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.

Yes, it is very exciting to see Ella exploring more and testing her strength. When we’ve been holding her and playing, we’ve been trying to get her to stand up. Well, she started grasping the side of the Pack-N-Play and trying to pull herself up! As soon as that started to seem like a threat, we decided to graduate her and take away the elevated mattress area. So, now she is down low in the Pack-N-Play and has lots of room to explore, sit up, roll around and test her strength in a safer way!

Thankfully, the sniffles finally went away after about 12 days straight of misery for her. She is finally feeling more like herself. One nice treat: she has been babbling more on her own. Most of the time, she would be vocal for one moment in time and then it might be days before she said anything else. For the past week, every day she has started to babble at random times throughout the day. That is such a positive sign.

We’ve also played around with her feeding schedule, as mentioned previously. It does appear that smaller feeds of 225ccs, 6 times per day is much appreciated by her little body. She doesn’t say much during feeds, which is an indication that she is comfortable with the volume in her tummy. Plus, her stools have gotten back on track. No loose stools or blowouts! It’s been a bit tough for us to work in the feedings 6 times per day. Josh has been taking the latest feed, sometimes at 12:30am or later. This isn’t a long term solution, so we may try spacing her 6 feeds about 2.5 hours apart during the day and see if that works for her. One thing is for sure: even if she doesn’t tell us, her diapers do!

We went to have an echocardiogram this past Tuesday as well as touch base with her pulmonologist. If you remember, we were concerned because the collateral veins on her chest started to reappear. Sure enough, the echo shows narrowing in her SVC where the stints are located. Dr. Abman agreed that it is likely one of the reasons that she desaturates so quickly when she gets upset. He is going to check with her cardiologist, Dr. Fagan to see what the next steps might be. The pressure in the SVC went from a gradient 6 from the last echo to a 20. So, we might be making a trip to the heart cath lab sooner than we would have liked. We’ll just have to see. If we do end up having to go down that path, we are going to try and cluster care and see if we can get some other items checked off our list too: like having a dentist check the dark spots on her teeth and having an ABR hearing test conducted. If she is going to be sedated for the heart cath lab, it’s best to get more procedures completed at the same time.

One bummer that surfaced this past week is related to insurance. Josh’s former company used to provide a 3rd party company, Nationwide Better Health for case management. This was extremely instrumental in getting a lot of Ella’s care approved by insurance. Our case manager was an amazing resource for education on the processes involved and an advocate for helping to get services approved for Ella. Unfortunately, his prior company dropped that benefit, so all current employees as well as prior employees using COBRA are impacted. For most families, they probably never used Nationwide Better Health. But when you have high medical needs, you definitely get to know this company! So long story short: their contract ended on 8/31 and this past week, we have been fighting with the insurance company to continue to cover items that they have been willing to cover for the past several months.

Specifically, it appears that physical therapy and occupational therapy will likely not be covered. As a back up plan, we can use the state-funded early intervention program, but the most we can get is 1 visit per week for each service. This isn’t ideal simply because Ella can decide that she is not up for a therapy session with regularity. When the therapist only comes 1 time per week and Ella is fussy, you lose that whole week! The progress is slow enough, so frequent therapy visits tend to help Ella. But it doesn’t look like that will be a possibility moving forward. It’s frustrating because the health insurance policy has not changed, but the case management has changed and so therefore, services that may have been covered before are no longer covered. But Ella’s status and medical necessity for these services did not change from one week to the next! And we no longer have a 3rd party advocate to help us fight for services! Right now, Ella has not seen her therapists for 3 weeks (Copper vacation, then sick for a week, then a week of not knowing if services would be covered). We will start next week with the early intervention program, which we have used before and with the same therapists (that’s where we found them in the first place!). But it’s just a bummer for Ella.

Thanks for all your prayers related to the job search. Unfortunately after 3 rounds of interviews from one company, Josh was not offered the job. So we are still searching and listening for discernment on the next best steps. We appreciate your continued prayers in this respect.

Isaiah 26:4 (NLT)
Trust in the Lord always,
for the Lord God is the eternal Rock.