UPDATE, 3:50pm (Tina): Sorry for the delay in updating. Ella is doing amazing. It is such a relief. Dr. Fagan came out from the procedure and said that Ella did great. He decided to place another mesh stent – the placement is inside an existing stent to reinforce and try and prevent the tissue from growing through again. It was a consideration to use a covered stent, however there are downsides to using them. Once in place, they are tough to balloon and expand. We know that this process of ballooning and expanding the stents is expected as she grows bigger; covered stents make this tougher to accomplish.

Dr. Fagan is keeping Ella on an aspirin regiment for many months and years to come. Now he has added a new medicine called Plavix, which along with aspirin, is used for the prevention of thrombosis after placement of intracoronary stent. He’s hoping this will help prevent the tissue from growing into the stents too.

We’ve checked into the ninth floor facing south while the rain continues to drizzle outside. The nurse on this floor has been great too. Although we had to track down and advocate for food and medicine since 12:30pm. Somehow the orders were not placed correctly downstairs in the heart cath lab, so there was a huge delay once we arrived upstairs.

The plan is to stay overnight for monitoring. They plan to give her antibiotics via IV from the procedure. We will dose her with Tylenol as needed. So far, she has been saturating great and does not seem to have any discomfort from the anesthesia. We’ve just given her the first round of food and expect that it may upset her tummy, as it did last time. All in all, she is doing amazing compared to last time. Also, we think it is because the stent was already in place, procedure was shorter and overall easier on her system.

Dr. Fagan did state that her irritability over the past several weeks is pretty common given the narrowing of the SVC. With Ella, the carotid artery on her right side is tied off (from ECMO), so she only has one viable artery to her brain. When the SVC narrows and pressure increases, it can lead to headaches and overall irritability.

They are planning to take an xray and echocardiogram in the morning. If things look good, we should be able to go home tomorrow. That is our hope.

UPDATE, 6:50pm (Tina): So far, there are no adverse reactions to the 4pm feed. I just fed her again, so we will see if it starts to catch up to her. Otherwise, she is doing pretty well. She just fell asleep for a little nap (her first one of the day). Her numbers don’t look that great while she’s sleeping which is a bit concerning. Her heart rate is 155 and saturating 90-91. Her respiratory rate is between 45-50 breaths per minute. We may have to increase her O2 for a bit to help her along.

I’m curious to see how she does a bit later with the dose of antibiotics. Those have been difficult for her to tolerate in the past. Then again, she did not have any adverse side effects from the earlier dose given in the cath lab. Also, the nurse in the cath lab flushed her IV at 12 noon with a hep-lock, to try and keep the IV viable. Unfortunately by 4pm, the IV had already gone bad! Very typical for Ella. So now, they decided to change the medicine and give her antibiotics via her g-tube tonight. Since it is a different antibiotic, we’ll have to see how she reacts. I’m hoping that it doesn’t make her feel sick. Although sleep will not be the best tonight (it never is in the hospital with all the interruptions), it will be better for everyone if Ella sleeps solid and the nurse can be stealth. Shift change is happening as I type this update, so I’m curious to see who we have overnight. We’ve had 2 great nurses today, but overnight is so key when everyone is trying to sleep. Please Lord, give us a good nurse.

I’m here with Ella tonight solo for a few hours. Yesterday was Josh’s birthday. We did not really have a chance to celebrate. He was busy completing some contract work and we knew we’d be here all day today. So, I found some great tickets to the Colorado Avalanche vs. LA Kings game tonight at the Pepsi Center, center ice. Daddy has escaped with a friend to enjoy his birthday and not think about hospitals. He emailed me this picture a few minutes ago from his phone commenting about the great seats. Good break for Daddy!

Thanks for all the support and prayers. Ella did great today with the procedure and is recovering quite nicely. We can already tell that this has made a difference for her. And every time we visit the hospital, we meet more people and get to share Ella’s journey. You know when you just met a nurse that gets teary-eyed just by listening to a brief summary of her story, that the Lord has special plans for this little one. Some days it is so hard to hold onto the truth and keep it forefront in your mind. I’m just thankful He sends these ordained moments for us. It’s nice to get those blatant reminders that He is still here and in control every step of the way.

Psalm 9:9-10 (NLT)
The Lord is a shelter for the oppressed,
a refuge in times of trouble.
Those who know your name trust in you,
for you, O Lord, do not abandon those who search for you.

It has been 2 weeks since Ella’s echo that showed her stints have narrowed causing pressure in her superior vena cava. It explains why the collateral veins have re-appeared all over her chest. Actually, the veins have become even more prominent which tells us that it is getting worse, not better. Moreover, she has been extra fussy. Typically this type of behavior appears when she is not feeling great. It isn’t that she is fussy all the time, but it is a lot of the time. Plus, when she is not doing what she wants, she has no tolerance. So holding her breath and having spells has become a frequent occurrence. Her baseline oxygen requirement has gone back up to 1 liter. Even then, her color doesn’t look as good and her eyelids get a purple color. Thankfully, we have not had pass out spells, but she desaturates very fast.

I had not heard back from the hospital to schedule her procedure. I was getting concerned and decided to rattle some cages this morning. Good or bad, we have an appointment next Wednesday at 6am. Check-in time is 6am and the procedure is scheduled for 7:30am. Yikes, none of us are morning people, but it is the soonest time so I didn’t want to negotiate on the time slot.

I’m bummed that Ella has to have this procedure. I wish it had been at least a year before having to go back to do maintenance on the stints. I’m scared that this might mean 2x/year visits to the heart cath lab. That is not a fun thought since it requires anesthesia and putting her out; there is always risk with this type of procedure.

We wanted to cluster care to see if we could get teeth or ears checked out while she was sedated. Based on the appointment being the first procedure of the day, we have a good chance of things timing out the way we need. The audiology ABR test scheduled for 10am. As long as Ella is done with the heart cath procedure, it will time out beautifully. However, the test takes 60-90 minutes. So if she is not ready at 10am, the audiology test will need to be rescheduled for another time (that is the only time slot they have available). We’re still working to see if someone from the dental clinic can come look at her teeth while she is in the cath lab. Hopefully, that will work out too.

Once all her tests are complete, I’m sure we will spend the night at the hospital. This will be the 3rd hospital stay this year and hopefully just an overnight visit. Last time, the anesthesia gave her diarrhea and a bad tummy ache. We had to fight with the nursing staff for 2 hours for a dose of Maalox to calm her. I think I’m just going to have it handy in my bag this time, so we don’t have to have unnecessary battles. The anesthesia also makes her itchy, so we’ll need to watch for that symptom too. All in all, she looked worse after the procedure. It wasn’t until about 24 hours later that she started to do well, but that is fairly quick. I’m hopeful that it will be the same thing this time.

It is a blessing that Josh does not have a job right now, so that we can all endure this time as a family. On a positive note, the Lord has provided some small contract jobs. This is not even close to meeting our needs, but every little bit helps and we are thankful.

Please pray for Ella. We really want her to feel better and pray for an uneventful procedure and quick recovery. In the meantime, for Ella to hang tight and deal with this icky feeling and lack of oxygenation. And please pray for me and Josh. Every time we return to the familiar setting of the hospital and our baby girl has a procedure, all the emotions of our journey surface. It is hard not to let it weigh heavy on your heart.

We’re not sure what His divine plan means, but trust that there is a greater purpose in all of it.

1 John 4:16 (NIV)
And so we know and rely on the love God has for us.
God is love. Whoever lives in love lives in God, and God in him.