Homecoming

We finally got to bring our dear boy home yesterday! 3 weeks and 2 days after he was born, Ryan got to come to his own home and be with the entire family - dogs included! Thursday night dad and Jeff brought all 3 kids up to see me and Ryan. It was a great visit and each child got to hold him. They were all excited to know that the end of our saga. I think I had really not given them enough credit for hanging in while mommy & daddy were gone so much. My dad really stepped in and handled so much of our everyday lives for us, so the kids wouldn't feel too displaced by the whole situation. Overall, I think it went as smoothly as it could have.
Fri. Ryan was circumcised (poor boy) and then after another full once-over, we were sent on our merry way, with a clean bill of health. He is now considered "general population" with no more risk for any disease/asthma/etc than any other infant. Praise God!

TRAPPED - but in a good way

So I'm trapped here in the hospital. I have to prove that I know what I'm doing as a mom. That I know that from somewhere deep in the recesses of my mommy gut where my instinct tells me that Ryan will eat every 31/2 -4 hours instead of 3 on the nose, that i'm right and he will gain, or at least not lose weight. Geesh that was a long and grammatically incorrect sentence. I've watched cable tv for the first time since my trip to FL and I've eaten hospital food that wasn't all that bad. I've read my bible, not written my thank-you notes, and nursed my precious son(he's doing well too.) I have to say though, that I have had a good chuckle people watching. There was the moment when I was just about to undue my nursing bra when I heard the sound of mowers cruising by my window. I hopped up in time to see the back of the guys head go by - thankfully the blinds were almost completely shut! Another time, as I wheeled Ryan back from the nursery, this sweet woman pushing a huge food cart down the hall played chicken with me:) Not her fault - the nursery beds are ridiculous to steer, but we had a good chuckle over that. Just before I sat down to write this I looked out my other window, which looks out over the parking lot, and saw this dear older man with whom I'm assuming is his wife. I love a precious grandpa-aged man in suspenders with his dungarees (reminds me of my Poppop Shuster) but then I laughed out loud when he came from around the car and I saw that he had on jean shorts with a belt, muscle shirt, and then suspenders! Just too much!
On the Ryan front, he's doing well. So far no weight loss and he's nursing a bit better. I am not supplimenting him at all, in an effort to see how much he is getting strictly from me. He is scheduled for his circumcision tomorrow morning and then if all is well, we'll be discharged in the afternoon. He did well on the exam given by the physical therapist and I went ahead and scheduled a follow-up in another month. Better to check him frequently and early on in the hopes of catching anything early. Dad brought Will down this morning and then the whole clan is coming back tonight. Will was just adorable with Ryan. He wanted to hold him and did so while sitting in my lap. Dad got some pics which i'll post later. He kept pointing to Ryan and saying "baby" to which I replied yes, Ryan. He would then say, "I-an.'' He'll be a great big brother!

Over the hump?

Traditionally, Wednesday is called "hump day." This is just the case for me this week. Ryan has remained off O2 for 2 days now and his stats are holding fine. He has nursed well on 2 occasions, not so hot on another 2, has taken a bottle well a few times, and not so great another couple. We are on the hump. He has to "prove" that he can eat and gain weight before he can come home. So, is he not consistently eating well because he's still too immature, or as I suspect, just lazy because he's gotten so used to being fed through a tube. I am a demand-feed mommy for my infants. When they tell me they're hungry, i feed them. It's that simple and infants quite predictably fall into their own 2-4 hour schedule within a day or so. However, we're dealing with a NICU full of people who rely on numbers, not a mommy's gut. So we'll sit here on the hump until either Ryan budges, or time moves us in the right direction. In the meantime, I have paved a road for the Lord to bring my baby home. I set up the pack-n-play, put in the carseat, and in my heart, made room for hope that it will be soon that my family is together.
Today, I am going to breastfeed all day (at each feeding I mean!) and we'll see how he does on that kind of schedule. Wish us luck:) And thank you again, for each of you lifting up our family and our sweet boy - your comments on the blog, your facebook notes, phone calls, and cards have buoyed us as we put our heads down into the wind and persevere!

Just a quick post. I just wanted to put out into the blogosphere that this a place where I can emotionally vomit. Nice image huh? Seriously. Sometimes I forget that my words are actually read by others. and so I feel the need to reassure my sweet family and friends that while I do not and cannot "take back" last night's post, I can say that I am not giving up on God, Ryan, my family, nor myself. I am awake this morning ready to take on a new day. Ready to "prove" God by simply choosing to believe in Him and his goodness. Dad was reading me an excerpt from a daily devotion from Oswald Chambers which, of course, spoke volumes to me. today. Fretting is in itself a sin because it doesn't allow for trusting God in all circumstances. So today I am going to put my fretting aside. I will go be with my son and pray and love on him and trust. Or at least I'm going to try...

I feel so wearied by this day. It started out well enough. Church, people letting me know that they are praying for Ryan, then off to visit my boy. But somewhere into the first hour of my visit I decided I'd just had enough. I was done. Crying out to God wasn't enough. I needed to yell. Scream. Beat on something. Somebody. And there was no answer. There was nothing to hit, no body that miraculously appeared to take the punches I desperately wanted to deliver. Instead, my tears fell silently onto my boy. He slept, completely unaware that his mother was falling apart. How can I be charged with caring for this child, when I cannot get myself together long enough to merely rock him. Perhaps the tenderness this day started back while during a worship song, I could feel my dad tensing, emotional, and then in an instant reaching his arm around me, and through tears, telling me he is proud of me. That somehow in my life I have done even one thing to make this man proud is too much for me. That he remembered that the one thing I regretted about my relationship with my mom was that she was not one for emotional displays with her girls and words of encouragement/affirmation were difficult for her. She could write them sometimes, but it never occurred to her that children long to know that they have made their parents proud - especially a prodigal child like myself. In her defense, she truly assumed that we knew how much she loved and was proud of us - if her friends are any indication, we and her grandchildren were pretty much all she talked about. So, from that moment in church, to knowing that the woman who just wanted to reassure me when she said, "everything will be fine," was only being kind and in her own way, wanting to reassure herself that surely this baby would be coming home soon, to watching in desperation as Ryan refused to latch on to my breast after having only nursed on the other side for 10 minutes, then refusing the bottle, preferring the feeding tube as a means of eating, and finally, watching his respiration jump again, out of the "normal" range...it's just too much. I gutted it out for 4 hours and then failed my child. I fled that damn hospital. I got in the car, cried again, and then sped all the way home. Just wanted normal. No stupid beeps and chirps of machines reminding me that my son cannot breathe the way he's supposed to. No nurses "just checking in." No overheard conversations of other babies who are going home tomorrow. I. Am. Done. And yet, I will go back in 4 hours. Hopefully after spending some time with the other kiddos and eating dinner with them (although right now I don't know where they are - somewhere with Poppy I guess). Will that be enough to carry me through the next visit. I hope so, because right now my faith ain't cuttin' it.

Happy Birthday Ella-Kathryn!

Opening her birthday picture from Jack . I got and ipod!!!!!

I love Taylor Swift:)

Oh boy - my little girl turned 5 last week! And what's worse? I'm only now posting about it. We've tried to keep things status quo around here as we shuttle back and forth to the hospital to see Ryan, so her part was a definite must, even among the chaos that is our lives right now! She, of course, had a horse themed party, as she loves all things horses/horseback riding etc. In the morning she recieved a couple of gifts from her Poppy (my dad, as godsend, who has been staying with us for 2 weeks now) and from mommy, daddy, & her brothers. Poppy got her the much coveted Disney ipod and we got her a Taylor Swift CD and the promise of another trail ride, later in the fall, and when Ryan has been home safe and sound for a while. She also recieved a very sweet picture that Jack drew for her - that of Ella-Kathryn as a princess in the castle, a dragon sweeping in, and her big brother as a knight protecting her with his sword! How precious is that???? Plus he enclosed 78 cents - random yes, but very sweet.

In Ryan news - not only has he been moved to the outer sanctum of the NICU, he also tried his hand, er mouth, at a bottle today! He did great, and the speech-therapist thinks he's going to do just fine with oral feedings (although he still has his feeding tube in for now). He did have some spit up that took Jeff by surprise - the nurse thinks it was just a gas bubble that didn't get burped up, but boy howdy, Jeff was a pro, sitting Ryan upright and keeping our lil' man from choking. Way to go daddy!

Also, Jack and Ella-Kathryn finally got to see their baby brother and HOLD him for the first time. They were so excited and did a great job obeying all of the hospital (and mommy's) rules. They were both kind and sweet and very tender with Ryan. Jack and I had a moment when Ryan's stats when kind of caddywumpuss (not sure if that's how you spell that but I don't care since that is totally the best word for this) but everything settled down and Ryan seemed very relaxed.

First bottle feeding. Getting stronger every day!

Big sis and Ryan.
The nurses made Ryan a crib decoration - thanks ladies.

In other big news, we had the first day of school on Wed and it was Ella-Kathryn's first day of kindergarten. EK got the teacher she wanted, Jack's K teacher mrs. Sweeney, and Jack's 2nd grade teacher, I think, will be a great fit too. Daddy showed up in uniform for a formal escort!

Notice, my dear boygiving me bunny ears!





That's all for now - thank you for continued prayers for Ryan and please keep them up!

Progress

Every morning I psyche myself up for "the morning call." It's the phone call I make to the NICU each morning at 8 am, which is the soonest we can call since they do shift-change from 6-8 (am and pm.) I try to be positive. I really do try. But often I find that what I'm really feeling is a sense of cautious pessimism. That way I can be pleasantly surprised if it's good news...so wrong I know. God calls us to place our hope and trust in him. How am I evidencing this in my life when I am so clearly in doubt of his goodness and mercy. While driving down one night (Jeff and I have come to really appreciate this time together to process everything,) I admitted that since mom died, I have not fully given the people in my life over to God. I say that I have laid them on the altar, so to speak, as Abraham did, but truly I have not. I am withholding what is already His. Especially my husband and my children. Especially Ryan. Ultimately it stems from my fear that when/if I give these people completely over, if I really pray God's will, He might see that taking them "home" is the best answer. As with mom, her cancer had so taken over her body, the only "solution" was either complete healing or death. Now, I know that this is all quite silly because my fear doesn't sway the outcome. After wrestling with this, and yes I'm pretty sure I've sustained an injury a la Jacob, I have concluded that first and foremost God is good and he loves me. Now if I move forward from that premise, then I must believe that God did not take my mom to punish me, and even though I might not understand this side of heaven, there was a greater purpose in place in spite of/because of her death. Or perhaps because of her life - to flip-flop the argument. Furthermore, at this point in my life, with Ryan's illness and NICU stay, God is still good, regardless of the outcome (although I do feel hopeFUL not hopeLESS, just helpless if you know what I mean). For, if I abandon this belief, I am simply lost and without hope. Not a place I want to live! Sorry for the philosophical bent of this post - I am drawing nearer to God (yes, I have wondered if that's not in "His Plan") and for that I am grateful.
Ok, so on to the info: Ryan is up to 20 cc's of milk, holding at 2 liters O2, but all the way down to 20% (which is room air)! He's on his way! His respiration rate is still quite high for the most part, but he is experiencing more frequent periods of lower rates. Please keep on praying!!!! Thank you so much for all of the cards, emails, facebooks (is that a word?), meals, etc. You are truly the hands and feet of Christ!
As I am trying to keep up with my reading through the bible in a year (again!) I found myself in Lamentations and several verses really hit home for me:
Lamentations 2:19 Rise during the night and cry out. Pour out your hearts like water to the Lord. Lift up your hands to him in prayer.
Lam 3:21-22a;24 Yet I still dare to hope when I remember this: the unfailing love of the Lord never ends! ...The Lord is my inheritance; therefore, I will hope in him!
And this one hit me where it hurts!
Lam 3:55-57 But I called on your name, Lord, from deep within the well, and you heard me! You listened to my pleading; you heard my weeping. Yes, you came at my despairing cry and told me, "Do not fear!"
A good word from the Lord!

Happy Birthday Jeff!

Happy Birthday to this guy - yes the goofy one in the first picture - he turned 34 today! And to that same sweet, tender, loving father and amazing husband in the second photo. Sadly, because of time constraints today and because I can't drive yet, he had to buy his own birthday cupcakes! Oh well - we'll make it up to him next year????


This guy is doing great too. Every day he's making small steps towards being released. He had to get a pic line today (ouch) and get another chest xray, and a head ultrasound. the pic line only took 3 tries, the chest xray was again better, and the ultrasound is normal! He pooped three times today too!!!! And it all slap wore him out:) He slept then the rest of the day! he hadn't been allowed to eat all day since at his last feeding early this morning he had 4 cc's residual out of 5cc's milk. But tonight he got the all clear to return to 5 cc's. This is our next big hurdle. He has to increase the amount of milk he takes in per feeding before we can get him moved out of the inner sanctum of the NICU. I did get to do some Kangaroo care this morning - he loved it. Stared at me for 30 minutes and then got mad when he realized he couldn't nurse! Stinker! He loves to be swaddled and hates to be unswaddled - and everyone in the NICU knows it.

PS - I think he looks JUST like his daddy!

PSS - please pray for a dear family who lost their newborn tonight. We had seen them in the NICU yesterday and I recognized her from a blog that I had seen. Mom had an infection several months ago and perhaps this is the reason for the tragic death of their daughter, but we just don't know. Their baby girl was born brain dead and in a coma, and over the past couple of days we have been watching their devastating reality unfold. It seems that tonight was their goodbye, as the family was all gathered, tearfully, in the lobby. Jeff and I are overcome with grief for this family, as it could so easily have been us in their shoes. We are lifting them up tonight and in the coming days as they seek comfort and understanding in what seems to be an inconceivable circumstance.

Joy and Hope...with reservations...

It amazing how God steps in to hold us up when we cannot possible stand up on our own. I know that I could not possibly walk into that NICU every day without His invisible hand literally propping me up. I just can't. Jeff and I say we put on our "game face" before we head in to see Ryan. We shed the worry and fear and focus on soothing him, talking to him, reassuring him, praying over him, and now holding him! But it seems that the "high" we often have felt after leaving our boy fades as the worry, fear, doubt etc. come creeping back in. We try to combat it with prayer and talking it all out with dad and my sister, but it is very difficult. At times we feel like we are better served setting a low bar each day, in order to be pleasantly surprised if things have gone well.
After a great day yesterday, he was stable all night, but when they tried to decrease his O2 by some percentage points, he couldn't hold his own. Now the rational side of me says, "give him some time. Up until this point he has always been slower to move on to the next step, and look how far we've come in 6 days." But somewhere in my humaness, I am shaken. I want to stick my fingers in my ears and wait until it's only good news. Keep the set backs (if this even really is one) to yourself. Or, if we have BAD news, just tell me and let me get started on the process of falling apart completely...

Prayer warriors, today we need you to lift Ryan up for his head ultra-sound, the ability for him to wean down on the O2, a clearer chest x-ray. Please remember my boy. It is a mothers plea.

No news. No new pics. Although he does have a fancy new purple neoprene hat and glasses. He needed some UV therapy today - not a big deal and his number wasn't that high, but just wanted to go ahead and get a jump on it. The newest chest xray showed a bit of improvement. It's that hardest part - the baby steps. I keep wanting to see, well, you know, CHANGE. In an awesome God moment, as my dad, sister, and Jeff were sitting in church this morning, our neonatologist sat down in the next row up. I could have reached out and touched him - wanted to really. To say, hey, I'm here too. Are you asking for the same miracle I am? Do you pray for each of your patients? When I went to the hospital after service, I was talking with his nurse and I asked, "are you a Fellowship family?" She is, they are. I have seen both of her boys go through my hallway/classrooms over the years. Very sweet. So, yes I see God's hand in all of this. But yes, I am already weary. Already. and we could be at this for a while. How weak am I? Not asking for an answer, or for sympathy. Just merely acknowledging what I have learned in my walk.
FAITH=Choosing to live as though the Bible is true regardless of circumstances, emotions, or cultural trends.

Ryan Kemp Simpson

Happy Birthday Ryan!!!!! August 5, 2009.

So, you know how things often don't go the way you expect???? That's where we live right now. The corner of what the ***? and Huh?

Ryan Kemp Simpson came into the world 5 weeks early and a bit on the cranky side. He is a great weight/height etc, but his little lungs are needing some extra time to get up and going the way they should. And that's ok. He's at the NICU at Willow Creek and the staff there is awesome. Ryan's nurses love on him and take such good care of him. I will post more about the challenges involved in not being able to hold him etc. and of being separated from him, but for now, I just wanted to give a heads up about his general well-being. THe long and short of it is that for sometime I was apparently leaking amniotic fluid and it didn't become significant/obvious enough until last week to make note of it. Then on Wed during the follow-up appt. we found that I had lost a lot of fluid, the cord was around his neck 2x's and he was still breach. Time to go little man! Within the hour I was at the hospital being prepped and out he came 6:30 Wed night. In the coming hours it became clear that his lungs were not quite ripe - something we were prepared for. In the wee hours of Thurs. AM he was transferred to WC and has been treated for the immature lungs and an infection most likely resulting from the low fluid etc.
Here are some pics and we'll post more later. We are blessed by your prayers and please continue to life Ryan up to our Healer!

Does this look like trouble, or is it just me? I looked up from checking out a recipe site and this is what I saw. They are standing by the front door, all with arms crossed, Will banging his back against the wall. Is there a rebellion brewing? Some sort of mutiny? It is ridiculously hot here and so we've been spending a lot of time indoors. Are they merely stir-crazy. Or just crazy? If you don't hear from me a in a few days, send help. Jeff and I could be tied up in our closet or something...

Back to School Hair-do

Ella-Kathryn is a bit of a tender head. Brushing/combing is a nightmare and has progressively gotten worse as her hair has grown out from her last haircut. So, in the spirit of getting ready for school, we chopped it off. I had gotten a coupon for Great Clips and on Sat, we had to head down to Fay anyway, so we stopped in on our way home for a "quick" cut. Yeah right. The sweet, but slower than molasses hair stylist, nodded knowingly when I told her how I wanted EK's hair cut. I showed her a picture. I was reassured by her smile and went to grab a couple of things from Starbucks while Jeff and the boys waited on her. I assumed we would be about finished by the time I got back. I. Was. Wrong. 38 minutes later, I was summoned over to check the cut thus far, and at that point she did ask me if I could help EK keep her head tilted down. Another 5 minutes and we're finished...or so I thought. We were, for all intents and purposes finished. I paid. We left. But as we were walking out to the car, I call Jeff's attention to the fact that either our dear daughter is lopsided, or her hair is a tad longer on the right side. It's defnitely the hair. I know I should run her back down to have it fixed - and I will. BUt for now, if you don't scrutinize, it really is stinkin' adorable. she looks like a Hannah Anderson model ( they make great cotton pj's and clothes if you didn't know). She looks sassy and precious all in one. And, she looks some how older. Sigh. She is going to kindergarten. Sigh. She is turning 5 in 10 days. Big Sigh. I love that girl.

PS - the pictures simply do not do it justice - it really is a cute cut. Minus the lack of symmetry:)