Finding "Normal"

After the addition of a new baby to a family, I think it is common to let a few things go as you adjust to your new life. You may get to-go food a few too many nights a week...(try 7) Or you may let the laundry pile turn into a mountain. You may let yourself off the hook for some social obligations. Your older child(ren) may watch more TV than you previously thought was acceptable. Whatever the case may be, for about 6 to 12 weeks post new baby, something's gotta give as you adjust to this new precious addition to your family. So you look around and you see your new (and old) chaos, but it just doesn't matter anymore. And all you really need to do is enjoy your baby and get sleep when you can because the dishes can wait. Life is in limbo, but you know that new routines will be established, you will sleep again, and everyone will adjust.

Well, we have been living in that newborn limbo for 13 months. I am not too proud to admit that over a year later, there are still bottles filling the sink (or the counters, if they made it that far), the theme song to Mickey Mouse Clubhouse plays a few too many times, and wrappers from last night's burgers in the trashcan. When I was pregnant with Baby B, I had grand plans of what our day would look like and how I would juggle special time with each boy. I had ideas of lining up nap/rest times and bedtimes. The adjustment has taken quite a bit longer than I had anticipated, and I still find that I am allowing myself off the hook for typical daily responsibilities with the disclaimer that "Well, it's like I still have a new baby on 7 feedings a day."

And then I woke up the other day...errr, dragged myself out of bed when I was being summoned...and realized that it is time. It is time to establish some kind of a new normal even amoungst the bottle feedings and appointments. It is time to realize that this is exactly where God has me. This is the job that he has blessed me with, and it is a very special one for which I am so grateful.

A couple weeks ago, I was studying Bible verses on courage. I often pray courage for my family. And I came across this verse from 1 Chronicles 28:

David also said to Solomon his son, "Be strong and courageous, and do the work. Do not be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you until all the work for the service of the temple of the Lord is finished..."

My eyes and my heart just focused in on David's instruction to his son to "do the work," not just once, but twice in this chapter. Do not let the fear of the size of the task be too overwhelming because God is with you. Don't be discouraged that you are an exhausted mother. Keep going, do the work. Don't be afraid of the unknown. Keep going because He is with you and He will not leave you...even in what seems to be too big of a job. Remember, He will not fail you. Earlier in verse 10, David is telling Solomon, "Consider now, for the Lord has chosen you to build a house as the sactuary. Be strong and do the work."

Be strong and do the work.

So I have a choice to make. A) I can continue to love and nurture my children in a sort of "survival" mode (i.e. too much TV & not enough reading, too many take out or frozen meals, crawling out of bed when they wake up, leaving chores for another day...) OR B) I can continue to love and nurture my children in a "He's Got This and I can do the work" mode. Regardless, the love and nurture is always there, and regardless, there will always be days when it is okay to leave the dishes in the sink. But it's just how I get through the day to day. I have just felt like it is time to be more intentional, be strong, and do the work...even in this sleep deprived state.

I choose option B. Do the work that God has given me to do today, each day. I will probably still have hard days...days where it all feels like too much. Days that I long to "fix" my child's health. Days where dinner might not get done. And that will be OK. Don't expect to see a spotless house if you come visit...But I am tired of living in this "post new baby" state of mind. (My hair is tired of being here, too.) It is time to find some kind of new normal and do the work...whatever that work might be each day. And be grateful that I have such precious work to do!

December 8

Beckett's surgical biopsy is tentatively set for December 8 in Cincinnati. We are looking forward to getting their opinion (and hopefully some answers) regarding Beckett's digestive problems. They are working to schedule the other testing around this date, and the week of bowel management will follow the surgery. We are excited at the possibility of answers and solutions, but I think with that excitement comes some nerves. It is easy to get side-tracked by the negative questions running through my head...What if they cannot figure it out? What if there is nothing they can do about it either? What if we just have to continue on this schedule of bottle feeding formula indefinitely? But, then I stop myself...or at least attempt to. I know that worrying about what will happen does not help anything. There is no productivity in worry. In fact, worry just eats away at you and makes everything harder, so I am working to choose not to worry. Not always easy...but worry is sin. It is a sin that so easily creeps in and takes a hold of our hearts. It has always been a struggle for me. I can so easily be caught in the grip of worry. It is one of Satan's attempts to "devour" me. But I refuse to give Satan that power and live in constant worry. I want to place all my trust in God and remind myself constantly that He is in control. He is bigger than all of this. He is bigger than tests and doctors and answers. He is our Creator and the one who holds us all. So I daily..hourly...work to push worry out and give it all to God. I am so thankful for a God who cares for us and loves us. We are very hopeful that this trip will bring us new options for Beckett. This hospital is number one in the country for pediatric gastroenterology after all! We are praying for solutions. I know that regardless of the outcome of our trip to Cincinnati, our God, the same God who created the sun, moon, and stars, is taking care of my sweet Beckett and our family. And He always will.

1 Peter 5:7-11
Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power forever and ever. Amen.

Our Little Pumpkins

This weekend we finally did it! We took pictures in a pumpkin patch! Beckett really enjoyed the pumpkins and playing in the dirt. We probably could have left him sitting there for at least a half an hour, and he would have been very content! Brant, on the other hand, was not a big fan of the idea of our fall photo shoot. We did, however, manage to get a few smiles out of him, and I think he really did have fun!

Happy Fall Everyone!

A Very Suessy Birthday!

Well, better late than never! I am finally posted pictures from Beckett's big day! Kyle and I thought that a Dr. Seuss theme would be just perfect for our little man because it is fun and bright and whimsical (Kyle's words, not mine...Ha!) And because he reminds us of a precious little "who" straight out of Whoville with his big round eyes and sweet curls of hair around his face. We had fun preparing for little man's big day! It was a such a huge milestone, and we were so thankful to be able to celebrate with our family and friends! The day started out with Brant eagerly making "special" cupcakes for Beckett. He was so excited to make his little brother a pretend treat. Aren't those little hard-working hands precious?

Brant was more excited about Beckett's birthday than Beckett was! He ran into his room singing "Happy Birthday" that morning. Followed immediately by the statement that Beckett was now a big boy and could play with him. Then he asked, "So can Beckett walk now?" He also noticed that "Beckett is one now, but he is still pretty tiny." He is a very loving brother, and he is so eager to teach his little brother all kinds of new things!

The Birthday Boy!

I decided to attempt to get crafty for Beckett's party. It was actually a lot of fun. I made the banner from scrapbook paper and polka dot ribbons. We bought the Dr. Seuss book, Happy Birthday to You!, and had all the guests sign it for Beckett.

More craftiness...I made this door wreath from a cut-up Dr. Seuss board book. I had wanted to hang a B from the middle, but I ran out of time. :) I plan on adding that later, and hanging this on his door. You could really make one of these wreaths to fit nearly any child's party theme as long as you can find a fitting book. I plan on making one for Christmas. I'll let you know how it goes.

Brant loves cake!

Sweet Beckett!

Beckett absolutely loved his toy cake! Because he could not eat any real cake, I searched very hard to find this toy cake for him. It was perfect. His face lit up when he realized everyone in the room was singing to him. It was priceless.

It was a wonderful day. I am so very thankful for our little boy! Yay, ONE!!!

Thank you for all of your prayers for our sweet Beckett and our family over the past year. We are so thankful for them. We know God is at work in our lives. We know he has a perfect plan for Beckett and Brant and our family. As it says above Beckett's bed:

'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.' Jeremiah 29:11

We trust in God's plan. Thanks for praying.

Strong Enough

This song feels like my theme song for the year. It has been a big year for our family, and there have been days where we definitely don't feel strong enough to handle all of the changes and difficulties that we have faced. And we are so thankful that we don't have to be, nor are we expected to be, strong enough on our own. God's got this, and He is strong enough for all of us. Thank you, powerful God!

Strong Enough
Matthew West


You must, You must think I'm strong
To give me what I'm going through
Well, forgive me, forgive me if I'm wrong
But this looks like more than I can do on my own

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up, I'm not strong enough

Hands of mercy, won't You cover me?
Lord, right now I'm asking You to be
Strong enough, strong enough
For the both of us, yeah

Well maybe, maybe that's the point
To reach the point of giving up
'Cause when I'm finally, finally at rock bottom
Well, that's when I start looking up and reaching out

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up, I'm not strong enough

Hands of mercy, won't You cover me?
Lord, right now I'm asking You to be
Strong enough, strong enough

'Cause I'm broken, down to nothing
But I'm still holding on to the one thing
You are God and You are strong
When I am weak

I can do all things
Through Christ who gives me strength
I don't have to be strong enough
Strong enough

I can do all things
Through Christ who gives me strength
And I don't have to be strong enough
Strong enough, oh, yeah

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up, I'm not strong enough

Hands of mercy, won't You cover me?
Lord, right now I'm asking You to be
Strong enough, strong enough
Strong enough

Day 2

We are still here, and we will probably be here for at least 3 more days. Thankfully, day 2 is going significantly smoother than day 1.

After some slight mishaps, we arrived Thursday night at 9:00 pm. They took 15 mls of blood at 11:00 pm. And at 1:30, baby boy finally gave up and went to bed. He slept until about 4:00, and he was up and at 'em again. I finally got him back to sleep at 5:30 and he woke up at 7:00. That equals 4 hours of sleep All. Night. Long. Yesterday morning, I was thinking that if this continues for the duration of our stay, we will all be very miserable by the time he was released! I do not know how a one year old baby can possibly function on that little sleep, but apparently, he can! As a person who greatly values sleep, it is very difficult for me to understand. Anyways, I got him to take a nap yesterday afternoon for about an hour. And then, due to testing, he was required to stay up until 9:30 pm for yet another poke. I am not sure why they insist on doing this at such odd hours, but they do. I am so thankful to report that he went to bed at 10 pm last night- a huge improvement! I had to wake him up at midnight for another feeding and meds, and then he slept until 5:00, woke to eat, then back to bed until 8 am!! And no one disturbed us! So it was a MUCH better night. Thank you for all the prayers for sleep. God answered with a big YES!

He has had hs blood drawn several times since our arrival. His blood work from Thursday night shows that his TSH is high. This is a thyroid test result that indicates hypothyroidism. However, his active T4 was normal, so he does not actually have hypothyroidism YET. Apparently, he is headed that direction. They ran a thyroid antibody test yesterday to see if it is autoimmune related. We won't get those result back until Monday. However, they do not believe this to be the cause of his FTT because his thyroid has been followed over the last year, and this is the first sign of a problem. Yet, he has been having problems growing all along. So, they do not feel they can blame his thyroid for his lack of growth. His blood test also showed slightly low blood sugar..interesting in a kid who eats every three hours all day long and had just eaten half an hour before the blood draw.

He is now taking in 1250 calories a day!! His bottles have been increased to a whopping 35 calories per ounce! The good news is that he gained some weight! It is odd though that it takes such a huge amount of calories for him to grow. Most babies his age need 45-50 calories per pound. He is up to 75 calories per pound. Maybe he just has a super fast metabolism!?!

Our main purpose for being here right now is to monitor how many calories he is eating, collect all stool samples, collect a lot of blood, and weigh him for three days. After they get a good idea of his caloric intake and growth, along with all the test results, they will try to figure out what needs to be done for him to grow or why he is not growing normally.

Please pray that the doctors watching him would be careful and wise. Pray that a good new game plan would be in the works, and not just more of the same. I am hoping something will be accomplished during this hospital stay to lead towards a more typical lifestyle for Beckett as a one year old. I really want this to be our turn around moment. I really want to know why it takes so much for my baby to grow. Pray for peace while we wait as We are anxious for answers. Please also pray for continued sleep because it makes this all much more tolerable for all of us! Also, please continue to keep big brother in your prayers!

Thank you for your prayers and encouragement! We are so thankful!

"Come to me all you who are weary and heavy-burdened, and I will give you rest." Matthew 11:28

Back to the hospital

Well, here we are, it is a year later, and we are headed back to the hospital. Last October, was when our Beckett's health journey began. How surreal to be in the same place a year later.

We had an appointment with our nurse practitioner at TCH yesterday, and after looking at his growth curves, she called the doctor to come see us. Because both his weight and height have leveled off over the last few months, they feel it is time for more testing and observation. He has gained weight, but it just is not as much as typical. His height has not increased much at all since June. At one point his height was in the 50th percentile and it has steadily dropped. While is weight and height are not on the charts, the good news is that his head has maintained it's curve at the 85th percentile! Ha! I took my sweet baby to try on one year old birthday hats, and none of them fit him. They were all to small! Oh, the irony...

Beckett will be admitted to Texas Children's on Thursday, and they will begin running more tests Friday morning...and with the way things work at hospitals, I am sure it will be bright and early! Uggg...because I am not a morning person. They are going to re-run many of the tests that we have done in the past to make sure nothing was missed. They are also going to do some new tests including one that will test how many calories his body burns in a day. That should be interesting. I have no idea how on earth that works, but I will be sure to let you know once I learn more about it. I am quite curious about that test. They will also count every calorie that goes in, and test everything that comes out for things such as malabsorption. This has been checked in the past, but they think it is worthwhile to collect all of his stool for at least 72 hours to make sure nothing is missed. The return of the feeding tube is a possibility, but they do not know how helpful that will be considering input is not a problem for Beckett. He does take a good amount of formula a day, about 1050 calories. This is significantly more calories than a baby his size should need to grow. As far as genetics go, his chromosome testing was all normal. So that is not an explanation for his small size. I will try my best to keep you updated throughout the process over the next few days.

Please be praying for Beckett and our family during this admission. Our prayer right now is for answers...answers that would lead to healing...healing that might land us in Italy. Please pray for emotional and physical endurance as we are all quite exhausted. Pray for wisdom and attention to detail for the doctors as they continue trying to figure out pieces to the puzzle. Please pray that just the right test would be ordered that would find exactly what we need to know about Beckett's little body. I spoke with the geneticist yesterday, and she said it is like looking for a needle in a haystack. Even picking each test can be difficult. Please pray for Beckett's body as it is subjected to more poking and testing. And sleep...please pray that my difficult sleeper would sleep in the hospital. Honestly, I am quite concerned about this as Beckett is very particular about his sleep. And he is very hit or miss...so prayers for sleep would be much appreciated. And our Brant, please be praying for him. Pray that he does not feel lost in all of this. Pray that he does not feel too anxious or worried as he is a very empathetic 4 year old. Please pray that Kyle and I will know how to balance Brant's needs with Beckett's needs.

Also, a quick update on Cincinnati- about two weeks ago, they decided they wanted Beckett's actual pathology slides sent to them for their own pathologists to look at. So after signing lots of paperwork, TCH sent the pathology slides and CCHMC received them last week. We are now waiting for the pathologist to look over the slides, and then we hope to hear the plan from the doctor there.

And in other unrelated news, Brant's new school year has been off to a great start. We are so thankful that he seems to really be enjoying school. He tells us that his "teachers make him happy." He willingly jumps out of the car in the drop off line (yes, I love it!) and walks into school with his backpack like a big boy. He has made some new friends, and I know it has been a positive experience. What a blessing and a praise! It is so wonderful to feel like he has a fun, predictable place to go while things at home are a bit chaotic. We are thankful!

Thanks again for your prayers! Praying for answers and healing during this week. Thankful for our God who is holding us in his hands during all of this testing. Thankful that God is BIGGER than this! I am so thankful that my help comes from our Lord the Creator who never sleeps.

I lift up my eyes to the hills--

where does my help come from?

My help comes from the Lord,

the Maker of heaven and earth.

He will not let your foot slip-

he who watches over you will not slumber;

indeed he who watches over Isereal

will neither slumber nor sleep.

Psalm 121:1-4