Posted (jooosh) in All Posts on April-10-2009

Ella Renae had a pretty happy day and the slideshow above represents the gamut of emotions this girl shows off daily. She is such a good kiddo…as long as she gets what she wants. Try and feed her, or give her a bath, and she gets more ticked off than a 16 year old who just lost her cell phone privileges.

Kelly’s spending the night at a friends and Ella is winding down for the night. Tina and I are escaping into mindless activities but also reflecting on the day as it concerns our current life situation, and our Savior’s death over 2000 years ago.

Thank you for the comments, concerns, prayers, emails and flowers. The outpouring of support is so touching. Our faith is unshaken and our Lord is as trustworthy as ever. Our lives, including the child in Tina’s womb, are in His hands.

We’ll leave you with a quote that we found attributed to C.S. Lewis:

“Tragedy is what God uses to wake us up from a life that would otherwise be hopelessly lost from its intended purpose.”

Posted (Tina) in All Posts on April-9-2009

Ella slept okay last night. Several times, the pulse oximeter alarm went off, so I had to run into her room. At times, it was not apparent what was wrong because her numbers looked fine. When I woke up after getting up several times, I realized that it had to be her cannulas out of her nose. That is the only way that the alarm would intermittently continue to alarm. This happened more than once which made for a less than restful night.

She tolerated her feeding therapy and physical therapy today quite well, which was good to see.

Today was a rough day. We’ve been holding off on our news: I’m pregnant. I’ve been exhausted and sick for weeks now. We had our big debut planned with a cute shirt for Ella to wear bearing the phrase, “Big Sister”. Our hearts were anxious, but we know that we can trust the Lord and that there are never accidents; He always has a plan.

Well, we went for our first trimester screening this morning (I’m 12 weeks, 6 days) and received devastating news. It does not look like the baby is going to live. It has severe abnormalities and defects that make its life not viable including but not limited to: a chest cavity that is not fused placing all organs external to the body (liver, heart, bowel, etc.), fluid on the brain with large portions of the brain not formed, a skull that is open with brain matter floating in the amniotic sac too.

As you might imagine, this came as quite a shock to both of us. I had been holding out hope that our baby would be healthy, but had reservations due to our experience with Ella.

At this point, we just need prayer. The heartbeat is still there and beating quite nicely outside the chest cavity. We are told that there is 0% chance of survival; this is a lethal birth defect. As was the case with Ella, we are told that this birth defect is extremely rare (1:15,000 live births) and that they do not know what causes it and it is not genetic-based. As the perinatologist shared, “I feel like lightening has struck you twice.”

Hearts are heavy at the West home, so support and prayers are the best that we can ask from all of you at this time. We need wisdom and guidance from Him. And at the same time, we are so thankful for our beautiful baby girl that we get to enjoy each day.

We don’t always understand His ways, but hope that this experience too can be used to help other families and be an instrument for eternity. God even used this experience already this morning, when we were able to minister to my OB/GYN. He had to share devastating news with us, but we also accepted it and shared our faith with him. He let us know that our faith has touched his heart. And he became emotional and shared that this reminds him of Job’s experiences recorded in the bible and yet even in the midst of the worst trials, Job had these words to share:

Job 19:25 (NIV)
I know that my Redeemer lives…

Posted (Tina) in All Posts on April-8-2009

Ella slept good again last night! Yippee!

Also, she was in a great mood this morning. We thought her mood might stop with her feeding therapy session just before lunch time, but she kept up her tolerance. Kelly moved her to a different room to change up the scenery and although she did not enjoy the feeding, she did much better.

Many of you ask, so I thought I would try and explain. I know that it seems strange that a baby would not want to touch and finger foods themselves (explore on their own terms), but the feeding challenges go beyond not using utensils or trying “normal” techniques that kids respond to. You have to keep in mind that Ella has had such a different experience than most babies. She has experienced so many invasive procedures in her mouth from all her surgeries and months of intubation, she developed an oral aversion early on. Her body moved the gag reflex from the normal position on the back of the tongue to the front of her mouth. She developed an oral aversion because her mouth does not feel safe. Even light touch on her cheeks or anywhere near her mouth can result in her screaming, head violently shaking from side-to-side, turning blue from holding her breath, and retching.

Along with her mouth, Ella barely likes to touch anything with her hands which is why we have tactile stimulation exercises. Using her hands to explore and changing her oral defensiveness requires lots of exercises and training over a long period of time. It is not something she naturally likes to do or can naturally overcome, like many children. For example, when doing the feeding therapy sessions, some children may not even respond to any exercises near their mouth. Instead, you have to work your way from the outer perimeter of the face in toward the mouth, then the outside of the mouth, and gradually work your way into the mouth. This is why you might see the z-vibe (vibrating stick with different ends) that we place on Ella’s cheeks, face and mouth and even in her hands.

Trust me, this is not something that can be fixed overnight or is a simple change in approach. This is a true problem for many children that takes months and years to fix. This is also the main reason why Ella has a g-tube. Her oral aversion and reflux from her NICU stay was so severe that she was doomed to have feeding challenges. The nissen procedure prevents reflux and the g-tube gives us access directly into her tummy to feed her the nutrients she needs to gain weight and grow while we work on the feeding issues. Realistically, this can take years. Her current therapist thinks that maybe in 3 years she might be able to tolerate a majority of food by mouth versus her g-tube.

On the physical therapy front, she is still making strides but again it is slow. Her therapist tried some new techniques today with Ella that require her to bear her weight on her arms and shoulders. It was something new and Ella does not usually respond well to new things. But it is the next step in strengthening her, so that when she sits up and loses her balance, she can weight-bear on her hands, arms and shoulders. Currently, she doesn’t have the strength and simply falls over.

We’re simply thankful for the SVC procedure and all the strides that she has made on the medical front since that time. We’ve lowered oxygen, increased fluid and gained weight, discontinued Captopril and are getting more sleep. That’s plenty to celebrate.

Psalm 145:6-8 (NIV)
They will tell of the power of your awesome works,
and I will proclaim your great deeds.

They will celebrate your abundant goodness
and joyfully sing of your righteousness.

The LORD is gracious and compassionate,
slow to anger and rich in love.

Posted (Tina) in All Posts on April-7-2009

I’m in disbelief, but Ella actually went to bed at 11:15pm last night and did not wake up again until 7am. Wow. Two nights in a row of lengthy sleep. I won’t believe that this is her new trick, but man, sleep is good.

Well, the scale finally tipped this morning ever so slightly. Now, we are 10.39 kilos (22.86 pounds). I guess it just took her body a few days to decide that it wanted to get more chunk!

We don’t have any pictures of feeding therapy today. It did not go over well. She was not in a place to tolerate it. It just stinks that feeding is such a challenge…something that is so basic and really should not take this much effort. Most children, with some coaxing and time, will come around to putting things in their mouth. It’s just so hard when a child has to “learn” how to eat. She sees the spoon or food and loses it. She can turn from a beautiful, smiling baby into a monster. When you can hold her arm down and get a taste of food on her lips or mouth in between her moving her head violently from side-to-side, most times she just coughs and retches violently and then the tears come. I can’t blame her too much – – if I violently retched every time, I ‘m not sure that I would like eating either. We have to try and trick her by distracting with videos that she loves, so she doesn’t realize what we are actually doing. Without the extra stimulus, she loses it right away. I guess it just makes me realize how long we are going to have her g-tube for feeding…a very long time.

The feeding session wore her out, so she zonked for a bit and then woke to enjoy physical therapy. She has such a great time with her therapist. So cute to look at the pictures of the two of them interacting.

With feeding therapy and physical therapy each four times per week, we are in the process of trying to see if speech therapy can fit in too. Although she has some hearing loss, they still think we should proceed with speech therapy. Ella barely makes any sound each day and we want to see if there is anything that we can do to help that along. Another mom with a CDH baby shared with me that she was told eating skills had to come before talking would transpire. If that is the case, Ella will not talk for a LONG time…but I am sure whenever she does, we are going to get a mouthful from this princess.

In the meantime, we enjoy the facial and body language to let us know how she is doing each day. And that sweet smile, it melts my heart every day.

1 Corinthians 13:13 (NLT)
Three things will last forever—faith, hope, and love—and the greatest of these is love.

Posted (Tina) in All Posts on April-6-2009

Ella did amazing last night. She is officially a night owl and did not go to bed until 11pm, but then she slept the entire night straight through! Her sleep patterns are SO much more normal without Captopril. We are averaging 0-4 times per night…so much better.

She was not up for much of her exercises today, including feeding and sitting up. However, she still had a good time playing with Kelly. And as long as Kelly didn’t ask her to do too much that she didn’t like, Ella was full of smiles!

We received a call pushing her appointment with Dr. Fagan further out till April 23rd. This is her follow-up to her SVC procedure (chest xray, echocardiogram, etc.). So we will need to wait a bit longer to make sure that everything looks good. Clinically, her numbers look great which is reassuring.

She has stabilized on her weight gain and is pretty much staying at 10-10.1 kilos (22 pounds). Dr. Abman wants us to stay at this current food regiment until she has her appointment with Dr. Fagan to make sure we are not pushing too much fluid into her before she gets everything checked out.

The pictures from today make my heart smile. I just love my baby girl so much. The past two years have been such a challenge and yet, I cannot imagine my life without her. She brings so much joy.

Posted (jooosh) in All Posts on April-5-2009

The Bun slept pretty solid last night. She only stirred a handful of times and was able to console herself back to sleep without intervention all but two of those times.

I took care of Ella this morning, and shortly after her feed, she gifted me with a significant diaper. She’s had a few blowouts recently and this one was close too. I think what saved it was the fact that we just graduated her to a size 4 diaper. Man…what a GOOD time that was cleaning things up: Her, the bed, the sheets, her, clothes, her. No one can accuse me of being afraid of a little poop festival =).

It was still pretty cold today. Our thermometer indicated 23 degrees, which seemed a bit low to me. I stepped outside to see for myself, and I figured out why the temperature was maybe off a bit. One side of the railing on our deck was encased in a half inch of ice, including the thermometer. That may explain the extra cold reading.

Needless to say that we spent most of the day inside. Grandma finished up some sewing for Ella, Tina took care of the Bun, and I was able to work on a few geek projects I’ve been itching to do.

Tina and Grandma went to the mall late in the afternoon and while they were out, it started snowing again. Took me a bit by surprise, but it’s Colorado, so you really need to expect anything.

After Ella’s bath (which is always filled with major drama), the Bun spent some time cuddling on Grandma. Grandma had a good time making faces and getting Ella to laugh and smile.

Praise God for all the progress Ella has made. I know there are times when we want things to move along faster, but our growth and progress are perfected in God’s timing. What a blessing our sweet girl is. Thank you for all the love, prayer, and support.

Posted (The West's) in All Posts on April-4-2009

Well, it has been a relaxing day hanging inside the house while the snow and wind was outside. It started last night with freezing rain which had a cool effect on the windows throughout today!

Grandma Eusey did some sewing mends for Ella, Josh & I played cards, Ella tried eating some pears, we had a blowout diaper…all a part of the fun of a snowy Saturday.

We’re hoping the weather improves tomorrow for our last day with Grandma Eusey.

P.S. We went to church tonight and reflected on the hindsight we now have. Two years ago today we found out about Ella’s condition. We always knew the Lord had a plan, but couldn’t imagine how much He would use this precious girl to further His Kingdom. Praise God for our miracle girl.

Posted (Tina) in All Posts on April-3-2009

Grandma Eusey and I went for massages today and I’m so relaxed still that I am not up for writing much. So, enjoy the pictures of the Bun!

Posted (Tina) in All Posts on April-2-2009

Ella was only up twice last night – she is sleeping so much better. I’m still in disbelief, but loving every minute of it!

She seemed kind of cranky this morning, but finally decided that she wanted to be happy! Kelly had her in the chair and tried feeding her 4 times today. Wow….that is a lot of practice. And although she wasn’t excited about it, she still tolerated the feeding exercises.

One other note for the day: when Ella had her mouth open and head tilted back crying this morning, Kelly noticed that one of her molars in coming in too! So, we have the top front teeth (4 of them) coming in plus a molar. No wonder she is drooling so much!

Before Grandma Eusey and I escaped for the day, she and Ella had some time together. And Ella was checking her out! Believe it or not, this is progress. Remember that Ella still has stranger anxiety so it has taken a couple of days for Grandma to be able to move in that close!

Going to retire for the evening and hold onto this scripture…

Psalm 26:3 (NIV)
…for your love is ever before me,
and I walk continually in your truth

Posted (Tina) in All Posts on April-1-2009

Well, Ella was seen with beads and a boa today during her play time. I’m not sure if she was trying to play an April Fool’s Day joke on me…or not. Actually, her occupational therapist recommended it for the tactile stimulation. And I just happened to have the gadgets stashed away in my closet. It certainly brought back memories of business trips with colleagues in New Orleans!

Ella slept amazing last night. It has been 1 week since we discontinued the Captopril. Her sleep has been SO much better and more consistent. Mostly, she wakes up a few times per night and she only had one really bad night where she woke up multiple times. We have not had this type of relief since last summer. I am SO thankful that she is no longer on that medication and that the successful SVC procedure allowed her body to no longer require it. Sleep is a huge blessing, for all of us.

She also had a good occupational therapy session today. Although she still had retching and complained, her temperament and tolerant of the feeding exercises was better. She was in the chair for about an hour. That is a long time for her.

Grandma Eusey and I escaped for a pedicure this afternoon and hurried back home before the snow storm hit the Denver metro area. We went for a special treatment that lasted about an hour and fifteen minutes, including a sugar scrub and masque for the feet. It was nice and relaxing.

Looking forward to another evening of hanging out with family and watching the snow fall outside.