Wednesday, December 30, 2009
Now for some play time with those other kiddos of mine that keep me laughing...!
Friday, December 18, 2009
Thank You, thank You, thank You, Lord!!! I was so grieved by the possibility that there could be 3 diseases in that 1 tiny little body. God, I know You would have sustained us and given us the grace and strength to handle this and everything it would have meant for Judah; but I am so thankful that in Your sovereignty You have allowed Judah to live without this sickness.
To God be the Gory!
Thursday, December 17, 2009
The plastic surgeon's PA - the only one to give me good news...mostly. Judah's healing well from the surgery, and all his stitches have been removed. We just have to go back one more time to double check the incision on his left hand, because it's healing more slowly.
The endocrinologist - I don't even want to revisit this one. Adrenal Hypoplasia a possibility. Growth hormone injections a big possibility. Testosterone injections a possibility. A dysfunctional hypothalamus. Those are the "highlights".
The lab - Judah just happens to be as tough of a stick for draws as possible. The lab techs are really good, but only once has he had to be stuck just once. This time was no different. Check both arms, trying to find a vein for several minutes, stick one arm twice to try to get a draw, then stick his heel - twice - to get an obnoxious amount of blood for all the tests the endocrinologist needs to run.
Therapy - a definite highlight in the midst of all the doctor stuff. I love the 3 ladies that work with us. They oh and ah over Judah, making a big deal over the slightest bit of improvement! They encourage me in what I'm doing, and teach me new ways to help Judah. Just when I start feeling really discouraged about how far behind Judah is, these ladies come and by their attitudes and acceptance of Judah remind me that he's doing great for him, and that's all that matters. He's not any other baby. He's Judah, and he's doing just what he should be.
The pediatrician - 2 visits in 2 weeks. 11 lb. 2 oz., and 11 lb. 4 oz. nine days later. (I didn't mention to the nurse that he had a wet diaper.) Judah is bordering on "failure to thrive". That sounds so ridiculous to me because he's so happy and content. But he's not really growing. The current plan of action for the next month is to give him as much breast milk and solids as he'll take, and hopefully he'll gain a pound. If not, then the next step is to add a calorie booster of sorts to my milk. I'm praying that by that point he will have started growth hormone replacement therapy and will improve overall in weight and length. Even if we do have to add something to my milk, that's better than jumping right back to the NG tube. Not a possibility I'm a fan of...obviously.
The vision specialist - I forgot. I did get a bit of good news from him. And, actually, I like going to this doctor. He is gentle and kind and a gentleman. He shows a genuine interest in and concern for Judah beyond his vision problems. He's respectful to me and treats Judah with dignity. If I could, I would ask him to be my grandpa. (I miss having one.) Anyway, Judah continues to show some signs of improvement in the vertical movement of his eyes, and in his almost lazy eye. (It's not official that it is.) The patch is helping, so we'll keep up with that, 2 hours a day, for the next 6 weeks until we go back. The muscle weakness in that same eye is the same. The next course of treatment sometime in the not too distant future is an injection of Botox in the muscle to relax it, allowing his eye to freely and easily move to the center. Not sure how long that lasts, or how many injections there might be over time, but this treatment could help in preventing eye muscle surgery in the future.
Ok, so it that's not enough to process, I've been dealing with feelings of guilt lately, too. About almost everything. Not being a good friend to those around me. Not being adequate for Judah, i.e. not giving him the time in therapy that he needs, not being able to breastfeed him (that's a huge one that I refuse to talk about and deal with - still too painful). Not being the wife that Jared needs. The biggest guilt trip I've been on is because of my total failure in taking care of my family the way that I think I should be. Of course Jared has completely let me off the hook; he's been beyond gracious, understanding, and compassionate. My feelings remain, though. I feel like a disaster, a failure, an overwhelmed, not at all put together, disorganized, frazzled, tired, scatter-brained mess! We've had a hard couple of weeks. It's not always like this, and I know next week will be better. We're in a down phase or something. I just wish that knowing that made me feel better. I want to be handling all of this so much better. I want to be so way ahead of where I am. I want to be Super Mom! Although I'm beginning to wonder if she really exists.
On top of all of those feelings, I'm struggling to deal with the realities of Judah's pituitary disease, Panhypopituitarism. It's so...hidden and mysterious and complex and horrible. I don't understand it, and I can't keep up with it. I hate it. I hate that it effects every single aspect of my darling boy's little body. And I can't do a single thing about it. I'm helpless.
So, God hasn't really changed anything for me since the other day when I was feeling so weary of all of this. Who am I kidding? I still feel that way. No miracle healing or drug or good news. However, even though nothing has changed for us, I know that the same is true of Him; and that's comforting. He's the same. He's still all those things that I choose to believe are true. Everything His Word says about Him. He seems silent and far off right now. But I know He hasn't moved. He's still there, pursuing me and loving me...and Judah. He's with us at every appointment. There is peace in knowing these things. Hmmm, I really do miss my grandpa right now. I haven't missed him like this in years. He would've had a lot to say about God's goodness and faithfulness in regard to Judah. And he would have prayed like nobody else. I can only imagine how many times Judah's name (and mine) would have showed up in his prayer journals. Well now I miss Grandma. She's been gone for 20+ years, but I can picture her in my mind so clearly. She would have loooved Judah. All my kids, but there would have been a tenderness reserved for him I think.
Ezra's waiting to play the animal game. He's been more patient than any reasonable 4 1/2 yr old. And the pump awaits. Boo.
Tuesday, December 15, 2009
4 medications in the morning...
1 in the afternoon...
2 at night...
5 doctor appointments or trips to the lab in 4 days last week...
3 doctor appointments plus therapy in 2 days this week...
I'm just tired of it all. I'm tired. God, I'm tired...and I want You to stop this. Just make it stop. It would be nothing for You to heal Judah. Just think it and it's done. Would healing Judah really alter some grand cosmic plan? Wouldn't it be worth it? You see him. You see how sick he is inside. I believe that it hurts You to see him hurt. So, just stop the hurt!
This is me today. Weary.
Tuesday, December 8, 2009
Monday, December 7, 2009
Wednesday, December 2, 2009
It's funny how each of my other kiddos have handled the last 30 hours or so. Praise the Lord for grandparents!! They saved my day by taking care of the kids while Jared & I were gone all day yesterday. And they were busy! Grandma & Lydia cleaned house (happy day), Gramps & Ezra played several games and put a puzzle together, lunch at McDonald's (of course), play time at 2 different play grounds (definitely a grandparent thing), craft time with Grandma, supper, and the evening & bedtime with Daddy. Ezra got a little sad when I said good night to him on the phone. Eli was already half asleep. And I'm pretty sure Lydia was more concerned about hearing a story than saying goodnight to Mommy! The fun (and funny) happened when we came home!
Eli: Eli actually got to come to the hospital with Daddy to come get us. [The surgeon rounded on Judah at 6:30 this morning, so we were all ready to go by 7:45!!] So, Jared & Eli picked us up "on the way" to school. Eli's whole face lit up as soon as he walked into Judah's room. He smiled ear to ear and came right over to me & Judah (who was in the sling). To his credit, Eli did give me a hug before he very gently & quietly oohed and aahed over his baby brother:) He was so proud to be a part of getting Judah out of the hospital. And he loooved that he got to sit by him in the backseat of Dad's car! The best part: when I took Judah out of the sling by the car, I let Eli get a good look at him before I put him in his car seat, and Judah gave him his first post-op smile! I found out later that yesterday Eli came home from school with a picture of Judah that his teacher (I think) had printed off the computer. He got to show his class the picture and they all prayed for Judah right away that morning. Now he's excited to take a picture of Judah so he can show his class what he looks like after his surgery! [By the way, anyone looking for the best Christian school around, I know where it it!!]
Ezra: My Little Man came to see us as soon as we walked in the door, but it was just for a quick "hello", and then he went back to whatever it was he was doing. However, later on he came to see me. He told me he had missed me. A few minutes later he wanted to do a puzzle with me. I needed to sit down at the table & pump, but told him I would love to do a puzzle with him there at the table. Grandpa offered to do it with him, because he had so much fun doing one with him yesterday. But Ezra looked at me and said, very sweetly and matter-of-factly, "I want to do a puzzle with you because I need to have some attention with you. I didn't see you all day! I need some attention with you!" I love that he was able to articulate that need so well. And it was just so darn cute!
Lydia: This little mommy completely disregarded her mommy! I walked in with Judah and she came running. "Where's Judah?" I picked her up to give her some lovins and tell her I missed her. All I got was "I missed Judah too!" She said "I love Judah so much" about 4 times over the next minute. I know she missed me, but she sure has a funny way of showing it;) She's been very careful & gentle with him, and has been very eager to help with any little thing!
We're all glad to be home together again. We're having a pretty quiet day. Judah's sleeping a lot. I've done a puzzle, played a game, cuddled. It's been nice. I can't wait for my bed tonight!!
Tuesday, December 1, 2009
In his room with his new friend
I don't know what this recovery process will look like for Judah. I know it will be painful for him, and so for me, too; but I'm leaning on the Everlasting Arms to walk us through this stretch of road on Judah's journey, as He has each step of the way.GOD. IS. GOOD.
Now we just finished up with Judah's surgical nurse. She said he's in recovery and doing well so far. 30-45 minutes and he'll be in my arms. I can't wait! Seriously, I'm dying here. I have butterflies. I'm just so excited to see him! What a relief to know that it's over and he's done well. Thank You, Jesus!!!
Dr. B. let us know during his update that as long as Judah is handling clear liquids well he should be able to go home tomorrow. He'll come see Judah in the morning. Clear liquids for about 24 hours and then back to Mommy's special Judah-only brew:)
I'm very thankful for this amazing hospital and the staff to match. They are really incredible, and again I thank Jesus for putting us here in the heart of Omaha. And of course I thank Him for Judah...always.
Let the countdown to that first wonderful face-to-face begin!!
At 8:30 Dr. B. (the plastic surgeon) came out and gave us a great report...with a twist. He said his part with Judah's lip & fingers went very well, and his lip turned out beautifully. But the doctor who was going to do his tubes didn't show. A miscommunication between the different offices regarding scheduling, etc. Bummer. Things like this happen. I believe that God is in control, and that there is a reason. However, I am not looking forward to having to put Judah through all of this again just for a 2 minute procedure. Gr. BUT GOD...
God is funny. Not always funny ha-ha...but just funny. No sooner had Dr. B. left, than Judah's surgical nurse came to touch base with us again. She said just as they were going to be turning off everything to take Judah to recovery the other surgeon called and said he was on his way! Talk about being "in the nick of time". Still not sure where the miscommunication came in, but regardless of his schedule today, Dr. K. is on his way to put the tubes in Judah's ears. And the timing of his call was such that they could just keep Judah sleeping, waiting for him to get here. Thank You, Lord. You're amazing.
I can't wait to see Judah.....
All day yesterday I just wanted to stare at Judah. See every face he makes, or made, hold his hands. I was trying to prepare myself to let go, and yet I couldn't imagine actually doing it. As the day wore on I felt slowly but increasingly more desperate to remember every tiny feature, every face he could possibly make. It was only by the grace of God that I got a good night's sleep. I also praise the Lord that Judah woke up at the perfect time to eat his "last meal" before surgery. Another evidence to me that God truly is into details.
This morning I hated to wake him up. He was sleeping so peacefully. Oh, that little face. I had to give him a bath, making sure that his hands were especially clean. Then cuddles and kisses, and a time of prayer with Daddy, too, before it was time to buckle him in his car seat. As silly as this might sound, I've had this "this is the last time..." mentality for the last 12 hours. The last time I'll see that face, or that smile, or kiss those fingers.
We got here and all checked in. Judah slept through the first half of our wait in the CARES unit, and then woke up smiling, charming his nurse. I'm so thankful for the time we had with him awake. We took some video, some pictures; just enjoyed his smiles and sweet face to the fullest. A little after 6 he started getting hungry and fussy. I put him in the sling, and after several minutes he was sleeping again. I'm thankful for those last several minutes with him in the sling. Holding him close, kissing him, smelling him, whispering to him. Finally, they came to take him. Thank You, Jesus, for giving Judah that deep sleep. I put him on the bed asleep, covered him with a warm blanket, and kissed him one last time. Then they wheeled him away, still sleeping. Oblivion is a beautiful thing sometimes.
Now we wait to see that new beautiful face.....
Tuesday, November 24, 2009
Thankfully, we've been in a kind of "no news is good news" phase these last few weeks. We're all remaining pretty healthy; just the "required" Fall cold. Judah continues to make progress in his therapy. We're enjoying his smiles and sweet nature immensely, and gearing ourselves up emotionally and mentally for his surgery. The other 3 kids are doing great all around. Well, Lydia does have that required cold right now. The saddest part about that for her? She can't hug, hold, or kiss Judah. She is, however, allowed to kiss his toes. He's got the best loved "li'l tosies" known to man:) Jared's officially in the busy season for YFC, which won't end until March. Boo. Thank the Lord there are 3 holidays & 3 birthdays to look forward to in the midst of this time! God continues to teach me. Life with 4 kids offers an infinite supply of spiritual life lessons...and just plain old lessons! Here are just a few things I've learned from my life with 4...
*There's never - and I mean NEVER - a dull moment! Of course that makes sense when they're awake. But even when they're sleeping, there's always something to be done. My job security as a stay-at-home mom is sound. (Speaking of job security... I tease Jared about my "job security" as his wife. I know he'll never leave me, because there's no way he could ever afford child support! His response: "Seriously!")
*If you get behind on laundry, it's all over. Good luck finding your way out from under the mounds of clothes that seem to multiply exponentially. These mounds are also experts had hiding things; including, but not limited to, shoes, belts, toys, and even small children.
*When every child is whining and/or crying at the same time, DON'T PANIC! Life as you know it will not come to an end simply because the 4 & 7 year olds have to wait a bit...regardless of how many times they insist that this is the worst day they've ever had or that it's not fair. Most successful remedy for this occurrence: offer a healthy snack and a game. And "time in" in the sling works like a charm for the baby, but is also equally effective for the tired, crabby 2 1/2 year old.
NOTE: as a rule, yelling "STOP YELLING" at your yelling children doesn't work.
*Accept any help offered, and even learn to ask for it. Pride has no place in the life of a mother who spends her days wiping noses and butts, and other various household surfaces.
*Accept early the fact that your house will never look the same again, and get over it. Some clutter can be considered an art form, the refrigerator becomes a beautiful art gallery, and art on the walls and table top can't stand up to the Magic Eraser, so don't stress out.
*Stay away from WAL-MART. It eats mothers with young children alive.
*Enjoy the moments you get with each individual child. They're too few and far between.
*These are the longest days and the shortest years of your life. It's tough, but I believe that I'll never look back and wish I didn't have so many kids. I'll look back and be humbled by the evidences of God's undeserved grace and goodness in my life, manifested by these 4 little monkeys.
*God's grace really is sufficient for me. His mercies really are new every morning. He really is present with me as I go through the day, washing, wiping, and sometimes weeping. And He really has called me to the most fulfilling, rewarding, challenging, and beautiful "job" possible: that of being Mom to Elijah, Ezra, Lydia, & Judah. (Even though I'm already going gray!)
Friday, November 13, 2009
"My Baby Brother"
My baby brother is very cute! He is four months old. He has a little old man face. He has very chuby arms & legs. He is our little lion of Judah. Because Jesus was the Lion of Judah. I can make Judah laugh! I make him laugh when he is in his bouncy seat. When he is in his bouncy seat me and my brother walk or jump over him and his bouncy seat. He just cracks up! We got it on video. And my mom and dad just crack up. It is so cute. I wish you were there. It was so funny.
Need I say more...?
Wednesday, November 11, 2009
And in other news... Judah is cutting his first tooth! This might sound odd, but in the midst of everything that makes Judah so "special" I forget that he's going to do normal things like teethe! I couldn't believe it when I saw that little mound in his mouth. I found it the day before it started cutting. He didn't fuss like he was teething or anything! All of a sudden there was just a tooth there! He really is the world's most laid back champ of a baby:)
Today I got a great laugh. A good friend stopped by for a bit and gave me a card. I have never been given a card that was so appropriate or so stinkin' funny! Seriously, this is the best card I have ever been given. And any other mom who has ever pumped would say the same. The front of the card has a drawing of a mommish-looking woman on the front, and she says "Whoever said 'there's no use crying over spilled milk' obviously NEVER pumped six ounces, then accidentally dumped it." Oh my word, I'm laughing now! Of course, I freak out over spilling 6 ml, much less 6 oz., but still.
Tuesday, November 10, 2009
Saturday, November 7, 2009
Judah's surgery date is Dec. 1. I'm thankful that it's a little farther down the road, and in between the holidays. (I have more time to try to memorize his smile and he'll be just a little bit bigger.) His surgery was a little trickier to schedule, because this little "high profile" champ requires 3 surgeons to be there! Each procedure has its own surgeon so... It'll be a big day for him, and us.
My biggest prayer for Judah in this is that his stay in the hospital will be just the customary 24 hrs. I'm praying that his other illnesses will (miraculously) not effect his recovery or ability to bounce back from the procedures. I'm praying for an easy 3 week recovery process for him. I'm praying that Jared and I will be a testimony to the staff we come into contact with at the hospital during his stay.
Thanks for praying with us.
GOD. IS. GOOD.
Wednesday, November 4, 2009
Monday, November 2, 2009
Tuesday, October 20, 2009
Saturday, October 17, 2009
When all is said and done, I just had no idea that the combination of these 2 diseases - Hypopituitarism & Chronic Kidney Disease - would be so complicated and so involved! A tiny little gland in the middle of your brain, the pituitary, directly or indirectly effects pretty much every other part of your body. And obviously your kidneys are pretty darn important, too. I just didn't know. BUT GOD... God knew. God knows. He knows the inner workings of Judah's body intimately and perfectly. He designed Judah. And just the other day, as I was looking at Judah, God hit me with this truth afresh: God created Judah for His pleasure, His glory. He sees Judah in a way that I can't. He sees him whole and well, the way that Judah one day will be. And he sees beauty in Judah right now. Judah is beautiful. It's a weird dichotomy that I now live with on a daily basis: I pray for healing, and mourn the fact that Judah has a difficult, challenging life ahead of him...but I wouldn't change him for the world. He's my precious, darling boy.
I'm so thankful that on a day-to-day basis Judah is healthy. He's not constantly battling for his life. He's not sick. He's happy and content. I thank God every day for him.
Monday, October 12, 2009
Thursday, October 8, 2009
Tuesday, October 6, 2009
"...so that there may be no division in the body, but that the members may have the same care for one another. And if one of member suffers, all the members suffer with it; if one member is honored, all the members rejoice with it." 1 Crointhians 12:25-26
Monday, October 5, 2009
Monday, September 28, 2009
Thank You, Lord, for giving me joy.....
Friday, September 25, 2009
I remember when our doctor thought that Judah might have Trisomy 18, and we were facing the possibility of losing him. At that point, I didn't care what kinds of disabilities or special needs he might have, as long as I could bring him home. I just wanted Judah. The day we found out that his chromosomes were normal, I felt like I could fly. Like a literal huge weight had been lifted off my shoulders. That day I wasn't grieving...it wasn't even a tiny blip on the radar. And I don't think I could have even guessed how hard the grief would hit me later. But here I am, with my beautiful, charming, darling boy, grieving. I don't grieve over Judah, or because of Judah. He's such a priceless gift! Such a treasure! I grieve over what I have lost, and what Judah has lost and will have to face. I lost the dream of a normal delivery and a healthy baby that could be with me. I lost the dream of a breastfeeding relationship. I'm still working on that one, but it will never be what it was with my other 3. Judah has lost a normal childhood, and I have lost the dream of that for him. I hate that he is facing a life with pain and disease and hospitalizations and surgeries and medications and doctors and other possible handicaps that we're not sure of yet. It's a fine line of grieving; mourning the circumstances surrounding this little person, not mourning the person.
The grief hits me at times that seem so wrong. My brother & sister-in-law are having a baby. A little girl. I rejoice with them, and I'm so excited! Another niece for me, another girl cousin for Lydia. I pray for her and love her already. They had their 20 week ultrasound yesterday. What a privilege for them to be able to see her, and also to be able to share the news that she's healthy! But in the midst of all of this happy news, I grieve all over again. I relive our 20 week ultrasound with Judah. The rest of my pregnancy. His birth and that time of separation. It hits me, and it's fresh all over again. It makes this time that should be nothing but joyous, bittersweet. I wonder, then, if parts of life will always be bittersweet. Will I always be contending with this grief; always experiencing sorrow in the midst of my joy? How frustrating is that? I don't want that. So, the question becomes, how do I find joy, real joy, that is alive and fresh and independent of my circumstances? Intellectually I know that my joy can't come from my circumstances or surroundings. I know that it comes from Christ. That's what I want. I want joy, not grief. Ecclesiastes says there is a time for dancing, too. Someday, I hope that God will help me to set aside my grief and experience true joy, dancing! Without even a hint of bittersweet. This side of Heaven.
Tuesday, September 22, 2009
Judah's consult went well. I'm extremely confident in his surgeon's skills and expertise. He's also just a very nice man:) The consult went quickly, and all of a sudden we were to the "do you have any questions" part. I stumbled over my words a little, because I just wasn't ready for that so suddenly. Jared looked at me and repeated the question. Now that I think about it, it's kind of comical! Anyway, all I had to ask was if he had researched breastfeeding after a cleft repair. In a nutshell, he told me that it's ultimately my decision, and then laid out the reasons that he doesn't recommend it. That was it. No case-presenting or respectful arguing...nothing! And boy was I relieved! Now, we go from there. Continuing to pray. Taking what he said into consideration, doing some more research. More praying. And in the end do what we both believe to be God's best for Judah. We had one other answer to prayer come about during the meeting. We had been hoping to put off Judah's surgery until at least November. It just so happens that pre-approval from the insurance company takes 6-8 weeks, and the surgery gets scheduled and takes place shortly after that. That puts us in November:) Thank You, Jesus! And thanks to each of you who prayed!!
Monday, September 21, 2009
Sunday, September 20, 2009
In random order...
I'm Thankful For...
12. the Body of Christ
18. Goodwill Mugs
19. New Shoes
21. Nail Polish
23. God's Word
24. New Pajamas
28. Baby Sounds
29. My Children's Hugs
31. Date Night
32. Gym Membership
33. New Tribes Bible Institute
34. Corporate Worship
36. Autumn Leaves
37. Colored Underwear
38. New Van
39. New Play Set
40. Bubble Bath
42. Modern Medical Technology
43. Dr. B.
44. Family Visits
45. Letters & Packages
47. the Ability to Write
48. Family Reunions
49. Red Hair
50. God's Faithfulness
51. My House
53. Friends' Visits
54. My "Life-on-Life" Mentor
58. Rummage Sales
63. "Happy" Socks
64. This Blog
67. Family Night
72. a Heritage of Faith
76. Toasted Marshmallows
80. My Bed
81. Hot Showers
82. Life with My "Abraham"
84. My Birthday
85. Cornerstone Christian School
87. Family Vacations
89. Hope in Christ
96. Video Cameras
97. Older, Wiser Women
98. Electric Blankets
99. Fuzzy Slippers
100. God's Perfect Plan
Friday, September 18, 2009
It's been a looong, hard week; but at the end of it, I have to say that it has been quite productive, and God has been at work in me. He is good. His grace is sufficient.
Wednesday, September 16, 2009
The kiddos call.....
Saturday, September 12, 2009
Wednesday, September 9, 2009
TO GOD BE THE GLORY!!!
Sunday, September 6, 2009
It was a great morning. Thanks, Family.