Judah had another weight check on Wednesday. 8 weeks old and a whopping 7 lb. 11 oz! He's such a little peanut, and still so "newborn". He still has a tiny cry, too. Everyone we run into just thinks he's the cutest. So adorable. Oh, how precious. What a doll. Of course I wholeheartedly agree! His growth looks good; an average of 4 oz. a week. However, we've added another specialist to our already long list. Judah will be seeing a Neuro-Opthamologist in 2 weeks. He's still not focusing on anything or tracking movement. I'm not really anxious about it, but I am kinda sad. It's so special and exciting that first time your baby really looks at you and follows your movement. You make that connection, and then before long, that little one is looking at you and smiling! I've been looking forward to that moment and that first real smile, but it hasn't happened. Judah looks over my shoulder or past me, always with a vacant stare. I love seeing his dark blue eyes and all of the facial expressions he makes, but it's hard not to get any response from him. The new specialist will run a lot of tests to see if his brain is receiving the signals from his eyes when he sees something, etc. We know that his brain didn't develop properly, and we anticipate developmental delays, but it's a little scary to actually be facing something right now that has the potential to be devastating. I think my brain won't allow me to think in those terms, though, because so far I've been ok. Still just taking it a day at a time.
Had to go to Childrens this morning for more blood work. Our pediatrician added some labs to be checked, too. Wanted to check his hormone levels to make sure he's getting the right doses. Judah isn't very alert. Super sleepy, way laid back, not real responsive. Low thyroid or cortisol levels can cause that. I'm hoping it's a low level and not something related to his syndrome. The Lord knows, and I trust Him to give me the grace to handle any and every result we get from tests and labs. Regardless, I'm so thankful for Judah and the gift that he is to our family. Tiny feet, the sweetest face, so cuddly.
Friday, July 31, 2009
Sunday, July 26, 2009
Boys Town
On Friday morning we took Judah to the Craniofacial clinic at Boys Town National Research Hospital to be seen by the craniofacial team. They're one of the best teams in the nation! We praise the Lord again for the amazing care and opportunities Judah has here; but it was an exhausting morning. We arrived at 8:15, met with 8 different specialists, and were finally ready to go at 12:40.
Audiology - This was Judah's 1st stop. He had 2 tests done on his ears. One to check for fluid, the other to check his hearing. He has fluid in his ears behind the drums, and he failed the hearing screen in both ears. (He had passed his newborn screen.) A little disappointing, yes, but to be expected because of his cleft palate. He'll have another hearing screen at a later date.
Nurse - This woman is wonderful, and when it comes to feeding a CL/CP kid, she's the specialist! She was also very caring and compassionate, she made sure all of Judah's appointments with the other specialists went smoothly, and she checked with us several times to see if we had questions or to make sure we were doing o.k.
Dental - We got quite an education at this stop! There are all kinds of "teething" possibilities and scenarios that we may face with Judah. Extra teeth, not enough teeth, teeth showing up in the wrong places (i.e. an eye tooth in the back instead of the front). Fascinating fact: a dentist can pull an extra tooth, or one coming through in the wrong place, save it, and actually put it back in another place! Needless to say, Judah will have lots of visits to the dentist. Thank the Lord for a good pediatric one! (The orthodontist will come later...)
Speech Pathology - This was basically an informative meeting. It's so interesting how God created our palates to enable us to speak properly. Judah will get regular speech therapy later on.
Otolaryngology - The ENT specialist. Judah will have tubes placed in his ears when he gets his lip repaired. Another disappointment, but unavoidable. The fluid in his ears will cause hearing loss if untreated, and that would also effect speech development. I wish we didn't have to do the tubes, but I'm so thankful that there's something in place to take care of the fluid and save his hearing and speech. And at least this surgery will be painless!
Pediatric Geneticist - Judah has a great one! Jared & I both really like her, and we'll be seeing her at the Childrens Developmental Clinic (CDC) that Judah will be a part of as well, so we're thankful for that! She calls Judah a little mystery man, and says he's making her think. She believes that Judah has a syndrome, one cause for all the health problems he has, but she has yet to find it. I'm not too worried about it. It would be nice to know what it is so we could know better what to expect down the road, and how to better anticipate Judah's needs later on...but knowing wouldn't really change anything. We're still going to do our very best for him, taking it just one day at a time. We're still going to love him to the fullest no matter what. And bottom line, GOD KNOWS. There's no mystery there. I think ignorance may be a blessing in this case, too. Not knowing about something severe that could be coming... Worrying about possible things that could happen with a known syndrome; but they might not even happen... Taking it a day at a time, and having the opportunity to be surprised by his progress... Just being able to enjoy Judah as Judah, and see all the potential he has - no labels. We'll know the name of his syndrome eventually, but that's in God's timing. In the meantime we watch for developmental milestones/delays. We meet with our genetics specialist periodically. We wait for test results. A few weeks ago Judah had a Micro-ray test done on his chromosomes. It spliced his chromosomes into 44,000 pieces, then tested the DNA in those pieces. That test came back normal. Since that time another test has come out. (She said the field of genetics is so young that it changes and new tests, etc. come out virtually every day.) It splices the chromosomes into 244,000 pieces - the mind reels - and tests the DNA in those pieces. Because of hospital policy, she needs pre-approval from Medicaid to run this test. She doesn't think they would give it. So, she was going to talk to the director of the lab about running the test on Judah's chromosomes for free, because he's a special case and a good candidate. (Well, we already knew he was special!!)
Plastic Surgery - This is the dr. that made me cry. The recovery from the lip surgery includes an overnight stay, 3 weeks in elbow restraints so Judah can't touch his lip, and 3 weeks without any nippling - no nursing, no bottle, no pacifier. We feed him with a tube and a syringe. The palate recovery includes another stay, 3 weeks in elbow restraints, and 6 weeks without nippling. Surely there is a surgeon somewhere that believes it's healthy and beneficial to allow the infant to nurse after these repairs! I just have to find him, and then present my case to the amazing surgeon that Judah has here. (I've never met him, but Jared loooves him and says he must be somebody's grandpa! He's also the best surgeon in this region, and performs 90% of the repairs here.) The lip repair normally comes around 3 mo. of age. But the ENT dr. said ideally tubes wouldn't come until at least 5 mo. About 1/4 of the kids that get tubes sooner have to have them redone. Jared asked if we could just wait until at least 5 mo. and have the repair done then. The dr. said no one had ever asked that before. Most parents are so eager to get the repair done, that they just do everything at 3 mo. (According to the surgeons at this clinic.) Well, we're NOT most parents. I'd much rather wait. There are several reasons. The biggest being that I'm not at all eager to "fix" Judah's beautiful little face. We'll be losing a part of him. There are faces that he makes that are unique to him because of that cleft - so precious & adorable - and I don't want to lose that. So, we'll just do our best to put off the inevitable.
Pediatrician - Judah's final stop was with the pediatrician who is also the director of the clinic. He looked Judah over, did an overview/wrap-up of everything, and made one final recommendation: that Judah have his repair surgeries done at Childrens because of the post-op care that he'll need for his other conditions. He's already in the system there, they know him, we know them...it makes sense.
After we left the specialists all got together to discuss Judah's and the 4 other kids' cases that were there that morning. In 3-4 weeks we'll be getting their report and plan for Judah and will go from there. I'm glad for this time to wait. It gives us time to process all of this and start making mental shifts to prepare for his upcoming surgeries. This is a lot. This would be a lot if a cleft lip & palate were the only things we were dealing with. I hate that Judah has to go through these things. I'm thankful that he won't remember. I believe that Jesus will grieve with us and comfort us as we cry over Judah while he's hurting and recovering. He'll carry us through. And I believe that this is all a part of the story that God is writing for Judah. This is just one chapter. I don't know why, but God knows why this is necessary for him in this life; and He knows how He will receive glory from writing this chapter, instead of ommiting it. We're committed to His receiving glory regardless of the cost...but oh how it hurts and will hurt. BUT GOD...
"Oh! His grace and goodness toward us are so great, that without great assaults and trials it cannot be understood." -Martin Luther
Audiology - This was Judah's 1st stop. He had 2 tests done on his ears. One to check for fluid, the other to check his hearing. He has fluid in his ears behind the drums, and he failed the hearing screen in both ears. (He had passed his newborn screen.) A little disappointing, yes, but to be expected because of his cleft palate. He'll have another hearing screen at a later date.
Nurse - This woman is wonderful, and when it comes to feeding a CL/CP kid, she's the specialist! She was also very caring and compassionate, she made sure all of Judah's appointments with the other specialists went smoothly, and she checked with us several times to see if we had questions or to make sure we were doing o.k.
Dental - We got quite an education at this stop! There are all kinds of "teething" possibilities and scenarios that we may face with Judah. Extra teeth, not enough teeth, teeth showing up in the wrong places (i.e. an eye tooth in the back instead of the front). Fascinating fact: a dentist can pull an extra tooth, or one coming through in the wrong place, save it, and actually put it back in another place! Needless to say, Judah will have lots of visits to the dentist. Thank the Lord for a good pediatric one! (The orthodontist will come later...)
Speech Pathology - This was basically an informative meeting. It's so interesting how God created our palates to enable us to speak properly. Judah will get regular speech therapy later on.
Otolaryngology - The ENT specialist. Judah will have tubes placed in his ears when he gets his lip repaired. Another disappointment, but unavoidable. The fluid in his ears will cause hearing loss if untreated, and that would also effect speech development. I wish we didn't have to do the tubes, but I'm so thankful that there's something in place to take care of the fluid and save his hearing and speech. And at least this surgery will be painless!
Pediatric Geneticist - Judah has a great one! Jared & I both really like her, and we'll be seeing her at the Childrens Developmental Clinic (CDC) that Judah will be a part of as well, so we're thankful for that! She calls Judah a little mystery man, and says he's making her think. She believes that Judah has a syndrome, one cause for all the health problems he has, but she has yet to find it. I'm not too worried about it. It would be nice to know what it is so we could know better what to expect down the road, and how to better anticipate Judah's needs later on...but knowing wouldn't really change anything. We're still going to do our very best for him, taking it just one day at a time. We're still going to love him to the fullest no matter what. And bottom line, GOD KNOWS. There's no mystery there. I think ignorance may be a blessing in this case, too. Not knowing about something severe that could be coming... Worrying about possible things that could happen with a known syndrome; but they might not even happen... Taking it a day at a time, and having the opportunity to be surprised by his progress... Just being able to enjoy Judah as Judah, and see all the potential he has - no labels. We'll know the name of his syndrome eventually, but that's in God's timing. In the meantime we watch for developmental milestones/delays. We meet with our genetics specialist periodically. We wait for test results. A few weeks ago Judah had a Micro-ray test done on his chromosomes. It spliced his chromosomes into 44,000 pieces, then tested the DNA in those pieces. That test came back normal. Since that time another test has come out. (She said the field of genetics is so young that it changes and new tests, etc. come out virtually every day.) It splices the chromosomes into 244,000 pieces - the mind reels - and tests the DNA in those pieces. Because of hospital policy, she needs pre-approval from Medicaid to run this test. She doesn't think they would give it. So, she was going to talk to the director of the lab about running the test on Judah's chromosomes for free, because he's a special case and a good candidate. (Well, we already knew he was special!!)
Plastic Surgery - This is the dr. that made me cry. The recovery from the lip surgery includes an overnight stay, 3 weeks in elbow restraints so Judah can't touch his lip, and 3 weeks without any nippling - no nursing, no bottle, no pacifier. We feed him with a tube and a syringe. The palate recovery includes another stay, 3 weeks in elbow restraints, and 6 weeks without nippling. Surely there is a surgeon somewhere that believes it's healthy and beneficial to allow the infant to nurse after these repairs! I just have to find him, and then present my case to the amazing surgeon that Judah has here. (I've never met him, but Jared loooves him and says he must be somebody's grandpa! He's also the best surgeon in this region, and performs 90% of the repairs here.) The lip repair normally comes around 3 mo. of age. But the ENT dr. said ideally tubes wouldn't come until at least 5 mo. About 1/4 of the kids that get tubes sooner have to have them redone. Jared asked if we could just wait until at least 5 mo. and have the repair done then. The dr. said no one had ever asked that before. Most parents are so eager to get the repair done, that they just do everything at 3 mo. (According to the surgeons at this clinic.) Well, we're NOT most parents. I'd much rather wait. There are several reasons. The biggest being that I'm not at all eager to "fix" Judah's beautiful little face. We'll be losing a part of him. There are faces that he makes that are unique to him because of that cleft - so precious & adorable - and I don't want to lose that. So, we'll just do our best to put off the inevitable.
Pediatrician - Judah's final stop was with the pediatrician who is also the director of the clinic. He looked Judah over, did an overview/wrap-up of everything, and made one final recommendation: that Judah have his repair surgeries done at Childrens because of the post-op care that he'll need for his other conditions. He's already in the system there, they know him, we know them...it makes sense.
After we left the specialists all got together to discuss Judah's and the 4 other kids' cases that were there that morning. In 3-4 weeks we'll be getting their report and plan for Judah and will go from there. I'm glad for this time to wait. It gives us time to process all of this and start making mental shifts to prepare for his upcoming surgeries. This is a lot. This would be a lot if a cleft lip & palate were the only things we were dealing with. I hate that Judah has to go through these things. I'm thankful that he won't remember. I believe that Jesus will grieve with us and comfort us as we cry over Judah while he's hurting and recovering. He'll carry us through. And I believe that this is all a part of the story that God is writing for Judah. This is just one chapter. I don't know why, but God knows why this is necessary for him in this life; and He knows how He will receive glory from writing this chapter, instead of ommiting it. We're committed to His receiving glory regardless of the cost...but oh how it hurts and will hurt. BUT GOD...
"Oh! His grace and goodness toward us are so great, that without great assaults and trials it cannot be understood." -Martin Luther
Thursday, July 23, 2009
The First Follow-up
Judah had his first follow-up appointment this morning. He saw the neurosurgeon to have his head re-checked. No outward signs of inward pressure because of his enlarged ventricles. No abnormal head growth. The dr. ordered a quick scan for this afternoon to confirm that Judah's ventricles haven't changed at all. If they've remained the same - stable - like he thinks they have then we don't have to come back! If there's been a change then we'll have to come back for more follow-up. I think we can safely say that we can cross brain surgery off Judah's list, though! Praise the Lord!! The neurosurgeon believes that Judah's ventricles will always be enlarged simply because of the way his brain developed. Well, we'll just add that to the list of things that's makes him so special:)
Monday, July 20, 2009
My Post-its
Last night we had our first scare with Judah. It turned out to be nothing, but it was scary at the time. Judah had his hydro cortisone at 10 and then ate at 11. In the next 15 minutes he threw up everything he had eaten. Vomiting is a big deal for Judah. That's when we start talking about dehydration and having to inject him with his hydro cortisone. So, right away my mind jumps to these possibilities...and the fear that this might be the time we make our first trip to the emergency room. I checked in Judah's cortisol replacement therapy booklet to make sure I did the right thing, but decided to double check with a call to the endocrine clinic. The on-call doctor called me back a few minutes later. I gave Judah his hydro cortisone again, and then it was time to wait. If he throws up again within 30 min. he needs to have an injection. If he's able to keep it down for 30 min. then we just watch him, and he may need to be stress dosed for the rest of the day. It was already almost midnight. I was feeling very anxious; my stomach was tied up in knots. I told Jared how I was feeling, and also told him that I was just so tired, but didn't think I'd be able to get any sleep. (I don't think I handled this situation very well emotionally. But that's the way it was, and hopefully, as we have more of these experiences and I do actually have to stress dose and/or inject Judah, it will get easier and I won't be so anxious. Anyway...) After a few minutes we climbed into bed, and Jared had me come over by him so we could "spoon". Amazing how God created closeness in marriage in such a way that you can actually draw strength and comfort from physical touch. Just being close to Jared was incredibly comforting and encouraging. And then Jared prayed. For Judah. For me. For us. That was the "icing on the cake". I was able to fall asleep quickly, and thankfully Judah did fine the rest of the night. I didn't even need to stress dose him later on. The next morning I got up to go to the kitchen, but saw a little yellow post-it at eye level just inside the doorway of our room. Jared had written 2 Cor. 12:9 on it. I left our room, and as I walked past the computer I noticed another one stuck to the frame above it: Ps. 34:8. I went into the kitchen and there was a post-it on the cupboard by the sink with a favorite quote from Martin Luther. On the cupboard where I keep my pumping supplies was James 1:17. A favorite quote from Larry Crabb hung on the shelf that's right above the chair I sit at to eat breakfast. I went to the bathroom, and there on the mirror was Lam. 3:22-23. Later, I sat down on the couch to read stories to the kids, and on the wall above the couch was another post-it with a quote from C.S. Lewis. And when I helped the kids brush their teeth I found one on the mirror in their bathroom: Ps. 34:18. Jared wrote out all these notes and stuck them in places all over the house where I would be sure to see them! They're still there - of course! They comfort, challenge, and encourage me all day. They remind me that this life that God has chosen for us, that we have chosen to follow Him in, is hard and painful; BUT GOD is good, is our Refuge, is faithful, is generous, is our strength. He won't "fix it", but He will give us something better - HIS good, and a deeper, lasting intimacy with Him.
**He also gave me an amazing soul mate to walk this road with.
**He also gave me an amazing soul mate to walk this road with.
Thursday, July 16, 2009
The journey is theirs...
More good news! Judah was 7 lb. 4 oz. at his weight check this morning! Funny to think that Lydia weighed that when we brought her home, and Ezra was still bigger at birth. But at least we're moving in the right direction. The NG tube that I pulled out on Tues. (because we just weren't using it) stays out! We're increasing his volume to 70ml every 3 1/2 hrs. and we can wait 2 whole weeks before we have to go back:) By then maybe he'll fit into his clothes!
I've been thinking about this journey that we're on. Of course it's Judah's. It's mine and Jared's, too. A journey not only with Judah, but even more with Christ; 
growing in Him, knowing Him better, and learning what it means to be like Him. But what's become more and more apparent to me is the fact that this journey also belongs to my other 3 kids. It looks different for them, but it is no less a part of their stories than it is ours. I am eager to see how God uses Judah to change Eli's, Ezra's, and Lydia's lives. They will not be the people they would've been without Judah; they will be better. I believe that they will grow up to be compassionate, sensitive, protective adults, accepting of others; especially those with special needs. I believe they'll learn to
"cheer for the underdog", and be advocates for those who are left behind or ridiculed. I am eager to watch them grow up with Judah, "practicing" all of these qualities on him first. My kids are going to be very special big kids, teens, and adults; good friends, caring spouses and parents - more so than they ever could be without knowing and caring for Judah. So, while I never would have asked God to give us a child with special needs, I'm thankful that He did for my other 3. I'm thankful for other reasons too...but today it's about my kiddos:) 
growing in Him, knowing Him better, and learning what it means to be like Him. But what's become more and more apparent to me is the fact that this journey also belongs to my other 3 kids. It looks different for them, but it is no less a part of their stories than it is ours. I am eager to see how God uses Judah to change Eli's, Ezra's, and Lydia's lives. They will not be the people they would've been without Judah; they will be better. I believe that they will grow up to be compassionate, sensitive, protective adults, accepting of others; especially those with special needs. I believe they'll learn to
"cheer for the underdog", and be advocates for those who are left behind or ridiculed. I am eager to watch them grow up with Judah, "practicing" all of these qualities on him first. My kids are going to be very special big kids, teens, and adults; good friends, caring spouses and parents - more so than they ever could be without knowing and caring for Judah. So, while I never would have asked God to give us a child with special needs, I'm thankful that He did for my other 3. I'm thankful for other reasons too...but today it's about my kiddos:) 
And just so everyone else knows
how blessed Judah is..... Today he had a little bit of a "debut". We met Jared and some high schoolers at Hy-Vee for lunch. First time with Judah. I wasn't sure if any of the students would ask about his cleft, or even notice. Judah was in the sling, so they couldn't really see him; but towards the end I gave him to Jared so he could show off his little Jr. JStew. About a minute later Eli very proudly declared that Judah has extra little fingers! I love it! My kids don't see anything weird or odd or especially different about Judah. They love him so much just because he's their baby brother! And they're so proud of him!
There's not a hint of embarrassment or hesitation when it comes to Judah's birth defects - just pride and affection. And speaking of those little fingers, Ezra counts Judah's every time he holds him. Always checking to make sure there's still 6...on each hand:)
how blessed Judah is..... Today he had a little bit of a "debut". We met Jared and some high schoolers at Hy-Vee for lunch. First time with Judah. I wasn't sure if any of the students would ask about his cleft, or even notice. Judah was in the sling, so they couldn't really see him; but towards the end I gave him to Jared so he could show off his little Jr. JStew. About a minute later Eli very proudly declared that Judah has extra little fingers! I love it! My kids don't see anything weird or odd or especially different about Judah. They love him so much just because he's their baby brother! And they're so proud of him!
There's not a hint of embarrassment or hesitation when it comes to Judah's birth defects - just pride and affection. And speaking of those little fingers, Ezra counts Judah's every time he holds him. Always checking to make sure there's still 6...on each hand:) Monday, July 13, 2009
Happy Anniversary
Jared and I celebrated our anniversary last month. 9 years. God has packed a lot into those 9 years. Seems like we could've celebrated our 20th because of all the Lord has taught us and brought us through. He used each trial and walk through the fire to prepare and equip us for the next trial. He continually pursued us, deepened and enriched our faith, and gave us a more passionate and intimate love for Him and for each other. And He even used all of that to prepare and equip us for Judah...whether I feel prepared or not. So, anniversaries have become pretty meaningful to us. It's an opportunity to celebrate each other, but also to celebrate all that God has done in and through and for us in the previous year. And it's a chance to renew our commitment to be faithful to each other and to follow God in the upcoming year - whatever He may bring. This year we celebrated a little differently. We got tattoos. Something we've been wanting to do for a long time. Jared got his on his wedding ring finger, symbolizing his lifelong commitment to me, but also to God. 
I got mine on my right index finger, the traditional Jewish wedding ring finger. That symbolizes my commitment to God, the beauty of being grafted in to the Jewish "family", and being the bride of Christ. The best part is what the tattoo says: "BUTGOD". The 2 most beautiful, significant, and phenomenal words in Scripture (in my humble opinion)! Any time those 2 words are used, something that can be described using one of those words happens. My favorite use is from Romans 5:8. BUT GOD demonstrated His love for us by giving up His Son for us while we were still His enemies (my paraphrase). We were vile and unworthy and haters of God; BUT GOD loved us. It's amazing. And these 2 words pretty much sum up my relationship with Him. I am weak, BUT GOD is strong and my strength. I am afraid, BUT GOD is always with me. My life is hard and scary and so uncertain, BUT GOD is good and faithful and gracious; BUT GOD will cause His good to come from the hard things in my life. I could probably fill up pages with all the "BUT GODs" that He is and does. So this mark that I bear on my finger - I can't get away from it. It's a constant reminder. It's a testimony to those that see it and ask about it. I'm so glad we did it.
I got mine on my right index finger, the traditional Jewish wedding ring finger. That symbolizes my commitment to God, the beauty of being grafted in to the Jewish "family", and being the bride of Christ. The best part is what the tattoo says: "BUTGOD". The 2 most beautiful, significant, and phenomenal words in Scripture (in my humble opinion)! Any time those 2 words are used, something that can be described using one of those words happens. My favorite use is from Romans 5:8. BUT GOD demonstrated His love for us by giving up His Son for us while we were still His enemies (my paraphrase). We were vile and unworthy and haters of God; BUT GOD loved us. It's amazing. And these 2 words pretty much sum up my relationship with Him. I am weak, BUT GOD is strong and my strength. I am afraid, BUT GOD is always with me. My life is hard and scary and so uncertain, BUT GOD is good and faithful and gracious; BUT GOD will cause His good to come from the hard things in my life. I could probably fill up pages with all the "BUT GODs" that He is and does. So this mark that I bear on my finger - I can't get away from it. It's a constant reminder. It's a testimony to those that see it and ask about it. I'm so glad we did it. Randomness
Well, I think maybe I'm finally turning a corner of sorts. I think this journey with Judah will have many, many corners (of all sizes), but I'm thankful for the little one that brought me to the computer this morning...even though there's laundry, floors, dishes, beds..... I don't feel as overwhelmed today as I did yesterday. There's still a never-ending list of "chores" for this Mommy, but that's true for any Mom really. But in regards to Judah I feel a little more...comfortable, I guess. I just need to get through today. And for today, there's pumping, feeding, comfort nursing, and meds. No doctor appts., no sickness, no shots, no clinics. And the list of chores can wait. The sun is shining. I got a shower. My bed is made. My teeth are brushed. The kids are playing happily. Veggietales is in the cd player. It's a beautiful day for a walk. Jesus loves me.
Judah has turned a corner, too. At his weight check on Friday we found out that he had gained 3 oz. since Wednesday! That's more than double what the dr. said he needed to gain - praise the Lord! Another big deal is that he's taking in everything he needs to orally! I haven't been using his feeding tube - yippee! He's doing really well on a schedule. I still don't like it, but am praying that it's temporary. Someday I'm hoping to be able to nurse him exclusively by cue.
And just because I don't want to forget this "fun" fact... We've applied for Social Security Income (Disability) for Judah. It's a long process and pretty involved. Our social worker from the NICU is responsible to get the SSI people the info. they need regarding Judah's stay there. The doctors/specialists that saw him, tests he had and who ordered them, equipment he used, meds/fluids they gave him and who ordered them - it's an exhausting list. She told us that in gathering the info. she had printed off 37 PAGES of medications/fluids alone! The mind reels.
Judah has turned a corner, too. At his weight check on Friday we found out that he had gained 3 oz. since Wednesday! That's more than double what the dr. said he needed to gain - praise the Lord! Another big deal is that he's taking in everything he needs to orally! I haven't been using his feeding tube - yippee! He's doing really well on a schedule. I still don't like it, but am praying that it's temporary. Someday I'm hoping to be able to nurse him exclusively by cue.
And just because I don't want to forget this "fun" fact... We've applied for Social Security Income (Disability) for Judah. It's a long process and pretty involved. Our social worker from the NICU is responsible to get the SSI people the info. they need regarding Judah's stay there. The doctors/specialists that saw him, tests he had and who ordered them, equipment he used, meds/fluids they gave him and who ordered them - it's an exhausting list. She told us that in gathering the info. she had printed off 37 PAGES of medications/fluids alone! The mind reels.
Saturday, July 11, 2009
Dependency
This has been a big part of my life lately, in different ways. After I became a mom (and my "mommy mentor" - you know who you are - built me up and encouraged me as Eli's mom) I grew very dependent on my mothering skills and instincts. On my ability to do what was best for Eli, because, as his mom, I was the expert on him. My confidence in my mothering skills grew with each child, and so did my dependence on said mothering skills. But something that frustrates me with Judah is this hit that my confidence has taken. I should be able to depend on my instincts - this is my 4th child for cryin' out loud! - but I feel like I don't even know Judah very well. Certainly not like I knew my other 3 at this stage in the game. So much is different...obviously. Judah is 5 weeks old and he's finally just home. I'm not able to breastfeed him for nourishment yet, just comfort, so he's at the breast a fraction of the time that he would otherwise be. He eats from a bottle, on a schedule. Totally new territory for me. He's on a lot of medication. There's so many things to watch for and be careful of with him. I want to feel confident and be able to depend on my gut, but I don't feel like I can trust my gut anymore. Frustration. Then there's this dependence on others. That's hard. Depending on others to help with the older 3; provide meals; intercede for us at the Throne. I would much rather give than receive, but I find myself on the receiving end these days. Take, take, take. The prayer part is actually a relief. I can't even pray for myself sometimes. Or get past 2-3 word prayers. So, knowing that 100s of people are praying for us, for Judah, is a beautiful part of this dependence. Then there's the ultimate dependence that should define my life. Dependence on Christ. This is the best kind, the most rewarding, the most fulfilling, the most refreshing, but also the hardest by far. Total dependence on Him would be rest. Resting on Him, trusting in Him, and simply walking by faith. Believing that He is perfectly in control and sovereign. And while I wholeheartedly believe these things, the practical application into everyday life escapes me...often. I have a sneaking suspicion that this will be a lifelong lesson that God will patiently and lovingly use Judah to teach me. It's a lesson we all need to learn anyway. It's just way "in your face" these days.
Thursday, July 9, 2009
Our new life
The reality of having a child with special needs is something you can never really be prepared for. How could you possibly prepare when you can't even know the extent of your child's needs or all of the "consequences" of his different conditions? Our journey with Judah has only just begun, but already our lives are forever changed. I've been asking "why". I don't know if there's really any point in asking that question. There will never be answers (this side of heaven) to the why's I'm asking...and yet that word comes to mind completely unbidden. And often. The more I find out about Judah's different health problems or conditions, and what to anticipate with some of them, the more I ask - "Why, God?" I think the question stems from feeling totally inadequate, fearful, and a sense of unfairness. I am not adequate to care for Judah. I am fearful of all that we are facing. I find it unfair that this is happening to my son and to me. I never wanted a 4th child. I certainly never wanted a child with special needs. The funny thing is, I want Judah. I'm in love with him completely. That's partly what makes this so hard. The more you love the more you hurt, right?
Medically speaking, Judah is...complicated. So complicated. So many of his systems are effected by his syndrome. The genetics specialist doesn't have a name yet, but she said that all of his birth defects can be linked to one cause. One point in time when something went "wrong". I use quotes because I still have to believe that God only does right. I question, but that doesn't change my core belief. I do wonder, though, what God saw in that point in time. He was there, He knows. Wow. He was there in that exact moment when one cell, or one tiny piece of a DNA strand, or whatever it was didn't form normally. I'm not sure if that's comforting or maddening. Maybe a little of both. I still believe that God knew in that moment that Judah would bring more glory to Him as the child He created Him to be, than as a "normal" kiddo. Anyway... Judah is special from head to toe. His brain developed abnormally. He will most likely have developmental delays. Whatever that means. His pituitary gland is underdeveloped and does not function. Major problem. That controls the hormones in your body, etc. He'll be on hormone replacement therapy for the rest of his life. Always going back to the endocrine clinic to be monitored and have meds adjusted. His cortisol is being replaced by hydro cortisone. When his body undergoes stress, I have to "stress dose" him. That means something as minor as a fever to the stomach flu could potentially become life-threatening. Vomiting means that I have to give him his hydro cortisone via injection. There's a whole booklet that covers just his cortisol replacement therapy. He's on thyroid medication. He'll eventually be on growth hormone and testosterone replacement therapy. This will effect his blood sugars. His body's ability to hydrate itself normally. It's complicated...and it scares me. His clefts will effect his speech, possibly his hearing. His palate effects his eating now. He'll have dental issues later. Etc. His kidneys not only have reflux, but are underdeveloped as well, because of the severity of the reflux. So, he's much more at risk for dehydration. His kidneys won't conserve fluid, so a fever or the flu, or some other minor kind of sickness will more likely land him in the hospital to get hydrated and treated. When will he be able to be potty trained? Good question. He'll probably eventually be on medication to control how much his kidneys can put out...otherwise they'll continue to put out without stopping. That's more of a side effect of the pituitary though. He'll probably always be small. They're watching his bones. The ones in his big toes are very small. Makes for super cute feet, though! He'll be followed closely for...ever maybe. Our nurse case manager set up all of his follow-up appts. for us. It took her over 2 hours, and when she was done she came to us and said, "Oh my.". Not a good sign! But, thank the Lord for help like hers. That would've taken me days. He has appts. with several different specialists and teams of specialists. There will be more appts. when the procedures - the first being to repair the clefts - start happening. Judah has his own day planner. He'll get his own Medic Alert bracelet. His own therapists for every kind of development. His own special equipment; including what the home health nurse brought over yesterday when I had to reinsert his NG tube. He came home without it, but in 48 hrs. gained only 7g instead of 40. His pediatrician told us that he'll probably be hospitalized a couple of times before October because of dehydration issues for different reasons. Why put all this down? That's not even everything, but what's the point? I don't know. I guess processing things this way is just a part of my grieving process. It's gonna be a long process. A painful one. I didn't ask for this. But I have to cling to my core beliefs. The things that I know to be true about God. He is Good. Faithful. Love. Grace. Mercy. He knows and does what is best for us. He creates us for His glory. He desires intimacy with us...me. He is always with me. And He is waiting for me at Home. I'm not sure how all these things will translate in the midst of the daily grind that I find myself in...the new normal. But they're true. Each and every painful step of the way.
Medically speaking, Judah is...complicated. So complicated. So many of his systems are effected by his syndrome. The genetics specialist doesn't have a name yet, but she said that all of his birth defects can be linked to one cause. One point in time when something went "wrong". I use quotes because I still have to believe that God only does right. I question, but that doesn't change my core belief. I do wonder, though, what God saw in that point in time. He was there, He knows. Wow. He was there in that exact moment when one cell, or one tiny piece of a DNA strand, or whatever it was didn't form normally. I'm not sure if that's comforting or maddening. Maybe a little of both. I still believe that God knew in that moment that Judah would bring more glory to Him as the child He created Him to be, than as a "normal" kiddo. Anyway... Judah is special from head to toe. His brain developed abnormally. He will most likely have developmental delays. Whatever that means. His pituitary gland is underdeveloped and does not function. Major problem. That controls the hormones in your body, etc. He'll be on hormone replacement therapy for the rest of his life. Always going back to the endocrine clinic to be monitored and have meds adjusted. His cortisol is being replaced by hydro cortisone. When his body undergoes stress, I have to "stress dose" him. That means something as minor as a fever to the stomach flu could potentially become life-threatening. Vomiting means that I have to give him his hydro cortisone via injection. There's a whole booklet that covers just his cortisol replacement therapy. He's on thyroid medication. He'll eventually be on growth hormone and testosterone replacement therapy. This will effect his blood sugars. His body's ability to hydrate itself normally. It's complicated...and it scares me. His clefts will effect his speech, possibly his hearing. His palate effects his eating now. He'll have dental issues later. Etc. His kidneys not only have reflux, but are underdeveloped as well, because of the severity of the reflux. So, he's much more at risk for dehydration. His kidneys won't conserve fluid, so a fever or the flu, or some other minor kind of sickness will more likely land him in the hospital to get hydrated and treated. When will he be able to be potty trained? Good question. He'll probably eventually be on medication to control how much his kidneys can put out...otherwise they'll continue to put out without stopping. That's more of a side effect of the pituitary though. He'll probably always be small. They're watching his bones. The ones in his big toes are very small. Makes for super cute feet, though! He'll be followed closely for...ever maybe. Our nurse case manager set up all of his follow-up appts. for us. It took her over 2 hours, and when she was done she came to us and said, "Oh my.". Not a good sign! But, thank the Lord for help like hers. That would've taken me days. He has appts. with several different specialists and teams of specialists. There will be more appts. when the procedures - the first being to repair the clefts - start happening. Judah has his own day planner. He'll get his own Medic Alert bracelet. His own therapists for every kind of development. His own special equipment; including what the home health nurse brought over yesterday when I had to reinsert his NG tube. He came home without it, but in 48 hrs. gained only 7g instead of 40. His pediatrician told us that he'll probably be hospitalized a couple of times before October because of dehydration issues for different reasons. Why put all this down? That's not even everything, but what's the point? I don't know. I guess processing things this way is just a part of my grieving process. It's gonna be a long process. A painful one. I didn't ask for this. But I have to cling to my core beliefs. The things that I know to be true about God. He is Good. Faithful. Love. Grace. Mercy. He knows and does what is best for us. He creates us for His glory. He desires intimacy with us...me. He is always with me. And He is waiting for me at Home. I'm not sure how all these things will translate in the midst of the daily grind that I find myself in...the new normal. But they're true. Each and every painful step of the way.
Home At Last!
Monday was a monumental day for the Stewarts...all 6 of us! I was with Judah by 8 that morning, as usual, and was able to get report from the dr. and see that discharge ball get rollin'! I went home around 11 to get Jared, while a good friend came to stay with the kids; thank you, "Miss Stephie". It was a treat for Jared and I to be able to spend time with Judah together. And it was so exciting to be there for the process of finally getting Judah home. We had lunch in the Childrens cafeteria together - a fun little date. (Another breastfeeding/pumping perk. The NICU gives meal tickets to those moms who are there over a meal time. You won't find me turning down a free meal!) As soon as we went back to Judah's room our nurse was ready to do our final discharge instructions and get us out the door!! Our instructions were definitely a little more involved than the average taking-baby-home instructions, but we got through all of that and were ready to officially "de-hospitalize" our boy! The NG tube came out and the respiratory/heart monitors came off! I felt like I was walking on air as we took him to the van in his car seat. And finally, we were headed home at last!
I'm glad we had the video camera rolling when we got home. Lydia was priceless. It was love at first sight. Once she started loving on him and kissing him, it was all over...and she hasn't quit yet! The boys are enamored, too. Each of the 3 is constantly asking for turns to hold him, kiss him, touch him in any way. They're making up for lost time, and they're doing a great job!
The first 24 hours were overwhelming, but we made it. There's a lot to get used to with Judah. A lot that's new and foreign to us...scary, too. But he's home with us. He's finally in my arms at home where he belongs.
I'm glad we had the video camera rolling when we got home. Lydia was priceless. It was love at first sight. Once she started loving on him and kissing him, it was all over...and she hasn't quit yet! The boys are enamored, too. Each of the 3 is constantly asking for turns to hold him, kiss him, touch him in any way. They're making up for lost time, and they're doing a great job!
The first 24 hours were overwhelming, but we made it. There's a lot to get used to with Judah. A lot that's new and foreign to us...scary, too. But he's home with us. He's finally in my arms at home where he belongs.
(I tried uploading the video of me "de-hospitalizing" Judah - taking out his feeding tube and monitor cords - but it wouldn't work. I guess you'll just have to imagine!!)
Monday, July 6, 2009
Today!!!
I can't believe we actually made it to today! Some days I really thought we'd never get here. But here we are! God carried us to today, and now we can bring our boy HOME!!! I'm off to see him right away this morning like usual. I have to meet with the genetics specialist, the dr., do some paperwork...but hopefully, by later this afternoon, we'll be on our way home! I'm completely scared to death, but I've never been more excited about anything...well, except the day that I married that hot red head! There are so many details that I''ve wanted to write about over the last several days, but those will have to wait. I gotta go see my Judah!
Wednesday, July 1, 2009
SOON...
Well, I spoke too soon. Good. That means something is actually going to happen when I was seriously beginning to wonder. I had a good talk with Dr. M. today during report. Judah is progressing, little by little, but not quickly enough to make us (mostly the dr. of course) think that he'll be able to come off his feeding tube within the next week. Dr. M. said that his best guess was that Judah had a 60/40 chance at being off in 7 days. I said another 7 days of this might just kill me. I need my baby, our family needs Judah; and he needs me and the rest of his family. So, tomorrow I start "NG teaching". Long story short, Judah should be home by Monday at the latest. There's a possibility that he could come home sometime this weekend, but the dr. said it can be tough getting the equipment we need over the weekend, so it may not be till he's back on duty on Mon. I still think that's a whole weekend too long, but I certainly can't deny the fact that God's grace is very real and He has carried me this far; He will carry me the last few steps till my little darling is in my arms at home! I wish so much that I could just be ecstatic that he's coming home...but I'm fearful and anxious as well. The feeding tube, Judah's weight gain, my ability to provide what he needs through nursing, giving him his meds, knowing how best to care for him - these are all things I'm anxious about. My confidence in my ability to mother Judah has taken a serious hit since he's been so sick and in the NICU. He's had special 24/7 care without any help from me, until recently. He's such a beautiful baby boy, with some very real special needs - I don't feel good enough for him. My head tells me to focus on today, fix my eyes on Christ, trust Him, rest in Him. But my fears and insecurities are real, overwhelming at times, and are hard to deal with. It's another kind of "torn". I'm torn between the intense desire to have my little boy home where he belongs, and the anxiety of what it will be like when he is home. I didn't really expect this. I thought that when I found out he'd be coming home I'd just be obnoxiously happy...this uncertainty is not what I asked for. Where does God fit into all of this? Well...everywhere actually. I'm realizing more and more that no matter what He allows into my life, I can't get away from Him. And He certainly won't move a fraction of a millimeter away from me, much less leave me. He's in every minute detail. And He orchestrates every one. He's sovereign. He's in control. He's good. So good. There it is. God is good. And He is allowing His good to be accomplished in my life and in the life of Judah whom He created specifically for His glory. There is fear and uncertainty; but there is God's good, and the unbelievable privilege of seeing and experiencing His good in and through the life of Judah. I can't believe He has chosen to bless me so richly. Alright. I'm ready for him to come home now.
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