Her PT session this morning went well. Since tummy time was successful yesterday, we started in that position again.

Ella tolerated the therapist stretching her and rolling her to each side. Then throughout the day, we had tummy time on the Boppy. Once again, she decided that it was pretty comfy.

We tried to switch durable medical equipment companies today, and they showed up, but they did not have 90% of what we needed for Ella. It was a little frustrating since I spent time on the phone with the branch manager reviewing our needs in detail. I took the time to do this in advance because I have noticed how there is little support for infants and pediatric patients, in general, versus adult patients. Here is an example: a standard oxygen compressor has a regulator on it that delivers oxygen in increments of .5, 1, 1.5, 2, 2.5, 3, 3.5, 4, 4.5, 5 liters. However, the pediatric oxygen compressor we have been using has a regulator on it that delivers oxygen in increments of .1, .2, .3, .4, .5, .6, .7, .8, .9, 1 liter. Her oxygen need started at .5 and is now at .4. A pediatric regulator on the compressor gives us the ability to control the oxygen in smaller increments. We don’t ever use anything above 1 liter. If we were requiring more than that amount, Ella would be sick and likely in the hospital.

Needless to say, the switch was not successful. I’m just thankful that we pushed to do the switch this month. If we had waited right up until the few days before we moved, it would have been stressful. At least we have more time to get things organized before we move back, so we don’t end up having to ship a bunch of equipment.

We have another early PT appointment in the morning. Hopefully, it will go well again. I think the PT is going to stick with tummy time, since Ella is responding to it.

I can’t believe that the Bun is 9 months old today…wow. And there are only 37 days until we walk in our front door in Colorado.

Today was a busy day. Phew, I’m wiped. But I know I can’t leave you hanging!

Ella was in a great mood today, not fussy at all. She didn’t have stranger anxiety either. I think she enjoyed the change of scenery that getting out of the apartment offered. Overall, she seemed more like herself, which I haven’t seen in about a week. This usually means that she is feeling better.

The day started with an 11am appointment for an echocardiogram. First, the nurses came in to do an EKG. It was a bummer that I forgot the camera, because this was an amazing picture of Ella. They placed 15 stickers all over her chest and abdomen area and attached clips that are attached to a machine.

Once the EKG was complete, we waited and waited and waited. The technician for the echo did not come in to get us until 1:10pm. So, about a 2 hour wait. For about 30 minutes of that time, Ella fell fast asleep in my arms. This was shortly after her 12pm feed, so her belly was nice and full. This is the only time she slept during our outing…I was surprised.

The echocardiogram technician looked familiar. After talking with him, we realized that he did an echo on Ella back in early February when she was on the pediatric floor at Shands. He remembered her and told me that the pressure in her lungs looked better to him.

Around 1:30pm (the same time as my scheduled appointment with Dr. Kays), the cardiologist came in to discuss the results of the echo. His name is Dr. Fricker (yes, that is his name). Overall, he explained that Ella’s prognosis is good. He took in a lot of history and went to the computer to read many of her past echo results as well as look at the most recent chest x-ray. There was nothing alarming related to her heart and her test today did not show severe pulmonary hypertension. He noted that her prescription of sildenafil is low for an infant her age, and so the recommended strategy should be to let her outgrow the prescription rather than decrease or change it. He is writing a final report and will place some of her echocardiograms on a CD, so I can take them to Denver.

Once we were done there, we went across the clinic to the other side to see Dr. Kays. We were about 20 minutes past our scheduled time, so we were not placed in a room till around 2pm. At this point, my feet were killing me (wore the wrong shoes) and a toilet and food sounded fabulous. I prepared well for Ella and had everything and more that she might need, but I was hungry and needed a bathroom break. Ahh, the joys of motherhood as I pushed past my own needs.

I should mention that they took Ella’s vital signs at 11am when we arrived at the cardiology clinic. So here I was waiting to use the same scale, and it didn’t happen! She weighed in on the cardiology side of the clinic at 12 lbs, 13 ounces and 25.5 inches. She was 11 lbs, 14 ounces and 24 inches at her last appointment with Dr. Kays one month ago. Progress in the right direction!

While we were in our waiting for Dr. Kays, another CDH family that has been following the blog met us. The Bennetts have a son named John who is 5 years old and was saved by Dr. Kays. It was such a trip to have John lift his shirt and see his CDH scar and g-tube; their scars were identical. Once again, I was so bummed that I did not have my camera. Debbie Bennett took out her camera and snapped a few shots, one specifically of Ella and John. If we can get our hands on the photos, maybe we can post a picture. (As a side note, please pray for John. He is actually going to require another surgery from Dr. Kays for repair on his diaphragm patch in the upcoming days).

Seeing Dr. Kays went well. He was happy with Ella’s weight gain and overall progress. When we talked about going home and coming next month for our last appointment (the last visit for the near future), he mentioned that he thought we should have cake or something! Just as we look at Ella and realize what a miracle she is, Dr. Kays remembers the challenge of saving her life and getting her to this point. Ella smiled at him a lot and he gave her a couple of kisses here and there! Dr. Kays loves the Bun too!

In order to have her gain more weight and because she is getting bigger, he increased her formula intake to 600ccs per day (she was at 550ccs). Between this increase plus baby food she is ingesting, she should hopefully gain more weight on her next appointment.

Ella’s g-tube has been leaking recently, so they decided to replace it. Also, she had granulation tissue they needed to burn off again. It was less this time, so keeping it clean and dry as much as possible is the only key to reducing the frequency for her.

Our last appointment with Dr. Kays is Tuesday, May 13th, 2008. We need to visit radiology first and get a chest xray before the appointment. I’m hoping that she will impress all of us with the best chest xray to date.

We finally arrived home at 4:15pm and by 5:40pm, the physical therapist showed up for her short session with Ella. Again, it is so nice of her to offer to stop by and make the extra effort because it is best for Ella.

The session went well. Again, Ella was still in a great mood. I was shocked considering that it was nearly 6pm and she hardly slept today. The PT did not handle her as much directly, but we worked together and gave her time in her chair and then tried tummy time with our Boppy. It lasted for about 2 minutes, but I got Ella to smile a few times. It was great to see her do this since we have not been able to have tummy time. Each time I would try, she would get very upset. The PT showed me a few tips since Ella is weak right now, mostly with positioning using other pillows and blankets, and they worked! I think we were so excited that she was doing well, that we waited too long to rescue her once she started fussing. So, she had a meltdown. Oh well, I think that we were both excited that we even had 2 minutes with her on her tummy!

Once she started breathing from her meltdown, Ella fell asleep instantly. I simply laid her down in the crib and she was gone! We tried waking her up at 8pm. We tried everything…making noises, faces, using musical toys she loves, kissing on her, asking her if she wanted to watch American Idol (j/k) and nothing worked. She was exhausted from the day. So we’re hoping that she sleeps through the entire night. Although last night, she did the same thing. She went to bed at 6pm and although she woke up a handful of times, did not truly wake up until 6am in the morning.

Another piece of great news: Claudia’s colleague at the University decided to take on Ella for the next 4-5 weeks until we leave. So, Claudia is going to finish out this week of physical therapy with Ella and then hand her off. The other PT’s name is Barbara. Barbara lives in the same apartment community and can come to our apartment each day during the week. That is going to be great for Ella. Plus, I’m excited that we do not have to drive. Tomorrow is our last appointment of driving to physical therapy. Thank God!

Okay, that was a lot of detail for a busy day. I’m wiped out and running away to get some beauty sleep before I blog any more thoughts…

The highlight today was seeing Kelsey and Ben Rupert. Kelsey is the mother of Ben, a CDH baby that was saved by Dr. Kays.

Last June 1st when we visited the NICU at Shands for the first time, Ben was one of the memorable CDH babies that we met. He had just been extubated and I clearly remember him smiling up at Dr. Kays. It melted my heart and proved to me that Dr. Kays must spend a lot of time in the NICU for this baby to know him.

Ben had his 1 year old birthday and looks fantastic! Kelsey has been doing lots of OT and PT every week with Ben since last September (8 months). She had 2 goals that she was striving for him to meet by his first birthday and he did it! He can sit up on his own and eat 1/2 of a jar of baby food! His shirt said it all: Stud Muffin. It was great to see Ben and the progress that he has made over this past year. It helps give perspective on how much more work Ella needs for her age and yet at the same time, what miracles and gifts these children are to us!

Unfortunately, Ella was fussy the entire time. She is just in that stage where she does not want to be around other people. So even when a stranger is near, it is enough to make her upset.

From there, we went to the physical therapy session. Once again, Ella cried the entire session. Only a few minutes of work was completed until the therapist handed her off to me. Since Ella was turning blue, she had no choice.

It is so hard to see your baby get so upset. I have to increase her oxygen and it takes me a long time to get her to calm down and breathe again. She looks at me and I feel like she is wondering why I am not rescuing her. And yet, she needs to do this physical work in order to get stronger. It is so tough.

As I was calming her down, a moment came that I was not expecting. Although our days in Gainesville are numbered, the PT went out on a limb. Claudia asked me what else we have in our schedule this week. I told her about our various appointments.

In a nutshell, she offered to come to our house 3 additional times this week, on top of Ella’s 2 regularly scheduled visits in her office! She was honest and said that Ella is simply not going to make progress by meeting 2x per week, at this stage. Ella has to get used to others handling her and that isn’t going to happen by only having PT sessions 2x per week.

Wow – – I was pleasantly surprised. This is someone who has been doing pediatric physical therapy for 26+ years and truly cares about her patients. Also, Claudia mentioned that she had a thought the other day when she dropped off the chair for Ella at our apartment. She has a colleague that is on faculty at the University of Florida with her. Apparently, she has about the same number of years in experience. The amazing part: this PT lives in our apartment community! So she told me that she would talk to her and see if she would be willing to take Ella on as a patient over the next 4-5 weeks while we are still in Gainesville. To make it seamless with insurance, she even offered to bill it through her office!

Claudia is certainly not trying to hand off Ella to someone else. However, if it works out, it would be amazing because Ella could get PT almost daily and we wouldn’t have to drive anywhere. Claudia knows that is best for Ella and us! If nothing else, she stated that Ella would get more used to being handled so that we would not have to deal with that issue once we are back in Denver. I just hope and pray that it works out.

Tomorrow is a busy day. An echocardiogram at 11am, meeting another CDH family in-between, Dr. Kays at 1:30pm, and physical therapy at 5pm. I’ve got to prepare all of the food and meds ahead of time since I will be gone most of the day. I’m hoping for lots of beauty sleep tonight.

Psalm 16:8-9
I have set the LORD always before me.
Because he is at my right hand,
I will not be shaken.

Therefore my heart is glad and my tongue rejoices;
my body also will rest secure.

As I write this post, we are getting ready for the work week. The Bun had a bath and is relaxing in her pj’s. Dad is mentally preparing for his daily grind and Ella has 2 physical therapy appointments, 1 occupational therapy appointment, an echocardiogram to check her heart and an appointment with Dr. Kays. Also, we are switching durable medical equipment companies this week. We’re going to try and nail down an appointment with a physical therapist and a primary care physician. Lots going on, so I am trying to mentally prepare too!

In that vein, I want to caution all of you. At some point in the near future, we will begin the weaning process. While we plan on still writing about the highlights and sharing photos of the Bun, it will not necessarily be on a daily basis. This is not an immediate change, but is likely over the coming weeks. If you haven’t already, it is a good idea to sign up for email updates, so that each time a new post arrives, you will be notified via email.

One thing that we also want to ask: is there a private message that you would like to give to Ella? One of our avid readers suggested this idea a while ago. For Ella’s first birthday, we would like to begin to gather notes and messages from each of you to create a time capsule. You can send a note/comment/letter digitally via email, or drop something handwritten in the mail. We want to gather all of these sentiments, keep them tucked away, and have her open and read them when she is a young woman.

So if you want to participate, please start thinking about what you want to say to Ella. This is another reason to sign up for email updates, as we will provide more instructions via email on how to submit and/or send your messages.

Thanks for all the support and prayers during this time. Praise God that Ella is slowly gaining weight and staying healthy! We’ll see what the check-up on Tuesday reveals!

We’re looking forward to going home…that day is only 41 days from now!

Psalm 9:1-2
I will praise you, O LORD, with all my heart;
I will tell of all your wonders.

I will be glad and rejoice in you;
I will sing praise to your name, O Most High.

The highlight of our day was having Nurse Janet visit.

She decided to come over before working her graveyard shift in the NICU. It was so great to see her. Of course, Ella was still having stranger anxiety, but began to adjust a bit more towards the end of her visit.

As you can see, Nurse Janet was having a good time playing with Ella’s little piggies.

And of course, Janet did not come empty handed. She went overboard and brought us dinner, wine, dessert, and muffins along with coffee for breakfast. Way too nice.

There are a few people that we are going to miss tremendously when going back home. Nurse Janet is definitely one of them. We are hoping that her along with some of the other friends will make a trip out to Colorado some day.

Ella did amazing with her bottle today. One time, she finished a complete bottle. Another time, she took all but 10ccs. In total, she took 185ccs via bottle over 4 feedings, out of 280ccs total given in those feedings. Pretty good for Ella.

We had a nice lazy Saturday as a family. Ahhhh….

Today was a better day for Ella; she was not as fussy.

We tried to take a walk together, both of us sporting shades. Although it was short and sweet because it was incredibly hot outside. Yes, the “cold front” of 70 degree weather days has passed in Florida. So, the mid-to-upper 80s today made it a bit on the warm side. We are hoping for cooler days for the remainder of the time we are here.

Ella is still having lots of congestion. I had to use saline drops a handful of times and suction her nose. She was running a bit warm, so Tylenol and a sleeveless dress seemed to do the trick.

This is my new thought on the elevated heart rate: I think she is having a tougher time breathing through her nose, so her breathing is more labored and her heart is working harder.

Her congestion was apparent when we were bottle feeding during the occupational therapy session. She stopped more frequent than normal just to breathe. In a normal scenario, she might flare her nostrils more. But today, she would break away completely and breathe through her mouth. After she had taken 20ccs, we stopped the bottle feeding. She was enjoying it, but working so hard to make it happen.

Instead, I ended the feeding session by going to the fridge and grabbing the pears. The OT had not seen Ella eat any baby foods. He suggested it last week which prompted us to try pears, but this was his first time to watch her. She did fabulous. As she has done this entire past week, she got excited and kept opening her mouth to indicate that she wanted more. The OT was impressed and noted that her skills with baby foods are better than her bottle feeding skills.

Later in the day, I decided to expose her to apples. We had a smaller jar. I tasted them and thought they were pretty good and tasted very similar to pears. I was almost sure she would be receptive. Sure enough, she liked apples too. As a matter of fact, I think she may have liked them more. Hey, an apple a day can keep the doctor away. We like the idea of that around here.

By the time her 6pm feed arrived, she had already finished the small jar of apples. So, I decided to open the sweet potatoes. I was so curious as to how she would respond, considering her progress. This was a different brand than the first sweet potatoes she tried. Luckily, she liked them too. Heck, the only food that she has not liked this week was the bananas. However, I tasted the bananas and thought they were nasty, so I can’t blame the Bun.

Now, we have to branch out in a few days and try some other veggies. Keep in mind that we are not currently allowed to mix foods or give her mixtures, which might make things a bit easier. We have to stick with single foods. So, I’m sure she would love to stick with just apples and pears, but I instinctively know we should balance it out with veggies. This will be one of the main topics of discussion with Dr. Kays. Since we saw him last, we have not only successfully added corn oil to her nightly feed. But now, she is really digging the baby food. We need to make sure with her intake restrictions, that we are giving her the optimal calories and nutrient balance.

We’re still working out the exchange of durable medical equipment. It is supposed to happen next Thursday. Hopefully, the transfer of service will be smooth.

We have found 2 options for a primary care provider. We are trying to decide between the two options. If the decision does not become clear over the coming days, we might make appointments with both doctors and decide once we meet in person. We are praying for clarity since this person will be so instrumental to Ella and her forward progress.

It’s so good that we can boldly approach God and ask for His help, with anything that concerns us.

Thanks for the continued support and prayers.

Hebrews 4:15-16
For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

The photos above were taken early in the day before Ella had to work. She went to the physical therapist today.

Overall, the appointment went well. Actually, she cried a lot. The PT handled her more today. Ella had to work harder and she also doesn’t know the PT that well. I had to increase her oxygen to 1 liter and give her breaks to catch her breath.

When we left, we forgot this special chair that the PT has let us borrow for Ella to sit in each day. I usually have it at the apartment and bring it back and forth for her sessions. Well, the office is all the way across town so I just figured that we would have to deal with not having the chair until next week. This evening, the PT called and mentioned that she would drive it to us on her way home. That was so nice of her…she mentioned that she did not want any backward progress for Ella.

Aside from time in her chair each day, our homework includes making Ella sit up for 5 minutes with support, once every 2 hours throughout the day. When we put Ella in this position, she has a total meltdown. That is not going to be fun. But it is the only way to make sure that she starts to build up more endurance and strength in her neck, back and trunk area.

Late this afternoon when Ella woke up from a nap, I tried it for 5 minutes. As expected, she had a meltdown. Once we were done, she fell asleep…she had totally worn herself out. Hardly any time had elapsed between her long nap and this one, so it just demonstrates her small amount of energy. It will be exciting to see her get stronger over the coming months.

Today, we were successful in finding a physical therapist in Denver that can do the sessions in our home. That is exactly what we want. Apparently, the therapist specializes in infants and preemies. That is an answer to prayer. Right now, we are still hunting for a primary care doctor and an occupational therapist. I’m hoping these come together in the next week or so.

We’re also trying to switch durable medial equipment providers next week. There have been challenges that have surfaced this past week, but we’re hoping that it all pans out so we can switch next week, as planned.

Ella did not do much with the bottle today, but really enjoyed her pears again. I’m hoping that she will dig on her bottle more tomorrow. She hasn’t finished a bottle or taken a substantial amount in a few days. I think going between the pears and bottle is conflicting for her. When she does well with one (even when they are not in the same session), she tends to not try as hard with the other.

One thing is for sure: although Ella was fussy most of the day, she is still as cute as ever. And although crying is tough to hear, it still has a special place in our hearts since Ella spent months never being able to cry.

Our big outing for the day was going to the pediatrician.

Ella checked out well. She still had her onesie and diaper on, but weighed in at 13lbs, 2 ounces at the office of Dr. Sarantos! Again, I really judge her weight by the scale at the office of Dr. Kays, since she uses the exact same digital scale each time and she always weighs in the nude. But this gives me hope that when we visit Dr. Kays next week, we should see a weight gain. Her last visit to Dr. Sarantos was 12 lbs, and Dr. Kays was 11 lbs, 14 ounces.

Dr. Sarantos is so nice and knowledgeable – – I’m really going to miss her when we leave. As we discussed height and weight for Ella, she is still underweight for her age. When we plotted her weight and age for the past 3 months, it is going the right direction. If she can maintain the same pace, she will probably go into the “normal” range within 3-5 months. We’ll see!

Ella received another series of vaccines as well as her last synagis shot for the season. She will not need another synagis shot until November. Poor little Ella getting those shots. She was in such a great mood before that happened.

We tried pears again today – – and she liked them! It is definitely a taste thing for her. I think we might try apples next since they seem like they might have a similar taste to pears.

We were not able to take a walk today. Believe it or not, it was brisk and chilly here in Florida. Although it was not too cold for me, I wasn’t sure that it would be good for Ella with the cold breeze hitting her face. So, we opted to stay inside for most of the day.

Tomorrow, we have another physical therapy appointment. I could only hope that it will go as smooth as the appointment on Monday.

Yes, only 39 days until Josh leaves for Denver! And 46 days until all of us arrive in Denver to walk in our front door. We still have so much to coordinate for Ella, but just praying that it will all come together.

Psalm 33:20-22
We wait in hope for the LORD;
he is our help and our shield.

In him our hearts rejoice,
for we trust in his holy name.

May your unfailing love rest upon us, O LORD,
even as we put our hope in you.

Ella and I went on another walk around the community today. It was another California-esque day in the mid-70s, so the weather was perfect. She sported her headband and shades…way too cute.

This afternoon, Ella had a physical therapy appointment. It was good to start up again. The PT noted how much Ella had strengthened, even over the past few weeks since she first saw her. That was reassuring. We worked on more neck support exercises. The session went a bit longer (45 minutes) and Ella did great through the entire session. Right at the end, the PT lifted her out of the chair and had her sit up. At that point, Ella had a meltdown. She was tired and did not want to work anymore. Based on the few sessions that we have had up to this point, it was great to hear that the PT thinks that Ella will continue to make tremendous progress over the next several weeks. She noted that we will likely not recognize her in a few months.

Another new thing today: I tried feeding Ella bananas. Unfortunately, she did not like them. Her response was similar to that of the sweet potatoes. So although she LOVES monkeys, she is not into bananas. Bummer! Oh well, we know that she likes pears and we will simply have to buy some other fruits and veggies for her to try in the coming days.

Today was our 13th wedding anniversary. Wow, time flies!

Tonight, Nurse Michelle came over and watched Ella so that we could go out to dinner together. That was so sweet of her – – we had such a great time.

Our friend Sara made sure we were taken care of for this special day! Her husband Matt works at a really nice restaurant in town. Complete with wine, steaks and dessert, we enjoyed every moment. From the time we walked in, there was a table reserved for us. Then, Matt wanted to make sure that I enjoyed my glass of wine, so he let me taste several to make sure it was one I liked. At the end, Matt told us that everything was settled. Wow…that was too nice. We knew that we would have a chance to meet Sara’s other half at the restaurant, but had no idea that we would be treated like VIPs. His only request is that we entertain him and Sara, if they decide to visit Denver some day. Yeah, I think we can make that happen.

Also, even though Ella was fussy for most of the day and into the evening when we left, it was nice that we had no concerns about leaving her. When you have NICU nurses that love Ella and took care of her for months in the NICU, there is not much concern leaving her with one of them. Administering meds, feeding via a g-tube, monitoring oxygen, etc. is all second nature. That is such a relief and makes for a worry-free time.

It is not likely that we will get breaks like this anytime soon, not even in Denver. Although we have lots of friends that love us and the Bun, she is complicated and a handful for someone that doesn’t have experience with her and her medical issues. This just meant that we appreciated and savored every moment tonight.

It is hard to believe that we have been together for nearly 18 years and married for 13 years. We have been through so much together, but this past year with Ella tops it off. I can’t imagine going through this journey with anyone else. And to see what God has done in our lives and how He has worked!

On this day, we praise Him for our marriage and our baby girl.

Today we tried feeding Ella pears again. It was a smashing success. I had used maybe 1/4 of the small jar yesterday during our first session. She enjoyed it so much that we finished the jar! Can you believe it? I had to get up 3 times to get more pears. We are mixing it with a tiny bit of rice cereal so it is not too runny.

Even though she made some funny faces (it must be strange to feel that in your mouth when you’ve only experienced a bottle or binky), she would whine if I stopped offering them to her. It is exciting to see her enjoying them that much! Bottle feeding wasn’t anything to write home about today, but I’ll take success with the pears! We get to stick with pears for a few days before we try something else.

If you want to watch Ella enjoying pears, click on the video below (high speed Internet connection required)!

That long break left me and Josh with some down time and an opportunity to eat a meal together. That was nice!

Ella had a great time with the bath tonight. She was kicking in the water – – this is a new trick for her. Overall, she just seemed happy. And then when I take her out of the bath and wrap the towel around her with the hoodie on her head, she loves it! She gets so smiley…it’s great. Nothing better than a fresh and clean smelling baby and when you have her smiles to go along with it, bath time is always a worthwhile venture.

Today was a restful day, especially for me. Josh took care of Ella throughout last night – thankfully, she was only up a handful of times. And then, he got up at 6am with her, so that I could sleep in. That was a great treat for me. And apparently, I took full advantage of the offer since I did not roll out of bed until 11:30am!

It was a hot and muggy day in Florida with temperatures reaching 85 degrees, so we stayed inside with the air conditioning. Tomorrow is supposed to be much cooler topping at 70 degrees (much better), so hopefully we can make it outside with The Bun.

We’re excited to try fruit tomorrow…pears anyone?