Tuesday, December 23, 2008

The Best Christmas Present Ever

Last year, at this time, I remember laying on my mom's couch thinking that I could feel Malachi moving inside of me. Wow, how far we've come in just a short year. Now, I've just left the Dr.'s office for what I hope to be at least another month or so, until his 8 month checkup. He's gained 8 OZ since Sunday!! That's half a pound, people!!! He's back up to 15lbs 6 oz and is doing REALLY well. He is starting to try to sit up, and has started really playing in his Johnny Jump Up! We're even working on getting him to say Dada now! We'll see if it happens for real before Christmas?!?

Anyway, I've gotten what I wanted for Christmas Thanksgiving finally! I have a healthy, happy little boy!!!

THANK YOU LORD for blessing me so much!

Merry Christmas to everyone - I hope it's as good as I KNOW ours is going to be!!

Monday, December 22, 2008

We're Home

Actually, about an hour after I posted yesterday, the Dr. came in and said we could go home. We are making an upward trend, even though he hasn't gained a ton of weight yet. We call in later today to check in with the Dr. and then Malachi goes in tomorrow for a weight check! Hopefully we'll break 15 lbs! Any bets???

Sunday, December 21, 2008

Hospital Updates

A Little Boy and His Daddy!!


Look how well I can sit up!! Yes friends, this is a new accomplishment. No, we're not perfect and he still needs support after a few seconds, but this is new, I'm talking, yesterday, new!!
Not to mention, look at how GREAT this picture turned out!

It's 8:00a.m. and I am currently sitting on a cot looking at my husband eating our breakfast tray and Malachi playing with his favorite plastic keys, crying everytime the mobile goes off. We've just had out room cleaned, a breathing treatment done, our diaper changed and talked to Lolli and Pop to update them about our night. And THAT was all in the last 10 minutes...WHEW, I'm already tired.

The last few days have been pretty trying, but, we have also found encouragement every once in a while. Malachi's O2 Sats have been around 93-95% for the last day or so, so we may start weaning him off of his breathing treatments!! (YEA!!) He sounds great other than a cough, but, as I understand, that'll stick around for QUITE some time probably.

On the bright side, yesterday morning, Dr. Young stopped by and gave us what I consider to be decent news. We've started back on Nutramigen and baby food! Malachi loves to eat!! I'll try to post a video of him eating with Lolli yesterday morning. He's keeping everything down, he's just not gaining weight as quickly as we would like for him to. In fact, his body is using everything it's taking in just to keep functioning. So, we're feeding him EVERY 2 HOURS. It's like he's a newborn. AND, to top it off, he is having a difficult time maintaining his body temperature. Friday night, it dropped down to 97.1. Dr. Young explained that his body is using all the calories it gets to keep his temperature up and if he goes much more than 2-3 hours, the calories are used, and the body goes for fat cells to keep warm. Unfortunately, Malachi has NO fat cells, so the temperature drops. So, for the first time since he was probably 2 months old, he wore a hat to bed, got swaddled up with one furry blanket and covered up with another. He slept well, until, that is, the Respiratory therapist came in and hacked him off for waking him up!!

We're REALLY hoping that at his 9 o'clock weigh in, he'll have gained some pretty serious weight. I doubt it, but that's what needs to happen. **Okay, it's now 9:45 and I'm just now getting around to finishing this. He didn't gain, but he didn't lose. ** I'm not sure when Dr. Young is considering letting us go home, but I know that he, Dr. Feist and Dr. Higgins (our specialists in Lubbock) are keeping a very close watch and are communicating several times a day about how Malachi's doing. I bet they're going to want him to gain some SERIOUS weight before we get to go home. ?????
So, we're hangin' at BSA some more today. The nurses have been wonderful and I'm glad that we're here. Malachi has turned a corner, at least temporarily, and we're praying very hard that he will continue to improve and hopefully we'll be able to have Christmas with family!!
Looking at his balloon from Lolli and Pop!!

Chewing on the tag at the bottom!

(Notice the booboo on the Bear's Tummy? Isn't that cute?)

Me and My Daddy Again!

Everything in the Room is Dry-Erasable! Check Out the Monkeys Drawn by Lolli and Daddy!! You be the judge as to who drew the better monkey!!

Some of his FIRST babyfood in 2 months!!! Can you see how good of an eater he is??

Friday, December 19, 2008

We're Officially at the Hospital

Malachi is in room 227 in the Pediatric wing at BSA. Hoping to get his weight up. Will blog more later.

Thursday, December 18, 2008

Day by Day

We were BACK at the Dr. yesterday for another check-up/weight check. The results? He lost the 5 oz he gained last weekend. However, his RSV wasn't as bad as Dr. Young thought it would've been and his Oxygen levels were great. His eating had been going very well, he hadn't been spitting up much at all and he actually pooped on his own. So, although the weight loss wasn't good, Dr. Young seemed happy with the overall visit. He told us to keep doing what we had been doing and come back on Friday.

Now, it's Thursday morning, 10:45a.m. and yesterday evening/last night and this morning haven't been so great. He spit up quite a bit last night, and I just called my mom and he was getting his clothes changed again because he spit up. Now, I'm in a quandry. Do I call the Dr. now? Do I wait for one more bottle to see if he can hold all of it down and then, if he does, wait until tomorrow? If I call now, I KNOW what they're going to say. They're going to want to see him, they'll examine him and they'll send us to the hospital in Lubbock. Is that what's going to happen anyway? I don't know. We only have 1 more hour to go before he needs to eat again, so it's just a waiting game right now. I probably should've packed my bags last night though. I just have a feeling.

Now for the important part of this blog. Can I just be honest?

I am completely at my wit's end. I'm frustrated, I'm tired, I'm tired of being frustrated. I'm angry. Why is this happening to MY baby? Why does there have to be one more thing heaped upon us THIS YEAR? Why does this have to be happening over Christmas? Why can't we just get a break? When am I going to have my little boy back? When will I see the fat rolls and full cheeks and big ol' belly? When can I feed him cereal again? He's so ready. He opens his mouth every time we eat, he pulls anything he can to his mouth. I'm jealous that there are other babies out there who are doing fine. I'm tired of hearing about happy things. No, I don't really want anyone else to go through this. I don't think anyone reading this blog will truly believe that. I do, however, believe that anyone reading this will sympathize with my feelings. I don't want Malachi to weigh as much as his sweet, beautiful cousin Elliot. He should weigh WAY more than her. IT'S NOT FAIR.

Hold on...the perspective is coming back...Life's not fair is it? It wasn't fair when we lost Malachi's twin. But, it's not fair for a lot of other women who only have 1 baby inside of them, and lose that baby. At least when I lost Malachi's twin, I got to keep Malachi. It's not fair that Malachi is SOO sick and that we are still struggling after 2 full months of Dr.'s visits. But, it's not fair for Marcus and Julie who have to start a 17 day cycle of Chemo and Radiation with their 3 year old daughter, Camryn, 3 days before Christmas. It's not fair that this is the WORST part of her treatment and that it's happening NOW, right before Christmas! It's not fair that I haven't had the time, energy or motivation to send out Christmas cards with a cute picture of Malachi's first Christmas outfit. It's not fair that we may have to spend Christmas, worst case, in Lubbock at the hospital, or best case, at home, alone, isolated from family and friends on what SHOULD have been our happiest Christmas yet. But, it's not fair to a lot of families who don't even have their babies here with them, or who want babies so badly they'd KILL to be in my situation. It's not fair that because of Dr.'s visits and X-Rays and Ultrasounds that we couldn't absolutely shower Malachi with gifts this Christmas, like I SO wanted to. (I know, he doesn't even understand, but, still, isn't that one of the best parts of having a baby at Christmas? Giving them cute new things?) But, it's not fair to babies in other parts of the world who don't have Malachi's nice, warm bed, clean PJs to change into when he spits up and a pediatrician and pediatric gastroentorologist who are watching over him like a hawk.

So, while I have my feelings, my fears, my anxieties, my anger and my frustrations...I am trying VERY hard to maintain my faith, my trust and my hope in MY God! Maybe, just maybe, this will turn out to be one of the best Christmases we have ever had. Yep...maybe I'm going to vow to remember what Christmas is REALLY about. It's not about showing off Malachi in cute Christmas cards. It's not about new outfits, toys or other junk that the Bible says will pass away one day. It's about celebrating the fact that 2008 years ago, Jesus came to Earth as a little baby. Just like Malachi. He was vulnerable, dependant and trusted his mother for everything. Can you imagine being Mary that day? She knew that she was giving birth to a precious baby boy that one day she would have to watch die a terrible death. She KNEW, yet she maintained her faith and raised Jesus just like she was supposed to do. With EVERYTHING we're going through with Malachi, I have the assurance and the faith that our Doctors are doing everything they can to see Malachi through all of this. At least I'm not raising him, knowing that he'll die and that I'll have to watch it happen.

Wow, God, thank you for that revelation. I didn't start this post intending to get so upset or intending to hear God speak to me in such a strong voice as He is right now. But, I'm thankful that I did. This year, I vow that Christmas will be about thankfulness, about celebration of the gift God gave us in his Son over 2000 years ago. I vow not to complain anymore (okay, at least to work on not complaining as much) and to be happy with what all I DO have, instead of what all I don't. I vow that I will tell Malachi about his first Christmas and the struggles we went through, only to come out with a deeper knowledge of God's love. I think that in the last 10 minutes, I have come to appreciate and love God for his sacrifice more than I ever have before. Who would've thunk that would've happened sitting at a desk, at work, with phone calls and e-mails coming in and going out? My prayer is that Malachi will learn at a VERY young age to be thankful, and to see that God is in control, always and forever. His eye truly is on my little sparrow and I KNOW He is watching me!

Tuesday, December 16, 2008

Things to Be Thankful For...

1. The beautiful child that Thomas and I prayed for so diligently.
2. A beautiful home with food in the fridge, running water and electricity.
3. Two cars that are paid off (and, along with that, $1.50 gas)
4. A warm bed (or couch, depending upon whose night it is to stay up for breathing treatments)
5. An incredible family who is picking up the slack where we need help. (Thanks mom for doing the laundry, and cleaning out the fridge (okay, I didn't say the food in the fridge was any good anymore...haha) and finding the lost socks. Oh yeah, and for watching my son so I don't get fired!!)
6. A beautiful Christmas tree with two pathetic little gifts under it.
7. A family that understands that while we can't give the gifts we wish we could, we love them more than words could say!
8. A husband who actually gets up in the middle of the night to take care of my son so that I can get sleep.
9. Goat's Milk
10. Pediatricians
11. Pediatric Gastroentorologists
12. Health Insurance
13. The fact that Malachi ONLY has RSV and whatever else is wrong. The fact that Malachi DOESN'T have Cancer and doesn't have to take medicine that literally kills the cells in his body.
14. The little smiles we get to see every now and then.
15. YOUTUBE so we can go back and watch videos of when Malachi WAS healthy.
16. The fact that God has everything under control and knows when we'll see Malachi healthy AGAIN!
17. Tears - they can be so therapeutic.
18. Nancy, for teaching me that "This Too Shall Pass"

Most importantly, I'm thankful for a God that has made me into the woman I am and who continues to know my heart. He continues to know my hurts, my sorrows, my fears and my worries. He also knows how to heal my hurts, restore my sorrows, give me courage for my fears and lend a shoulder for my worries. The Bible says to cast all our cares upon Him. Yes, right now, I sound so strong. (It's just a facade) I'm not strong. I cry often. I get frustrated. I may have muttered a dirty word yesterday when Dr. Young told us Malachi has RSV. I yell at Thomas when I can't take it anymore (which is pretty often these days.) I'm struggling. Yet, I know, when I gain my perspective back God gives me my perspective back, that I'm not in control, God is. He hasn't forgotten about me. He surely hasn't forgotten about Malachi. He knows EXACTLY what's going on and He knows when and how it will all be over. THAT is what I am MOST thankful for!

I found this poem earlier and thought I would share it with you...I might just get this framed!!

This Too Shall Pass
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near
....Helen Steiner Rice

Monday, December 15, 2008

RSV

That says it all doesn't it?

Sunday, December 14, 2008

So...What did he say?

The Pediatric Gastroentorologist...Dr. Feist, was great last Thursday. He told us that Malachi has a condition called post-viral dysmotility. Yeah...okay, so what does that mean? Basically, the week that he got croup is the week all this started right? Yep...with a virus. That virus shut his stomach and intestines down and they haven't been working since. He's still producing gastric juices, but the stomach and intestines are no longer contracting the way they should to move the food through the digestive track. So...now what? He put Malachi on 1.3 ml 3 x/day of Reglan which is a medicine that is supposed to "jump start" those contractions again and hopefully he'll be better soon. At least, that's what he thought. He told me to call in a week (next Thursday) and hopefully we'd be able to put him back on Nutramigen...then, in another 4 weeks, go back and hopefully we can get on regular formula and wean him off the Reglan.

Friday, Thomas stayed home with him and we were hoping that he would have a good day. He did...then, Daddy and Mommy went on a very special date with Aunt Bubzees and Uncle Dubz. Lolli even told us to leave him at her house all night! WOO HOO...were we excited? Yep! You know what a night with no baby means right??? SLEEP!!! Well...after we left the Nutcracker (thanks again Bubz and Dubz, we had a great time!!) we had a message to call Pops ASAP. It had been sent an hour before. Malachi was writhing and moaning and couldn't sleep and wouldn't rest. We brought him home, he slept ALL night...we weren't sure what had happened, but we thought it was over.

Saturday morning, woke up...Fed Malachi at 8:00a.m. and all was well...or so we thought. He then began wanting to eat about every hour. He was in pain, uncomfortable...horribly gassy, couldn't sleep...just not good. Dr. Young had asked us to please come in on Sunday for a weight check, but with Malachi not feeling well and the new cough he has developed, we went ahead and made an appointment for Saturday at 1:00. Yep, that's right...our awesome pediatrician works 7 days a week. Usually 14 days in a row and then takes the weekend off. When we got to his office, they weighed Malachi and he's up to the same weight that he was on October 14th, 15 lbs 3 oz. The Dr. told us that if he had lost any more weight, we were headed to the hospital. Thank you Lord for not letting that happen. He told us no more Reglan for the day, let his tummy rest, feed him about 2-3 oz about every 2 hours and go from there. He also told us to drop the dosage of the Reglan back to .7ml 3-4 times a day.

Sunday that's exactly what we tried. 9:30 Reglan...HORRIBLE. He cried and fussed and moaned and groaned ALL DAY LONG. In fact, it's 8:00p.m. and that still hasn't stopped. I don't think he's getting satisfied, but I'm afraid that if I feed him much more it will REALLY upset his tummy. So, tomorrow, I'm already planning on staying home and calling BOTH doctors tomorrow to see what the NEXT plan of attack is.

Thank the Lord for his saving grace and for putting such a GREAT support system in our midst. Thomas is so wonderful, but he's getting exhausted too. My mom and dad are trying EVERYTHING they can to help us and our friends are calling to check on us and give us moral support. (Thank you Aunt Janalyn for calling tonight to check on us...we love you!!)

If I find anything else out, I'll update. Just pray that Malachi will get better soon so we can have a fat, happy, content little baby back!!

Love to you all!

Thursday, December 11, 2008

Over the River and Through the Woods...

...to the Pediatric Gastroentorologist we go. Okay, so I took a little bit of liberty with the lyrics, you'll get over it!

It's 7:30 a.m. on a Thursday and what's going on at the Allen household? Normally we would be leaving for daycare right about now. Today, Daddy's holding a very fussy baby in the living room trying to see if he'll calm down (since he just spit up on us). And mommy is...well, it's pretty obvious what mommy's doing right now isn't it? Why are we not sticking to our normal routine? Because we're headed to the land of Buddy Holly and Texas Tech today to see a Pediatric Gastroentorologist. Insert dream sequence music here and visualize as I take you back to 9:30a.m. yesterday morning.

I was sitting at work, just like any other day, putting together a big grant proposal that I was to have finished yesterday afternoon. As stated in a previous post, I had made an appoinment with Dr. Habersang today at 2:00p.m. and had called our pediatrician to get Malachi's medical records faxed over. However, as of yesterday, the nurse (hereinafter referred to as Cruella) hadn't called me back on my request. So, I called Dr. Young's office and spoke to the front desk. They told me that they had faxed them over the same day I requested it and that the notes indicated I had spoken to Cruella about it. HMMM...that's interesting, maybe I just don't REMEMBER? Yeah...moving on. I also gave them Malachi's weights for the last couple of weeks as they had told me that's what we were supposed to do. A few minutes later, the head nurse, Terri (hereinafter referred to as Glenda, the good witch from the North) called me very distressed. She and I talked for a few minutes about Malachi's weight loss and what we had been doing. At this point, Glenda knew that we had an appointment with Dr. Habersang made. She asked me to please let Dr. Young examine Malachi one more time to discuss a plan of action before we did anything else. I think proceeded to explain to her how I had just been shoved off by Cruella and that I was tired of being made to feel like a hysetrical first time mom. Glenda, very sweetly, but very forcefully, told me that I was NOT a hysterical first time mom, that I was a MOM with INSTINCTS who KNOWS when something is wrong with her baby. (Gee...that's a novel idea, why didn't I think of that?) She also told me that she looks at all of Dr. Young's patients as her baby and that she was appalled by Cruella's actions. She asked if I would speak to the Nurse Administrator in the office and let her know what had occurred with Cruella. (Anyone up for fried Cruella?) Okay...moving on

She also asked if I could please come see Dr. Young at 2:00 yesterday afternoon. I said sure, I didn't mind that. So, I called Lolli to let her know that either she needed to bring Malachi to me, or I would have Thomas do so. (Okay - it wasn't that dictatorish...just go with me here) It was at this time that she informed me that Malachi's lips and feet were blue and cold. He was breathing FINE, but he just couldn't warm up. He was in a long-sleeved onesy, fleece pants, socks, shoes and they had him wrapped up in a furry blanket, holding him and he just wouldn't warm up. So, I called Glenda back, immediately and they brought Malachi to me for an appointment at 10:00.

Glenda came in, weight Malachi, 14 lbs 13 oz...yep, that's about right...then tried to get his Oxygen. It probably took her about 10 minutes to do that. She just couldn't get a reading. But, when she finally did, it was 94. Not great.

Dr. Young finally came in and we talked about EVERYTHING that had happened. Although I still feel like he was in the defensive mode, this time, he listened to me. I told him everything we've tried (he's not thrilled about the goat's milk) and he, after a lot of talking, told me that he wanted to get Malachi in to see Dr. Higgins or Dr. Feist in Lubbock. They're specialists and should be able to get to the bottom of things. He also said to please just postpone the appointment with Dr. Habersang. He said that he will not hesitate to refer Malachi to him, but he wants to try the pediatric gastroentorologist first. That way, if it doesn't work out, we can cut ties with a Dr. in Lubbock and not a Dr. in Amarillo. Makes sense. They also ordered a HUGE series of bloodwork for Malachi so it was off to BSA we go.

While at BSA lab, we went in the room and Malachi was DEAD asleep. He was so tired. We filled out all of the paperwork and then, they brought him on the table and wrapped him tight in a sheet with his little arm sticking out. (No crying...that's not normal right? I told you he hasn't been himself lately) Then, the idiot nurse (hereinafter referred to as Ursula...remember the Octopus from Little Mermaid?) started talking about this show...you know, Mystery Diagnosis on Discovery Channel? Well...she saw this show where there was a little baby just like Malachi, only younger, that wouldn't keep anything down and was losing weight and he had, like, this disease that only, like, 1 in a million babies have and they had to go to a Dr. in Oklahoma to find out what it was...and they were, like, scared because his cells were, like, attacking themselves. Anyway, she just likes Mystery Diagnosis and maybe we should, like, research that. (Okay, thanks Ursula...that's encouraging) They drew his blood, very little crying, it was over.

We then went to eat at Joe Taco (stick with me, this is going somewhere deep people) right across the street from the hospital. At this point, God started working in a very mighty way. As if the phone call from Terri Glenda wasn't God working in the beginning, He really revealed himself at this point. And, it gave me great peace to know, and be reminded, that He really is orchestrating all of this and STILL is in control. We ran into a friend from church, Andrea Ewing while eating. I have no idea what she does. She came over and was commenting about how big Malachi is getting. It was then that I asked her to pray and told her that we were headed to Lubbock to a specialist. I told her a little about what was going on and she handed me her card. She's a child development specialist who works for...drumroll...Dr. Habersang's office. I told her that I had an appointment with his partner, but that I had to cancel to go to the specialist in Lubbock. She told me that in the future, if we needed to get a second opinion, or couldn't figure it out, to please call her. She told me she would get me into Habersang THAT DAY, if we needed it and to please NOT see his partner, he's NOT as good as Dr. Habersang. Tell me God wasn't working this out. I was fixing to go see a Dr. who wasn't as good as what we needed and forgoing the Dr. that we might need to see, because he wouldn't betray his partner like that, and might not have gotten anywhere.

Thank you God, for intervening, once again on my behalf. You always know what's best. You always know what's coming. You know, right this very second, what's wrong with my son. You know how to fix it and you're going to make sure we get there, as long as it's in YOUR time and on YOUR plan of action. Thank you God for that assurance. This all reminds me of a song that we sing at church a lot. It's Called "For I Know Whom I have Believed" I particularly like the first, second, third...okay, I like the whole song!

Here's what it says!

I know not why God’s wondrous grace
To me He hath made known,
Nor why, unworthy, Christ in love
Redeemed me for His own.

Refrain

But I know Whom I have believ├Ęd,
And am persuaded
that He is able
To keep that which I’ve committed
Unto Him against that day.

I know not how this saving faith
To me He did impart,
Nor how believing in His Word
Wrought peace within my heart.

Refrain

I know not how the Spirit moves,
Convincing us of sin,
Revealing Jesus through the Word,
Creating faith in Him.

Refrain

I know not what of good or ill
May be reserved for me,
Of weary ways or golden days,
Before His face I see.

Refrain

I know not when my Lord may come,
At night or noonday fair,
Nor if I walk the vale with Him,
Or meet Him in the air.

Refrain

I'll update as soon as I find something out about Malachi. Just keep praying, dear friends, that we will be able to get to the bottom of this and the Lord will bring Malachi through and make him into the strong, healthy little boy I used to have!!!

Monday, December 8, 2008

Where are we now?

It's Monday at 1:40p.m. and we haven't had any more spit-up since Saturday. He's holding EVERYTHING down. YEA!!! Saturday he spit up a lot after a couple of his bottles, but I think we know why. He had been getting so hungry that we upped his oz from 5 to 6. I think it was too much for his tummy to take. So, once we backed it back down to 5 oz, he's done great ever since.

Last night, however, he still didn't seem like he was feeling well. He was acting like he was trying to poop, but nothing would come out. So, Thomas and I laid out the old faithful trashbag on the kitchen floor, laid him on his "poop pad" as Thomas calls it, and shoved that enema...okay, I'll stop there. You know the rest. After much screaming, we finally had some movement. It wasn't as much as I would've liked, but I couldn't take much more screaming from my baby. He seemed to be content and went to sleep after his bottle about an hour later. He slept from 7:00-10:30 last night. Then, he woke up at 10:30 hungry, again. So, I got up (yes, we were asleep at 9:15) and fed him again. Usually he'll go RIGHT back to sleep after his bottles at night, but he didn't last night. He would be asleep, hard, in my arms, but as soon as I would put him down, he would start moaning and pushing his legs out again. After struggling with him for about 1 1/2 hours, I got Thomas up and we did ANOTHER enema. (This was actually a liquid glycerin suppository.) FINALLY, we got it ALL out. The poor baby had to push with all his might to get the rest of the "hard" stuff out and then came the soft. So, I feel better now. I think the blockages are gone. Hopefully, he'll start moving on his own now that he's off dairy, getting a laxative and on goat's milk which is supposed to be easier to digest!! (Just a side note - DANG GOAT'S MILK STINKS COMING OUT OF EITHER END!!!) Sorry kiddo - I know I'm puttin' your business all out there, but when you're 20 reading this with your girlfriend, at least I'll have something to laugh about!!!

We also got an appointment with Dr. Habersang for Thursday at 2:00p.m. to discuss what's going on and decide on a plan of action. Now that he's on the goat's milk, the plan of action may be to keep him on the goat's milk and not rock the boat. But, at least I'll be in with a specialist who will LISTEN to me!! I'm feeling quite a bit better about it all!! He's had a GREAT day at daycare today so maybe we're FINALLY on the upswing of all of this.

I knew it would happen eventually, but I wasn't sure WHEN that would be. I'm still not sure we're out of the clear, but at least it's an improvement!!

Thank you to everyone for the prayers. Hopefully when we go to the new Dr. on Thursday he will have gained weight and we will start seeing a little chubby baby again!! I'm ready to NOT be able to feel my son's hip bones or see his spine!!!

Thank you also to Thomas for being so great. These last couple of weeks have been REALLY trying, honey and through all my frustration, you have been so good to me. Last night was hard for both of us and, yet, we got through it. Without you, I would be miserable. Thank you for being my protector, my rock and my encouragement. We WILL survive everything the Devil is throwing at us right now. We have a STRONG foundation in our marriage and we just have to keep that foundation under us! It's when we step out on our own that we're going to fail. I promise to stand by you and with you, the same that I did the day I married you!!

Sunday, December 7, 2008

While we are making progress...

...we are also having setbacks. Yesterday, Malachi woke up in a TERRIBLE mood - Whining, zoning out, sleeping (but only for about 30 minutes at a time) and, overall just not acting like himself. (See above video for what "himself" looks like!)

He laid down, finally, at about 12:30 and slept until about 2:00, so I thought maybe he just needed to get a good nap in. So, it was off to Karter's b-day party at Lolli's house. While there, he managed to spit up 4 times on BOTH of the outfits we had brought. **Sidenote - Goat's Milk STINKS!** He was dazed and staring off into space, not playing with anyone, even his own feet weren't interesting anymore. Then, he started to fuss, so we came back home within about an hour.

Then, after being at home for about an hour (it was about 5:30p.m by this time) he woke up from sleeping in his swing for about another 30 minute nap and had a horribly raspy cry. I immediately decided to take him to the Canyon Clinics because Strep Throat has been going around EVERYWHERE and I just knew that's what it was.

We arrived at the clinics around 6:15 - finally got back to see the Dr. around 7:00 (even though we were the ONLY patients there) and they weighed him and took his temperature. They didn't tell me what the temp was, but I don't think he had one. If he did it was VERY low grade and may have been caused by me holding him in a long-sleeved onesy and a furry blanket. Then came judgment day...the weigh-in. You would think he was getting ready for a wrestling match and had to make weight. The first weigh-in, he was 15 4 3/4 oz. But, that was fully clothed and at his weigh in last Tuesday (on that same scale) he weighed 15 7 3/4 oz naked. So, I stripped him down and they weighed him again...Drum Roll Please...14 13 3/4 oz. My son has officially LOST weight and THAT'S ON GOAT'S MILK SINCE THURSDAY WITH NO MAJOR INSTANCES OF SPIT UP (BARRING YESTERDAY!)

He now weighs only about a pound more than his cutiepie cousin, Elliot who was born a month and a half AFTER him. According to growth chart calculators (and I tried several because I didn't like what I was seeing on each consecutive website) he is in the 11th percentile for his weight. He has been in the 35th percentile!!! Talk about FRUSTRATION!!!!! You can feel his bones when you pick him up. It's just NOT RIGHT!!

So, when the nurse practitioner came in, I started BAWLING and BEGGED her to listen to me. SHE was VERY sympathetic and did something that NO ONE up until this point had done. SHE LISTENED!! She said it's NOT right and recommended that we take Malachi to see Dr. Haabersang (sp?) who is a pediatric intensivist here in Amarillo. She said she would give Malachi a referral Monday morning at 8:00 and that she has seen him do GREAT work with babies!! She also said Malachi has strep throat and put him on the baby equivalent of Z-Pack.

Thankfully, this morning he is in a MUCH better mood and hasn't spit-up since yesterday's bottles. We've switched to the liquid goat's milk upon the recommendation from the Chiropractor. She thinks that will be EVEN EASIER for him to digest and get the nutrients he needs. He's on 1/2 strength and w'ell switch him to full strength a little later today so his tummy is nice and calm again!!

Thomas has been playing with him in the living room and just brought him in to me!! ALL SMILES and giggles. It's GOOD to have at least a semblance of my baby back!!

On another note, it's been really easy for us to get down about all of this, especially me!! I have cried more tears over Malachi in the last month than I think I did my entire pregnancy/stay in the hospital. I just want SO BADLY for him to get better. I think we're on the right track!!

But, all that being said, I don't have ANYTHING to complain about given the situation a couple of our friends are going through. A few months ago, I mentioned a little girl named Cameron having Cancer. She's 3 years old with a twin sister and a baby brother. She has been doing SO well fighting her leukemia that she has quite frankly surprised us all. However, she is undergoing her most intense phase of chemo right now (it's called delayed intensification, if that tells you anything about it) and she is still being a trooper despite bouts of nausea and vomiting, severe hunger due to steroids and taking 17 medications/day. However, I just heard from her dad, Marcus, that she is in the hospital with an infection (they think it's Croup) and is not doing too well. This leaves one of the two parents at home with the other two children while the other one is taking care of Cami in the hospital. The frustrating part is that the children don't go outside, they don't get visitors at their house and they stay home ALL DAY EVERY DAY!! That, in and of itself, would be enough to break anyone. So, they're not sure how this nasty infection found its way in. Please be praying for Marcus, Julie, Olivia and Cameron and sweet Noah that God will protect them. And, please help me to remember that I'm not in NEAR as bad a situation as I could be! (But, on the selfish side...please keep praying for us too!!)

Saturday, December 6, 2008

Progress???

YES YES YES!

It's now been 2 whole days without ONE instance of a major spit-up - minor spit-ups are normal...

He seems to be tolerating the goat's milk VERY well which is a VERY good thing. Mommy and Daddy are very tired and ready to have "Happy Malachi" back!! He's had QUITE a rough day today. We're not sure if he's tired or if he doesn't feel good. I know he hasn't pooped except yesterday when we finally got some out of him in the morning. But, that's all...

We're supposed to go to Karter's birthday party in a couple of hours, but it just depends on how Malachi is doing. I'd like to go, but if he's sleeping in about an hour, when it'll be time to get him up, bathed and changed, he's going to stay that way. He's had Tylenol, so maybe if he's not feeling well, that will help...

Thank you Dr. Hinders for recommending what SEEMS (right now, maybe) to be a solution!!

Friday, December 5, 2008

Day one of Goat's Milk

Okay - so it's more like day 1 1/2

Malachi had his first goat's milk bottle yesterday at 2:45 - No spit up, but it was only about 1/2 strength to let his body get used to the change, so we didn't get too excited.

2nd bottle - 5:45 - No spit up, this was about 3/4 strength - okay, cautious optimism

3rd bottle - 10:30 last night - No burps for the first 4 oz...he's getting really stubborn with those - but when he finally did - a little bit of spit up, nothing abnormal, nothing to worry about

4th bottle - 6:15 this morning - NO SPIT UP!!! Are we on to something? I don't know. He always does pretty well for the first couple of days when we're trying something new, but, overall, I'd say we're at least headed in the right direction.

**UPDATE**

5th bottle - 10:15 this morning - NO SPIT UP!!!

**UPDATE**

For those of you skeptical about goat's milk, there are several websites dedicated to explaining its beneficial properties. Can you believe everything you read on the internet? Nope - so, I've checked out a LOT of websites. The only downside I see is that it is low in B12 and Folic Acid - both of which babies can get in either vitamin form or in foods they eat. Our hope is that Malachi will start holding this down and then we'll start him back on solids - which he LOVES. Here's my favorite website!

He's still really struggling with constipation. He hadn't pooped since Monday night and at 10:30 last night was REALLY uncomfortable. Suppository number 1 didn't do much, just a couple of REALLY hard little balls came out - Then, Suppository number 2 went in and stayed in until we woke him up to feed him. Still no poop. Then, Suppository number 3 went in, came out with a little bit more poop, and (sorry if this is tmi or too gross) it went BACK in so it could hopefully do some more work. FINALLY, after about 15 minutes of rubbing his tummy really hard to break everything up, he pooped some. It wasn't as much as I KNOW is in there, but it's a start. Hopefully he'll blow out his pants today at daycare!!

We'll update more when we can!!

Thursday, December 4, 2008

Promised Updates

We took Malachi back to the Chiropractor one last time today. What happened? He threw up all over her table. One more doctor has seen it!!

What did she say? GOAT'S MILK GOAT'S MILK GOAT'S MILK!! She's been begging us for a couple of weeks, but I've been hesitant for several reasons.
  1. It's something very different than what most people (here in the US anyway) give their babies.
  2. I've read a lot on the internet about it and a lot of people say it's lacking in the nutrients/vitamins babies need. Her answer to that? Breastfed babies only get a portion of the nutrients the mother eats. Do all breastfeeding mothers eat perfectly and get the perfect amount of nutrients and vitamins they need, much less their babies need? NO. (Any breastfeeding mothers, please don't take this as a slam, I think the fact that you are breasfeeding is wonderful and I think it's what is best for your children, it just wasn't right for us - Every mother has to make the decision she has to make about breastfeeding vs bottlefeeding and we made the decision that was right for us!)
  3. My Dr. isn't crazy about the idea. But, I'm not crazy about the excuse that sometimes babies just spit up. And, ultimately, he's my baby and I've got to make the decisions I've got to make about what's best for him!

The Chiropractor actually looked at what he vomited up and she really made good sense. I thought that the reason that his spit-up/vomit was clear sometimes is because he's drooling more. Nope, the formula is heavy, settles to the bottom of his little stomach and he's vomiting up the water. Then, the water is gone, all his little tummy is left with is formula to digest and there's hardly any liquid left. Hence, the constipation. Is it all REALLY this simple? I don't know. I'M HOPING SO!!! It really makes perfect sense.

Goat's milk is supposed to be easier to digest for babies (actually, for anyone) and is closer to human milk than cow's milk. Click here for more information.

So, off to Eat Rite today at lunch for Goat's milk.

Wish us Well!!!

Wednesday, December 3, 2008

Anyone have a carpet cleaner???

Yep - Malachi's still throwing up all the time. What did the doctor say? Well...some babies just spit up. We'll do weight checks every week and if he's losing weight, we'll see about getting him into a pediatric gastroentorologist.

Now, I ask, WHY WHY WHY do we have to wait for him to lose weight? He's gone about a month without gaining...that's not normal right? The Chiropractor is begging us to put him on goat's milk, but the pediatrician isn't crazy about that. We tried soy...it was a no go. He THREW UP ALL OVER Lolli yesterday when she took him to get weighed. The Dr. and the Nurse even saw it and said that wasn't normal. (We're taking him to Canyon Clinics instead of driving ALL THE WAY up to Amarillo every week just for a weight check - We love you Dr. McAfee) Mac said he'd keep an eye on it and he'd refer us to an internist if he needed to. So, we've got a pediatrician, a general practitioner and a chiropractor all WATCHING. WHY AREN'T WE DOING??? I don't know, I guess they've got to watch, but I'm so frustrated at the explanation that some babies just spit up. In the meantime, although he's not getting dehydrated, he certainly isn't as healthy as he should be. Zantac isn't touching anything and mommy and daddy are getting really upset. How many weeks are THEY willing to watch him not get any better?

I'm so afraid this is going to stunt his growth or damage his esophagus or something worse...what? I don't know...just something worse.

Something has changed in the last month or so and I want to know WHAT dang it. I don't care how much money we have to spend, how many tests have to be run or what else has to be done. I just want Malachi to be better.

Sorry, I know my posts have been so down lately, it's just so frustrating when you don't feel like your child's doctor is taking you seriously, but your motherly instincts are telling you not to give up.

I'll post updates if/when I get them

Monday, December 1, 2008

Not Me Monday

Okay, so I've skipped a couple of weeks of Not Me Monday. To tell you the truth, sometimes I wish I was NOT ME. Sometimes with a screaming, fussy, uncomfortable, upset baby, I wish I was not me. But, alas, I AM me, so here we go with another week's worth of MckMama's Not Me Monday.

I am NOT going to begin this post by shamelessly plugging my cousin, Angela's, adorable business, Sophie's Sassy Stitches , in which she makes ADORABLE handmade clothing for little girls (and a few for special little boys too!!) Check her out as she just put out some REALLY CUTE new Christmas outfits!!

I most certainly did not have a really rough week last week with Malachi. He was NOT fussy, NOT spitting up and NOT taken to the Dr. 5 times over the course of one week. He also is NOT at the Chiropractor right now with my mom for number 6 visit. AND, I am NOT waiting for the clock to hit 8:30 to call the Dr. again and explain to them, AGAIN, that this ISN'T working and something ISN'T RIGHT!!!!!!!!!

And now, I am not sitting at work, trying diligently not to let the tears that have welled up in my eyes make it out and risk looking like a hysterical mother after fighting as hard as I have to get some respect for my capabilities.

I am not praying right now begging God to give me a different job, one that I will be happy at and one in Canyon so I can be closer to my precious little boy.

We did not have a great time with all of our family on Thanksgiving. We most certainly did NOT get up and go to Lolli and Pops' house early Thanksgiving morning to remake "Ninny pie" for the 2nd time because the first one didn't set up. Nope, not me, I'm a perfect baker. (The 2nd one did and it was delicious!)

We did not play with our new "Magic Bullets" all weekend making frozen hot chocolate, pirate juice (ask my 4 year old nephew) and omelets.

We did not go shopping this weekend and get some new curtains, some embellishments for our bedroom and Christmas presents for Kadi and Karter.

My husband and I did not, nope not us, work on getting together a list of all of the things that we would like to get done with our house before the new year and then proceed to sit down, watch a House episode I recorded and then leave the house without getting a single item accomplished.

But, we also did not leave to go to Babies R Us to get Malachi a brand new carseat. No more infant carriers for us!!! He's graduated on to the Big daddy of carseats. (pictures will most certainly NOT be posted once I take them)

Finally, we did not lay down in bed last night, baby sleeping down the hall and profess to each other how happy we are to be together and how glad we are that we are rebuilding our relationship after what has proven to be a difficult year (for several reasons.) We did not hold each other and go to sleep peacefully, knowing that if all else fails, we will have each other and all we need is Daddy, Mommy and Mali to make it. Scratch that, all we need is GOD, Daddy, Mommy and Mali to make it!
And that's all I've got folks of Not Me Monday. Check back next week to see if I'm on or off the bandwagon!!

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This past week (and weekend) did NOT go completely horribly, though. Although Thanksgiving was a little rough for Malachi, Friday was great. We bought a sling/backpack type contraption to carry Malachi around in and he LOVED it. He was looking around and overall in a GREAT mood. I felt like Friday I had my little boy back. He played in the floor Friday night and just giggled down to his toes with his daddy. It was the BEST!!!
Saturday, though, it all started again. I've already gotten to speak to the Dr.'s office again and the nurse is supposed to be calling me back. I really am frustrated and I really DON'T know what to do. I guess our next step is trying another different formula, soy or goatsmilk maybe? We've had him on Zantac for a week and it just isn't making a difference AT ALL. I tried giving him cereal this morning and just received a call from my mom that it's all coming back up. So, WHAT NOW??? I've gotten a few messages from people who had some suggestions, but I think I'm going to see about getting Malachi into an internist to find out what's going on and why my 6 month old can't hold anything down!! Again, please just pray that God will get us through this hard time and that He will put His hands on Malachi and either heal him, or make it CLEAR to us what's wrong and give us a solution so we can get back to normal!
On the Way to Aunt Gra and Uncle Jim's House for Thanksgiving

Cousin MoMo and Malachi - I don't know which face is worse??

Our Thanksgiving Portrait

L to R - Hannah Grace, Kelly, Aunt Gradena, MoMo, Lolli and Mommy

RAARRRRR - You T-Rex have nothing on my gums of steel!!!