Gr

I feel like he's never gonna get home. I'm discouraged and frustrated. Judah isn't doing as well as we thought. He loves nursing. He prefers the breast to the bottle, and actually does better there. Of course that's huge and wonderful and I'm very thankful. But as good as his latch and suck are, he's not getting much from either, and he still tires out quickly. I looove holding him close and nursing him, bonding with him in the way that only I can...but I'm so discouraged that he's not able to get what he needs from me. The lactation specialist thinks he just needs time...time to gain more strength and stamina. The dr. is still satisfied with where he's at, and not concerned about anything. But time? More time? Every day apart from him seems like an eternity; how can I not feel the way I do about more time? Building my entire schedule around the pump and runs to the hospital...I'm so weary of this. Verses come to mind...but they don't provide physical strength, energy, or stamina. How will God's grace see me through the rest of today? I believe that it will, but how? I'm eager to go back to the hospital tonight and spend more time with Judah; but I can't help but wonder how many more nights...and will they ever end?

Too tired to listen

My heart is still singing, but I'm just too tired to hear it. All that "happy" is being drowned out by the stress of having Judah in the NICU STILL! He's still making such great progress. The report from the dr. every day is very positive. He's very pleased with his progress and rate of improvement. Judah is doing better and better at the breast, and taking more from the Haberman (his special bottle) almost every time he gets it. And now he can oral feed any time he shows hunger cues, not just 4x a day. He's so close to coming home. We've got a 50/50 chance of bringing him home this week. It will probably be more like early next week so we can bring him home without his NG tube. That's a very good thing...we're almost there. God has his homecoming date decided already, just like his birth date was, so I can rest in the fact that it will be the perfect day. We won't miss it, it won't be late or early. The problem is, I'm not sure I can make it to that day. I thought I was already under the max amount of stress that I could handle. Apparently I was wrong, because the longer Judah is in the NICU, the more stressed out I become...and just all-over-tired. And it's not just having Judah in the NICU; the stress is hitting me from all sides and from every angle. I'm trying so hard to trust the Lord and just take it a day or an hour...or even a minute...at a time. I've just never experienced anything like this before, and the weight of it is just about enough to knock me over and keep me down. Judah is doing awesome; but I feel an immense amount of pressure to be there for any and every feeding that I can, on top of the intense desire I have to be there with him all the time already. This is my baby, my son, and I want to do everything within my power to get him home! And that "everything" is my being there to feed him as often as possible. Not to mention being there to bond with him, love him, and care for him to the best of my ability while he's there. But then, of course, that leads to the stress that comes from the home front. The Boys are actually doing really well. My Little Man has had a couple of extra emotional meltdowns; but overall, both of them are handling everything like pros. It helps that they're able to be involved and see Judah and hold him. They do miss him, though. The little Princess, however, is beginning to react to my stress and crazy-busy schedule. She's only 2; of course she's struggling! I understand and I feel so bad for her. But I'm just so incredibly torn between...my home life and my NICU life. I guess that's the simplest way to phrase that. I haven't even mentioned Jared. We're so "apart" right now. Work, taking turns with the kids so we can see Judah, taking turns in the waiting room with Lydia, housework, running back and forth to the hospital alone at night while Jared stays with the kids. The to and from is so hard. Sometimes I just don't want to run up there again. And then I feel so guilty because that's my boy up there. I want to be with him. I just don't know how much longer I can do this. I miss my older kids and Jared; I miss Judah; I miss being at home; I miss feeling rested. I miss feeling whole. My family is fractured, so that's how I feel. Kind of broken...definitely a feeling of not being right. I don't feel like myself. So what do I do with this? How do I take this to God? Obviously He knows all of these feelings intimately, and He understands them even better than I do. But there isn't really a "fix" here. This is life right now. I guess I just don't know how to deal. Matthew 6:25-34 just doesn't cut it right now. It's too...cliche or something. Can I say that about Scripture? Well, there it is. I feel like I need something deeper from Him. I need...Him. Just Jesus. Boy, I think I just go to the heart of the matter here. I think I feel lost and like I've lost Him in all of this...or maybe He's lost me? But I know He hasn't. I think what I'm missing and longing for is that sense of His presence. Feeling Him in the midst of all of this. Because then I think I could handle everything better. If I could just feel Him right here with me then maybe I wouldn't be almost paralyzed and overwhelmed by this stress. I want to physically feel Him lift the weight of this burden. No, I want to want Him more than I want relief from this. But I'm so far from that. I know that He, His grace, is carrying me through each day; I would have buckled already otherwise. But this is a time when, honestly, His grace seems like it might not be quite enough. I read that and it just confirms to me that I really do need Jesus more than anything. If I'm so "lost" that His grace seems even a tiny bit insufficient, than I need HIM more than I even realize. So, back to the basics. Jesus is with me. Jesus loves me. I think that's enough for the moment.

Still Singin'!

Judah has had a great weekend so far, and continues to make progress! Today especially has been very exciting and encouraging. When I went to see Judah this morning (I'm there by 8 every morning) his night nurse had left a note on his board letting me know that he had taken 37cc from his bottle overnight. [Last night he also got moved to a new room! Just in case anyone was wondering what "seniority" looks like in the NICU, it's a window room. One became available (congrats to that mommy & daddy), so Judah got first dibs. Not excited about being in the NICU long enough to acquire seniority, but excited about the window:)] Then, when I was trying to nurse him this morning, we finally "got it"! At first I was getting discouraged and frustrated. I just held him for a minute while we took a break. I was ready to quit, but then I knew that we would come to a point that I would have to make a decision. Either I was going to stick with it, or I was going to have to give it up and go with the bottle. I was NOT ready to give up yet. So, I decided to try one more time. He was getting fussy again, and mid-cry, when his mouth was wide open, I got him on! He finally got a good latch and seal and nursed for 20 minutes! Because he nursed for that long, he didn't need to get any milk from his tube!! YAY!!! First feeding without any assistance from his tube - thank You, Jesus! He took another 20cc from the bottle this morning at 11, and nursed for another 10 min. this afternoon. He got the rest through his tube for each of those feedings. I saw the dr. when he rounded on Judah this morning, and he said that if Judah continues to progress through the weekend, then on Monday we should be able to "lock in on a plan". He's still on track for potentially coming home at the end of the week. Please, Lord! It's funny, because the closer we get to discharge, the more excited I get, obviously; but the harder it gets, too. Each time I see him it's harder to put him down again, even though I know each time brings me closer to the last time. I still just ache for him; and something about being so close to bringing him home makes the ache more acute sometimes. Well, keep my eyes on Jesus, and focus on the grace that He has given me for each moment of today. And tomorrow when we have to go to church without him again. But that's tomorrow, and I'm still living in the grace for today. One more thing: praise the Lord for wonderful compassionate nurses who share our excitement and eagerness for bringing Judah home.

At Last!

My heart sings as I write this post. In the last few days Judah has continued to make progress. Every day the dr. tells me there's not much to report. There's always little things to discuss, but what a relief and joy to finally be past all that was so scary and urgent in the beginning. The last couple days have primarily been focused on Judah's feeding. We have all kinds of help! The lactation specialists are working with us on breastfeeding, the developmental specialist is working with us on suck and swallow and eating from a bottle. Judah still gets tired very quickly, but yesterday he was able to take 12cc from a bottle with a special nipple for his cleft. (And let's just stop and thank Jesus that Judah's cleft palate is not severe...it's "not too bad" in the words of our developmental specialist!!) I got to hold him for part of his bottle feeding yesterday, and I was just so thrilled to see him sucking and swallowing without any problems! In that moment I didn't care that he wasn't nursing, because I knew that I was watching him get closer to coming home:) This morning I was able to work with the lactation specialist and nurse Judah a little more. His latch/suck have improved and he was able to get a couple swallows! Baby steps, yes, but huge triumphs at the same time!! At this point he's on a "pathway" in his care plan. He's able to be orally fed up to 4 times a day. 30 minutes before and after his scheduled feeding times his nurses will start watching him for cues of waking up and being hungry. Then he'll get fed "on cue"...for now, by the developmental specialist. He gets 60cc of milk; so whatever he takes orally gets subtracted from that total, and the rest he'll get through the tube when he tires out. If he just sleeps through that scheduled feeding time and the hour surrounding it, he automatically gets fed through the tube. I'm excited that he's in the transition phase to cue feeding. And I'm really excited that he's finally starting to wake up more! We've seen his eyes open a few times now:) The dr. will be watching him to see how he progresses in his oral feeds through the weekend. Then, depending on how he's doing, we may be learning how to feed him through the NG tube so we can bring him home. So, here's where we're at with everything: his urologist is pleased with his kidney/bladder function and his output, and determined that he can be monitored on an outpatient basis, with another ultrasound (assuming he can stay infection-free with the Reflux) around his 1st birthday. His endocrinologist will be re-evaluating him on Monday, looking at his Thyroid and Cortisol levels to make sure that he's stable on the dose of meds he's on, and then the neonatologist will be talking to him about a discharge plan and follow-up. (Is that not a beautiful word, "discharge"?) The neurologist & neurosurgeon are content with where he's at and will monitor him on an outpatient basis, with another MRI in a few months. The plastic surgeon will do the lip repair around 4 months, the palate around a year, and the extra fingers at one of those times. And the feeding. If he continues to progress and improve, even if we need to learn how to do some tube feeding, then - can you hear the singing? - he may be able to come home by the end of next week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My beautiful, beautiful, precious boy might be home in my arms in just days. Not another month, not a few weeks, days! So, of course, we pray towards this end. I'm trying to keep my eyes focused on Christ in this, realizing that His plan might be different. Maybe Judah won't be home that soon. BUT GOD can do anything; He can certainly bring our boy home! Home! The ache has dulled slightly with the knowledge that there is a light at the end of the tunnel - at last!

The Ache

I miss Judah. I REALLY miss him. I miss everything about him...everything that's supposed to be happening now that I just had a baby. I miss having him inside me. I never experienced that with my other kids. When they were born I was too excited to have them to miss being pregnant with them. But every night when I lie down with Lydia to tuck her in I miss him. That's when he would get really active and start kicking me and waking up for the evening. It's just not fair. I feel like I've been robbed. I've been stripped of all the beautiful, wonderful, precious things that I should be experiencing each day with my baby boy. And I'll never get this time back. His first days, weeks, month, maybe months, will never be mine. They belong to his nurses and doctors...I only get moments in between. I miss hearing his tiny baby noises when he's sleeping. When I lie down at night, I feel the separation from him even more acutely, because my body longs to feel his curled up with mine. He should be with me, safe and secure, sleeping in my arms, nuzzling all night. I should be able to smell him, listen to the sound of his breathing, just watch him sleep and be in awe of this perfect little creation, God's gift to me. I miss hearing him cry, and being there to pick him up and make his world right again. I'm not there to meet his needs, to comfort him, to reassure him, to just love him. I miss wearing him in the sling. I miss being able to kiss him whenever I want. I miss him. It's an ache that never really goes away. And it just isn't right. I mean, I know this is just a short chapter in the story that God is writing for Judah and for me; I know this has been part of His plan since the beginning of time. And I know in my head that this is God's good. Somehow this is good. But in my heart there's just a hurt. It hurts to even acknowledge that this is God's good...because then I have to believe that He's right. And I do. But I still just want my baby. I want this part of the grief to be over. There will always be a part of me that grieves over the loss of a normal childhood for Judah. But I can deal with that. It's this sometimes paralyzing grief, this stress, strain, and pressure that I'm not sure I can make it through sometimes. I have never been through something so hard. I have never ached like I ache for my son. Sometimes I'm so busy running back and forth to see him and taking care of the other 3 and trying to spend time with Jared that I don't feel the ache so acutely. But there are days when I miss him so intensely...no amount of busyness can distract me from it. God, help me. I can't survive a second of this without You.

For Judah's Fan Club

Judah is doing so well! The last 2 reports we've gotten from the neonatologist have pretty much been "not too much to report"...music to my ears! I never thought I'd be so happy to see one of my kiddos "behind bars", but the crib he got moved to on the 18th was a beautiful thing to behold! He no longer has his catheter in - that's some of the best news! He had another VCUG, which showed that the vessels they thought were causing an obstruction, are maybe not an issue after all. He was emptying his bladder completely during the test, so they decided to leave him be and monitor his kidney/bladder function. I gotta say, I love changing that little diaper and holding my boy sans the stupid catheter!! He's getting his meds orally, no more lines:) It's just his feeding tube and resp./heart monitor lines. And he looks too adorable for words! All the puffiness from all of the extra fluids is gone...which means he's also much lighter than he was, too. He's down to 6lb. 4 oz. Such a little peanut. We got to give him his first tub bath on the 20th. I considered it such a gift to be able to be there and do that for him. He loves sleeping on his tummy...just like Eli (who is extremely proud of that fact). He's up to 55cc of milk and is no longer getting any other nutrition - it's all Mommy! He's been spitting up more than usual, though, so they put him on "reflux watch". They raised the head of his bed and started holding him upright for feeds or laying him on his tummy. That helped somewhat with the spitting, but today they started him on Prevasid for reflux to help reduce the acid level in his stomach. He's started showing signs of being interested in breastfeeding. Last night and this morning I tried nursing him a little bit. Last night he tried to latch on and suck, but because of his palate, and because he didn't open quite wide enough for me to get him on all the way, we weren't too successful. The good news, though, is that his interest is there and he tried. It was another gift for me in this whole process to see his little mouth and tongue going. That's a big step in the right direction. This morning he had lab work done (blood drawn) before I could try again, so by the time I got him he was really too tired to suck...even though he was hungry. Poor baby; because of how sick he was, and everything he's gone through, eating is quite an ordeal for him and he just doesn't have the energy yet. My prayer for him lately has been that the Lord would get us over this hurdle successfully - feeding him by breastfeeding and a special bottle - and soon, so that he can come home. And then, after he's home, we can work on exclusively nursing, Lord willing. Other than that, he's doing awesome - praise the Lord!!

That Moment

Our lives are often changed in just a moment. The moment we say "YES" to Jesus. The moment we realize we're really in love. The moment we say "I do". The moment we find out we're going to have a baby. The moment we we see and hold that beautiful new baby for the first time. And, for me, the moment I held Judah for the first time in 13 days. Yes, my life changed in that moment yesterday afternoon. Judah came off the vent, and 10 minutes later he was in my arms. I wish I could explain what I was feeling in the moments leading up to that one precious one. Aniticipation, a little anxiety, excitement...I was on the edge of my seat! Up to that moment I could only imagine and dream about what that little boy was going to feel like against my skin...how he would smell...how he would completely melt my heart. I wish I could describe the feelings that overwhelmed me when the nurse finally placed him in my arms. But I think those will just always remain in my heart...between me and the Lord and Judah. Oh, he felt so good, though. Warm, soft, smelling so sweet. He just snuggled right in and slept against my heart. I will always remember that moment (and the hour that followed) as one of the most precious of my life.

The Latest

Our darling little Champ is just that, a champ! He's been through so much, but God continues to pull him through, and Judah just keeps hanging in there! 2 days ago he finally reached extubatable levels on his vent...meaning he was finally breathing the same level of oxygen that we breathe (21% , or room air) and he got down to the lowest possible vent settings. It was a beautiful thing when the nurse practitioner came in 2 nights ago to wean his vent settings a little more after a great blood gas came back, and she couldn't! There was a little celebration in his room over that:) Now that we're finally past the hypertension we're trying to process and work through all of the health problems that we're learning about. Thankfully, Judah is at the perfect level of hydro cortisone and his thyroid med. (can never remember the name of that one) to replace those hormones; and other hormone replacement therapy won't come until later. The opthamologist did an eye exam yesterday morning, and Judah's eyes looked normal - praise the Lord! There's nothing to be done about his brain right now. Bottom line is that it just didn't form properly. He developed large ventricles and his pituitary gland is in the wrong place and underdeveloped. Time will tell if that will mean developmental delays for him, or anything else. His cleft lip/palate are at the bottom of the list, but we have started talking about oral feedings for him...that is what will keep him in the NICU for up to 2 months. He has to learn how to eat. My long term goal is exclusive breastfeeding; my short term goal is using a combination of nursing and the Haberman bottle (special for his palate), so we can at least get him home. The LC and one specific nurse practitioner have been extremely supportive and encouraging about the breastfeeding. They both believe nursing Judah exclusively is a reasonable goal. It will take time, patience, practice, but my prayer is that we'll get there. The big thing now seems to be his kidneys and other urology concerns. The urologist is trying to buy Judah some time by attempting to stretch him out a bit with a bigger catheter so they can do the telescope procedure to break up the valves. Rerouting the bladder to drain out of his abdomen would be a more invasive surgery, and of course, we'd rather avoid the VCAG bag, too. I'd much rather my baby boy be able to pee into his diaper than into a bag. So, time may be Judah's best ally right now. We'll see. The Nefrologist came by yesterday to start Judah's file. Apparently, Judah's kidneys are a more complicated problem than we understood at first. Because of the combination of the reflux and valves, Judah's kidneys developed abnormally, and are not functioning properly. There's been some improvement since birth, but we don't know if he'll ever have completely healthy kidneys. One of the consequences of these 2 conditions is that Judah's kidneys will make urine constantly, regardless of getting sick. When we're sick, our kidneys slow way down on the urine production to help protect our bodies from dehydrating. Judah's won't do that, so he runs a much higher risk of becoming dehydrated and needing to be specially hydrated during a bout with the stomach flu, a fever, or even the common cold. Not encouraging news when there are 3 other germy kids to live with. And one of them in school. I'm trying not to think ahead to things like this...it's extremely overwhelming and discouraging. Grace for today. That's the key. Judah is teaching us so much about taking each day as it comes, moment by moment, hour by hour, and just trusting God to provide the grace needed for that day. It's a hard lesson, but a very worthwhile one. And we have the privilege then of seeing God extend His grace to us over-abundantly, in ways we never anticipated!

I'm dating again. I never thought I'd be in a relationship like this after I got married, but here I am and I love it...and I'm in love! I'm excited before every date, a little nervous, giddy, anticipating seeing him again, trying to look my best. I think about him all the time, and I practically count the minutes between times when I get to see him. I love holding his hand. He's always so warm and his skin is so soft. He's not much of a conversationalist, but that's o.k. because he's a great listener! And he has great facial expressions when I talk to him. He's quite the charmer, a little flirty, kind of a ladies' man, but I know he really loves me the most. I think he's playing hard to get, because he never looks me in the eye, but that just adds to his mystery. He's completely and utterly adorable! I almost can't keep my hands off of him! I think things are getting pretty serious. We've been talking a lot about him coming to live with me. We're not totally ready for that yet, but I know that day is coming. I just can't help the way I feel! He gives me butterflies and makes me smile! He's made me cry a few times, but I can't help but forgive him. One look at that pouty face and I'm a goner. We have a late night rendezvous tonight. I can't wait! Maybe tonight will be the night that he finally gazes longingly into my eyes. And if he doesn't, well, that's o.k. too; because I'm so smitten with him that I'm in this relationship for the long run. I'm not lettin' this one get away!

Family Time

Usually Jared and I go to see Judah after the kids are sleeping. It's a great time, because the kids don't miss us, and we have some quiet time just with Judah. We always pray with him and kiss him goodnight. Remind him that Jesus is holding him even when we can't. It's our NICU version of tucking him in. But last night we went after supper and took "the Brothers" along. I'm so glad we did. They love going to see their baby brother, and we take them as often as possible, but it was just more special going through the tucking in process with them! We spent some time talking to Judah, touching him, kissing his toes. We got an update from his nurse about how the rest of his day had been. And then I read him and the boys a bedtime story. We all prayed together. We kissed him and loved on him some more. And then we said goodnight and went home together. Good family time.