Ella and I had a great day just hanging out at the house. It was gorgeous outside, so we took the opportunity to walk out on the patio and enjoy some sun. I’m so thankful that the warm weather has arrived. It pleases the Southern California girl inside me.

We did not have any therapy appointments, so we did our feeding exercises and physical exercises on our own…in a mom and daughter playful way. It was a good time.

Ella’s daytime congestion is still getting the best of her and causing lots of retching throughout the day. Although, it finally seems like the congestion at night has faded. She is requiring about 800ccs of oxygen during the day and 500ccs at night. We have not seen this type of saturation in weeks, as it seems to have taken about a month for her to return to this baseline behavior. Once again, we are very curious to see what type of oxygen she requires when we travel to sea level later this week.

We have graduated to 210ccs per bolus feed during the day, in an effort to lessen the need for the food pump at night. And it seems that she is still gaining weight, ever so gradually. This morning, she weighed in at 11.02 kilos or 24.24 pounds. We’d like to keep the volume of food the same until she has her next EKG and echocardiogram to check her superior vena cava stent, as long as she is still gaining weight. Since she may still have fluid issues (although it seems to be much less than before) we still need to be cautious about increasing fluids. We would like to make sure the flow in the SVC is the same or moderately the same before increasing her volume of food. Her next appointment is June 9th, so we’re hoping she can still make moderate weight gain until that appointment arrives.

Today, I feel prompted to share an excerpt from a devotional book that I have been reading called “Streams in the Desert” by L.B. Cowman. The entry for today, May 11th, resonated with me this morning. It reads:

Psalm 66:12
We went through fire and water, but you brought us to a place of abundance.

It may seem paradoxical, but the only person who is at rest has achieved it through conflict. This peace, born of conflict, is not like the ominous lull before the storm but like the serenity and quietness following the storm, with its fresh, purified air.

The person who may appear to be blessed, having been untouched by sorrow, is typically not the one who is strong and at peace. His qualities have never been tested, and he does not know how he would handle even a mild setback. The safest sailor is certainly not the one who has never weathered a storm. He may be right for fair-weather sailing, but when a storm arises, wouldn’t you want an experienced sailor at the critical post? Wouldn’t you want one at the helm who has fought through a gale and who knows the strength of the ship’s hull and rigging, and how the anchor may be used to grasp the rocks of the ocean floor?

Oh, how everything gives way when affliction first comes upon us! The clinging stems of our hopes are quickly snapped, and our heart lies overwhelmed and prostrate, like a vine the windstorm has torn from its trellis. But once the initial shock is over and we are able to look up and say, “It is the Lord” (John 21:7), faith begins to lift our shattered hopes once more and securely binds them to the feet of God. And the final result is confidence, safety and peace.

On Mother’s Day 2008, I posted a series of photos that visually represented Tina’s journey with Ella. The trend starts right where it left off and continues all the way through today. A taste of Tina’s strength, compassion, patience, humor, and love for Ella can be experienced by the images below. Thank you Jesus for Ella’s amazing mother.

Also, I don’t want to forget to honor Tina by remembering our son, who was with us a very short time, but his footprints will leave a permanent mark on our hearts.

Our son’s footprints (actual size)

Ella had a good day.

We were bummed that we had to take Terri to the airport…we wanted her to stay! We miss her already….sigh. But, the Bun enjoyed the car ride and then I took her on a short errand on the way home. As you can tell by the smiles, she just loves being outside the house and hanging out in her stroller.

Her PT session was good too. We are trying to get her to bear weight on her forearms and elbows. Each time we tried to “sneak” that move into her exercises today, she would melt down. Fortunately, her recovery time was not too long, but the PT left me with some exercise sheets to see if I could try the weight bearing exercises in our alone time with Ella.

We’re looking forward to the weekend where we can rest and get some chores done around the house. Moreover, we’re getting ready to go on vacation this next Friday. Since Ella is stable, we want to take the opportunity to go visit family, especially Josh’s grandparents. They have never had the opportunity to meet their great granddaughter. It will be a long drive, but hopefully Ella will hang tight for the road trip!

I’m entering the weekend with a thankful heart – thanking the Lord for wonderful friends who are providing prayers, love and support during this season of life. It means so much. Once again I’m reminded that He always provides what we need to get through the valleys of life.

Psalm 36:5 (Today’s NIV)
Your love, LORD, reaches to the heavens,
your faithfulness to the skies.

Hi, I’m Tina’s friend Terri and for the last 72 hours, I have had the honor of being part of the West family. We’ve had a great time visiting, and I’ve had an awesome time getting to know the Bun. This morning I asked Tina if I could write the blog this evening…a strange request, but one my best friend and her adoring husband allowed.

Let’s address the business of the day before I being the muse. Ella had a good OT session, which is evident by the condition of Tina’s shirt. Food was everywhere!

After nap time, the girls headed out for another shopping excursion. She does so well in the car and stores. Not a peep, cry, whine…I think she’s thrilled to be out and part of the world beyond the crib. We actually had a great day, so good in fact that she allowed me to rock her for a while before she went to bed. That was the high point of my trip!!

So many of us follow this story on a daily basis, and have been given an intimate glimpse into the hearts and lives of this dear family. The work that God has done is obvious to us all. However, I know I’ve been guilty of reading the blog, viewing the cute photos and thinking that things are good. Little did I know the work and drama that goes on inside of this house on a daily basis. I thought I knew, but in reality, I didn’t have a clue!

Tina has mentioned so many times the issue of congestion. Sure I think I understand congestion. I have nieces and nephews. They always have a runny nose or colds of sorts, so that’s what I relate to. Newsflash, that’s not the type of congestion this precious little one deals with. I can’t imagine having serious congestion all the time and being unable to clear my throat or blow my nose. Hearing her gag and wretch over and over broke my heart, and watching her mother calmly support her was nothing short of amazing. The one mantra I now know by heart is, “Swallow Bun,” which is literally said 100 times a day. What’s cool is that Ella understands and is beginning to try and manage the severe retching.

The other thing I learned this week is that Ella really does require attention at all time. A serious scare for me on Tues, was when mom walked away for less than 45 seconds and in that time Ella became upset, stopped breathing and was on her way to passing out. HOLY COW!! That’s when it hit me that they really don’t have the ability to allow others to assist with her care. My every instinct was to hold her, kiss her, make her laugh, but that just not possible.

As I prepare to pack my bags and head back to Dallas, I’m reminded how much this family still needs our loving prayer and support. Things are far from normal, or “ok”. It’s been such a blessing to witness God’s abundant love, visible and in the flesh in two people named Josh and Tina West. These guys are AMAZING! The love and patience I’ve observed over the past few days is similar to what I imagine from our Heavenly Father.

We are all blessed to be part of this journey.

Ella had a better day.

Her OT session was cancelled because the therapist’s son is sick. We hope he feels better soon. The lack of a formal therapy session just gave Ella and I an opportunity to try something different. I tried to place her in the chair while I gathered some supplies, and she started to fuss. She does not want to be in the high chair because she associates it with eating. So, I just held her on my hip, grabbed food, put some on my finger and would touch it to her lips. All of this while walking around the kitchen area and talking to Terri. It was enough of a distraction and something different for Ella. She did not welcome my finger touching her lips with food, but she did not melt down and only retched one time. We felt that was a successful session. Later in the day, the Bun had a great physical therapy session too, as evidenced by the photos!

Once the afternoon passed, all of the girls got into the car and took a field trip to accessorize. We drove to 2 local show stores and browsed. Terri talked to Ella and explained to her about the importance of a good pair of shoes. Based on the smiles, the Bun was receptive and was taking mental notes for later. And Ella wore her cute silver sandals and kicked her legs happily while roaming around in the stroller, looking up at the lights, and catching smiles in the full-length mirrors. All in all, a fun day for the girls!

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

Ella was in an “ok” place today. She was happy some of the time, but still had quite a few meltdowns.

Feeding therapy went pretty well. She still did not enjoy the process, but you can tell that she is getting better at self-soothing (calming herself down after she melts down and being ready for more therapy). Towards the end of the session, we took her out of her high chair. I have tried the past few days to do more touching around her lips, as I felt she would tolerate. That paid off towards the end of the feeding session today. As I was holding her and she was watching her video, she let me put some applesauce on her lips with my finger. Each time, it prompted her to move her lips up and down with the motion of eating, which is a sign that she knew the food was there. Also, she even slightly explored with her tongue a couple of times. For this next week, we are going to try feeding exercises twice per day and see if we can make some further progress.

Physical therapy went well too. Ella is getting so much stronger as she sits up. She’s even engaging toys and reaching across her midline for toys. We’re trying to get the feet flat on the ground when balancing her off our leg, having her lay on top of her arms in a midline position when she is on her belly, and place weight on her arms by leaning on them.

We’re so thankful that we have a great occupational therapist and physical therapist that really care about Ella. Amongst all the other stress in life, it is such a comfort to know that Ella has these two professionals that are dedicated to helping her take next steps.

My best friend decided to come and visit me. It is so nice to see her and get a hug! She is here for a few days and so we’re going to have a great time just hanging out…all the girls! While it was sunny this afternoon, all of us took a walk to get some fresh air. I still think my favorite part is watching Ella kick her legs in excitement and attempt to fling off her stylish sandals!

Looking forward to the time with the Bun and my girlfriend over the next few days and being thankful for all the blessings in life.

Psalm 62 (NLT)
I wait quietly before God,
for my victory comes from him.
He alone is my rock and my salvation,
my fortress where I will never be shaken.

Ella did not have any therapy sessions today, so I decided to take her on some errands. Once again, she enjoyed the car ride.

For the first time, I took her to the grocery store and placed her in the cart. I figured it was time to try since she is able to sit up. She did really good. As long as I was moving and not stationary for too long, she was good with the experience. Thankfully, it was a ghost town – – there might have been 4 people in the entire store. So, the risk was minimal but I think it was good for Ella. She has barely been exposed to the outside world. Doing normal things are good!

While we were shopping, there was an announcement, “Clean up, aisle 7!” Actually, that is not what I heard over the loud speaker. Although, it was still a little strange. The store manager made an announcement that they were going to be turning the lights down low for about 5 minutes while they tried to get a bird to vacate the store. So, Ella’s first time to the store included very dark aisles. In between, I tried to snap some pictures but there was so much going on that she was not interested in the camera.

This past weekend, it seems that Ella’s snotty nose finally went away. So basically, we were not having to wipe her nose every 5 minutes and following every sneeze. But, I still feel bad for her because she has a lot of congestion as a side effect of a medicine that she takes – Sildenafil. And then teething is still going strong, so she creates lots of extra saliva. In combination, it creates lots of retching while she is trying to manage all the secretions.

Since she had a cold, her oxygen requirements went up. And although she is congested from the Sildenafil, she is back to her baseline. And yet, it seems like the oxygen requirement has stayed higher. Her heart rate has been much improved since her SVC procedure, but it does seem like the oxygen requirement has crept up. This might mean that she is clotting near the stent and it is making the opening of the SVC less effective. Right after the procedure, her oxygen requirements went way down. But now, they are slowly getting higher again.

We have a pulmonology appointment on June 9th and we are scheduled to get another EKG and echocardiogram. Since the last test was inconclusive, they want to try again. And now that we think we are seeing some clinical signs, that is probably a good idea. It might be the SVC or maybe she does need more diuretic. It’s so hard to know. Our hope is that she will continue to go in the right direction, but only time will tell.

Psalm 40 (NLT)

I waited patiently for the Lord to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be amazed.
They will put their trust in the Lord…
…O Lord my God, you have performed many wonders for us.
Your plans for us are too numerous to list.
You have no equal.
If I tried to recite all your wonderful deeds,
I would never come to the end of them…
…I have told all your people about your justice.
I have not been afraid to speak out,
as you, O Lord, well know.
I have not kept the good news of your justice hidden in my heart;
I have talked about your faithfulness and saving power.
I have told everyone in the great assembly
of your unfailing love and faithfulness.
Lord, don’t hold back your tender mercies from me.
Let your unfailing love and faithfulness always protect me…
…may all who search for you
be filled with joy and gladness in you.

Ella had a fun day. We went to our favorite breakfast place and sat outside – it was warm and sunny. And Ella loves to people watch. You figure, she rarely gets to go into the real world since we try our best to keep her health from being compromised. But every once in a while, it is worth the risk. And being outside has less risk.

When we were done with our breakfast outing, we decided to stop and pick up gardening supplies. Once again, we could put her in the stroller and spend time outside while we shopped for flowers and other supplies.

We came home and got 90% of the gardening complete and then ran out of supplies! But that just gave us another excuse to go for a ride again. So, Ella had lots of time in the car today. She did great – I think she likes sitting up so high and watching the scenery. Plus, it is good reinforcement to go for a ride and not end up at the doctor’s office or the hospital.

As Sunday winds down, we are looking forward to starting a new week. Last week was rough and filled with many challenges. So much has happened recently that it is sometimes hard to realize the magnitude of the events. We’re hoping that this week is easier on the heart and mind.

On an ending note, another short poem that seemed appropriate in memory of our son.

Time spent with you
Was so very precious
Even if only for a very short time
I hold a special memory
Close inside this heart of mine
To me you were very special
Much more than words can say
I still love you now little angel
And I’ll remember you every day.
-Anonymous

Ella had a relaxing day. She played a lot with her Daddy this morning in her room with her books and toys. Also, we went on a short drive this afternoon as a family, just to get out of the house. She really enjoys being high up in her car seat and watching the scenery go by in the window.

I’m tired today. I think all of the week’s activities have caught up with me. My heart has been heavy the past few days for the nanny. It is strange to have someone that is in your life so often and living in your house, and then suddenly, no interaction at all. It stinks that our relationship had to end on a sour note. I just keep finding myself lifting her up in prayer, hopeful that she might seek counseling. I know that her heart is hurting so much over so many things these days.

I have not shared on the blog, but I decided to get my real estate license. I signed up for classes in February 2009, right after my full time job didn’t work out. I figured that since Ella was being taken care of by our nanny, it was a great timing for this opportunity. Almost right after I signed up, I found out that I was pregnant. As the morning sickness and exhaustion came on strong, studying was placed on the back burner. Long story short, I just passed the broker exam this morning! One more thing that was going on this week that is finally finished. It is a huge relief for me.

As I was driving to the testing center this morning, all of a sudden it hit me. These days, my emotions seem to get the best of me when I am alone and in the car. I started to think about everything that has happened this week, especially the birth of our son. But I had a nice, long cry and it felt good to get it out. I’m sure that there will be many more occasions in the coming days as I process what has happened and remember.

Remembering

Go ahead and mention my child,
The one that died, you know.
Don’t worry about hurting me further.
The depth of my pain doesn’t show.
Don’t worry about making me cry.
I’m already crying inside.
Help me to heal by releasing the tears that I try to hide.
I’m hurt when you just keep silent,
Pretending he didn’t exist.
I’d rather you mention my child,
Knowing that he has been missed.
You asked me how I was doing.
I say “pretty good” or “fine”.
But healing is something ongoing
I feel it will take a lifetime.
~ Elizabeth Dent ~