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.....