Thursday, April 30, 2009

Getting Ready!

So, here we are at week twenty-seven! Unbelievable! We are so excited for each new week, but we wish we could stop time so we could enjoy each week even more. The days (even the hard ones) go by so fast! So, why the early post? Well, we are leaving for our great adventure tonight (Alaska Extravaganza), why not blog? It is not like I have a million other things to do to get ready for our trip?!?! Also, Jake won't be able to read the blog before posting...ah, the freedom of speech I now have...kidding (Jake rarely edits me!)! Also, I couldn't miss a week of Hugh's life (technically, Thursday is the day I should write the blog since he was born on a Thursday). We love our little boy!

So, what did week twenty-seven bring us? Well, it brought the high, he is not eating in it. He "hangs" out in it...we tried some "puffs" and he gave the "are you completely crazy?" look. He tried his first pretzel...we think he may be a salt lover (a boy after his Mama's heart). So, I looked for biter biscuits this week since he seemed to be into the pretzel. Well, I determined that baby food manufacturers finally did realize how absolutely disgusting biter biscuits are (how they cake on everything and you have to chisel it off) and have stopped manufacturing them. biter biscuits. He went to another birthday party, this time for his cousin, Logan - he had a wonderful time. He loves to watch all the big kids. We had another appointment with the GI Doctor this week. Well, he now weighs 16lbs. 7oz. (yes, we know it is less than what he weighed last week...we are not concerned) and is over 28in. long (we trust their measurements more than the other Doctor...their measurement is more scientific than the other Doctor who does the, "Now, hold your finger here while I..." measurement). He said Hugh looks great and remains on his current growth curve (we already knew that). He sat and answered all of our questions (and if you know us...we had A LOT of questions). So, we are not worried about future children having this issue - it is not genetic; he has most likely had this issue from birth; he will grow out of it; he is not a Doogie Howser doctor (kidding - we didn't ask that question, but wow...he looks young); and the questions/answers go on and on (and on and on...). We changed his meds, now he is only on Prevacid twice a day and no Zantac (of course it had to be that way...the Prevacid is $40 and the Zantac is $10). He explained that Hugh will need feeding therapy since he is struggling with the solid feedings. We will most likely have a speech pathologist come to the house to determine how to handle (they watch us feed him and then slap our hand for all the bad habits we are allowing he to create). I do my own feeding therapies with him everyday...I eat all day in front of him and have him watch watch me...guess it is not working. We also discussed the tube again...I'll be honest, there was a part of me that thought, "ah, a night drip would be so longer having to feed ALL DAY"; however, I know it is not easy - we have a friend's daughter who just got a NG tube and it is SO, we pray for them and praise God that the tube is not needed at this time. It was going to have to be a real possibility if we changed his "shake" consistency - the nutritionist said we weren't making the honey consistency as prescribed and we could be harming Hugh. We explained that the speech pathologist had allowed this; however, it was no where in her report. If we needed to switch to the nutritionist's recommendation...he would need seventy-five ounces of fluid a day to get twenty-six ounces a day (it was crazy and I think the Doctor had it all mixed up)! The Doctor said we could stay on "our" recipe for now. So, we'll visit again in June to see how everything is going. Our little guy is still super sweet with lots of smiles and giggles...God has blessed us so much!

Well, I should get back to all my "chores" and get ready for the trip...I just didn't want to disappoint my faithful blog readers (all ten of you) and not have a post this week (week twenty-seven was too important to let disappear). So, me, Jake, Hugh...and Mr. Pump will be boarding a plane tonight for our great Alaskan Adventure...goodbye Arizona and goodbye swine flu (hopefully, that isn't in Alaska)! Please pray for our LONG plane trip (six hours...I am sure my boys will be sleeping and I'll be wide awake...awesome) and our trip! I am sure we'll have lots of "firsts" to post for next week and love of good lovin' to report from the AK Johnson crew. We love you all and hope you all are doing well!

Saturday, April 25, 2009

It is official...Saylor is a Sitter!

Here it is...the half way point for the first year...twenty-six weeks and six months old! Unbelievable! Time is going by way too fast (I know I say this every week, but it really is going too fast)! We cannot believe Hugh is six months old...I was remembering this week how I was in labor six months ago (it feels like it was yesterday, but I am glad it doesn't "feel" like it was yesterday...get my drift?!?). Also, our happy guy came back this week...not sure where he was vacationing last week, but he came back! We are so lucky to be Hugh's parents...God has blessed us so much!

So, what was new in week twenty-six? Well, we have a sitter...yep, Saylor is a sitter (say that fast five times...and yes, we have one of those as well). I don't leave him alone while sitting (he has been known to still tumble over), but he is "officially" sitting up all on his own - he gets to see the world in a whole new view. He went for his six month visit to the Doctor this, more shots! He did really well and only cried for about thirty seconds. The rotovirus vaccine didn't go as well for him once again. He is way onto spitting out nasty things that enter into his mouth. So, he weighs 16lbs. 9oz. (25%) and is 27.25in.(75%)...yes, he shrunk from his last appointment. Seriously, can you really accurately measure a baby? He listened to his lungs for a long time to make sure nothing was living in them...he said they sounded very clear. We talked about Hugh's frequent night waking (since we are back to newborn days with him waking up every two is awesome) and he said, "If he needs to eat then he needs to eat. And yes, you are creating bad habits." Awesome. So, we'll meet with the GI Doctor next week and see what he has to say about it. We just don't want Hugh to get used to getting the rest of his food throughout the night. We praise God that he is growing! Our Doctor said he looks great and is still on his growth curve - he told me the GI nurses can get a little "crazy" about the weight, I shouldn't get discouraged because he looks good. So, all in all...we have a happy, healthy guy! God is so good and so faithful! He still has his "good" and "bad" days with eating...his "good" days always seem to be when my mom is watching him (we think she drinks some of the bottle for him) and the weekends are always "bad" days. We definitely no longer freak about it...he'll get what he needs. What else? Well, he is playing with more toys because he can sit up now. He pooed in the toilet...or, wait, I should state that his poo went in the toilet! Ah, yes...he pooed in the bath with Jake...again! It was so funny...Jake says to me, "Can you turn the lights on? I think he is pooing." (We dim the lights to create the "bedtime" experience.) And yes, he was indeed pooing...lots of it. I about died laughing...seriously. So, Jake is really starting to think the shower may be a better option! He had more dinner dates and lunch dates with friends...and he continues to charm. He had his worst crying session...ever...when he hits a wall, he hits a wall. He has a love for the electronics...remote controls, cameras, computers. (I hope I never post that he has destroyed one of these items...especially the camera or computer...I would be devastated.) He is becoming more and more "grabby", ladies, watch out...he is a grabber of hair and other items (if you know what I mean). We are starting to see the sin nature in Hugh...unbelievable how early you see it (however, I am sure it is just a phase and we won't ever have to discipline him because he'll be perfect...yeah right). As for me...I love being a so great; however, I could stand not having ANOTHER breast infection this week! Seriously, how many breast infections can a girl get in a week?!? Overall, it was a great week (minus the breast infections)!

God's faithfulness is amazing - He continues to give us the grace we need to live each day. He is so patient with us and is quick to forgive us when we are so undeserving. Our hearts are so burdened for our son - we desire for him to know the Lord and from a very early age. We desire for him to know the forgiveness, grace, and love we experience everyday. Thank you all for your prayers and love! We hope you all are doing well and we pray for you all daily!

(Sorry for all the pictures...I just think he is so cute!)

Saturday, April 18, 2009

Fussin', fussin', fussin'...

Wow, week twenty-five...unreal! We are almost at the half way point for his first year and Hugh will officially be six months this next week. Time is going by so fast...some times goes by faster than other times. This week brought A LOT of fussin', but it also brought a lot of smiles. We are so in love with our fussin' muffin!

So, what did week twenty-five bring besides A LOT of fussin'...well, it brought his first Easter, which I would say was the highlight. Hugh would probably say getting to wear the tie was the highlight...we loved the Easter cute. We had a wonderful church service outside and really enjoyed getting to see lots of family. Unfortunately, Hugh missed his first Easter egg hunt since he was sleeping, but we know there will be lots more in his future. However, he did get to try everything (and I mean everything...even lamb) that we were eating since Jake decided to feed him everything on his plate...yes, Jake (who has to wash the paci every time it falls to the floor, who still makes me wash all Hugh's clothes before each wear, who starts to hyperventilate when dirty fingers get to close to Hugh's face, and the list goes on) me - I was shocked. Hugh didn't really take to any of it, but it was fun to see all of his facial expressions...constant reminders of our future (and present) with him eating. He still has no, I won't be using the "teething" excuse for his fussin' any longer...I'll just be honest - he is fussy. He still has a runny nose...I don't think it is a cold, but seems more like allergies (diagnosed by Dr. Saylor). We have realized we have the stinky kid with the crusty nose...just what we always wanted and the kid all parents want their kid to be friends with...right. We had another trip to the zoo with his cousins - it was a lot of fun (and a little tiring). I had all the boys for about twenty minutes by, definitely killed any dreams of wanting multiples. Hugh was in the Bjorn, Logan was by the hand, TJ was strolling behind, and Eli was explaining to me that TJ always moves so slow (the slowest in the family he explained...I explained that he was just more observant)...we were trying to find the coyotes (of all the animals at the zoo, Eli wanted to see the coyotes). Well, we never saw the coyotes...they were hiding (or something), but I got a couple comments and some stares..."Wow, four young have your hands full!" I didn't correct them...I would claim those boys any day of the week...they are awesome. I told Melissa that she didn't have to worry about getting those comments because she only has three boys. He is still really trying to sit up independently...he can do it for a few minutes, but then tumbles over and gives me his, "Why in the world would you let that happen?" stare. We have a spitter...he spits all the time and I absolutely love, wait...we have the stinky, crusty nose, spitting kid...even better. Jake tried to spit back at him...he started crying. He is getting a lot more ticklish...I love to tickle him. He is a lot more grabby...holding him while trying to enjoy a meal is so fun; however, Jake and I love to eat in under five minutes. Overall, the week was great...seemed a little long at times with all the fussin' (nothing a good set of ear plugs and a bottle of wine can't handle...kidding), but was still a lot of fun.

Well, we had our first weight check this week...and our chunky monkey gained eight ounces since his last appointment! I was thrilled! Praise God for his growth! And the best part - they didn't charge us the $30 co-pay! I spoke with the GI nurse and she says, "Well, he gained some weight, but it isn't good enough." Guess is good enough for him and us! He is now 28in. (90%) and 16lbs.2oz. (10%)...long and lean (nothing wrong with that). So, we are not going to do anymore weight checks and we'll just wait to see the GI doctor at the end of the month. Also, he is back on Zantac (in addition to the Prevacid) - Jake and I were already starting to experiment with this combo (since we went to the Saylor School of Medicine and why wouldn't you start mixing drugs with a six month old) and the doctor agreed with us (he should probably consult us more often). The reason for the Zantac...he was fussin' and why not load a baby full of drugs...kidding...he was having a lot more back arching and pain while eating. He is still struggling with the eating, but we see it getting better...we actually think he may even be crying for food at times (wow, what a concept). God is so good!

We are so blessed by our little guy. We realized a long time ago that God is allowing us to walk through this trial and we need to trust in Him. He doesn't give us the trials so we can focus on the trial, but He gives them to us so we can focus on Him (James 1:12). I have realized that you can allow the trials in your life to become the center of your life (and if it is not one thing then it is another...this week I started freaking out about Hugh having a flat head)...Christ easily loses His place on the throne. When Christ isn't at the center, everything else is off balance. We pray God is always on the throne in our lives...where He has always been and will always be. His grace is amazing and His mercies are new every morning!

Thank you all for your continued prayers - we love you all!

Ending note...we bought a freezer a couple of weeks ago since we are in the "milk" producing hundred and thirty hundred and eighty ounces...holy milks!

Sunday, April 12, 2009

Hoppy Easter!

From our bunny to your bunny - Hoppy Easter!

Saturday, April 11, 2009

The Bare Minimum...

Yeah, week twenty-four! We cannot believe it has almost been six months! He is getting so big and so cute! We are so in love with our little blessed! We are amazed by God's goodness and His grace everyday.

So...quick update on the eating issues (or lack of eating). Good feeding tube! We spoke with the GI nurse on Monday to discuss how much Hugh needs to eat. At first, she tells me thirty-eight ounces...I started laughing. She then told me the dietitian said thirty-one ounces. So...we discussed our options. We explained that we boost (think Jamba Juice) each bottle with a half scoop of formula and after she heard that, she said twenty-six ounces was the new goal...the bare minimum. Well, I explained it would be the total maximum since we were starting at twenty. So, we are back to waking him, but we are getting twenty-six to twenty-eight each day...praise God! So, I am slowly readjusting to less sleep...and I am surviving, which is shocking (I have been trying to watch and learn from my sister-in-law, Melissa...there is no way she is getting sleep and she always has everything together!). Unfortunately, the "glue" he has to eat is working as a laxative (I would try it for myself, but it doesn't work if you don't wear diapers), but we think his stomach is finally starting to be able to handle it (ah, yes...the Johnson IBS). So, we start weekly weight checks on Monday...Jake was thrilled, "So, they charge us $30 to weigh him? Awesome." Yes, they do...the beauty of doctors and our health care system. He started off the week great and we really thought we were turning a corner, but he is back to really struggling; however, we think he is teething (I know, I know...aren't all babies teething all the time?) and he has a, those things are not helping with the eating. We are praying he is gaining weight (our scale would prove otherwise) and we will go from there. We know God will grow just won't be on our terms. We trust God in His wisdom and glory!

So, what did week twenty-four bring? Well, it brought the eating, lots of smiles and giggles, flirting, and fussing. However, it also brought the first time sitting in a high chair and a grocery cart (Okay, so I know what you all are she really blogging about this? Yes, I am. I have one child right now and I can remember him doing these things. I am sure when I do this blog for a future child it will go more like this..."Week twenty-four brought survival...Hugh still hasn't managed to poke any eyes out." But for now, I can blog about first times in a high chair and grocery cart.). We also tried to bring the fruits back out (Jake was really pushing)...he got to try applesauce...not on his fave five, Jake ate it (now, I know why he was pushing...I could have just bought him some applesauce). We'll keep trying. We really thought this week would bring teeth since he is chewing on EVERYTHING, drooling like crazy, and whining, whining, whining (all the whining gives me a headache and leads me to get my own wine), but no teeth. He has learned a party trick (that I would like to take credit for)...he can stick his fist in his mouth (no, you cannot book him for parties...yet). He got to wear some leggings (well, really long socks...but he looked like my tiny dancer...Jake loved it). We have learned that he likes to always have his "snuggle" by his face or covering his face (his soft blanket or Teddy...I stopped freaking out with him covering his took a long time). We are also busting out the six to nine month jammies...he is getting too long for the three to six months...he is getting too big! Overall, it was a great week! He is so sweet (at least when he is not whining)!

We are so excited to celebrate his first Easter (and not just to wear the super cute outfit - check the blog on Sunday or Monday for pictures)! Our hearts are so burdened for our little guy to know the Lord - we desire for him to honor and glorify the Lord from a very early age. We are reminded of the incredible sacrifice the Lord made for His children by sending his perfect son to die for our sins - we are so unworthy. Now, that we have our own son, we cannot imagine this incredible sacrifice, but we are so thankful. The Lord is Risen!

We thank you all for your prayers! We hope everyone is doing well. We love you all!

Monday, April 6, 2009

Ah, the pictures...

Here are the week twenty-three pictures. I was afraid a whole week of his life would be missing...however, Canon Tech Service to the rescue! We love our little guy!

Sunday, April 5, 2009

And then there was glue...

(Okay, so I have to post old pictures since the camera is having techincal frustrating!)

Ah, week quickly all the weeks seem to fly by. However, I'll be honest...this week has been a little tougher than some of the other weeks. We love our little guy so much. He is so sweet and normally, always has a smile for everyone. He is such a flirt and loves attention (first born...big shock). He loves to be loved and it is not picky on where it comes from as long as someone is loving him. We are reminded everyday how incredibly blessed we are...God is so good!

So, I really thought this post was going to go in another direction. He started off his week with a lot of promise. We felt his feedings were going so much better...he was taking three to four ounces for a first feeding (albeit a vomit session here and there). Yes, I was force feeding him (I know you all think this must be so terrible, but really it wasn't - he doesn't cry at all, I just place (not force...hmmm) the bottle in his mouth when he smiles (I know...mean) and I hold his arms down (he is constantly trying to bat the bottle away)). So, yes it is force feeding; however, I am a mother and I need to feed my son. I have realized in my five months of parenting that I will not judge other parents (when they do things that I would consider "odd") because you never know their circumstances. Anyway, things were going well...we were trying to figure out if he was getting better due to the dairy-free diet (so sad for me) or the Prevacid (new anti-acid drug). So, we went to PCH on Friday for the barium swallow test - Hugh was smiling and Jake was scared. It is weird being at PCH - when I am there I feel like I shouldn't be there...I think, "This is a place for sick kids...not for Hugh." However, it is a great hospital and we are thankful to be able to go to it. Also, we can now pray for the little ones at PCH. So...the went well (Jake was fine). They all loved Hugh since he was hamming it up with lots of smiles. He didn't mind drinking the barium at all (hmmm...maybe I should feed him barium). We liked the speech pathologist a lot. So...the results...he is aspirating. Basically, the milk is going down the wrong, going to the airway, which leads to his lungs. The crazy thing is, he has NEVER had any respiratory problems. So, it was very surprising that this was happening and we praise God that he has been so healthy. They explained to us that formula and breast milk are too thin and he needs to be on a consistency called "Honey" or glue (as we like to call it) because he doesn't aspirate at the thicker level. Also, no more force feeding...we have to make a pleasant eating environment (whatever that is) for Hugh (to avoid years of therapy). So, we have to add these gels to his milk. We are supposed to add one ounce of gel to every four ounces of milk - this is the honey recipe...there are other recipes like pudding and nectar, but we won't go there. They explained that he is underdeveloped, but he should grow out of this in the next three months. We asked about the reflux...they don't know if he has reflux since reflux is secondary to this issue; however, we need to continue to treat him for reflux until the GI doctor tells us to stop. So, I walk out of the appointment a little overwhelmed...I have a million questions, but they didn't come to me until we walked out (Jake, however, is doing fine with everything...thank goodness for one sane parent). We get home and get ready to make the "recipe"...thinking that finally everything has been solved - he'll drink his new recipe and this will all be a distant memory. Ha! Seriously, we make his looks like glue and we give it to him and we get the, "Are you totally crazy? I am never going to drink that." stare. He wanted nothing to do with the glue and he was hungry. So, since Jake and I have extensive medical backgrounds, we made the decision to go back to his regular milk. He will drink that milk and he has been fine...not sure what aspiration is, but can it be that serious?!? So, we give him his regular milk, which he drinks and goes to sleep (he was so hungry). We place a call into the speech pathologist, who explains to us that regular milk is ABSOLUTELY not an option any longer. She explained that we all know the problem now and we need to treat the problem. So, she said thick liquids or a feeding tube. Well, at that point, I had a panic attack...I just became too overwhelmed to process anything. It only lasted a few minutes...Jake brought me back down. She did allow for us to make the honey a little less honey and a little more nectar (I know...confusing). So, we are working on it and he is taking it (about twenty ounces per day). We'll need to find out from the GI doctor on Monday whether or not that is good enough...if not, he will be placed on a nasogastric (NG) tube for three months. We are going to rerun the test in three months. The feeding tube being on the horizon has really freaked me out and I praise God for so many people that have brought me back down. It really wouldn't be too bad, and if he needs it, he needs it. Obviously, our concern through all of this is we don't want him to get dehydrated from not eating enough (he even has to drink water thickened) and we don't want him to get pneumonia or some other respiratory problem (from the aspiration). So, we wait and trust in the Lord. I have really struggled these past few days, but I know God is still good and we place our hope and trust in Him - however, it doesn't make it any easier (which of course is what I want). We rest in the truth of His word, "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." (Lamentations 3:22-23)

So, what was new this week? Well, besides the glue...we had a wonderful week. He is getting much more vocal and is really trying to sit up (with some falls). We have realized Hugh is a simple guy and loves himself a spatula and a plastic bag to play with (kicking it with his feet...not sucking on it...he was always being monitored)...endless entertainment. We love how he clings (like a monkey) now when you hold cute. He got to meet his new cousin, Evie...she is so cute! We know that many fun days are ahead of us with the cousins. He got to spend time with his GG (great grandmother) and had a wonderful time...lots of smiles and giggles. We had some lunch dates with friends and even a trip back to my work...he, of course, was a big hit. So, week (however, if it weren't for his feeding issues...I wouldn't have much to blog about...hmmm, I would be okay with that).

We thank you all for your prayers and ask that you continue to lift Hugh up in your prayers. We would like to avoid the feeding tube if at all possible. We praise God for our little guy - we are so blessed!

(Oh, by the way...I am back to dairy this week. Me and the Cap'n are going to go sailing.)

Wednesday, April 1, 2009

Welcome Evelyn Grace!

My brother, Troy, and his wife, Melissa, had their fourth little one today! They didn't know the sex of the baby, so after three can believe this little girl came as a surprise! I am sure my brother was looking for the other "piece"! She weighed 7lbs. 15oz. and is 20.5in. long. She is a really cutie and we are so blessed to have another little girl in our family. Hugh is very excited to have someone to play with...I am sure there will be some interesting dress-up days in our future!