Posted (Tina) in All Posts on April-20-2008

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.

Posted (Tina) in All Posts on April-19-2008

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….

Posted (Tina) in All Posts on April-18-2008

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.

Posted (jooosh) in All Posts on April-17-2008

It’s just me and the Bun at the moment. Ella is down for the night while Tina is out running some errands.

For the last 24 hours or so Ella’s heart rate has been a bit more elevated than normal. When she sleeps at night it usually falls somewhere between 112 – 122 bpm. Last night, it averaged about 20 beats higher, 134 – 144 bpm. This is no where close to where it has been during her previous bad spells (175 – 185 bpm while she’s sleeping!!!), but it’s still above her “normal” sleeping baseline.

Tina and I talked about it before going to bed, but couldn’t think of any changes that would have caused this. I woke up a couple times during the night, just to see if the number had gone down, and it hadn’t.

This morning I thought it may have been cause by her recent vaccination…Tina had thought the same thing. She has been more fussy the last day and a half, and past vaccinations did cause some similar symptoms. She still hasn’t had any teeth break through either, so that may be contributing as well.

The good news is her saturations are normal, and other than being somewhat fussy, she’s doing well clinically. Even with her elevated heart rate, she slept real solid last night, only waking up a few times.

We’ll see how tonight goes. I think we’ve been on such a good track, I really don’t want to see us get derailed any time soon. Heck, if we don’t get derailed at all, I’d be fine with that too. The reality is, I expect us to have some bumps in the road moving forward, I would just like us to be settled back in Colorado before we have to experience them.

Bottom line…like it has been this whole time…

Trust. Trust in Him.

Posted (Tina) in All Posts on April-16-2008

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.

Posted (Tina) in All Posts on April-15-2008

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.

Posted (Tina) in All Posts on April-14-2008

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.

Posted (jooosh) in All Posts on April-13-2008

Ahh…nothing like a cool down in Gainesville. It was rainy and cool in the morning, but later in the day it was 75 degrees and the humidity was very comfortable. The weather in the afternoon reminded us of Southern California’s near perfect weather. This was not a day to stay inside, so we ventured out a couple times.

In the morning, before it warmed up, we strolled around our neighborhood. Ella was dressed up in her Bun-ny outfit to keep her warm. She did great the whole time and really didn’t fuss at all.

In the afternoon, we hopped in the car, grabbed a couple sandwiches from Jimmy John’s, and headed over to the Haile area of town to have an “in car” picnic.

On the way, Tina was feeding Ella some pears. Man, it blows my mind to see how much she’s taken to these. She’ll just open her mouth wide for Tina to feed her more. Yeah…that’s MY girl.

We found a nice shady spot to stop that overlooked the Haile Plantation Golf Course. After parking the car, Ella started getting fussy. Tina was trying to feed her but the Bun’s mood was starting to disintegrate. I decided to start driving through the neighborhood. No sooner did the wheels start turning and Ella’s emotional state improved. I have heard how kids are comforted when driving in the car, I just hadn’t seen this contrast with Ella until now.

We spent about 20 minutes doing 10mph on residential streets until Ella got all her food down. She fell asleep so we figured we could go park in the spot we found before and have some lunch ourselves. No such luck. Once the engine was turned off, Ella’s engine turned on. She started fussing again.

Instead we found a bistro table outside where we could sit. Once we gave Ella what she wanted, out of that car seat, she calmed down and really enjoyed looking around. In fact, she started talking and cooing more that we had ever heard. So neat to see her express herself!

After lunch, we strolled around the The Village at Haile and Ella loved it. She was smiling a bunch, listening to the birds, and looking at the squirrels.

What a beautiful day to enjoy as a family. I continue to be in awe of how far she’s come. I don’t ever want to take any day with her for granted. We are so blessed to be her parents.

“Yeah, I gots me a pink monkey and headband…what’s it to ya punk?”

Posted (Tina) in All Posts on April-12-2008

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?

Posted (Tina) in All Posts on April-11-2008

Life is just a bowl of cherries;
Don’t make it serious;
Life’s too mysterious.
You work, you save, you worry so,
But you can’t take your dough when you go, go, go.
So keep repeating it’s the berries;
The strongest oak must fall.
The sweet things in life
To you were just loaned,
So how can you lose what you’ve never owned?
Life is just a bowl of cherries,
So live and laugh at it all.
by Lew Brown and Ray Henderson, sung by Ethel Merman in Scandals (1931).

Ella and I took our walk around the community earlier today at 8:30am before it got too warm outside. Both of us sported our sunglasses and Ella faced out on the Baby Bjorn. I think she is really enjoying the view. She doesn’t complain much. She just looks around and concentrates on keeping her neck up. I take that as a good sign, considering that she would melt down when even stepping foot outside early on.

The OT appointment was good. She took 20ccs for the OT session. He did make a couple of suggestions this week. First, he asked that we always increase her oxygen when we are giving her the bottle (double her oxygen to 800ml). He noticed how she has to stop sucking on the bottle, just to catch her breath. While she is learning to drink from the bottle, it would be better to give her more air so that she doesn’t have to worry about that part. I definitely agree: I can see her stop and breathe. She literally has to decide whether to take more of the bottle or breathe.

Also, he asked if we had continued feeding with the various foods orally. I explained that we had stopped for a bit because we didn’t want to add too many variables at once (e.g. corn oil) and not know which item might be causing a problem. He asked which times were best for bottle feeding throughout the day. Typically, I think that the 9am and 12pm have the highest occurrence of her doing well.

So, he advised to take one of the other feeding sessions each day and try feeding her orally again. He instructed me to mix rice cereal with the fruit or vegetable to help make it the right texture. As far as technique, he asked that we specifically try to place the spoon in her mouth so the food hits her palette. This stimulates her to move her tongue around. Later on when she has more skill, we can place it in the side of her cheek. After she tries eating a fruit or veggie, even if it is a tiny amount, the OT wants me to feed her formula via the g-tube (he doesn’t want me to try the bottle during that session; eating foods orally is enough work for one session).

I took his advice and used our 6pm feeding to try pears. Just like with the bottle, I left her lying down in her crib (her most comfortable position). It was a success! She still made faces at me and wasn’t too sure what to think. After several attempts, she actually started to open her mouth for me. So far, she likes pears way better than even the sweet potatoes. Plus, I liked that they were less messy! It will be interesting to try this for one feeding session each day to see how she progresses.

Ella did great with her PT exercises today. She sat in her chair for a total of 90 minutes throughout the day! That is a long time for her. She also sat in her swing for a bit. Plus, the walk this morning really makes her use her neck muscles. I think she is getting stronger each day in this regard. We’ll see if there is any marked difference for the PT to notice on Monday.

The cats are getting more comfortable with Ella. She gets excited when they come near her. It is fun to watch her get entertained, like she did tonight with Macy.

Today was the first day this week that Ella has seemed like herself again. She must be feeling better; she was not fussy at all. That is a great relief because I think it means that she is truly okay. Even tonight, her saturations and heart rate look really good. I don’t have a definite explanation for what happened for most of the week and why she seemed “off” clinically, but I think she is back on track.

When the Bun is on track, life is just a bowl of cherries.

Deuteronomy 32:3-4
I will proclaim the name of the LORD.
Oh, praise the greatness of our God!

He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.