UPDATE – 8:00AM (MST) (by Josh):
Tina called Dr. Perry this morning (Ella’s pediatrician) because she had another rough night. Due to her continued fever, high heart rate, and overall behavior, he recommended that she take her to the ER to have her checked out. Hopefully some tests will give us more insight into what’s affecting our girl. It could be something as simple as a cold, or maybe something else. I’ll update once I know more.

While riding on light rail, listening to Charles Stanley this morning, God put this thought on my heart. Do the circumstances around us make God any less trustworthy? In ALL circumstances, we can fully trust in Him. Praise God!

UPDATE – 11:30AM (MST) (by Josh):
Tina just let me know that Ella’s being admitted to the hospital so they can watch her overnight. Not a ton of info yet, just doing all the tests…xray, echo, labs, etc in the ER before they move her to a room upstairs. One doctor said the chest x-ray looks hazy… and that maybe her lungs are wet, but they look ok otherwise…no collapsing or signs of aspiration. We’re waiting to see what Dr. Abman (her pulmonologist) thinks. White blood cell count looks ok, so it doesn’t look like infection. She’s also not running a fever right now. She’s currently on 700mls of O2 and saturating about 95%. Heart rate is around 150. We’ve also noticed that her urine output has decreased over the last day or so.

At this time we think it may just be the fluid issue Ella has always battled, but we’ll see.

Praying and trusting.

UPDATE – 11:00PM (MST) (by Tina):
Once all the tests were done this morning, we were stuck in the ER until 4:30pm. The Children’s Hospital had every bed filled to capacity, so we were waiting for someone to be discharged. They wanted to admit Ella to the hospital so that they could run more tests and monitor her overnight.

They moved us to the eighth floor. It is a private room complete with a flat screen TV, pull out bed, bathroom and view of the city and mountains. Along with the beautiful facility, all the employees have been amazing. We have never been to a Children’s Hospital and it makes such a HUGE difference when everyone is trained to take care of children. If we have to be in the hospital, we are glad to be here. It makes the experience not so bad.

This evening, Ella has stabilized on 1 liter of oxygen. Along with her fever that returned tonight, her heart rate is around 185, breaths per minute 85-100, and saturating 93-95. So far, all her tests are not pointing to anything obvious. Her white blood cell count was normal. Blood labs came back with everything in normal range, although her blood urea nitrogen (BUN) came back at 14. If you remember, a higher number means that she is more dry and Dr. Kays liked to see it 20 or higher. The last BUN was 18, when we first returned to Denver. So she is definitely more “wet”, even though she is still on a lot of diuretics.

They took a blood gas this evening and said that it was pretty good – – they expected it to be worse, but it seems her body is compensating. For all the medically minded people out there, here were the results:

PH – venous gas 7.45
PCO2 – Venous 47
PO2 – Venous 54
HCO3 – Venous 32
Total CO2 – Venous 33
Base Excess – Venous 7.0
O2 Saturation – Venous 87.3

The chest xray came back looking slightly hazy, but not real bad. It is tough for them to comment because they have no other chest xrays to compare. Her echocardiogram shows no pulmonary hypertension; this means her medicine is working and the altitude is not causing too much of an issue. The swab for viruses (they swipe boogies from her nose) came back negative. So far, no bacteria growth for the other blood tests.

Dr. Perry called and we discussed everything that happened today. He is such a great doctor – so nice. Tomorrow, Dr. Perry will be attending on rounds so we will get to see him in person. We are going to try and have some tests completed tomorrow through gastroenterology – – we want to figure out why she is retching so much and if that has played a role in her lungs getting too wet (could she be micro-aspirating)?

We expect to be here throughout tomorrow and possibly for another evening, depending on how Ella does throughout the night. Once we meet with all the doctors and they discuss the results of all the tests tomorrow morning, we will have a better idea.

Thanks for all the thoughts and prayers for the Bun. The support out there from all of you is so encouraging during times like these.

Ella has not been herself the past 24-48 hours. Along with the increased coughing and retching, you can just tell that she doesn’t feel that great. The smile above was one of the rare glimpses throughout the day.

She felt warm, so we gave her Tylenol a few times today. Dr. Perry told us to expect that Ella might have a fever for 24-48 hours due to the vaccines. If Ella doesn’t seem improved by the morning, we will be calling Dr. Perry. These symptoms started last Friday night, but seem to be sticking around.

Her retching was so bad this morning that she passed out briefly. She has done this a few times to me over the past few weeks. But Josh was taking care of Ella this morning when it happened. It freaked him out a bit. I don’t think he has ever seen Ella get that bad with retching.

It all seems related to secretions and congestion. And today both of those things are worse. Who knows, maybe she has a bit of a cold or something. She has been breathing through her mouth more, since her nose seems to be more congested, and she seems to be requiring more oxygen.

Even at night while asleep, she is requiring more oxygen and her heart rate continues to be higher than it should be – – higher than her baseline.

When you can’t get Ella to break much of a smile, even with coaxing and funny faces, you know that she isn’t feeling well. Typically, these symptoms do not point to a good direction for Ella.

Please pray that the Bun will begin to feel better.

And yes, she even crosses her leg when she’s getting beauty sleep!

We are practicing sitting in the new high chair. Today was pretty good. We had 3 sessions lasting 15 minutes each. They may not sound like a lot, but that is great progress for Ella.

This afternoon Grandma West left to go back home. We are sure going to miss her!

As a follow-up to yesterday (I was too tired to write), we went to Dr. Perry’s office for her 12 month well check. We had a great visit.

Ella weighed in at 15 lbs, 12 ounces and 27 1/4 inches long. She is getting bigger! We discussed the notes/strategy from the nutritionist that visited last week. Until the swallow study is complete, Dr. Perry increased her food intake 50 ccs total. So now she is taking 700ccs of formula each day. Her caloric intake is lower than it should be, so the increase in Alimentum should help. Once the swallow study is done and there are no concerns, we will reconvene and come up with a new feeding strategy. We’re hoping that we can resume with solid foods and phase out Alimentum to a pediatric formula, likely Peptamin Jr.

Retching has been a common occurrence with Ella these days. It used to occur in Gainesville, but seemed to be tied with feeding and volume. For some reason, it has increased since our return to Colorado (several times daily). But now, it is not related to feeding and she is retching HARD. It still seems to be directly related to secretions in her esophagus that she does not know how to manage (they block her airway). So, she coughs, then gags, then retches. Dr. Perry mentioned several ideas including dryness tickling her throat to maybe she is retching more because she is not eating orally and using the esophagus muscles. After discussing all the variables that could be impacting it, he wants her to go see a pediatric gastroenterologist to look at her esophagus and check out her nissen fundoplication. In addition, he increased her dosage of Reglan 50% from .4ccs three times per day to .8ccs three times per day.

A few days ago, I ceased giving her juice because she is retching so much that I am concerned about aspiration. Instead, I am simply giving her water. Dr. Perry expressed that water is good for her and to let her have as much as she wants. The good part is that it does not seem like we have to be as conservative with fluid restriction in her diet. Today, she drank 8 ounces of water – – that’s a lot for her.

Ella had some granulation tissue build-up on her g-tube, so Dr. Perry burned that off. Also, he provided us with some silver nitrate sticks so that we can manage that at home in-between appointments.

We discussed that we are anxious to try weaning the diuretics. We’ve always been concerned about the high dosage that she has been taking for so long. Dr. Perry recommended that we have labs taken in the morning before she sees the pulmonologist in late August, so we have a baseline. Plus, she hasn’t had blood labs done in a while and it is always good to check her electrolytes.

Ella also received her 12 month vaccinations. They did it just the right way – quick, fast. Two nurses came in and gave two shots in the each leg simultaneously and then two shots in each arm simultaneously. As you might expect, Ella did not like this part of the visit. But at least they understood to not take forever to administer 4 shots. I had to increase Ella’s oxygen and do lots of comforting afterwards, but she calmed down within 5 minutes. That’s pretty good for Ella – – earlier on this journey, she would not calm down that quickly when she would get upset.

It is so cute to see Ella interact with Dr. Perry. She likes him. She was rolling around on the table, kicking and grabbing the paper lining. Then, she would roll over and hand her binky to him or grab the hair on his arm! He mentioned that he can see a lot of forward development in Ella since the first time we visited. It is always good to hear that kind of perspective.

Ella, Grandma West and I hung out today at the house. Grandma West looked for projects to do – she found the swing that Grandpa bought for Ella’s birthday and put that together (Ella had a swing in Gainesville, but we sold it on Craigslist before coming back to Colorado). It will be good to put Ella in a swing again. I think we’ll try it tomorrow.

The Bun spent more time in her high chair today. The sessions throughout the day were for 5 -15 minutes, depending on her tolerance. I’m just placing her in it and distracting her the best I can to try and get her used to being in the chair. Eventually, if we get the “ok” to begin eating solid foods again, I’d like to have her eat in the chair! It would be a nice routine as we start that type of therapy again.

Aside from all this info, she had a great first birthday and is still the cutest Bun ever! By the way, is that a thumb I see?

Grandma West went a bit crazy today and bought party favors, so that we can celebrate in style tomorrow. It should be fun. Hopefully, Ella will be in a good mood.

The highlight of the day was having visitors from the south. Yes, Barb & Pat Dirrim visited us today. They live in Atlanta, but were visiting family in Denver this weekend. They have been following Ella’s progress since she was born. Although we had never met in person before, they emailed and asked if they could come and meet Ella. Well, of course!

It sure is fun to meet people face-to-face that have been following our journey. We had a nice visit and they showered us with birthday gifts for the Bun. One gift was an outfit that I think Ella might need to wear tomorrow. Barb took a simple pant and t-shirt combination, but embroidered the shirt with “the bun is one”. Too cute!

We simply added their gifts to our ever-growing pile of cards and gifts for the birthday celebration tomorrow (thank you everyone for your love for Ella on her first birthday!). Before the Dirrims left, we ended in prayer which was awesome. It is so nice to have an instant connection with people based on your shared faith in Christ.

We’re looking forward to tomorrow and seeing what the Bun does when she is crowned princess and has a lick of cake and ice cream! Although this celebration has to be small and simple, it can be Ella’s first introduction to many future parties that will occur once she gets older and healthier: Ellabrations!

Ella is getting her beauty sleep right now, so that she is ready to party!

I can’t believe that a year ago today, I ate Olive Garden for dinner with Josh in Gainesville, FL. Also, I started to feel things moving around and thought I was experiencing Braxton Hicks for the first time. For those of you that were not following along back then, the title of the post was so correct: Braxton Hicks got it wrong!

I talked with my brother and sister-in-law late and got off the phone around 11:30 pm EST. They were excited that I was getting signs of an upcoming birth. I just seemed to think that it was at least 2-3 weeks out at that point. Boy, I was wrong!

By the time we went to sleep at midnight, I was feeling contractions (even though I did not realize it). Finally at 4am, I woke Josh out of a deep sleep to let him know I was in pain! Lots of pain for 4 hours straight! And isn’t God’s timing amazing? Dr. Kays was just getting back from an extended vacation; it was his first shift back.

Ella Renae West was born into the world only a few hours later after they attempted to slow down the birth! And our long journey started…

It’s just hard to believe that we are sitting here at home 1 year later with a beautiful little miracle.

We praise God for taking us on the road less traveled. Each day, He surprises us with how He uses our story to bless others as well as ourselves. Sometimes we wonder why He chose us and then we have to stop and remind ourselves that although it doesn’t always makes sense, He knows best. We feel honored and privileged that He has entrusted Ella into our care. May we always strive to please Him in all we say and do.

Ella was having a good time today rolling around on the carpet. She does not have the skill to roll over by herself, but you can tell that she wants to do it. So I was guiding her and helping her get to certain positions.

Also, she is getting more skilled at taking the binky in/out of her mouth on her own. While I was photographing her, she even offered the binky to me!

Her PT appointment went fair today. The therapist and I spent more time discussing strategy. I tried to stress that I think the way that we are doing exercises is too much for Ella. You have to be tricky with her. The key is going so slow and breaking down simple physical tasks to the point that Ella does not realize that she is working.

For example, we want to teach her to roll over. When she is on her side, her arms and legs need to be in certain positions to roll over. Right now, the positions are not a natural thing for Ella. So I suggested that I could try working with her each day to ensure that her arms and legs are in the right position even when she is just on her side, distracted by her toys. With repetition, Ella will start to lay in that position more naturally. If she does that on her own and her body is in position to roll, she may even try it more herself. The therapist was very receptive and mentioned that she might even give Ella’s prior PT a call to discuss strategy too. She admitted that she does not have a lot of experience with medically fragile children, so the amount that you can “push” the kid to do is a lot different. Also, she wants to be respectful and learn Ella’s limits.

I really like the PT and want to continue working with her. Ella likes her too! I think we just got spoiled being in Gainesville and having a PT with so many years of experience. But at least Ella’s prior PT is open for discussion via phone on ideas and input to help Ella move forward. I think that will be a great resource for the new PT, especially in these early days.

Another CDH baby that we only know via their blog was readmitted back into the hospital last night. She is only 4 months old and reherniated – – her prosthetic diaphragm patch gave way and the contents of her bowel moved back into her chest causing a bowel obstruction. Praise God that the surgery went well today for her and that she is recovering.

This is always something that we worry about in the far recesses of our minds. As this other CDH mom shared on her blog, “We’re so used to seeing her smiling and playing and to see her looking sick and helpless again is heartbreaking.” This is my worst nightmare – – to have Ella get sick or reherniate. Every day when she retches, I’m always saying a silent prayer for no reherniation (she retches HARD) and also no micro-aspirating into her lungs.

We feel so blessed that she has been home from the hospital for nearly 6 months now and has been able to remain healthy. That is our continued prayer for our little miracle who will be turning 1 year old this Thursday. Our birthday wish is for continued health this upcoming year, so that she can grow and remain strong.

Looking at the little face below, I can’t imagine life without her. And just to think: a year ago today, I had just arrived in Gainesville and Josh and I went to see Ratatouille in the movie theater while Ella kicked around in my belly!

Ella was visited by a nutritionist today. Her name was Carrie and she was a really sweet person. She spent a lot of time consulting and gathering all the information on Ella’s condition and history.

A report will be put together by the end of the week with her recommendations. I am planning to take this with me to my appointment with Dr. Perry next Monday. I know he wants to increase Ella’s food volume to ensure enough caloric intake. It will be interesting to see what Carrie recommends and how Dr Perry decides to incorporate those recommendations.

Carrie had an infant scale with her, so we weighed and measured Ella. She weighed 15 lbs, 8 oz and was 27.25″ long. Every scale is so different, so I don’t hold onto that with any seriousness. I’ll be more interested to see how she weighs in on the scale at Dr. Perry’s office, especially if we can use the same one.

We have a PT appointment tomorrow. I’m hoping that Ella is in a better place and that she will have a good session since our last appointment didn’t really take place.

As you have witnessed before, the Bun sure likes playing with Dad when he arrives home from work.

I am reminded each day what a blessing it is to have this little girl. She has such a sweet spirit and I still cannot believe that we made it to this point. Only 3 more days until she has her first birthday!

No, Ella has not started playing with light sockets! But, by looking at the picture above, you might be skeptical. Her hair is out of control these days!

Ella did some of her exercises, but was not too tolerant of “working” today. Maybe she knows that it is the weekend and expects a break too. Instead, she spent lots of time watching baby signing & Baby Einstein videos. She was smiling and kicking a lot which was fun to watch.

We had a great day hanging out with friends.

Josh and Stefanie Sides came over to visit with us and see the Bun. We had not seen them for over a year, since before we left for Ella’s birth to Florida.

It is so great to have the comfort of long time friends, where you can simply pick up from where you left off as if not a single day had passed. We have known them for almost 11 years; we met when we moved to Colorado back in 1997. We had a great lunch and then of course, the boys had to play the Wii.

Tomorrow, a nutritionist will be visiting our home at 10am. She will be reviewing Ella’s current feeding schedule and making recommendations for food intake as needed. We know that Dr. Perry plans on increasing Ella’s food intake after our appointment next week, simply based on weight gain. But, it will be interesting to see if this nutritionist recommends anything different than the nutritionist at the Children’s Hospital that saw Ella in early June.

We’re knocking on doors and praying fervently for direction in the coming days. Along with thinking about possible job scenarios for me, a bigger component is the daily care of Ella. We’re trusting that if it is meant to be, the perfect person will cross our path. We’re not in a rush, but just excited to see what His plans are for this next chapter.

Psalm 119:34-36
Give me understanding, and I will keep your law
and obey it with all my heart.

Direct me in the path of your commands,
for there I find delight.

Turn my heart toward your statutes
and not toward selfish gain.