Tuesday, June 30, 2009

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?

Monday, June 29, 2009

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.

Saturday, June 27, 2009

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.

Thursday, June 25, 2009

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!

Monday, June 22, 2009

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!!

Thursday, June 18, 2009

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.
video

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!

Tuesday, June 16, 2009

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!


Sunday, June 14, 2009

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.

Some Test Results

*Sssiiiggghhh* Sometimes I just don't know where to start. My beautiful boy's life has just started out so complicated. He's definitely doing better; his lungs are healing well - slowly - but well. He'll be off the vent soon. He's off all of his BP meds and coming down well on the Hydro Cortisone. His cord tube is finally out...which meant that he needed to have an arterial line put in his heel so they could still draw blood gases...but he's up on feedings. 20cc starting tomorrow:) Now that we've had time to process his urology issues, we realize that those are the most fixable and temporary health concerns that Judah has. We'll get past those. One day at a time. Funny Story. Judah even had his first poop today! The beauty of it was that Daddy got to change it...a whole little diaper FULL of maconium that had been backed up in his system for a week! Wish I had gotten that on video:) So, as we go one day at a time, sometimes one hour or one moment at a time, we're able to process what's happened and rejoice over how far our Champ has come. But there's still so much more to come for him. Which brings me to the latest test results we got. The EEG (testing for seizures) showed normal activity for Judah's age. He still has the "jitters", but that could be a result of coming off some of his drugs, too. He seems to have improved somewhat in that area, too, so yay! The MRI results were good, but not really complete. They didn't see Aqueductal Stenosis, which was his presumed diagnosis before birth. That's good. His ventricles may just have developed larger than normal, and that's why he has more fluid. Not totally clear on that yet. The biggest thing that came from the MRI was confirmation that his pituitary gland is indeed under-developed. Hormones. That's what this "Master Gland" is all about. Judah's hormone levels have been coming back low - cortisol, thyroid, growth, testosterone (still suspected, but not definite). He's on Hydro Cortisone to replace the cortisol and a thyroid med. to replace that. The growth hormone affects blood sugars, etc., and isn't something we're concerned about yet. The testosterone is still yet to be determined. These hormone deficiencies will most likely be treated with drugs for the rest of Judah's life. But at least they're treatable. He'll be having another MRI to focus almost solely on the pituitary gland probably later this week...and then we'll know more. Of course with what they call "mid line" anomalies in the brain like Judah has, he's at a greater risk for developmental delays and possibly even vision problems. But ya know what? Right now I just feel like telling everyone, SO WHAT?! This is just my baby, my boy. Fine, I get that he has health problems, and he'll have special needs for the rest of his life. And yes, he's extra special to me. He is so precious in his vulnerability and helplessness. But he's still also just my son. Judah. Just Judah. And I don't know if anyone else will ever be able to see him that way. God didn't create a special needs kid. He created - He personally knit together - a beautiful little boy that He knows intimately and loves passionately. Ok, so God sees him as Judah. God knows all the details of every health problem, but He also knows just Judah. I can't think of a better way to close this post than with that truth.

Eli's Judah

Eli wrote this a few days before Judah was born. He was coloring pictures, too, getting ready to decorate the bulletin board that we told him would be in Judah's special nursery room when he was born.



"Judah's Journey"

When Judah is born and grone up a little, I want to teach him how to play Baddle Ship. And lots of other things too. I can't wait any longer for him to come out. I am going to be a great big brother. I also can't wait to help mom change Judah's diaper. That sure is going to be stinkee! And help mom get Judah dressed. Even though he looks a little different, He is very special to me. I love you Judah!!!

Love: Eli



The nurses have also given us a few cloth-sized flannel "blankets" to take home to sleep with and wear throughout the day. Then, we can take those to his room, where we put them under his head or right next to him so he can smell us. Of course Eli jumped right on that bandwagon and claimed a cloth for himself. He's very excited and proud to have a cloth for Judah that smells like him!

Saturday, June 13, 2009

A lot has happened in the last 24+ hours. Seems like things never slow down for Judah - things are always changing. It's hard to keep up with...and exhausting. We have report from the Neonatologist that's on each day...and then, of course, every time we see Judah (2-3 times a day) we get updates from his nurses about how his day or night is going. I've never been so overloaded with information...it's medical school without the text books. Speaking of which, we had our crash course in Urology yesterday. I would have been completely fine never knowing the ins and outs of the bladder and kidneys and so on and so on and so on. And yet I now find myself to be quite knowledgeable about said body parts along with the "tubing" that connects everything. I wish it were good news. The VCAG (one of the tests he had yesterday morning) found 2 serious problems, one in his kidneys, the other between his bladder and...little boy part. The first is Reflux. It's a backwash of urine that goes to his kidneys. He's vulnerable to bladder infections; and, should infected urine get to his kidneys, kidney infections. Out of 5 grades, 5 being the worst, Judah is a 5. (I guess this little Stewart will never do anything halfway, huh?) There's nothing to be done about it now...which is a relief. He's on a prophylactic antibiotic to prevent infection; and as long as they can keep him infection-free, then at age 5 he can undergo a surgical procedure to correct the problem. If he struggles with infections...then we cross that bridge when we get there. The other problem is the obstruction. He developed valves that act like parachutes when he urinates. Those little suckers balloon up when Judah urinates, preventing it from being able to come out. He's been on a catheter since day #2, which is working for now; however, this needs to be addressed soon. Probably next week. The Urologist can insert a telescope into the...little boy part...to break up the valves. Except that with Judah, whose nakey is officially termed "micro" because of hormone problems (again, for another blog), that probably won't be possible. The temporary alternative is to make an incision below the belly button, redirect the bladder to that point, and then place a bag on the outside of his belly to catch the urine. At a year old he could then undergo the telescope procedure. Yesterday this information was so overwhelming, discouraging, and daunting. We were devastated again. And we grieved...again. How can one little body handle so much? How can this be our baby? And WHY did God choose to glorify Himself through Judah in this way? Many tears. I wanted to scream. Many more tears. I wanted to believe that sometime, somewhere along the way, somehow something went horribly wrong. But, believing what I do about God, I had to accept and believe that instead, this was somehow horribly right. This is still part of His plan. Which led me to ask WHY. God met us. God carried us. God gave us an evening with Judah. And He loved us and ministered to us while we tried to do the same for our son. My dear friend left an envelope for Judah filled with cards that have God's promises written on them. Promises for Judah. She visits him and reads them to him and prays with him. Her envelope was for us last night. I could write a whole post about 2 Corinthians 12:9-10. That's pretty much where we left off last night. We came home encouraged. And then we started a new day today. More about that later.

Friday, June 12, 2009

From the mountain back down to the valley

Overall yesterday was a very good day for Judah; however, it did end on a disappointing note. The report we got from the Neonatologist around noon was extremely positive and encouraging! She said that Judah's PPHN (the Hypertension) was no longer an issue and his lungs were finally healing very nicely! Judah's BP had remained stable, with no help from the Epi. or Dopamine for 48+ hours, and they were slowly weaning him down on the Hydro Cortisone. (He will remain on a smaller dosage to replace his Cortisol hormone, but the hormone issues are for another blog.) All of his O2 levels were looking great, and she anticipated that he would be able to come off the vent completely within the next 48 hours! And what's the real beauty (to me, anyway) of him coming off the vent? That's when I finally get to sit in the recliner in his room and "kangaroo care" my little Joey! (A baby kangaroo...ya know.) I will be able to hold him skin-to-skin for up to 4 hours!! My arms get jittery just thinking about it! The nurse explained to me that with most kids, Mom is able to hold them while they're still on the vent. But, as we all know, Judah is just extra special. Because of his cleft palate, the vent can more easily come out - he doesn't have the roof of his mouth to hold it in place. So, I'm just waiting a little longer to take that boy in my arms and...breathe the hugest sigh of relief ever!!! The disappointment came later in the day when the dr. called us at home with an update. Ever since Judah came off the oscillator he's been tremoring. What they thought at first was just jitters from him coming off of it, the dr. later determined were quite possibly small seizures. They don't know why. Could be an infection introduced somehow through his cord tubing, catheter, or vent tubing. Could be due to the enlargement of his ventricles putting pressure on something in his brain. Could be because he's still just a sick little boy...on many levels. They gave him a seizure medication last night that also heavily sedated him. It was sad to see him not moving again. But the seizing stopped. So, they don't know if that's because it is seizures, or because he was just so sedated. Gr. As I write this Judah is getting his MRI...maybe that will solve this puzzle. The rest of his day includes the Urologist's dye test in his bladder and the removal of his cord tubing...which will then mean an increase in breast milk feeds:) A big day for such a tiny cub. But he's our champ. He's hanging in there. And I continue to hold on to - cling desperately, really - the image of Jesus holding my baby when I can't. I tell him that all the time. "Jesus is holding you, Judah, even when Mommy and Daddy can't."

Thursday, June 11, 2009

Some thoughts...

I'm supposed to be taking a nap right now. I am so busted when Jared reads this! My body is exhausted, but my mind and heart are so full right now that trying to sleep seems a little ludicrous right now. Maybe if I just get a few thoughts down I'll be able to turn off my mind for a bit and get some sleep. Today is another good day for Judah. We had a great report from the dr. this morning, and we are so encouraged by and overjoyed at his progress! I'm so full of emotions that I don't always know where to go with them...so this is usually where I end up. I've been encouraged by 2 verses today that were sent to me in cards. I wish I could say that I found them. But my time with the Lord has changed over the last week. It's gone from time spent in His Word or in worship at church or in my car to desperate and impassioned pleas for help. I have had moments when I really believed that His grace was not enough to carry me through to the next moment. I don't know how He does it, but somehow He did carry me through, and I made it to the next moment. Some moments I believed that I would completely crumble and not be able to stand up under the weight of the burden I carried for my son. But again God somehow help me up, lifted the burden, and enabled me to stand. I can only continue to conclude that regardless of what I face each day, God's grace really is sufficient for me that day, that hour, that moment and on into the next. Knowing this, having tested this and experienced it, gives me confidence to believe that should God decide to bring Judah Home to be with Him sooner than later, I will have the grace I need to endure, and the Hope to carry on. Psalm 30:11-12 says "You turned my wailing into dancing, you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O Lord, my God, I will give you thanks forever." We're in the midst of the wailing, but God has given us many moments over the last couple days of dancing, too. We have experienced intense joy, we have sung praises to Him, and we do thank Him. We'll experience this verse in many ways many times over in the days, months, and possibly years to come with Judah. But I look forward to the day when this verse becomes fully true, and we are Home, Judah is whole, and we are truly dancing, singing, and praising for the first time and for the rest of time! Isaiah 46:4 says "Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you." This is so precious to me. The pressure is off. Judah is solely God's responsibility, loaned to me to love, treasure, and enjoy for a time. He is God's. The Lion of Judah's little cub. And I am His responsibility as well. He WILL sustain me. He WILL carry me. He WILL. That's all for now. Oh wait, one more thing. Jared reminded me that in a blog a couple months ago I said that we had decided we wanted God's glory more than anything. If he was born healthy and whole, or if he was born "special" - whichever brought God the most glory, that's what we wanted. We now have the answer to that question. Somehow Judah's life will bring more glory to the Lord broken and vulnerable than it would have whole and strong. I don't understand that. But I choose to believe that God sees the big picture. He knows what is best. He loves me and Judah beyond comprehension. He is GOOD - a good that is defined by Him, not me. Alright, that's really it now. I'm going to bed now...Dear.

Wednesday, June 10, 2009

Another Good Day

Today was the second day in a row of "good" for Judah. He had a good night last night and continued to slowly and steadily improve today. I think we're really finally beating this Persistent Pulmonary Hypertension! He's been on an oscillating ventilator since Friday. He started on a different and newer vent right after birth on Thursday but he wasn't well enough to stay on it. The vent didn't work effectively enough for him. It just didn't open his constricted lungs and lung vessels enough to allow all of the CO2 to be expelled from his body. So, they moved him to this other vent that breathed 400+ breaths of air/min. into his tiny body, forcing his lungs to remain open all the time so he could have the blood flow he needed. This also helped bring relief to his heart which was working overtime, and, with the help of blood pressure medication, his blood pressure was finally able to stabilize. Anyway, the goal was always to get him off the oscillator (which jarred him constantly like a strong vibrator) so that he could go back to the other vent and then begin testing for some of his other health problems that have developed. Today we got the call. He was finally well enough to try moving him back to the other vent! "Well enough" means that he's finally been weaned off his blood pressure meds (Epinephrine & Dopamine), they've been able to lower his dosage of Hydro Cortisone, all of his O2 levels are good, his BP is stable, and they've been able to wean him almost completely from the Nitric Oxide that was also going through his O2 tube to relax his vessels. Big changes. Good changes. So, this afternoon, just before 1:00, they moved him back to the original vent...and now he can just be still. So far he's responding very well to the vent. The first 12 hours are the "honeymoon period" that will tell us whether or not he'll be able to stay on this one. By tomorrow morning we'll know. He looks good. He's finally moving his arms and legs. He's so amazingly sweet and precious. If he remains stable throughout the night tomorrow will be another big day for him. The doctor believes he will be ready for some significant tests tomorrow. But I'm not going to think about that right now. It makes me anxious and scared. And it's not tomorrow. I've got enough grace for the rest of this day. And that is enough.

I can't wait to smell that precious newborn smell on Judah without any hospital on him.

Made for Judah

Just had to write down that yesterday at 3:00 Judah received his first breastmilk feed! 5 ccs of that wonderful "medicine" designed just for him by his Father who loves him! This is medicine for me as well:) Every 3 hrs. he gets 5 ccs. He had a good, quiet night last night, continues to slowly improve in his lungs, and is tolerating his milk just fine! PTL!!

Tuesday, June 9, 2009

A Beautiful Day

I'm 30 today. I had all these fun birthday festivities planned and was actually looking forward to this day. Well, there's a verse in Proverbs that talks about how a man can make plans, but it's the Lord that determines the course of those plans...basically. Anyway, He determined that Judah's birthday would be on the 4th, the day my festivities were to begin! Since then I haven't even wanted my birthday to come today. What kind of celebration can happen when part of my family - the tiniest, most vulnerable part - is so sick? I guess it's a testimony to God's grace for each day that I am having a very good day. God has used His Body here in Omaha and from all over the map to minister to and encourage me today. But He's also given me many other gifts besides. I got birthday cuddles in bed this morning from Ezra & Lydia. I got birthday cards practically thrown at me from my kids as soon as I got out of bed (thanks to the love of my life for keeping said kids quiet with birthday card materials so I could sleep in). I had a very yummy breakfast - Egg McDaddy's. I had a date with the most handsome, and most sought after bachelor resident of Children's! It was the perfect way to spend the rest of my morning. On the way to the NICU I had a great worship time with the Lord. (I really believe those songs on the radio were for me this morning.) Then I had an hour to spend with my little darling. It was a gift to have that time with him, mostly to myself. His nurse left us alone for the most part, only coming in as necessary. After saying good morning and talking to him for a few minutes while I held his hand and squeezed his toes (for Daddy), I sat down next to him and read to him. His top was down at the time, so I had one of the arm "windows" open so he could hear me read to him. I read him his Psalm. I looove Psalm 139 in The Living Bible! Anyway, I told Judah that Psalm 139 - the part about God forming him in the womb, etc. - was about him, for him. God didn't make a mistake, but knit every intricate tiny part of Judah together. I told him that he was made in the image of God, and that God loved him so much that He made him for Him and for His glory. I said that in a perfect world he would be different; but that he's perfect in this world. But when we get to the Real World, he will be perfectly perfect. We will wait eagerly for Jesus to come and make him whole, with no more health problems, no more pain; but he is so beautiful and made so perfectly in God's image that we rejoice and praise God for allowing us to see His glory manifested through Judah's tiny new life. It was so good to talk to Judah and touch him. Later I was able to help with his cares again. Of course at that point he had his top up, which allows me more access to him. I kissed his big toe, his hand, held both of his hands in mine (boy, what a blessing to have those iv's removed from his hands!) and squeezed his toes again. Oh, he's so beautiful and precious! Sometimes my arms physically ache to hold him...but let's not go down that road today. Judah had a good night last night, and today is a good day. The right numbers are down and the right numbers are up. He still fluctuates constantly, but the big picture is good. We got report from the Neonatologist through a voicemail, but it was a good report! She believes that today Judah is turning a corner, and he is finally "on the mend"! The best news of all to me, though? They are going to start him on tiny breastmillk feeds!!! I can't wait to see that little feeding tube filled with the nutrition that God has designed for Judah! It's always so hard to say goodbye and leave him there, but that's another example of God's grace for each moment of every day. I have yet to actually keel over and drop dead from having to leave him! The rest of the day so far has been filled with happy surprises:) All kinds of birthday greetings from friends and family. A surprise visit from a dear friend who came bearing cupcakes and a present! And another friend dropped off a card with a Starbucks gift card - yummy! I got an "Edible Arrangement" delivered from another great girlfriend - oh my, yes! Chocolate-covered fruit to die for! And my favorite "life on life" sister in Christ, along with her husband, sent Jared and me a Flip video camera to take with us to the NICU so we can easily record Judah and send it via computer to all our family and friends. Man, we are so well cared for! And it's all because of Christ, what He has done for us, and how He ministers to us through His Body!

Zephaniah 3:17

Monday, June 8, 2009

Happy Birthday to Me!

One of these days I'm going to sit down and start from the beginning, recounting what our life with Judah has been like so far and what his little life has been like. But for now, I had to get down the best present I could get this year! Because of how sick Judah is our contact with him has been very limited. We can see him whenever we want, but when we touch him we have only been able to do so without stroking him or anything like that. Sometimes we can touch him but not talk to him at the same time, because it literally stresses him out. However, he's taken some baby steps today - thank You Jesus! - and for the first time I was able to help with his "cares"! I got to take his axillary temperature; "change" his diaper (it's really just a freshening up since he has a catheter and doesn't poop yet); and swab his mouth, gums, around his tongue, and around his ventilator tubes with the gel they use to moisturize and protect against bacteria. What a tremendous blessing and encouragement this was to me!! We're on an almost hour-by-hour basis with Judah's status and how he does during the day, so I know that this was very special, and tomorrow might be another hard day. But that just makes this an even brighter spot in the process right now. Thank You, Father, for Your gracious and precious gift to me tonight!

Judah Matthew, June 4 2009

My beautiful, precious, perfect boy is finally here! Our little champ! He's fighting, fighting...we're rejoicing and lamenting...believing that Jesus is holding him when we cannot...holding onto Hope. I don't have much energy to write more now, but I had to say that today I got to kiss my darling's toes. And I got to smell his beautiful baby smell as I leaned over to kiss his forehead. What a gift today.

Thursday, June 4, 2009

My Eager Beaver

Well, it appears this little boy is a little more eager to arrive than I thought! I saw my midwife this morning for "the strip", and she told me my membranes had already started separating from the uterine wall. While I'm not exactly sure what that means, I do understand this: 3 1/2 cm, 80% effaced, -1 station. At 37 weeks on the dot. I'm not sure I'll make it through the night! But thank You, Lord, that You are in control of every second of this pregnancy, You have chosen Judah's birthday, and You are with me today. The uncertainty that awaits us just beyond meeting this little one is a heavy burden, but the anticipation of finally meeting him is more than enough to overshadow that weight! Can't wait!!

Monday, June 1, 2009

The reality is...

My son is special. I think the reality of that is starting to really sink in. I keep envisioning seeing him and holding him for the first time...but the picture is different this time around. My little boy's upper lip is split and there are 12 fingers, not 10. And who knows how big that head will look on such a little body! (Although, in my imaginings, that head is always covered in red hair!) Today we added some more reality to the picture. We met the charge nurse & toured the NICU. It was good. Didn't make anything easier, but it was good. I asked lots of questions, and got lots of information and lots of, "we'll have to see how he presents" or "we'll need to wait until we know some test results". We also saw one of the "rooms" - a small space with a small fridge, a recliner, a counter, a bulletin board and white board for notes and pictures/drawings from the kids, all kinds of equipment, and a privacy curtain. As I was processing everything later, I kept thinking that my baby was going to be in that special bed like one of those "sick" babies...and then it finally dawned on me that he is one of those babies. It's so surreal. I just can't seem to fully wrap my mind around all of the information that we have about Judah and make it seem real. I know it is, but I just can't imagine what this is going to be like...besides really hard and really sucky and really life-changing. Besides today, though, I've had a sort of reprieve from some of the sadness and anxiety, because the excitement of being so close to having him here is overriding that. I just can't wait to see him!!

God has also been using music from the last 3 Sunday mornings to comfort and encourage me. He's brought me back around from some dark days to bask in the light of Who He is! He's used these songs to remind me that He is Who He says He is, He never changes, and all things are for His glory; because of Him I am changed, and His love, grace, and faithfulness will never fail me! I'm thankful for these days, because I know that this is a time to "store up" these truths and "warm fuzzy" feelings for the hard days ahead. The roller coaster still rides on. I feel confident in the Lord and in these truths, but then at the same time I still battle anxiety and fear. It's a weird thing to experience such contrary emotions at the same time on a regular basis. I wonder if and when this ride will ever end.

I saw my midwife on Friday and things are moving right along! At 36 weeks & 1 day I was 1+cm, 80% effaced, and Judah's head was almost at 0 station. (I guess normal at 37 weeks is only 1 1/2 cm and 50% effaced, but that's never been my norm, so I guess I'm right on schedule for me!) It was exciting to hear that I had already started progressing. Today at Dr. Bonebrake's Judah looked stable. His head stayed at 2 weeks ahead of schedule, so no change there - thank You, Jesus! Dr. B. would love for me to deliver around 37 1/2 to ensure a safe vaginal delivery (although I already know there's no guarantee there), but he'll let me go as long as 39. On Thursday morning (I'll be exactly 37) I see the midwife again, and he sent an order over to her to strip my membranes to help things continue to move forward. The last time I had stripped membranes at 37 weeks, 2 cm, and 80% effaced I had a baby 2 1/2 days later. Am I ready to have a baby this weekend? Uh, no!! Would I love to have a baby this weekend? Absolutely!! Like I said, I can't wait to have this baby boy in my arms. I'm scared to death and don't want to walk this road of pain and uncertainty with him; but this baby is the one that God created specifically for us and nothing can change the fact that I am madly in love with him and he belongs with us!